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Running head: DISCLOSURE OF STATUS TO CHILDREN LIVING WITH HIV 
 
UNIVERSITY OF GHANA, LEGON 
DEPARTMENT OF PSYCHOLOGY 
 
 
DELIGHT ABLA KLUTSEY 
10417008 
 
TO DISCLOSE OR NOT TO DISCLOSE THE HIV/AIDS STATUS OF 
CHILDREN: HEALTH-RELATED OUTCOMES AND EXPERIENCES OF 
CAREGIVERS. 
 
 
 
 
THIS THESIS IS SUBMITTED TO THE UNIVERSITY OF GHANA, 
LEGON IN PARTIAL FULFILMENT OF THE REQUIREMENT FOR THE 
AWARD OF MPHIL IN CLINICAL PSYCHOLOGY. 
 
JULY,  2019
      
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DISCLOSURE OF STATUS TO CHILDREN LIVING WITH HIV 
DECLARATION 
I, Delight Abla Klutsey, hereby declare that except for the references made to other studies which 
have been duly acknowledged, this thesis titled “To Disclose Or Not To Disclose The HIV/AIDS 
Status Of Children: Health-Related Outcomes And Experiences Of Caregivers” is a true 
reflection and product of my own research which was undertaken with the supervision of two 
faculty members of the Department of Psychology by names Dr. Margaret Amankwah-Poku and 
Dr. Kwaku Oppong Asante in pursuant of an MPhil  Degree in Clinical Psychology. I also declare 
that this thesis has neither in part nor in whole been presented for another degree anywhere.  
 
 
………………………………..                                                      ………………………………. 
DELIGHT ABLA KLUTSEY                                                                  DATE 
 
 
……………………………………                                             ………………………………….. 
DR. MARGARET AMANKWAH-POKU                                           DATE    
 
 
………………………………………                                           ……………………………………    
DR. KWAKU OPPONG ASANTE                                                       DATE         
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DISCLOSURE OF STATUS TO CHILDREN LIVING WITH HIV 
DEDICATION 
This work is first and foremost dedicated to my loving parents Mr. Cornelius Atsu Kwaku Klutsey 
and Mad. Emelia Ami Akorttia for their belief in me and support in sponsoring my education up 
to this level. This thesis is a product of the sacrifices you have made for me to get here. My dream 
came true because of your love, care, and support.  
 
It is also dedicated to my siblings Desire Mawutor Klutsey and Ellen Eyi Klutsey for their immense 
contribution and support which has made the work seen the light of day.   
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ACKNOWLEDGEMENT 
“To God be the glory, great things He has done” (MHB 313) 
My utmost gratitude goes to God Almighty, the God of all possibilities, for His love, mercy, 
wisdom, guidance, and provision throughout this two year MPhil journey and the successful 
completion of this thesis. Though encumbered with many hurdles and challenges along the 
journey, His Grace was more than sufficient for me and for this, I am most grateful.   
 
My heartfelt gratitude also goes to my supervisors, Dr. Margaret Amankwah- Poku and Dr. Kwaku 
Oppong Asante for their invaluable guidance, patience, attention, support, constructive criticisms 
and erudite contributions which have made this thesis see the light of day. God bless you.  
 
I also acknowledge Mr. Ebenezer Tetteh for his efforts, assistance, and support, particularly in the 
data collection process.  God richly bless and replenish all that you lost in greater folds for the sake 
of this thesis.  
I again appreciate my MPhil colleagues Daniel Agyei Kyeremeh, Fanny Koomson, and Nella 
Otoobea Anakwah. Thank you for your love and support throughout these years. The sleepless 
nights and group studies have paid off.  
 
To my friends Nicolien Dorgbefu and Pearl Zoryeku, I say God richly bless you all. Thanks for 
being there and making this journey less lonely.   
 
  
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ABSTRACT  
 
It has been shown that disclosure of status to children living with HIV has a beneficial effect on 
health outcomes in children living with HIV. In most sub-Saharan African nations, however, the 
prevalence of disclosure remains low, leading to poor compliance or adherence and adverse 
psychological results in these children. This study explored the disclosure experiences among 
caregivers of children living with HIV and the influence of disclosure on health outcomes in both 
children and their caregivers. Using an exploratory sequential mixed method design, 15 
caregivers between the ages of 27 and 55 years comprising 4 males and 11 females with a mean 
age of 41 years (SD= 6.23) were interviewed in the qualitative stage, while 155 HIV-positive 
children between 6 – 15 years of age  with a mean age of 9.55 years (SD=2.72) and their 
caregivers with mean age of 41.60 years (SD= 10.38) were administered standardized 
questionnaires measuring adherence to medication, children's psychological well-being, 
caregiver burden, and caregivers’ psychological health. Results indicated that age/maturity, 
stigma, and fear of child telling others about the diagnosis were the main reasons for non-
disclosure whereas non-adherence, curiosity, and transition to high or boarding school were some 
of the factors that prompted disclosure. Disclosure of HIV status led to improved adherence and 
psychological wellbeing in children living with HIV. However, disclosure did not affect health 
outcomes in caregivers. Age was an important predictor of disclosure, and duration of disclosure 
mediated the relationship between disclosure and psychological wellbeing.  Inadequate finances, 
anxieties about lifelong medication for children and high levels of psychological distress and 
burden were the challenges reported by caregivers. These findings emphasize the need for 
disclosure of status among children living with HIV using an interdisciplinary approach.   
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TABLE OF CONTENTS 
  
DECLARATION ........................................................................................................................ i 
DEDICATION ........................................................................................................................... ii 
ACKNOWLEDGEMENT ......................................................................................................... iii 
ABSTRACT ............................................................................................................................. iv 
TABLE OF CONTENTS ............................................................................................................v 
LIST OF TABLES .................................................................................................................. viii 
LIST OF FIGURES .................................................................................................................. ix 
CHAPTER ONE .........................................................................................................................1 
INTRODUCTION ......................................................................................................................1 
1.1 Overview ...........................................................................................................................1 
1.2 Problem Statement .............................................................................................................9 
1.3 Aims of the Study ............................................................................................................ 10 
1.4 Specific Objectives .......................................................................................................... 10 
1.5 Relevance of the Study .................................................................................................... 11 
CHAPTER TWO ...................................................................................................................... 13 
LITERATURE REVIEW .......................................................................................................... 13 
2.1 Introduction ..................................................................................................................... 13 
2.2 Theoretical Frameworks .................................................................................................. 13 
2.2.1 Consequences Theory of HIV/AIDS Status Disclosure .............................................. 13 
2.2.2 Social Influence Theory of HIV Disclosure. .............................................................. 15 
2.3 Review of Related Studies ............................................................................................... 16 
2.3.1 Experiences of HIV/AIDS status disclosure by caregivers ......................................... 16 
2.3.2 Disclosure and Health Outcomes in Children ............................................................. 20 
2.3.3 Disclosure and Health Outcomes in Caregivers ......................................................... 26 
2.4 Rationale ......................................................................................................................... 28 
2. 5 Research Questions ......................................................................................................... 29 
2.6 Hypotheses ...................................................................................................................... 29 
2.7 Hypothesized Conceptual Model...................................................................................... 30 
CHAPTER THREE ................................................................................................................... 31 
METHODOLOGY.................................................................................................................... 31 
3.1 Introduction ..................................................................................................................... 31 
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3.2 Research Design .............................................................................................................. 31 
3.3 Research Setting .............................................................................................................. 32 
3.4 Population, Sample and Sample Determination ................................................................ 34 
3.5 Inclusion Criteria ............................................................................................................. 36 
3.6 Sampling Technique ........................................................................................................ 36 
3.7 Materials .......................................................................................................................... 37 
3.7.1 Interview Guide ......................................................................................................... 37 
3.7.2 Measures ................................................................................................................... 37 
3.8 Pilot Testing .................................................................................................................... 41 
3. 9 Procedure for Data Collection ......................................................................................... 42 
3.10 Ethical Considerations ................................................................................................... 44 
3. 11 Data Analysis ................................................................................................................ 44 
3.11.1 Thematic Analysis ................................................................................................... 44 
3.11.2 Quantitative Analysis .............................................................................................. 46 
CHAPTER FOUR ..................................................................................................................... 48 
RESULTS ................................................................................................................................. 48 
4.1 Introduction ..................................................................................................................... 48 
4.2 Qualitative Results ........................................................................................................... 48 
4.2.1 The Diagnosis of HIV in Children ............................................................................. 49 
4.2.2 Nuances in Disclosure ............................................................................................... 54 
4.2.3 Disclosure and Health Outcomes ............................................................................... 64 
4.2.4 Challenges and Support Systems for Caregivers ........................................................ 70 
4.3 Quantitative Results ......................................................................................................... 77 
4.3.1 Socio-demographic Characteristics of Participants .................................................... 77 
5.3.2 Relationship Among Study Variables ........................................................................ 78 
4.3.3. Hypothesis One and Two.......................................................................................... 79 
4.3.4 Hypotheses Three and Four ....................................................................................... 82 
4.3.5 Hypothesis Five ......................................................................................................... 84 
4.3.6 Hypothesis Six .......................................................................................................... 87 
4.3.7 Hypothesis Seven ...................................................................................................... 88 
4.3.8 Summary of Quantitative Findings ............................................................................ 91 
CHAPTER FIVE ...................................................................................................................... 93 
DISCUSSION ........................................................................................................................... 93 
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5.1 Introduction ..................................................................................................................... 93 
5.2 Diagnosis of HIV in Children living with HIV ................................................................. 93 
5.3 Disclosure of Status to Children living with HIV ............................................................. 94 
5.3 Factors Promoting Disclosure and Non-Disclosure in Children living with HIV .............. 95 
5.4 Disclosure and Health Outcomes in Children living with HIV ......................................... 99 
5.5 Duration Of Disclosure and Health Outcomes In Children With HIV ............................. 101 
5.6 Disclosure and Health Outcomes in Caregivers .............................................................. 102 
5.7 Challenges and Support Systems of Caregivers of children living with HIV ................... 103 
5.8 Limitations of the Study ................................................................................................. 106 
5.9 Recommendations for Future Research .......................................................................... 107 
5.10 Implications for Clinical Care and Practice .................................................................. 108 
5.11 Conclusion ................................................................................................................... 109 
REFERENCES ....................................................................................................................... 111 
APPENDICES ........................................................................................................................ 133 
Appendix A- Ethical Clearance from Ethics Committee for the Humanities (ECH) ............. 133 
Appendix B - Introductory Letter from the Department of Psychology ................................ 134 
Appendix C- Ethical Clearance from the Korle Bu Teaching Hospital ................................. 135 
Appendix D - Ethical Clearance from the Ghana Health Service- Greater Accra Regional    
Directorate ........................................................................................................................... 136 
Appendix E- Questionnaires ................................................................................................ 137 
Appendix F – Semi-Structured Interview Guide................................................................... 146 
 
 
  
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LIST OF TABLES 
Table 3.1 Demographic Characteristics of Participants Interviewed 
Table 3.2 Summary of Descriptive Statistics, Normality and Cronbach Alpha of the Various 
Measures  
Table 4.1. Summary of themes and subthemes.  
Table 4.2 Socio-demographic Information of Caregivers and Children  
Table 4.3 Correlation Matrix of Various Study Variables 
Table 4.4 MANOVA tests for group differences between disclosed and non-disclosed children on 
medication adherence and psychological wellbeing 
Table 4.5 Table of significant univariate effects of disclosure on medication adherence and 
psychological wellbeing 
Table 4.6 MANOVA tests for group differences between caregivers who have disclosed and 
those who have not on caregiver burden and psychological health. 
Table 4.7 Table of univariate effects of disclosure on caregiver burden and psychological health 
Table 4.8 Mediational analysis of disclosure and medication and psychological wellbeing via the 
duration of disclosure 
Table 4.9 Hierarchical regression of child’s age as a predictor of disclosure of status in children 
with HIV while controlling demographic variables in caregivers and children 
  
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LIST OF FIGURES 
Figure 1. Hypothesized Conceptual Model 
Figure 2 Observed Model for Quantitative Findings 
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CHAPTER ONE   
INTRODUCTION 
 
1.1 Overview 
 
The abbreviations HIV and AIDS represent, respectively, human immunodeficiency virus 
and acquired immune deficiency syndrome. The disease is a chronic one and a world health 
challenge (Fajardo-Ortiz et al., 2017) because like many other chronic conditions, HIV/AIDS has 
no cure and people diagnosed with the disease have to manage it with drugs throughout their 
lifespan (Deeks, Lewin, & Havlir, 2013; Siegel & Lekas, 2002). The condition is also a world 
health challenge because it has claimed millions of lives worldwide since it was discovered over 
three decades ago. Living with HIV has implications on individuals, families, societies and nations 
at large (Fajardo-Ortiz et al., 2017). 
The HIV virus is part of a class of viruses called retroviruses which fight and destroy the 
cells of the immune system, in particular the T lymphocyte cells (CD4 cells), suppressing its ability 
to fight diseases and infections thereby causing a gradual deterioration of immune function 
(Duggal, Chugh, & Duggal, 2012; Klimas, Koneru, & Fletcher, 2008). In healthy individuals, CD4 
cell count ranges from 800 to 1200 for every cubic millimeter of blood, however, once the HIV 
virus enters the T lymphocyte cells, it begins to destroy them leading to a decrease in number 
(Williams et al., 2006). The HIV virus progresses to AIDS in a few years, usually between 6-10 
years if it remains untreated in an individual (Bagby et al., 2015; Langford, Ananworanich, & 
Cooper, 2007).  
It has been almost three decades and a half since the HIV/AIDS epidemic started, but the 
disease continues to be a major public health issue in sub-Saharan Africa because most of the 
problems related to disease prevention and management are more common in the sub-region 
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(Kharsany & Karim, 2016; Kimanga et al., 2014). Although sub-Saharan Africa has merely 12% 
of the worldwide prevalence, it has been shown to bear an overwhelming 71% of the global illness 
burden (Kharsany & Karim, 2016; Short & Goldberg, 2015). The most prominent of this global 
burden is that relating to pediatric HIV (Ubesie, 2012) which is the infection of HIV in neonates, 
children, and adolescents (Burchett & Pizzo, 2007).  
Statistics indicate that an estimated 1.8 million children and adolescents below 15 years of 
age live worldwide with the disease, 91% of whom reside in sub-Saharan Africa (UNAIDS, 2018; 
UNICEF, 2018). Also, approximately 66% of the new infections that occurred globally in both 
children and adults in 2017 were in sub-Saharan Africa (UNAIDS, 2018).This implies that the 
sub-region is home to almost 2 million children with HIV, mostly infected during pregnancy or 
through breastfeeding by their mothers (Kassa, 2018; Wudineh & Damtew, 2016). The statistics 
again show that an estimated 12.2 million children and adolescents under the age of 18 years have 
lost either one or both of their parents to HIV in 2017(UNICEF, 2018). In Ghana, as of 2017, a 
total of 313,063 individuals were living with HIV and AIDS (Ghana AIDS Commission, 2017). 
Of this figure, 33,000 were children  (Ghana AIDS Commission, 2017) most of whom are infected 
by mother-to-child transmission (Dako-Gyeke et al., 2016). Children living with HIV face many 
medical and psychosocial problems that greatly contribute to the worldwide burden of HIV. 
Among the many problems faced by children living with HIV, poor access to antiretroviral therapy 
due to poverty, stigma and low levels of HIV disclosure have been highlighted as main 
psychosocial issues in sub-Saharan Africa related to pediatric HIV (Hope & Fraderick, 2015; 
Ubesie, 2012; Vranda & Mothi, 2013). 
A diagnosis of HIV/AIDS some few decades ago meant death was near and inevitable 
because it had no cure and there were no efficient vaccines to combat it. Although a cure for the 
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disease has still not been found,  significant strides have been made over the years in developing 
vaccines to treat and manage the condition (Kharsany & Karim, 2016; Nachega, Uthman, Mills, 
& Quinn, 2012; Palmisano & Vella, 2011). The advent of antiretroviral therapy (ART) however, 
has shifted the HIV epidemic from a lethal or fatal disease to a long-term or chronic disease that 
can be managed, resulting in a substantial reduction in HIV-related fatalities, a decrease in mother 
transmission to children and new infections (Kharsany & Karim, 2016; Nachega et al., 2012; 
Palmisano & Vella, 2011). However, in mitigating the destructive impacts of the HIV virus, the 
efficacy of antiretroviral therapy depends mainly on the capacity or ability of patients to adhere 
strictly to prescribed regimens or dozes (Iacob, Iacob, & Jugulete, 2017; Letta, Demissie, Oljira, 
& Dessie, 2015; Silva, Dourado, Brito, & Silva, 2015; Wasti, Simkhada, Randall, Freeman, & van 
Teijlingen, 2012). 
Antiretroviral treatment regimen adherence increases the amount of CD4 cells in the 
bloodstream (as indexed by CD4 count test) which are destroyed by the HIV virus. It also decreases 
the quantity of the HIV virus in the bloodstream or what is termed as “viral load” and slows disease 
progression (Erb, Battegay, Zimmerli, Rickenbach, & Egger, 2000). However, adherence to ART 
regimens has generally been unsatisfactory. In some studies, it has been shown that, across 
different populations, adherence ranges between 27% to 80% instead of the required 95% (Iacob 
et al., 2017; Nsheha, Dow, Kapanda, Hamel, & Msuya, 2014; Simoni et al., 2007; Vreeman, 
Wiehe, Pearce, & Nyandiko, 2008; Wadunde et al., 2018). Adherence in children and adolescents 
living with HIV is also reported to be suboptimal owing to the fact that only a minute fraction of 
these children are genuinely aware of their status (Ammon, Mason, & Corkery, 2018; Mehta, 
Ekstrand, Heylen, Sanjeeva, & Shet, 2016). Though studies on antiretroviral therapy coverage and 
adherence are limited, it has been found that barely a small proportion of children with HIV obtain 
optimum adherence and that adherence in adults is better compared to children (Ammon et al., 
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2018; Nsheha et al., 2014). For instance, Ammon et al. (2018) in a systematic review reports 20.7 
% adherence rate across sub-Saharan Africa and Nsheha et al. (2014) reported a 24.6% adherence 
rate in Tanzania. Also, the fact that adherence in children and adolescents with HIV depends 
mostly on their parents or caregivers makes optimum adherence more challenging (Akahara, 
Nwolisa, Odinaka, & Okolo, 2017; Endalamaw, Tezera, Eshetie, Ambachew, & Habtewold, 
2018). There are several determinants of poor adherence in children with HIV. Key among these 
are caregiver forgetfulness and illness,  poor socioeconomic status, side effects of antiretroviral 
drugs and non-disclosure of HIV status (Nyogea et al., 2015; Ugwu & Eneh, 2013; Wadunde et 
al., 2018). 
Disclosure of status is one of the pertinent issues in the management of the HIV epidemic. 
It has also been found to be a major psychosocial challenge encountered by individuals living with 
HIV/AIDS (Li, De Wit, Qiao, & Sherr, 2015; Madi et al., 2015; Vaz et al., 2011). This is due to 
the fact that disclosure can have both good and bad outcomes or consequences. Pediatric disclosure 
refers to a child or an adolescent’s awareness of his/her HIV status or diagnosis. It could also mean 
a child having awareness about the HIV status of his/her parent or caregiver, or a child informing 
others willingly about her or his diagnosis (Vreeman, Gramelspacher, Gisore, Scanlon, & 
Nyandiko, 2013). In this thesis, disclosure will refer to a child’s knowledge or awareness of his or 
her HIV status or diagnosis. This form of disclosure has been found to be essential in the 
management of HIV in the long term and movement into adolescence and adulthood care 
(Vreeman et al., 2013, 2014) and it is considered a significant precondition for improving health 
outcomes in children living with HIV (Gyamfi, Okyere, Enoch, & Appiah-Brempong, 2017; 
Hayfron-Benjamin, Obiri-yeboah, Ayisi-addo, Siakwa, & Mupepi, 2018; Wiener, Mellins, 
Marhefka, & Battles, 2007).  
 
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Any change in the health of an individual, a  group of people or population, which is wholly 
or partially attributable to an intervention or series of interventions is defined as a health outcome 
(Sansoni, 2016).  This change in individuals can be measured using varying methods including 
clinical indicators, patient-reported outcome indices, health performance indicators and 
standardized clinical evaluations (Sansoni, 2016). Examples of health outcomes may include 
reduced mortality or morbidity, controlled blood pressure, optimum medication adherence, 
reduced viral load, quality of life, psychological wellbeing and psychological health, etc. 
Disclosure of status has been reported to be related to the following health outcomes in HIV-
positive children: increased adherence to antiretroviral treatment (Kidia et al., 2014; Odiachi, 
2017), improved accessibility to support services,  open discussions within the family setting 
(Hayfron-Benjamin et al., 2018; Vaz et al., 2011; Wiener et al., 2007) and improved psychological 
wellbeing (Gyamfi, Okyere, Appiah-Brempong, Adjei, & Mensah, 2015; Nichols, Steinmetz, & 
Paintsil, 2017). 
Burns (2016) explains psychological well-being as the inter- and intra-individual levels of 
beneficial functioning that may include a relationship with others and self-referential or reflexive 
attitudes that comprise a feeling of mastery and personal development.  This implies that 
psychological well-being is attained if one is able to function positively by having a good 
relationship with others and attaining happiness within which translates to personal growth, 
mastery, and development. In the study of psychological well-being, there are two wide 
approaches, namely the hedonic and eudaimonic approaches (Kahneman, Diener, & Schwarz, 
1999; Ryan & Deci, 2001; Ryff, 1989, 2013; Ryff & Keyes, 1995). The hedonic view or approach 
regards psychological well-being as the quest for a happy existence or happiness whereas the 
eudaimonic view believes in the realization of one's potential and living a meaningful life (Chen, 
Jing, Hayes, & Lee, 2013; McMahan & Estes, 2011; Vázquez, Hervás, Rahona, & Gómez, 2009). 
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Thus, psychological wellbeing encompasses both the ability to experience positive affects or 
emotions and ability to flourish in the face of life’s difficulties, achieving significant goals, 
growing and evolving as an individual, and building quality connections with others. There are 
many models of psychological wellbeing but one of the most cited is by Ryff (1989). According 
to Ryff (1989), there are six primary aspects of well-being: independence, personal growth, 
beneficial interactions, mastery of the environment, the purpose of life and self-acceptance. An 
individual is therefore said to have optimum wellbeing when he or she is able to strike a balance 
between these different dimensions. Disclosure, therefore, aids children to achieve optimal 
psychological wellbeing as they are able to gain mastery and a sense of purpose with particular 
reference to their health while striving for personal growth and development in other facsets of 
their lives. 
Disclosure also has an association with certain outcomes in caregivers such as the burden 
of care and psychological health (Asadullah, Kamath, Pattanshetty, Andrews, & Nair, 2017; 
Bachanas et al., 2001). In Ghana, poor health outcomes have been reported for both HIV positive 
children and their caregivers. (e.g. Doku, 2016; Doku & Minnis, 2016; Nichols et al., 2019). High 
rates of antiretroviral non-adherence, as well as symptoms of depression and other psychiatric 
disorders, have been reported in children living with HIV in Ghana ( Doku & Minnis, 2016; 
Nichols et al., 2019). Similarly, peer problems and delinquency have also been reported in children 
affected by HIV (Doku, 2016). Caregivers of children living with HIV have also been reported to 
have varying degrees of psychological distress and burden (Gyamfi et al., 2017). 
The World Health Organization (WHO) acknowledges and recognizes the significance of 
disclosure and states that non-disclosure of HIV status to children living with the disease affects 
their wellbeing as well as access and adherence to antiretroviral treatment and other health-related 
outcomes (WHO, 2011). The WHO, therefore, recommends that all children with HIV who are of 
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school-going age should begin the process of being informed of their status (WHO, 2011). 
However, HIV status disclosure to children affected with the disease continues to be a challenge 
in many countries with low and middle income especially those in sub-Saharan Africa including 
Ghana (Madi et al., 2015; Vreeman et al., 2013). Studies that assessed the disclosure prevalence 
rates among caregivers in Ghana found that disclosure rates are as low as 21% (Kallem, Renner, 
Ghebremichael, & Paintsil, 2011) and 33.3 % (Gyamfi et al., 2017) respectively. Several reasons 
account for these low prevalence rates of disclosure. In studies that have examined the reasons or 
barriers to disclosure, it has been found that, the reasons most mentioned or referenced for not 
disclosing children's HIV status include: fear of disclosure affecting the child's psychological well-
being, fear that the child might not keep the diagnosis confidential, fear of being blamed for 
infecting the child, stigma, and the assertion that the child is not old enough to understand the 
meaning of the disease (Gyamfi et al., 2017; Vreeman et al., 2014). Caregivers are therefore faced 
with the dilemma of whether ‘to disclose or not to disclose’ the status of their children to them.  
The welfare of children living with HIV depends greatly on their primary caregivers or 
parents who aid in providing most health needs including ensuring adherence to drugs, etc. 
Children with HIV need support from their primary caregivers for social and emotional 
development (Pacheco, Nobre, Gomes, Xavier, & Aquino, 2016). A primary caregiver is “a person 
who provides ongoing practical assistance with activities of daily living to a friend, partner, or 
family member” (Lua & Mustapha, 2012 p. 197). Providing all these needs for a child with HIV 
can be draining, burdensome and exhausting for the caregiver. It suggests that caregivers of 
children with HIV are likely to face several burdens in attending to the health needs of these 
children. Caregiver burden according to George and Gwyther (1986) can be defined as “the 
physical, psychological or emotional, social, and financial problems that can be experienced by 
family members caring for impaired relatives” (p. 253). Studies have revealed that caregivers 
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report varying degrees of psychological distress and burden (Asadullah et al., 2017; Bachanas et 
al., 2001; Osafo, Knizek, Mugisha, & Kinyanda, 2017).  Some of the common distress reported 
by caregivers include stress, anxiety, and depression owing to the many psychosocial problems 
they face while caring for such children including poverty, the dilemma of disclosure, stigma, etc. 
(Asadullah et al., 2017; Osafo et al., 2017).  One reason that contributes to this distress in 
caregivers is the lack of disclosure. This is because non-disclosure creates anxieties and tension 
within the family setting as there are no open discussions within the family about the child’s 
condition (Kyaddondo, Wanyenze, Kinsman, & Hardon, 2013; Negese et al., 2012; Wiener et al., 
2007). Therefore, when disclosure is made, these distress, burden, and tensions are likely to be 
eased hence there are open communications about the child’s conssdition. 
To summarize, status disclosure to children living with HIV is a pertinent issue faced by 
caregivers. Disclosure has been reported to be related to adherence and psychological wellbeing 
in children with HIV. It is similarly related to burden and psychological health in caregivers. A 
majority of caregivers find disclosure a challenge. Given that poor health outcomes have been 
reported in both children with HIV and their caregivers, it is crucial to understand how disclosure 
of status to children with HIV influences adherence and wellbeing in these children. It is also key 
to understand the experiences of these caregivers and how disclosure affects their psychological 
health and burden because the roles of caregivers are very vital in the care of these children and 
cannot be underestimated. However, this has not been thoroughly investigated because studies on 
disclosure have mainly focused on the post-disclosure experiences and health of children with HIV 
to the neglect of caregivers (Baker et al., 2018; Beck-Sagué et al., 2015; DeSilva et al., 2018; 
Lorenz et al., 2016). Hence this study will focus on health outcomes in both children and their 
caregivers.  
 
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1.2 Problem Statement 
 
 HIV status disclosure to children has several benefits namely: improved adherence to 
antiretroviral therapy, improved psychological health and wellbeing, enhanced access to support 
services and open family discussions or communications (Gyamfi et al., 2015; Kidia et al., 2014; 
Wiener et al., 2007).  However, disclosure of status to children infected with HIV continues to be 
a huge problem in most sub-Saharan African countries including Ghana (Gyamfi et al., 2017). 
While disclosure is encouraged and recommended for children of school-going age by 
professionals and health institutions such as the World Health Organization, a large proportion of  
caregivers shy away from it for different reasons, some of which include, stigma, fear of disclosure 
causing psychological harm to the child and fear of blame from the child (Vreeman et al., 2013).  
The problem of non-disclosure of status has resulted in unsatisfactory health-related 
outcomes in children living with HIV (Ammon et al., 2018; Doku & Minnis, 2016; Doku, 2016; 
Nichols et al., 2019). In relation to antiretroviral adherence in  Sub Saharan Africa, it has been 
shown that children with HIV are able to achieve only 20.7% adherence as compared with the 
required 95% for optimal physical health (Ammon et al., 2018). In Ghana, a high prevalence of 
antiretroviral non-adherence and poor psychological health outcomes has been reported in children 
with HIV (Nichols et al., 2019).  For instance, research has indicated that children with HIV or 
affected by HIV have a higher prevalence of developing psychological or psychiatric disorders 
(Doku & Minnis, 2016; Vranda & Mothi, 2013). Common among the psychological disorders in 
children with HIV include depression and other mood disorders, conduct disorders, oppositional 
defiant problems, anxiety disorders, and attention deficit hyperactive disorder (ADHD) (Bizimana 
et al., 2014; Vranda & Mothi, 2013). Non-disclosure, therefore, can have a detrimental effect that 
can greatly affect the health of infected children. It is, therefore, necessary to investigate the 
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reasons for non-disclosure among affected families in order to understand and help improve the 
rate of disclosure for better health outcomes amongst these children. 
Also, the problem of non-disclosure significantly contributes to psychological distress and 
burden in caregivers (Asadullah et al., 2017; Gyamfi et al., 2017; Osafo et al., 2017) yet post-
disclosure quality of life studies and experiences have focused mainly on children and not their 
caregivers. These problems, therefore, warrant the need for a study that explores the viewpoints 
and experiences of caregivers on status disclosure to children with HIV/AIDS. There is the need 
to also examine the impact of disclosure on health outcomes (antiretroviral adherence and 
psychological wellbeing)  in both children who know their HIV status and those who do not know 
their status and on caregiver burden and psychological health in caregivers. This will help to 
identify the burdens of caregivers and how they can be supported to care for their affected children. 
Also, caregivers will understand the importance of status disclosure and make informed decisions 
for the physical and psychological benefits of their children. 
 
1.3 Aims of the Study  
 
This study primarily aimed at exploring the experiences of caregivers with issues relating to the 
disclosure of status to children living with HIV/AIDS and to examine how disclosure influences 
health outcomes in caregivers and children living with HIV/AIDS. 
 
1.4 Specific Objectives 
 
The following were the specific objectives of the study: 
i. To explore the views and experiences of caregivers on HIV status disclosure to children 
living with HIV/AIDS. 
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ii. To explore and understand the views of caregivers on the impact of HIV status disclosure 
on health-related outcomes (particularly on adherence and psychological health) of 
children living with HIV/AIDS. 
iii. To examine the differences between caregivers who have disclosed and those who have 
not disclosed, on caregiver burden and psychological health.  
iv. To examine the differences between disclosed children and non-disclosed children living 
with HIV on psychological wellbeing and antiretroviral adherence. 
1.5 Relevance of the Study 
 
This study is of great significance in terms of literature and practice. In practice, results 
from this study will aid health professionals and other stakeholders to, first of all, understand the 
experiences of caregivers in relation to status disclosure to children living with HIV. It will throw 
more light on the barriers or obstacles to status disclosure, factors that promote disclosure among 
caregivers as well as how caregivers go about the disclosure process.  Understanding these 
experiences will also aid healthcare providers to understand the problems that caregivers face in 
relation to HIV status disclosure so as to provide the needed collaboration and assistance that 
caregivers may need during the disclosure process.  Also, findings will help in understanding the 
context-specific challenges of caregivers on status disclosure to children living with HIV.  
Again, findings will aid policymakers to develop culturally appropriate and specific 
disclosure guidelines that will guide and encourage disclosure of status among caregivers of 
children living with HIV as recommended by the WHO, since Ghana is yet to have a disclosure 
framework.  This will ensure that children with HIV take more responsibility for their health for 
better psychological and adherence outcomes and ultimately, for optimum health and management 
of the HIV epidemic.  Caregivers of children living with HIV will also be educated on the positive 
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impacts of disclosure on health outcomes in children with HIV which will go a long way in 
eradicating the fears that caregivers have towards disclosure.  
Furthermore, findings from this study will contribute greatly to the literature available on 
the treatment outcomes, health and psychological benefits that both children living with HIV/AIDS 
and their caregivers derive as a result of HIV status disclosure, given the fact that it is an emerging 
psychosocial issue and there paucity of data and research on the subject (Nichols et al., 2017; 
Odiachi, 2017). Finally, findings from the study will throw more light on some of the challenges 
children living with HIV face with regards to medication adherence and psychological wellbeing 
so that caregivers can be given the necessary support to help address such challenges.  
 
 
 
 
 
 
 
 
 
 
 
 
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CHAPTER TWO 
LITERATURE REVIEW 
 
2.1 Introduction 
 
This chapter synthesizes the literature relevant to the topic under investigation. It begins 
with a review of the theories that are relevant to the subject under study. The chapter also presents 
a review of related studies which puts together other studies that have examined the variables under 
investigation. These include experiences of disclosure in caregivers, disclosure and antiretroviral 
adherence, disclosure and psychological health in children living with HIV, disclosure and 
caregiver burden and disclosure and psychological health of caregiver of children with HIV.  
2.2 Theoretical Frameworks 
 
Two main theories underpinned this study,  namely: the Consequences Theory of 
HIV/AIDS Status Disclosure (Serovich, 2001) and the Social Influence Theory of HIV Disclosure 
(Zea, Reisen, Poppen, Bianchi, & Echeverry, 2007).  
2.2.1 Consequences Theory of HIV/AIDS Status Disclosure  
 
This Consequences Theory of HIV/AIDS status disclosure was built on an earlier theory 
of disclosure known as the Disease Progression Theory developed by Kalichman (1995). The 
disease progression theory states that an individual’s intention to disclose their HIV status is 
basically as a result of the progression of the disease (Kalichman, 1995). Before the introduction 
and widespread coverage of highly active antiretroviral therapy to people infected and living with 
HIV, being diagnosed with HIV/AIDS meant death was imminent because the disease progressed 
faster. As a result, Kalichman postulated that, as HIV progresses steadily to AIDS, it may lead to 
physical weakness and deterioration and may also require hospitalization. Hence, the individual in 
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a bid to seek assistance and resources to manage the disease would have to explain their illness 
leading to disclosure (Kalichman, 1995). With the success of antiretroviral therapy however, it has 
become evident that there are more angles to HIV status disclosure than just disease progression, 
because people living with HIV who are receiving treatment and are on antiretroviral therapy, and 
achieve optimum adherence are able to live normal healthy lives and function well in work and 
other settings. 
Building on the Disease Progression Theory, Serovich (2001) theorized that the 
relationship between HIV status disclosure and disease progression is determined by a third 
variable: that is, the consequences that the individual believes will result from disclosure. That is, 
the disclosure of a person’s HIV status to others is not only a factor of how fast the disease 
progresses but on the consequences that the individual perceives will result from the disclosure.  
These perceived consequences can either be positive (rewards) or negative (costs). Some of the 
costs of the disclosure include anger, rejection, isolation, and stigma while rewards include the 
access to social support, as well as emotional and physical support and the provision of medical 
information (Serovich, Lim, & Mason, 2008). If the perceived rewards of status disclosure are 
greater than the cost, then the individual is able to disclose their HIV status and vice versa.  
According to Serovich (2001), the core assumption of the social exchange theory by Hare, 
Thibaut, and Kelley (1960) lies at the center of consequence theory of HIV/AIDS status disclosure. 
The social exchange theory posits that people prohibit relationships and associations that are costly 
but seek rewarding ones where rewards are high and the cost are low (Hare et al., 1960). As such, 
when individuals are faced with a variety of choices, they select the ones with the most 
benefits/rewards and least costs. Therefore when people with HIV perceive that the costs of the 
disclosure are more than the rewards, they are unlikely to disclose, however, if the perceived 
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rewards are greater than the costs, then disclosure can take place. Applying this to children living 
with HIV, caregivers can either choose to disclose the HIV status of their children to them or 
otherwise based on the consequences that the caregivers perceive will result from the disclosure 
process. If the caregivers are convinced that disclosure will lead to more positive outcomes for the 
children, they are likely to disclose. However, if more negative outcomes are perceived for the 
children, then disclosure may be unlikely. 
2.2.2 Social Influence Theory of HIV Disclosure  
 
Zea et al. (2007) are of the view that psychological explanations of behaviour should not 
only include individual psychological factors but also larger social factors or variables such as 
societal norms and culture as well as individual or subjective factors (such as consequences). They 
believed that these social influences play a powerful role in explaining behaviours particularly for 
people who are from highly relational cultures such as Africa (Zea et al., 2007). They postulated 
three main social influences that affect disclosure namely: norms, culture, and experiences of 
discrimination. 
Norms are basically patterns of behaviour or patterns of group attitude that have a 
significant impact or social influence on behaviour. The norm regarding disclosure of one’s HIV 
status varies across different settings particularly with reference to the target of the disclosure. In 
western countries, the norm has been that people living with HIV disclose their status most of the 
time to their partners and close friends than family members (Zea et al., 2007). Another social 
factor that affects disclosure according to Zea et al., (2007) is the individual's cultural values and 
beliefs. It has been mostly reported that cultural values such as protecting one’s family from 
embarrassment and protecting the family’s peace and harmony are one of the main reasons for 
non-disclosure. In children living with HIV, these cultural norms may prevent parents or caregivers 
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from disclosing their wards HIV status because of the fear that both the parent and child will be 
stigmatized or that the child might blame their parents for the infection.  
Experiences of discrimination is also a social influence which affects disclosure of a 
person’s HIV status to others. According to the proponents of the social influence theory, a person's 
prior experience of discrimination due to disclosure could cause feelings of powerlessness in the 
individual leading to fewer communications about his or her diagnosis.  Disclosure of a person’s 
HIV status to others or a child’s HIV status to him or her, therefore, involves an interplay of these 
three social influences as well as other individual factors such as perceived costs and benefits of 
disclosure to determine whether or not disclosure will be made or not.  
2.3 Review of Related Studies 
 
2.3.1 Experiences of HIV/AIDS status disclosure by caregivers 
 
Caregivers across the globe have had varied experiences in relation to the disclosure of 
status to children living with HIV.  Beck-Sagué et al. (2015) found that different reasons prompted 
caregivers to either disclose or not to disclose the HIV status of their children to them. They 
conducted a mixed-method study that aimed to find out the percentage of children living with HIV 
who knew their HIV status and also describe the experiences of caregivers and adolescents on 
disclosure in the Dominican Republic.  Anonymized data were obtained from hospital records of 
a sample of 327 children with HIV aged 6–18years who were attending pediatric HIV clinics in 
Santo Domingo, and Clinica de Familia La Romana as part of the quantitative study. A total of 41 
caregivers and 36 adolescents also took part in focus group discussions as part of the qualitative 
study.   
Results indicated that only 74 out the 327 children knew about their HIV status which 
represents 22.6%. Caregivers who had disclosed reported that lack of medication adherence and 
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constant questioning and inquisitiveness on the part of these children prompted them to disclose 
whereas those who did not disclose gave reasons such as the age of the child. They were of the 
view that disclosure should be made at an older age, preferably between 10 to 16 years in order to 
help these children understand and cope with the condition. Other reasons for non-disclosure on 
the part of caregivers include the concern for the emotional wellbeing of these children as most 
caregivers feared that disclosure might lead to feelings of sadness and low self-esteem (Beck-
Sagué et al., 2015). Also, caregivers had fears that children might tell others if they know about 
their diagnosis and this can lead to stigmatization, discrimination, and rejection which the child 
may not be old enough to deal with (Beck-Sagué et al., 2015). These societal factors of 
discrimination and rejection are costs or negative consequences that caregivers perceive their 
children may not be able to cope with, hence reiterating the social influence of discrimination on 
disclosure. 
In rural Uganda, Lorenz et al. (2016) explored the attitudes of caregivers towards HIV 
testing and disclosure of status to at-risk children. They sought to find out the age of disclosure, 
the disclosure process, and challenges faced during disclosure. Twenty-eight (28) primary 
caregivers of children with HIV who were on antiretrovirals and whose status had been disclosed 
to them were interviewed. It was found that most caregivers initiated the disclosure process at the 
age of 7 years. Before that, caregivers admitted to giving partial disclosure; that is telling their 
children initially that they have other medical conditions such as malaria and anemia. The reason 
for this partial disclosure was because caregivers feared the children’s reactions to the knowledge 
of their diagnosis and whether they would understand what the condition is. In most cases, 
caregivers felt it was their duty to disclose the HIV status of their children to them. Some caregivers 
sought advice from health professionals and HIV counselors before they disclosed to the children. 
Reasons that prompted disclosure were children’s curiosity about why they were taking 
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medications continually, poor adherence and refusal to attend regular clinic appointments.  In the 
process of disclosure, caregivers also disclosed their own HIV status or that of the child’s 
biological parents. Caregivers doubted whether the children understood the information being 
disclosed at the time however, a majority of them were sure it will lead to positive outcomes such 
as increased adherence and health (Lorenz et al., 2016). This shows that caregivers’ beliefs that 
disclosure will have positive outcomes or rewards for the children lead to disclosure hence 
reinforcing the consequences theory of disclosure. 
Baker et al. (2018)  found in Peru that caregivers and health care providers’ frustration 
about non-adherence to medication on the part of children who did not know their status, as well 
as, curiosity on the part of others were some of the factors that prompted disclosure. Some 
caregivers and health care providers also became fed up with consistently lying to these children 
and eventually had to disclose. In addition, unintentional discoveries by children such as seeing 
medication labels, learning through television, internet, brochures and overhearing HIV 
discussions at the clinic prompted parents to open up about their HIV status. Health care providers 
prepared caregivers for the disclosure process by engaging in discussions about how and when 
disclosure should take place. Most caregivers reported using child-friendly analogies during 
disclosure for the children to understand. For instance, some caregivers told their children they 
were born with bugs in their body and to prevent this bug from growing, the children needed to 
consistently take their medication. After HIV status disclosure, most caregivers reported that 
children initially experience emotional distress and depression but with time, they were able to 
overcome such depression with the needed support from family and friends. Caregivers also 
reported worse adherence immediately after disclosure but admit that this improved after time. 
Children with HIV, caregivers and health care professionals all had varied opinions as to what age 
disclosure should happen. Children suggested between the ages of 6 and 7 years, health care 
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professionals suggested from 8 years while caregivers preferred adolescence, (12 to 14 years).  
Since caregivers are the ones who mostly disclose to children, this can perhaps explain why older 
adolescents are more often than not disclosed to than younger children.  
In China, DeSilva et al. (2018) explored issues relating to the disclosure of HIV status to 
older children and adolescents living with HIV. They interviewed clinicians, caregivers, and 
adolescents themselves using one-on-one interviews and focus group discussions. In all, forty (40) 
interviews were conducted with twenty adolescents/caregiver dyads as well as four focus group 
discussions.  Findings show that some adolescents actually knew their status without it being 
disclosed to them by their caregivers. Only 6 caregivers reported disclosing to their children but 
interviews with the adolescents showed that 9 actually knew their status. This confirms the 
problem of unintentional discoveries by adolescents living with HIV leading to accidental 
disclosures as reported by Baker et al. (2018).  Adolescents who knew their status were 13 years 
and above. Caregivers reported that they had earlier disclosed a less stigmatized condition like 
respiratory conditions to the adolescents as reported by Lorenz et al. (2016). They also reported 
using analogies such as the children having bugs in their tummies. Caregivers’ reasons or barriers 
to disclosure included stigma, anxiety about children’s reaction, and lack of preparedness for 
disclosure.  
In Ghana, research has shown similar trends in relation to HIV status disclosure to infected 
children. Gyamfi et al. (2017) in a study to find the prevalence of disclosure to HIV infected 
children and to assess the problems that caregivers face during disclosure found that, disclosure 
happens mostly between the ages of 6 to 19 years with the mean age for disclosure being 15 years. 
Some of the reasons cited for this late disclosure include the age of the child (too young to 
understand the diagnosis), possible aftermath of disclosure (that the child will be psychologically 
harmed or devastated), stigmatization of HIV (isolation and rejection because of the diagnosis) 
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and the child not being discrete about his/her diagnosis. Although in a previous study caregivers 
were aware and perceived disclosure as having positive outcomes such as responsible adolescent 
sexual behavior, increased adherence to medications and empowerment of children to take 
responsibility for their own health, most of them preferred to wait until teenage years before they 
disclose (Gyamfi et al., 2015).  Others also postponed disclosure until they were either alerted by 
the health care worker or until the child became reluctant in taking medications on the grounds 
that they were not ill anymore before disclosure was made (Gyamfi et al., 2017).  
In summary, it can be noted that the experiences of disclosure are quite similar as seen in 
the studies reviewed above. However, most of these qualitative studies reviewed above focused 
mainly on the reasons for disclosure and non-disclosure (Baker et al., 2018; Beck-Sagué et al., 
2015; DeSilva et al., 2018; Lorenz et al., 2016). The studies did not explore the impact and 
aftermath of disclosure on medication adherence among the children qualitatively.  Also, these 
studies reviewed above have not also explored the impact of disclosure on caregivers as well.  
2.3.2 Disclosure and Health Outcomes in Children 
 
2.3.2.1 Disclosure and Antiretroviral Therapy Adherence 
 
Although disclosure of status to children living with HIV is believed to positively impact 
health outcomes in children such as improved adherence, research on the association between 
disclosure of status to children living with HIV and medication adherence have reported mixed 
findings. 
In an unmatched case-control study by Bulali, Kibusi, and Mpondo (2018) in Tanzania, 
HIV status disclosure was found to be positively associated with ART adherence. The study aimed 
to find out the factors that prompt HIV status disclosure and its consequence on medication 
adherence and quality of life among children aged 6 to 17 years living with HIV/AIDS. A total of 
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309 children were randomly sampled from Southern Highlands Zone and administered 
questionnaires. HIV status disclosure was measured by asking the parents/ guardians if their child 
knew their HIV status followed by verification from healthcare providers. Adherence was 
measured by using WHO adherence manual. Results showed that only 33% (102 of 309) of the 
participants knew their status. Age of the child, the educational level of the child and the 
educational level of the parent/guardian were factors that were significantly associated with the 
disclosure of HIV status. Disclosure was more prevalent among older adolescents between 10 and 
17years than younger children. Also, children in high school or secondary had more odds of 
disclosure than those in primary school. Disclosure was positively and significantly associated 
with ART therapy adherence. Age of the child and relationship with the caregiver also indicated 
marginal significant relationships with disclosure (Bulali et al., 2018). 
Also in Tanzania, Ramos et al. (2018) assessed the association between disclosure and 
stigma, mental health and adherence, and explored the psychosocial context among youth living 
with HIV in mixed-method approach. In the quantitative study, a total of 280 participants were 
conveniently sampled and administered questionnaires.  The questionnaire asked if children knew 
their HIV status and how they found out. Self-reported adherence was measured with two 
questions developed by researchers. Results showed that 223 (80%) out of the 280 participants had 
found out their diagnosis on their own before they were eventually told. Also, thirty-two percent 
(32%) of the total 248 youth who were on antiretroviral therapy had poor adherence. Researchers 
concluded that although disclosure results in some improved adherence, however, the manner in 
which the children found out about their HIV status significantly affected adherence levels. Youth 
who had figured out their diagnosis on their own had poorer or incomplete adherence as compared 
to those who were purposefully told. This means that disclosure in itself is important and how this 
disclosure is done determines whether or not adherence will improve (Ramos et al., 2018).  
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Nichols et al. (2017) conducted a review to help understand the effect disclosure has on 
HIV-infected children in resource-limited countries. A systematic search of electronic medical 
databases was conducted. Studies were qualified for selection if they used a quantitative design to 
find the association between HIV status disclosure and adherence to antiretroviral therapy in 
pediatric patients and if they were conducted in a resource-limited setting. In all, a total of 14 
studies met these criteria were included in the review.  
Results indicated that the relationship between disclosure and antiretroviral adherence 
varied across studies. Five out the fourteen studies included in the review showed that there was 
no statistically significant association between disclosure and adherence while five other studies 
reported a positive association. Two studies, on the other hand, found that disclosure was related 
to non-adherence and the remaining two found that non-disclosure to be associated with adherence 
(Nichols et al., 2017). Seven studies examined the bivariate relationship between the two factors 
(disclosure and adherence) aside from other demographic factors that were found to have an effect 
on adherence. Of this, one found no association, three indicated a negative association while three 
also showed a significant positive association between disclosure and adherence (Nichols et al., 
2017). Possible explanations for the positive associations were that disclosure empowers the 
children to work together with health care providers and their caregivers in maintaining adherence. 
It also allowed the children to willingly take medications knowing why they have to be taken.  
Again, disclosure created the atmosphere for more open communication about the condition 
between the caregivers, the healthcare providers, and the children (Nichols et al., 2017). For those 
studies that reported a negative association between disclosure and adherence, fear of social stigma 
and denial of status, leading to a decreased desire to take medications were cited as reasons. Others 
were that disclosure leads to depressive symptoms in children with HIV hence decreasing strong 
adherence habits (Nichols et al., 2017).  
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These results show mixed findings with no clear pattern. The authors cited different reasons 
for these inconclusive findings. The first is that there were varied methods of determining 
adherence in the studies reviewed.  Some used the pill count method, while others used self-
reported adherence or caregiver reported adherence. Also, sample sizes were not large enough 
hence sub-analyses were not conducted, thereby restricting the generalizations that can be made 
from the data (Nichols et al., 2017). 
In another systematic review, Odiachi (2017) also explored the relationship between 
pediatric disclosure and health outcomes (adherence to antiretroviral therapy, psychosocial 
outcomes, and sexual and reproductive health) among children living with HIV. A multi-stage 
procedure was used to search for and extract data. A total of fifteen studies met the inclusion 
criteria and were used in the final review. Results showed that of all the studies that met the criteria 
for the review, only three focused on the effect of status disclosure on antiretroviral adherence. Of 
these three, two studies from Puerto Rico and South Africa found a positive association between 
disclosure and adherence while a study in Kenya showed that disclosure was not in any way 
associated with adherence as reported in their clinical data form or by caregivers (Odiachi, 2017).  
A limitation of this review is the small sample sizes used the studies included the review. 
The Puerto Rican and South African studies, for instance, had sample sizes as small as 40 and 25. 
This did not allow for more rigorous analysis to be done and this limits any conclusions that can 
be drawn from such data on the impact of disclosure on treatment adherence. The authors, 
therefore, recommended more studies on the importance of disclosure on adherence to HIV 
treatment for children living with HIV (Odiachi, 2017).  
2.3.2.2 Disclosure and Mental/Psychological Health 
 
One of the commonly cited reasons for not disclosing among caregivers is the fact that 
disclosure will lead to psychological harm and emotional trauma to the children involved (Baker 
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et al., 2018; Beck-Sagué et al., 2015; Gyamfi et al., 2017; Vreeman et al., 2014). However, studies 
that have investigated the relationship between disclosure and health outcomes have been 
inconclusive. While some studies report negative psychological outcomes in these children as a 
result of the disclosure, others reported positive mental health after disclosure. 
For instance, in a study in Nigeria, Adefalu, Florence, Ayinmode, and Issa (2017) found 
that disclosure did not have any association with psychiatric morbidity or psychological health and 
wellbeing. This study was conducted among a sample of 196 children with HIV and their 
caregivers who were attending the HIV clinic at UITH Kwara State, Nigeria. Results indicated that 
only 18.4% of the children and adolescents sampled knew their HIV/AIDS status. Also, 19.4% of 
the children had mental health problems, the majority of whom did not know their HIV status. 
However, the children’s knowledge about their HIV status was not significantly related with 
mental health problems hence the conclusion that disclosure of status to children does not lead to 
psychological problems in these children (Adefalu et al., 2017).  
 Pinzón-iregui, Beck-sagué and Malow (2013) conducted a systematic review to evaluate 
the global literature on disclosure of HIV status to infected children. Thirty-one (31) articles that 
were published from January 1996 to September 2011 were identified and included in the review. 
Results indicated that only three of the studies specifically investigated the relationship between 
disclosure and mental health. All three studies found no evidence that supported the assertion that 
a child’s knowledge of his or her HIV status had a negative impact on mental health. A study in 
the review that assessed an intervention found that, at 6 months post-disclosure, over 70% of the 
children reported normalcy, and only one out of 40 participants still reported feelings of depression 
and would have preferred not to be told about the diagnosis. The other children, however, stated 
that they were happy to have found out about their status. Seven studies also examined how 
children, caregivers, and their families experienced disclosure. Six of these reported disclosure as 
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a positive event. However, one study which assessed the quality of life found no difference in the 
quality of life indicators in the children before and after disclosure (Pinzón-iregui et al., 2013). 
Although these studies above found no negative relationship between disclosure and 
mental health issues in children living with HIV, another review by Odiachi, (2017) indicated 
otherwise. This review reported that some studies found negative mental health issues in children 
whose status has been disclosed. Eleven out of the fifteen studies included in the review examined 
the effect of disclosure on mental and psychological outcomes of children with HIV (Odiachi, 
2017). Five (5) of these eleven (11) studies showed an adverse impact of disclosure on some 
domains of mental health, two found that disclosure had a good impact on mental health while the 
rest either showed no effect at all, little or short-term negative impact.  These five studies that 
indicated negative mental health outcomes stated that disclosure leads to increased risk of 
psychiatric hospitalization and poorer quality of life (Odiachi, 2017).   
It is obvious from the studies reviewed above that there is inconsistency in the literature. 
However, a review by Vreeman et al. (2013) throws more light on the association between 
disclosure and mental or psychological outcomes in children living with HIV. The aim of this 
review was to ascertain the prevalence of HIV disclosure among children with HIV  and to identify 
factors that influence pediatric disclosure and the effect of disclosure on the physical and emotional 
health of the children (Vreeman et al., 2013). A total of thirty-two articles were included in the 
review. It was found that quantitative studies mostly reported negative outcomes. However, 
qualitative studies have shown that although children experienced psychological and emotional 
difficulties after disclosure, these were mitigated over time as the children showed no signs of 
psychological difficulties (Vreeman et al., 2013). For instance, of the studies reviewed, a 
qualitative study in the Democratic Republic of Congo and Brazil found that children reported 
feelings of great sorrow, pain, and anxiety after learning about their HIV diagnosis, but these were 
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followed by some feelings of comfort and relief after some period of time. This means that the 
duration of disclosure was a mediating factor in the association between disclosure and mental or 
psychological health outcomes in children with HIV. Hence, there is a need to consider the 
duration of disclosure as a factor when examining the relationship between disclosure and 
psychological health of children living with HIV.  
2.3.3 Disclosure and Health Outcomes in Caregivers 
 
While many studies have examined and explored the effect of disclosure on health 
outcomes in children living with HIV, few have actually examined its effect on the health and 
wellbeing of caregivers. Of these few, the focus has generally been on the psychological impact 
of caring for children living with HIV. For instance, a study conducted in rural China by Lv et al. 
(2010) investigated depressive symptoms in 160 caregivers of children in families affected with 
HIV and found that more than 50% of caregivers reported very high levels of depression. The 
participants were administered the Centre for Epidemiological Studies Depression Scale (CES-D) 
and over 50% of these caregivers had scores greater than 16 indicating the presence of depression. 
Variables that were significant predictors of depression in these caregivers included lower 
educational level and poor socio-economic status of caregivers (Lv et al., 2010).  Researchers 
recommended that psychological interventions and social support be given to HIV-affected 
families particularly caregivers from lower socio-economic backgrounds. 
Similarly, a study by Asadullah et al. (2017) on the psychological effect on caregivers of 
children with HIV in India found high levels of caregiver burden and psychological distress among 
caregivers. In this study, a total of 171 caregivers were conveniently sampled and were 
administered questionnaires. Results indicated that 84% of caregivers reported moderate to very 
severe caregiver burden and 49.7% of caregivers reported little to severe psychological distress 
(Asadullah et al., 2017). The caregiver’s relationship with the child was a major predictor of 
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caregiver burden whereas alcohol use and schooling of children was a predictor of psychological 
distress. Caregivers who were the biological parents of children with HIV experienced more 
caregiver burden than caregivers who were not the biological parents of the children. Also, 
caregivers who use alcohol and those whose children were not in school experienced more 
psychological distress.  
Also, Gyamfi et al. (2015) explored the perceptions of caregivers on the benefits of 
disclosure of HIV status to infected children, adolescents, and caregivers in the Eastern Region of 
Ghana. Using the mixed methods design, a total of 118 caregivers took part in the quantitative 
phase and 10 took part in the in-depth interviews respectively. Results indicated that disclosure 
did not only improve the health of caregivers but also improved and increased adherence to 
medications, ensured that the children put up healthy and responsible sexual behavior and were 
responsive to health needs. A limitation of this study is that the questionnaires used were 
unstructured and unstandardized and this flaws the study because the measures did not show sound 
psychometric properties such as reliability and validity.  
 Ofori-Atta et al. (2019) found in a recent study in Ghana that there was a high prevalence 
of depression among caregivers of children living with HIV particularly those who have not 
disclosed the status of their children. Prevalence of depression among these caregivers was 
estimated at 28% meaning that this percentage of caregivers met the clinical criteria for the 
diagnosis of depression. They also found that HIV-positive caregiver status, low income, lower 
social support, lower HIV knowledge, HIV illness perception, and greater perceived HIV stigma 
were some of the factors significantly associated with depression among caregivers of children 
living with HIV. The study aimed to estimate the prevalence of depression in non-disclosed 
caregivers and also identify some risk and protective factors for depression among a sample of 446 
caregivers of children living with HIV in Kumasi and Accra. A limitation of this study is that it 
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only focused caregivers who have not disclosed to their children and not on caregivers who have 
disclosed. Thus, there was no comparison between caregivers of children who do not know their 
diagnosis and caregivers of children who know their diagnosis on depression. 
2.4 Rationale 
Although a number of studies have been done in the sub-region on pediatric disclosure, few 
studies have focused on the impact of status disclosure on health-related outcomes in both children 
living with HIV and their caregivers. A majority of the studies that have been done on post-disclosure 
quality of life and experiences were conducted in children living with HIV and not their caregivers 
(Adefalu et al., 2017; Bulali et al., 2018; Pinzón-iregui et al., 2013; Ramos et al., 2018). Also, studies 
that assessed the influence of disclosure of status on health outcomes in children with HIV have also 
reported mixed findings (Nichols et al., 2017; Odiachi, 2017).  In Ghana, the focus of most disclosure 
studies have been on the patterns of disclosure (Kallem et al., 2011) as well as the barriers to HIV 
status disclosure in children (Gyamfi et al., 2015) and not necessarily the impact of disclosure. In 
some of the studies reviewed above, researchers acknowledged the paucity of data on the subject of 
pediatric disclosure and indicated the need for more research in the field (Nichols et al., 2017; 
Odiachi, 2017; Ofori-Atta et al., 2019).  
Secondly, studies that have been conducted on the subject of pediatric disclosure, particularly 
those reviewed above have some methodological flaws and limitations. For instance, some of the 
quantitative studies reviewed above had sample sizes as small as 25 and 40 (Nichols et al., 2017; 
Odiachi, 2017). In addition, few studies used standardized measures to test for the variables under 
study.  For instance, antiretroviral adherence was determined using methods such as pill count and 
child report (Nichols et al., 2017) whereas the perceived benefits of disclosure such as psychological 
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health were measured using open-ended questions instead of structured questionnaires with good 
psychometric properties (Gyamfi et al., 2015).  
Similarly, most of the qualitative studies have focused generally on the experiences of 
caregivers of children living with HIV/AIDS and have not explored in particular the experiences of 
disclosure and its impact of the health of caregivers who play an important role in the wellbeing of 
children with HIV  (Asadullah et al., 2017; Osafo et al., 2017). In the context of these gaps in the 
literature, the present study was therefore conducted to explore the experiences of caregivers on HIV 
status disclosure to children and to further examine the influence of disclosure on the health outcomes 
of both children with HIV and their caregivers using an exploratory sequential mixed method.  
2. 5 Research Questions 
 
The following research questions were formulated and explored in the qualitative study 
1. What factors promote disclosure and non-disclosure in caregivers of children living with 
HIV? 
2. How do caregivers go about children’s HIV status disclosure? 
3. What changes does HIV status disclosure bring in children living with HIV?  
4. How does HIV status disclosure affect caregivers health and their caregiving experiences? 
2.6 Hypotheses 
Based on the literature reviewed above, the following hypotheses were tested for the quantitative 
study: 
1. Children whose HIV status have been disclosed will report better antiretroviral adherence than 
those children whose HIV status have not been disclosed.  
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2. Children whose HIV status have been disclosed will report better psychological wellbeing 
outcomes than those children whose HIV status have not been disclosed. 
3. Caregivers who have disclosed the HIV status of their children will have better psychological 
health than caregivers who have not disclosed. 
4. Caregivers who have disclosed the HIV status of their children will have lesser caregiver 
burden than caregivers who have not disclosed. 
5. The duration of disclosure will mediate the relationship between disclosure and antiretroviral 
adherence of children living with HIV. 
6. The duration of disclosure will mediate the relationship between disclosure and psychological 
health of children living with HIV. 
7. Age will predict disclosure of status in children living with HIV. 
2.7 Hypothesized Conceptual Model 
 
 DURATION OF 
 DISCLOSURE 
 
MEDICATION 
 DISCLOSURE OF AGE ADHERENCE 
STATUS 
 PSYCHOLOGICAL 
WELLBEING IN 
 CHILDREN WITH HIV 
 
CAREGIVER BURDEN 
 
 PSYCHOLOGICAL 
HEALTH IN 
 CAREGIVERS 
Figure 1. Diagram showing the hypothesized relationships between the variables under study. 
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CHAPTER THREE 
METHODOLOGY 
3.1 Introduction  
 
This chapter describes the methods used in gathering data, including the research design 
and setting, population and sample determination, sampling techniques, inclusion and exclusion 
criteria, ethical considerations, instruments or measures, the procedure for gathering the research 
data and methods of data analysis. 
3.2 Research design  
 
The research design used in this study was a mixed-method design where both qualitative 
and quantitative data were collected. Specifically, an exploratory sequential mixed method was 
used to achieve the objectives of this study. In this type of mixed-method design, the qualitative 
data is collected first and analyzed followed by quantitative data. According to Creswell  (2014), 
the intent or purpose of using this mixed-method design is for the quantitative data to build on the 
results of the qualitative data. The justification for using this method is that this field of inquiry is 
relatively new, unexplored in Ghana and very few studies have been conducted in this area 
(Gyamfi et al., 2015, 2017; Ofori-Atta et al., 2019). As such, there is the need to first explore 
qualitatively the views and experiences of caregivers on disclosure of status which would then 
inform the quantitative phase of the study in addition to findings from existing literature. 
According to Andrew and Halcomb (2009), the quantitative component of an exploratory 
sequential mixed method is not only informed by the findings of the qualitative but also from 
preexisting literature. It therefore allows to a large extent, not only the inclusion of previous 
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literature but also the active participation of population under study in refining study instruments 
or measures and hence increasing the ecological validity of these instruments or measures.  
3.3 Research Setting 
 
This study was set in the Greater Accra Region of Ghana, specifically in four main hospitals 
namely; the Greater Accra Regional Hospital (Ridge), the Princess Marie Louise Children’s 
Hospital (PML), Tema General Hospital and the Korle Bu Teaching Hospital. The Greater Accra 
Region was selected as the setting for the study because it is the most urbanized, cosmopolitan and 
densely populated region in Ghana with dwellers and settlers from all the other regions of Ghana 
and beyond. The region has a total land area of 3,245 square kilometers with a population of 
4,010,054 representing 16.3% of the total Ghanaian population (Ghana Statistical Service, 2010). 
Although it is one of the smallest out of the 16 administrative regions of Ghana and in terms of 
land area, it has 16 districts comprising two (2) metropolitan assemblies, nine (9) municipal 
assemblies, and five (5) district assemblies respectively (Local Government Service, 2015). The 
region is also home to over 80 government health facilities that provide health care services to the 
inhabitants of the region in addition to other privately owned facilities (Ghana Hospitals, 2012).  
The Greater Accra Regional Hospital formerly called Ridge Regional Hospital is located 
at North Ridge in the Osu-Klottey Sub-Metro of the Accra Metropolis in the Greater Accra Region. 
As the regional hospital, its catchment area is the whole of the Greater Accra Region. With its 
recent redevelopment and transformation into an ultra-modern 620-bed capacity hospital, the 
hospital provides services including Outpatient Services, Accident & Emergency Services, 
Surgery and Endoscopy Services, Burns and Reconstructive Services, Mental Health Services, 
Clinical Psychology Services, and Child Health Services among others. The Child Health 
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department provides health care services to children below the age of 18 including children with 
HIV who have special clinic days. 
The Princess Marie Louise Children’s Hospital is located within the Ashiedu Keteke sub-
metro of the Accra Metropolis in the Greater Accra Region. It is the first-ever children’s hospital 
in Ghana and was established to meet the needs of maternal and child health care delivery. The 
facility which has been in existence for over 90 years attends to children from ages 1day to 18yrs 
old. It provides medical care, child health services and nutrition services to these children as well 
as family planning services for mothers. The hospital also provides specialized medical care for 
children living with HIV as well as their caregivers and have special clinic days for them.  
The Korle Bu Teaching Hospital (KBTH) is located within the Accra Metropolis. It is the 
largest referral unit in the Accra Metropolis. Specifically, the study was conducted at the Child 
Health Department of the Korle Bu Teaching Hospital. The Child Health Department is a tertiary 
referral center for children under 13 years with both medical and surgical problems. It has over 36, 
000 outpatient attendance per year and it provides specialist care for referred medical and surgical 
cases and runs special clinics including Neurodevelopmental Clinic, Asthma Clinic, Diabetes & 
Endocrine Clinic, Cardiac Clinic and HIV Clinic for both children and adults, Sickle Cell Clinic, 
and Neonatal follow up clinic.  
The Tema General Hospital is the largest government health facility within the industrial 
hub of the country, the Tema Metropolis. The hospital runs 24-hour general and specialist 
healthcare services including Outpatient Services, Accidents, Emergency and Surgery Services, 
Dental services, Pediatric or Child Health  Services as well as Special Clinics for  ENT and children 
and adults living with HIV.  
 
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3.4 Population, Sample and Sample Determination 
 
The target population for the study was children living with HIV between the ages of 6 to 
15 years who are receiving antiretroviral treatment at any of the health facilities described above 
and their caregivers. This population was selected because first of all, the facilities are located in 
the two cosmopolitan districts in the region, that is, the Accra and Tema metropolis. Hence 
participants recruited from these facilities reflected the diverse cultural, social and educational 
backgrounds across the region. Secondly, other studies have focused mainly on older children and 
adolescents between the ages of 15 and 19 (Nichols et al., 2017). The Ghana AIDS Commission 
reported that as of 2017, an estimated total of 28, 203 children below the age of 15 years were 
living with HIV/AIDS in Ghana with 6,626 of these children residing in the Greater Accra Region 
(Ghana AIDS Commission, 2017). Nonetheless, this population is hard to reach because of the 
stigma attached to the condition and so they could only be accessed through the hospitals where 
they attend special antiretroviral clinics.  
A total of fifteen (15) caregivers were purposively sampled from three of the hospitals 
described above and engaged in a one on one in-depth interview on their views and opinions about 
the disclosure of status to children living with HIV. Eight (8) were recruited from the Princess 
Marie Louise Children’s Hospital (PML), three (3) from Ridge Hospital and four (4) from the 
Tema General Hospital. According to Guest, Bunce, and Johnson (2006), a minimum of 12 in-
depth interviews and above are enough to reach saturation and generate codes and themes in a 
qualitative study. The age of the caregivers interviewed ranged from 27 to 55 years [Mean (SD)]= 
[41years (6.23)] and the ages of the caregivers’ children ranged from 6 to 15 years [Mean (SD)] = 
[10.2 years (2.88)]. Eleven (11) of the caregivers were females (73.33%). Table 3.1 below gives a 
summary of the participants interviewed.  
 
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Table 3.1 Demographic Characteristics of Participants Interviewed 
Participants Age Sex Age of Residence Occupation Religion 
Child 
P1 47 F 10 Korle- Bu Trader Christian 
P2 34 F 6 Ashaiman Sales Coordinator Christian 
P3 27 F 6 Newtown Trader Islam 
P4 38 F 10 Sukura None Islam 
P5 40 F 10 Mataheko Food Vendor Christian 
P6 40 M 6 Ablekuma Engineer Christian 
P7 41 F 7 Awoshie Trader Christian 
P8 38 F 11 Ablekuma Trader Christian 
P9 39 F 10 Nima None Islam 
P10 46 F 11 Kanda Trader Christian 
P11 42 F 12 Kasoa Cleaner Christian 
P12 55 M 15 Taifa Teacher Christian 
P13 45 M 14 Mamprobi Mason Christian 
P14 42 F 12 Sakumono Trader Christian 
P15 41 M 13 Odorkor Electrician Christian 
 
For the quantitative study, one hundred and fifty-five (155) children living with HIV/AIDS 
between the ages of 6 to 15 years and their caregivers were purposively sampled from the hospitals 
described above. They were administered caregiver-child dyads that measured disclosure, 
psychological health, and caregiver burden in the caregivers and psychological wellbeing and 
medication adherence in the children respectively.  
The sample size was determined using the G*Power sample size calculation software 
version 3.1.9.4. (Faul, Erdfelder, Lang, & Buchner, 2007). To ascertain the required sample size 
for this study, an a priori power analysis computation was performed using an alpha of 0.05 an 
acceptable power of .95, and a medium effect size of 0.15 as suggested by Cohen (1988;1992). 
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Other input parameters used in the calculation included the number of groups, number of response 
or dependent variables and number of predictors. In this study, there was one predictor variable 
(disclosure), two groups (children who have been told their HIV status and those who have not 
been told) and four dependent variables (adherence, psychological wellbeing, caregiver burden, 
and psychological health).  The outcome analysis estimated that a required total of 129 participants 
were adequate to accept the alternative hypotheses and reject the null hypotheses. One hundred 
and fifty-five (155) children living with HIV aged between 6 and 15 years and their caregivers 
were eventually included as the final sample for the quantitative study.  
 
3.5 Inclusion Criteria 
 
Participants who met the following inclusion criteria were recruited in the study: 
i. A child living with HIV/AIDS between the ages of 6 and 15years  
ii. A caregiver of a child between ages 6 and 15 years 
iii. The child attends HIV clinic at either the Korle Bu Teaching Hospital, Ridge Hospital, 
Tema General Hospital or the Princess Marie Louise Children’s Hospital.   
iv.  The child has been enrolled on antiretroviral therapy for at least six months. 
3.6 Sampling Technique 
 
Participants of the study, that is, children living with HIV and their caregivers were 
sampled using the purposive and convenient sampling techniques, which are types of non-
probability sampling. In purposive sampling, there is a thoughtful and intentional choice of a 
participant because of the characteristics the participant holds (Etikan, 2016). The researcher 
selects the study area to be investigated and embarks to discover individuals who can and are eager 
to give the needed information by virtue of their experience and knowledge about the topic under 
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study (Palinkas et al., 2016). This technique was chosen because only caregivers of children living 
with HIV and the children themselves were proficient enough and well informed about the issues 
that the research sought to address.  Sampling was also convenient in nature because only 
participants who were easily accessible and available at the special HIV clinics at the time of the 
data collection, and who expressed their willingness to participate were included in the study.  
3.7 Materials  
 
3.7.1 Interview Guide 
 
A semi-structured interview guide comprising open-ended question was used to explore 
the experiences of caregivers of children living with HIV/AIDS on disclosure of status. It 
comprised two sections; a demographic section which obtained the demographic information of 
caregivers and their children and the interview guide section (see Appendix F). There were seven 
questions on the interview guide with each question having at least three probe questions. The 
interview questions focused on whether or not caregivers had disclosed the status of their children 
to them, how this had affected the children’s health and medication adherence, reasons for non-
disclosure and disclosure, and the problems or challenges caregivers encounter taking care of these 
children.  
3.7.2 Measures 
 
Demographic Questionnaire 
A demographic questionnaire was developed and included in the instruments or measures 
for the data collection. The questionnaire aimed at obtaining relevant demographic information 
from both caregivers and children living with HIV/AIDS such as their age, gender/sex, level of 
education, caregiver’s relationship with the child, disclosure of status and how long disclosure has 
been made (See Appendix  E).  
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AMPATH Disclosure Questionnaire  
 Disclosure of HIV status in children was measured using the USAID-Academic Model 
Providing Access to Healthcare (AMPATH) disclosure questionnaire (Vreeman et al., 2014). This 
questionnaire assesses disclosure of HIV status in caregivers of children living with HIV/AIDS as 
well as to measure antiretroviral adherence, stigma, and depression experienced by children. The 
questionnaire consists of 15 items to which caregivers are to respond “Yes” or “No”. The first four 
items which measure disclosure of HIV status in caregivers of children living with HIV was 
adopted for this study. Full disclosure is said to have been made if the caregivers responded “Yes” 
to all four items. Non-disclosure is said to have occurred if caregivers respond “No” to any of the 
four items (See Appendix E). 
Medication Adherence Rating Scale (MARS) 
This scale was developed by Thompson, Kulkarni, and Sergejew (2000) as a measure of 
medication adherence among schizophrenia patients. It is a ten (10) item questionnaire that 
assesses three different aspects or dimensions of adherence namely medication adherence behavior 
(items 1-4), attitude toward taking medication (items 5-8) and negative side effects and attitudes 
to psychotropic medication (9-10). Each item has a response option of “Yes” scored as “0” and 
“No” scored as “1”. Items 7 and 8 are reverse scored, meaning a “Yes” response is scored (1) and 
“No” is scored (0) (See Appendix E). Total item score ranges from 0-10 with a higher score 
indicating better adherence and lower scores indicating poor adherence. An initial Cronbach alpha 
of .75 has been reported (Thompson et al., 2000) and a recent alpha of .77 (Owie, Olotu, & James, 
2018). The questionnaire has been used to assess medication adherence in other chronic conditions 
including asthma (Nagakumar et al., 2014). In this study, the scale yielded a Cronbach alpha of 
.69. Although this is less than the acceptable value of .70, it is common for scales with fewer items 
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(usually 10 items or less) to yield Cronbach alphas less than .70 (Pallant, 2016) in which case it is 
appropriate to check the mean inter item correlations of the items. 
 Stirling Children’s Well-being Scale 
This scale assesses or measures emotional and psychological wellbeing in children of 6 to 
15 years (Liddle & Carter, 2015). Developed by the Stirling Council Educational Psychology 
Service (UK), the scale was put together in the quest to have an all-inclusive and positively worded 
measure of emotional and psychological well-being in children rather than that which focused on 
mental illnesses. It is a 15 item scale on a 5 point Likert scale ranging from 1 (Never) to 5 (All of 
the time) (See Appendix E). The questionnaire has two subscales namely “positive emotional 
state” and “positive outlook” all comprising 6 items each, and 3 social desirability indicator items 
which are not included in computing the total scores. In this study, the total scale score was used 
instead of the subscale scores. Scores for each of 12 items were summed to arrive at a total score 
ranging from 12 to 60 with higher scores indicating higher psychological wellbeing in children. 
The scale has an initial Cronbach alpha of .85 (Liddle & Carter, 2015) and has recently been 
adapted in Bangladesh with a Cronbach alpha of .75 (Haque & Imran, 2016). The scale yielded a 
Cronbach alpha of .86 in the current study. 
Zarit Burden Interview 
This questionnaire was used to measure self-reported caregiver burden among 
caregivers of children living with HIV. It assessed the stresses experienced by caregivers of 
children living with HIV and the impact of the children’s ill health on their lives. It was 
developed by Zarit, Reever, and Bach-Peterson (1980) and comprises 22 items to which 
caregivers responded to on a 5 point Likert scale ranging from  0 (Never) to 4 (Nearly Always) 
(See Appendix E). The questionnaire is scored by summing up the responses of the individual 
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items. Total scores range from 0 to 88 with higher scores indicating greater caregiver distress 
or burden.  It has good internal consistency reliability indexed by an alpha of .92 (Hébert, 
Bravo, & Préville, 2000). In this study, the reliability of the Zarit Burden Interview was .81. 
General Health Questionnaire- 28 (GHQ-28) 
Caregivers’ psychological health was measured using the General Health Questionnaire- 
28 (Goldberg & Hillier, 1979). It is a screening tool that measures emotional distress and 
psychological problems in individuals in medical settings or detects those likely to be at risk of 
developing psychological disorders. The questionnaire has four subscales which measure somatic 
symptoms (items 1 to 7), anxiety and insomnia (items 8 to14), social dysfunction (items 15 to 21) 
and severe depression (items 21 to 28) (See Appendix  E). Each item is scored on a 4 point Likert 
scale from 0 (Not at all) to 3 (Much more than usual) with total scores ranging from 0 to 84. A 
total score of 24 is a threshold for the presence of psychological distress. The scale has reliability 
as indexed by a Cronbach alpha of .95 (Sterling, 2011) and  .83 in the present study.  The 
psychometric properties of the measures used in this study are presented in Table 1 below. 
 
Table 3.2 Summary of Descriptive Statistics, Normality and Cronbach Alpha of the Various 
Measures (N=155) 
 
 N Min Max M SD Α Skewness Kurtosis 
Disclosure of Child's  
155 1 2 1.66 .474 -.70 -1.53 
HIV Status N/A 
MARS 155 2 10 5.75 1.906 .69 .42 -.43 
SCWBS 154 23 53 37.14 7.095 .85 .54 -.60 
ZBI 143 8 71 32.82 12.119 .83 .48 .03 
GHQ 147 6 73 23.15 10.534 .84 1.19 2.78 
α = Cronbach alpha; MARS = Medication Adherence Rating Scale; SCWB =Stirling Child 
Wellbeing Scale; ZBI = Zarit Burden Interview, GHQ= General Health Questionnaire.  
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3.8 Pilot Testing 
 
According to In (2017), a pilot study is an important and first step in an entire research 
process. It is usually a smaller-sized study which assists the researcher in testing adequacy of 
research instruments or tools assessing the viability of the main study and allows for the planning 
and modification of the main study among others (Van Teijlingen, Rennie, Hundley, & Graham, 
2001). Before collecting the qualitative data, three pilot interviews were conducted to ascertain the 
effectiveness of the interview questions in capturing the relevant information or data for the study. 
Given the difficulties encountered by the researcher in explaining some aspects of the interview 
questions during the pilot interviews, a translator was engaged to translate the interview guide into 
Twi which is widely spoken across the region to allow participants understand the questions being 
asked and respond appropriately. 
The measures used in the quantitative data collection were also pilot tested to check how 
reliable and comprehensible they were. A total of 35 caregivers of children with HIV and their 
children were purposively sampled from three of the research settings (PML Hospital, Ridge 
Hospital, and Tema General Hospital) for the pilot study. The outcome of the pilot study analysis 
indicated that participants understood the items on the questionnaire. Overall, the research 
instrument captured the relevant information related to medication adherence and psychological 
wellbeing in children living with HIV as well as caregiver burden and psychological health in 
caregivers of children living with HIV. Notwithstanding the small sample size for the pilot study, 
the findings suggested that the measures tested would be reliable in a larger sample.  
Of the 35 caregiver-child dyads administered, approximately 91% of the caregivers were 
females, while 63% of the children were males. All questionnaires used in the pilot study 
demonstrated acceptable Cronbach alphas of .70 and above in exception of the Medication 
Adherence Rating Scale. The Stirling Child Wellbeing Scale had an alpha of .91, Zarit Burden 
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Interview had .79, General Health Questionnaire, .79, and the Medication Adherence Rating Scale, 
.50. Although medication adherence had an alpha of less the acceptable.70, Cronbach alphas can 
vary depending on the sample size (Pallant, 2016). Usually smaller sample sizes yield Cronbach 
alphas less than .70 and hence the questionnaire was still used in the main study given that sample 
size would be larger. 
Based on these findings, the following modifications and decisions were made: It was 
decided that the caregiver-child dyads be administered to the participant by the researcher 
especially those who could not read and understand the English Language. This was due to the 
fact that most of the participants had a low educational background.  About 60% of the participants 
included in the pilot study had either no or just primary education. Majority of participants 
indicated they would be able to understand and express themselves in the Akan language than the 
English language. Hence, the questionnaire items were translated into Akan after the pilot study 
and this afforded the participants to better understand and respond appropriately on the scale items 
in the main study. 
3. 9 Procedure for Data Collection 
 
Ethics approval was received from the Institutional Review Board of the College of 
Humanities, the University of Ghana through the Department of Psychology (ECH:008/18-19). 
Approval was also received from the Greater Accra Regional Directorate of Ghana Health Services 
(GHS/GARHD/007/19) to allow data to be collected in their facilities. Further ethical clearance 
was received from the Korle Bu Teaching Hospital’s Scientific and Technical Committee 
(KBTH/MD/G3/19) as well as their Institutional Review Board.  
The research settings were visited a couple of times by the researcher to familiarize with the setting 
and staff of the facilities and also to ascertain how a typical clinic day looks like before data 
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collection began. Caregivers attending antiretroviral clinics with their children in each of the 
hospitals were approached and the purpose, benefits and potential risks of the study were explained 
to them. Confidentiality, anonymity, and freedom to voluntarily withdraw were assured 
participants (American Psychological Association, 2010). Those who willingly agreed and had 
duly signed the consent forms were allowed to take part in the research. The interviews were then 
conducted and were audiotaped or recorded with the permission of the participant. The interviews 
took place at the counseling units of each of the hospitals and were either conducted in English or 
in Twi based on the participant’s preference. The interview sessions spanned between 25 to 30 
minutes using the interview guide. Each participant was given a transport reimbursement of 
GH¢20. 00 after the interview session. The qualitative data collection took place between 15th 
March and 31st March 2019.  
The quantitative data collection begun after the qualitative results were transcribed and 
analyzed. Each of the hospitals described above was visited weekly on their specified clinic days 
from April to May 2019. All relevant information about the study was explained to the participants. 
After participants had signed the consent forms, items on the questionnaires were read out and 
response options given for participants to respond appropriately as the majority of the caregivers 
could not speak, read and understand English. A translated Akan version of the research 
questionnaire was therefore administered to them through the help of a trained research assistant.  
Those who were fluent and could read and write and were given the questionnaires to complete 
themselves. It took 15 to 20 minutes to complete each questionnaire. Caregivers did not receive 
any compensation for completing the questionnaires, however, each child was given tokens of 
pens, pencils, and erasers.   
 
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3.10 Ethical Considerations 
 
The study received ethical approval from three institutions: The Ethics Committee for the 
Humanities, University of Ghana, Greater Accra Regional Directorate of Ghana Health Services 
and the Korle Bu Teaching Hospital Institutional Review Board. The aims, benefits and other 
relevant information about the study were explained to prospective participants and only those 
who were willing and consented were allowed to take part in the research. Permission was sought 
to audio record interview sessions. It was made known to all who consented to take part in the 
study that all information gathered would be used solely for the purpose of this research. 
Participants were assured of confidentiality and anonymity of all information given. They were 
also made aware of the voluntary nature of the study and the freedom to withdraw from the study 
at any time.  By signing the consent forms, caregivers gave consent for themselves and their 
children to take part in the study. The children were below the age of 18 years and could not legally 
or ethically consent to take part in the study, hence the need for parental consent in compliance 
with the APA code of ethics in research (American Psychological Association, 2010).   
3. 11 Data Analysis 
 
3.11.1 Thematic Analysis 
 
Thematic content analysis was used to analyze the qualitative data (Braun & Clarke, 2013, 2006; 
Maguire & Delahunt, 2017). According to Braun amd Clarke (2006), there are six (6) basic steps 
in doing thematic analysis. This includes; familiarizing yourself with your data, generating initial 
codes, searching for themes, reviewing themes, defining and naming themes and producing the 
report. To help the researcher familiarize with the data, the transcript was read and re-read several 
times to allow her to be conversant with the entire data. Coding was then done which involved 
organizing the data into meaningful small chunks with labels. Themes were then searched for by 
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looking for patterns in the codes generated that were significant or interesting to the researcher. 
The themes were then modified, reviewed, and defined, after which the final report was produced.  
Trustworthiness of Data 
Connelly (2016) explains a study's trustworthiness as the level of trust in the information, 
analysis, and techniques used in a qualitative study. According to Shenton (2004), there are four 
main ways of ensuring trustworthiness in qualitative studies. These include credibility, 
transferability, dependability, and confirmability.  
Credibility relates to the confidence in the study's veracity. It responds to the issue of 
whether or not the study measures what is actually intended (Conelly, 2016; Shenton, 2004). 
Iterative questioning was used to ensure credibility by probe questions which ensured that data 
collected was comprehensive.  Also, peer and academic review of the results made it possible to 
challenge certain assumptions that helped shape and redefine the results. Transferability, on the 
other hand, relates to the extent to which a study's results can be applied to other circumstances 
(Conelly, 2016; Shenton, 2004). To guarantee this, the context, place, and individuals researched 
were comprehensively described. Also, a thorough description of the method of collection and the 
duration of the data collection was given to allow the results to be understood in the context of the 
participants, organizations and geographical area where it was carried out. 
Confirmability refers to how objective a study's findings are, while dependability relates 
to comparable outcomes if the study is repeated (Conelly,2016; Shenton, 2004). Detailed notes of 
all activities, decisions, and analyses during the research process were kept to ensure that the 
findings of this study reflect participants' experiences and opinions rather than researcher biases. 
 
 
 
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3.11.2 Quantitative Analysis 
 
Quantitative data was coded and entered into the Statistical Package for the Social Sciences 
(IBM SPSS) version 23 for further analysis. The data was first cleaned of duplicates and errors by 
running frequency and descriptive statistics for each item on the questionnaire. This was to ensure 
that all entries were within the range of possible scores on an item (Pallant, 2016). Errors detected 
in the coding and entering of data were then cross-checked from the respective questionnaires and 
corrected. Items that needed to be reverse scored were then recoded. Descriptive statistics or 
analysis were then run for the data to describe the characteristics of participants before further 
analysis was carried out.  
Preliminary Analysis  
Preliminary analyses started with an examination for missing values in the data set. Using 
Little’s MCAR test in SPSS, the result was not significant (p = .10). According to Tabachnick and 
Fidell (2013), a non-significant  MCAR test shows that the likelihood that the pattern of missing 
diverges from randomness is greater than .05, hence it can be assumed that data were missing 
completely at random. As such, the missing data did not create any serious risk for further analysis. 
The “exclude cases pairwise” option was therefore used to tackle missing data (Pallant, 2016).  
An important assumption underlying most parametric tests and multivariate analysis (in this case, 
MANOVA and Regression) is the assumption of multivariate normality which states that each 
variable and all linear combinations of the variables are normally distributed. Two measures of 
normality namely Skewness and Kurtosis were computed for each of the variables in the data set. 
All variables were within the range of -2 and +2 for skewness and -7 and +7 for kurtosis, indicating 
that scores on the variables were normally distributed (Byrne, 2013; Hair, Black, & Babin, 2010). 
Also, the reliabilities of the scales used were tested using Cronbach’s reliability analysis. 
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According to Pallant (2016), a scale is considered reliable if its reliability coefficient is above .70. 
As shown in Table 3.2 above, all the Cronbach’s alpha values were above .70 except the 
medication adherence questionnaire (α= .69) which was very close to the acceptable value.  
Hypothesis Testing  
Hypotheses one and two were tested simultaneously using multivariate analysis of variance 
(MANOVA). It was done in a bid to avoid using multiple independent sample t-tests and hence 
reducing the risk of an inflated type 1 error as suggested by Pallant (2016). Hypothesis three and 
four were also tested using multivariate analysis of variance. Hypotheses five and six were tested 
using the PROCESS macro version 3.3 created by Hayes (2012). PROCESS is a computational 
tool designed to simply examine moderation, mediation, and conditional process modeling. It is 
an easily downloadable file that can be installed in SPSS and SAS.  In accordance with Hayes 
(2009) recommendation, bootstrapping was set at 5,000 bootstrap samples and confidence interval 
at 95% to ensure a more valid and robust testing procedure for mediating effects in the present 
study. All assumptions such as linearity, normality, multicollinearity, and singularity were checked 
prior to conducting the analysis and none were significantly violated. Hypothesis seven (7) was 
tested using hierarchical linear regression. The results of the study are presented in the next 
chapter.  
 
 
 
 
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CHAPTER FOUR 
RESULTS 
 
4.1 Introduction 
 
This study was conducted in two phases; the qualitative study was the first phase and the 
second was the quantitative study. This chapter presents the findings or results from both the 
qualitative and quantitative studies. The analyses of the qualitative are presented first followed by 
that of the quantitative study. The qualitative results are discussed in themes and sub-themes 
followed the quantitative results which state whether each of the hypotheses stated was supported 
or not with detailed presentations of tables and their interpretations. 
4.2 Qualitative Results 
 
This section presents the results from the in-depth interviews conducted with the caregivers 
of children living with HIV. It covers the themes and subthemes generated from the analysis of 
the transcripts. The results of this section will be discussed in four thematic areas. For each theme, 
there are subthemes which capture the significant voices reflecting the views or experiences of 
caregivers of children living with HIV on disclosure of status and its impact on health outcomes 
in these children. To avoid giving out participants’ identity and as a means of ensuring the 
anonymity of participants’ responses, alphanumeric codes were used to identify the participants 
e.g. P1 representing Participant 1 (see Table 3.1 above). The table below gives a summary of the 
themes and their corresponding subthemes: 
 
 
 
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Table 4.1. Summary of themes and subthemes.  
Theme  Sub-theme 
The Diagnosis of HIV in Children Reactions to the diagnosis of child’s HIV status 
Testing of  caregivers  
Nuances in Disclosure Forms of disclosure 
Reasons for non-disclosure 
Reasons for disclosure and disclosure process 
Disclosure and Health Outcomes Emotional reactions to the disclosure of HIV status 
Medication adherence in children with HIV 
Improved physical health due to ART treatment 
Anxiety reduction in caregivers 
Challenges and Support Systems  Inadequate finances for caregivers 
for Caregivers Anxieties about lifelong medication adherence 
 Psychological distress and burden in caregivers 
Support from religion and spouses 
 
4.2.1 The Diagnosis of HIV in Children 
 
This theme captures how caregivers became aware of the HIV status of their children and 
how they reacted to the news of the diagnosis. The narratives of all participants point out that the 
children’s frequent illness and hospitalization were some of the reasons that led to the suspicion 
that something was wrong with the children. The narratives also indicated that the diagnosis of 
HIV in the children led to the awareness of the HIV status of most of the caregivers. Two sub-
themes formed this theme and are discussed below namely; Reactions to the diagnosis of child’s 
HIV status and Testing of caregivers. 
 
 
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Reactions to the Diagnosis of child’s HIV status 
Majority of the caregivers stated that they found out about the children’s status when they 
were very young and were falling ill frequently which led to hospitalization most of the times. The 
quotes below illustrate this:  
“When I got to know, the child was like about four months old. Now she is ten years old. 
When I gave birth to her, after three months, I noticed that she was getting ill very 
frequently, so I gave her some medicines and later took her to the hospital. So, they made 
us do a lot of tests and they found that the child had a disease like this” [P9, Female, 
39years, 10-year-old Daughter] 
“He was getting sick often. Something little then he will get sick. Today he is sick, tomorrow 
he is sick. So I took him to Iran Clinic. So they did a lot of lab tests but they said they didn’t 
see anything. So, later on, I said, let us come here. So when we came, they did the HIV test 
for us and they saw that he had the disease” [P3. Female, 27 years, 6-year-old Son] 
Hmm….. Now he is getting to 7 years …when I first got to know he was almost getting to 
2 years. When I gave birth to him and he was very small, I noticed that anytime he sleeps, 
his legs shake or tremble… He became seriously sick and I brought him here to this 
hospital. When we came here, they kept us at rehab. That was when I got to know. [P7, 
Female, 41 years, 7-year-old Son] 
From the quotes above, it is obvious that the caregivers noticed some health problems in 
their children as early as four months and two years and in the quest to access cure for these health 
problems found that their children had HIV.  Without the children falling ill frequently, perhaps 
these caregivers may not have discovered this diagnosis. 
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The news of the diagnosis of HIV in these children obviously elicited a lot of intense 
emotional reactions from the caregivers. The narratives show that almost all the caregivers 
expressed deep sadness upon hearing the news. Others were saddened and lost hope to the point 
where they contemplated thoughts of suicide while some expressed deep shock and surprise as 
reported below. 
“I was so terrified. It was left with something small like I would have killed myself”              
[P1, Female, 47 years, 10-year-old Daughter] 
“For that one, it wasn’t easy. It wasn’t easy at all. My heart….if I had pressure or 
hypertension, it would have come ...” [P2, Female, 34 years, 6-year-old Son] 
“It wasn’t that easy. I felt so bad. I went through a lot of challenges and I thought hmmm 
(chuckles)…my end had come because of something like this….  So maybe when I die then 
everything will end” [P9, Female, 39 years, 10-year-old Daughter] 
I was surprised but it had happened to me already… I cried so much, I was very sad. [P7, 
Female, 41 years, 7-year-old Son]. 
From the narratives above, it can be seen that the diagnosis of HIV in these children had a 
toll on caregivers as they did not take the news very lightly. Some were plunged to a state of 
despair, sorrow, shock, and hopelessness at the news of the diagnosis. It also indicates that 
caregivers went through very challenging times when they were told about the children’s 
diagnosis. These reactions are not out of the norm as they are typical to the diagnosis of many 
chronic and incurable diseases like HIV/AIDS. 
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Although caregivers expressed these deep emotional reactions to the news of the diagnosis, 
the words of encouragement, education, and support from the counseling departments at the 
various hospitals helped the situation, particularly for those contemplating suicide. As reported: 
“It was through teachings and counseling that made me stay but up till now, I feel sad and 
bad for me and my child…” [P1, Female, 47 years, 10-year-old Daughter] 
“… through constant talking and other things….like the education, how it’s ongoing, I got 
to know that it is not something that can kill you. Even someone with malaria can die, so 
it’s not the only thing that can kill someone…” [P2, Female, 34 years, 6-year-old Son]. 
Counseling played an important role in helping newly diagnosed patients maintain some emotional 
balance even after the disclosure of their HIV status or that of their children. The counselors help 
educate patients and their relatives to understand what the condition was as well as clear some of 
the myths and erroneous impressions about being diagnosed with HIV. 
“…..I thought there was no medication or treatment for it…ehee that’s how I saw it….But 
it was later that I found that there is a treatment for it so I started coming for the medication 
for her” [P9, Female, 39 years, 10-year-old Daughter] 
“Because at first, how the thing was, I knew there was no medication to treat it. So when 
they mentioned the name of the disease I was terrified. I thought so much about it that I 
even wanted to kill myself. But when I came to the hospital, they told me there are drugs 
for it and my child can be normal” [P3, Female, 27years, 6-year-old Son] 
The narratives above indicated that these caregivers were ignorant of the fact that there is treatment 
for HIV. However, through counseling and education from the health professionals, the 
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misconceptions these two caregivers had about HIV were cleared hence they were able to start 
antiretroviral therapy for themselves and their children.  
Testing of Caregivers  
Another interesting issue that emanated from the narratives of the caregivers was the fact 
that a majority of them were unaware of their HIV status until their children were tested and 
diagnosed. The narratives showed that there was further testing on caregivers and other family 
members after the children were diagnosed. As such, the diagnosis of the children led to the 
diagnosis of caregivers and other family members. Almost all caregivers who were the biological 
parents of the children involved tested positive, indicating that, most of these children were 
infected perinatally (that is, from mother to child). Therefore, these caregivers started treatment 
about the same time as their children. Below illustrated this; 
 “… when I was pregnant, they didn’t tell me anything. So he was 3 years almost getting 
to four years when we got to know…… It was my sister that noticed it and took him to the 
hospital before they did that test and they told her. So when she called me, then I closed 
my shop, it was late in the afternoon that I went there. But I said the way it is, then let’s all 
go and get tested. And when they did for him and me, they found that we all had it. Then I 
said his father should also come and get tested. So the three of us have it but his older 
brother doesn’t have it” [P3, Female, 27 years, 6-year-old Son] 
“Me, I can say from my side that if I didn’t get the disease through my delivery, the 
operation or surgical knives then it will be from my husband because my pregnancy was 
normal. I attended antenatal, did all the lab tests but I wasn’t told of anything like this until 
my child was diagnosed” [P1, Female, 47 years, 10-year-old Daughter] 
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These narratives above indicate that these caregivers were not infected at the time of 
pregnancy as they stated going through antenatal testing successfully. This could be an indication 
that these children were infected through other means of mother to child transmissions like 
childbirth or breastfeeding other than pregnancy. 
One caregiver, on the other hand, stated full awareness of her status but was unconvinced 
that she had been infected until her child was also diagnosed with HIV. 
“When I was pregnant, they told me about it but I wasn’t sure, I didn’t believe it… Yes, 
they did, they told me but I didn’t believe it. I was afraid of what people would say about 
me if they find out. It was when my child was diagnosed that I realized it was true” [P7, 
Female, 41 years, 7-year-old Son]. 
This caregiver failed to accept the news of her diagnosis which led to the infection of her 
child. This failure on her part to accept the diagnosis was due to the fear of stigma or being labelled 
as HIV positive and the negative impressions that society will have about her if others know about 
her diagnosis.  
4.2.2 Nuances in Disclosure 
 
This theme covers the views, opinions, and experiences of caregivers of children living 
with HIV on the disclosure of status to their children. Respondents were asked if they had disclosed 
the HIV status of their children to them and their reasons for either disclosing or not disclosing. 
They were also asked about the health of their children. Three subthemes are discussed under this 
theme namely; Forms of disclosure, Reasons for non-disclosure and Reasons for disclosure and 
disclosure process.  
 
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Forms of Disclosure 
Three forms of disclosure were observed from the narratives of the caregivers. These are 
non-disclosure, partial disclosure, and full disclosure. Non-disclosure involves caregivers 
withholding all information about the children’s HIV diagnosis from them. Partial disclosure 
involves caregivers informing their children that they had other conditions other than HIV while 
full disclosure, on the other hand, involves caregivers telling their children that they had HIV and 
that the medications were being taken as a treatment for HIV. Some caregivers reported in their 
narratives that, they had told their children that they had other conditions including poor 
metabolism, sickle cell, etc. The extracts below illustrates the point: 
“….I had to explain to him that there is something wrong with your metabolism so you 
need to take it to boost it and he said ok” [P6, Male, 40 years, 6-year-old Son] 
“…I have not told him anything. The only thing I have told him is that he has sickle cell 
and he will have to take the medications till the time he gets married”  [P8, Female, 
38years, 11-year-old Son] 
“No, I have not told him anything about it… Oh hmmm, even if I would tell him, I wouldn’t 
say it’s that disease or condition” [P5, Female, 40years, 10-year-old Son] 
From the extracts above, it can be noted that these caregivers were not prepared to give 
their children full disclosure of their HIV status due to one reason or the other hence the use of 
partial disclosure or a deflected information to ensure that the children continue taking their 
medication.   
Few caregivers, however, gave full disclosure, that is, they mentioned to their children that 
they had HIV. Below indicate this; 
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“…hmmm…. I told him that we all have AIDS…that he got infected when he was very 
young. It was a difficult thing to do but I managed I told him the truth” [P11, Female, 42 
years, 12-year-old Son] 
“Yes, I have. I told him about a year ago that he has the disease and that is the reason why 
he is taking the medicines every day” [P14, Female, 42 years, 12-year-old Son]  
It was also evident from the narratives nonetheless that disclosure rate among caregivers of 
children living with HIV was still low. That is, a greater percentage of the caregivers had not 
disclosed the status of their children to them. Out of the 15 caregivers interviewed, nine had not 
disclosed while six had disclosed the status of the children to them. The caregivers gave varying 
reasons for either disclosing or not disclosing as presented in the next subtheme.  
Reasons for Non-disclosure 
For most caregivers who have not disclosed the HIV status of their children to them, age and 
maturity were some of the defining factors for not disclosing. They were of the view that the 
children were not grown or matured enough to be told about their status. Closely linked to this was 
the argument by most caregivers that the children did not have the mental capacity to understand 
what the condition means and its implications, hence the reason for not informing their children 
about their HIV status. The extracts below captures this point: 
“For him, the way the mind is, I don’t know that…… hmm (chuckles)…. you see he is not 
grown so…… as for the child, a child of six years, what are you going to tell him that will 
be…..he has not gotten to the stage that he will understand. If he gets to that stage 
ahaaaa…. So when he gets to that stage then I can tell him” [P2, Female, 34 years, 6-year-
old Son] 
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“Mmmm how he is, I don’t think he will understand what it is even if I tell him. Maybe it 
is his siblings that will but for him, he won’t” [P7, Female, 41 years, 7-year-old Son] 
“Oh, he is not grown so I don’t want to tell him anything. So, I have not explained anything 
to him and he doesn’t know that he has it” [P8, Female, 38 years, 11-year-old Son] 
“Oh, now her mind is not matured, she is young but she takes her medication all the time” 
[P1, Female, 47 years, 10-year-old Daughter].  
From the narratives above, it can be noted that these caregivers were more concerned about 
how matured or how cognitively prepared the children were to understand their diagnosis hence 
the reason for non-disclosure.  
Other caregivers also expressed uncertainties as to how the children will take the news of 
the disclosure and therefore have not told them about their status. For instance, below says:  
“If I tell him, I don’t know how he would take it because he doesn’t even know the disease 
called HIV” [P3, Female, 27 years, 6-year-old Son] 
“Hmmm, if I tell him, I can’t tell how he would react to it. I am really scared of that, which 
is why I have not told him. Maybe, he’d get angry at me. I don’t know so I want to wait a 
little” [P5, Female, 40 years, 10-year-old Son] 
These caregivers are in a dilemma of how their children would react in case they tell them 
about the diagnosis. The fear of a child having negative emotional reactions prevented these 
caregivers from disclosing as seen above.  
Another pertinent reason given by a majority of caregivers who had not disclosed the HIV 
status of their children to them was the fear that the child might divulge the information about their 
HIV status to others. The caregivers feared that they themselves and their children would be 
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stigmatized or ill-treated by friends, family or the community if the information about the child’s 
status goes out hence the non-disclosure. The extracts below captures this; 
“Hmmm, you see, she is a child and if you are not careful and you tell her she will be 
telling people about it. You see this disease, if you are in someone’s house and you say you 
have a condition like that, they will even evict you from the house. They will sack you. So 
she has not gotten there yet.” [P4, Female, 38 years, 10-year-old Daughter] 
“You see these children are small. So maybe when he’s playing with other kids and he will 
be talking about it with his friends. When he is about 15 years and his mind is a bit matured 
then I can tell him but for now, no, I can’t tell him anything” [P5, Female, 40 years, 10-
year-old Son] 
“I have seen that she is very young. She doesn’t really have that wisdom, so if I tell her she 
can take it outside, maybe tell her friends. Her mind is not matured” [P9, Female, 39 years, 
10-year-old Daughter] 
From the narratives above, these caregivers did not want outsiders to know about their HIV 
status. They were afraid of the discriminatory treatments that will be meted out to them should 
others find out that they have HIV. For instance, caregivers above expressed fear of losing her 
accommodation should her landlord find out about the child’s HIV status. 
Again, other caregivers expressed some fear of having to disclose the status of their 
children to them. Some felt they might not be able to disclose to the children and may require the 
assistance of the health workers or counselors to do so. The narratives below indicate that; 
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“…when she grows up, what will I tell her? That it was through this or that that she got 
the disease? Maybe I will bring her to the counselors to talk to her or tell her about it. [P1, 
Female, 47years, 10-year-old Daughter] 
“…sometimes it pains me that when he’s grown up to a point I would have to tell him about 
it, I don’t really think about anything like that one, that I would tell him it’s because of this 
that’s why you’re on medication” [P5, Female, 40 years, 10 year old Son] 
From the narratives above, it can be observed that the main reasons for non-disclosure of 
HIV status among caregivers are age and maturity, inability to understand what the condition 
means, fear of children telling others about the diagnosis and fear of being stigmatized for the 
infection. 
Caregivers have enquired the age at which they thought it was appropriate to fully disclose 
to the children. Most of them mentioned late adolescence as the right time to disclose. Below are 
some of the excerpts that showed this: 
“Until he is grown a little, up to like…..even from the counseling they said until he is about 
18 years before you can tell him this” [P2, Female, 34years, 6-year-old Son]   
“Oh maybe when she is about 18, her mind will be matured a little so you can tell her that 
this is what is wrong with you” [P4, Female, 38 years, 10-year-old Daughter] 
“Oh, now he is young and I don’t want any kind of surprises that would affect him and all 
that. So I think I’ll wait till around maybe 12 or 13 there about, to really tell him what it 
is” [P6, Male, 40 years, 6-year-old Son] 
“..if he is grown up like his older brother who is around 12, then I can tell him. As for the 
older ones they know everything” [P7, Female, 41 years, 7-year-old Son] 
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These narratives above indicate that caregivers prefer to disclose during early or late 
adolescence by which time the children will be a bit matured cognitively enough to understand 
what HIV infection means and its implications.  
Reasons for Disclosure and Disclosure Process 
For those caregivers who disclosed, one of the main reason for disclosure was the fact that 
the children kept enquiring and asking questions about the medications they were taking.  
“…he was asking questions often. First, he asked why he was taking the medication every 
day. I couldn’t tell him anything. Hmmm…then, later on, he asked if he will ever stop taking 
it because when his friends get sick and they give them medicines, they stop taking it at a 
point but his never gets finished. It made me very sad, so I just decided to tell him” [P10, 
Female, 46 years, 11-year-old Son] 
“Hmmm…You know she is a very intelligent girl. It got to a point that she was frequently 
asking a lot of questions; why we keep going to the hospital for more medicine even though 
she is strong. Why don’t I want people to know she takes the medication and a whole lot. 
Why we keep our folders in a file while other patients don’t. At first, I kept lying about it 
but hmmmm….its hard [pauses]. I didn’t know what to say again so decided to let her 
know….” [P13, Male, 45 years, 14-year-old Daughter] 
The quotes above showed that as the children age into adolescence, they became more 
concerned and curious about why they are always on medications and started demanding 
explanations from their parents which prompted them to eventually tell the children about their 
diagnosis. 
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Some caregivers also expressed concern about poor adherence in some children which led 
to the disclosure of status. Caregivers explained that the children were unwilling to take their 
medication because they felt that they were strong enough to be taken off the medication. For 
instance; 
“At a point, he became fed up with taking the medication. He said they were a lot and he 
had to take them every blessed day which was tiring. I tried to force him into it but later 
on, I saw that he was throwing the medicines away. So I came to tell the nurse about it and 
they advised that he was old enough to be told, so they told him that he had HIV….” [P12, 
Male, 55 years, 15-year-old Son] 
“…he was not taking his medicines again. Sometimes I’d have to talk and shout in the 
house for so long before he goes to take it. You know…. we live in a compound house, and 
people are around but he will make me talk so much. He felt that he was strong so he 
doesn’t need the medicine again. I was afraid he will fall sick again so I decided to tell him 
about it” [P15, Male, 41years, 13-year-old Son] 
The narratives show because the children felt strong and fit, they were reluctant to adhere 
to or continue taking the medications as they did not see the need to continue the medications. 
Given the repercussions this can have on their health, caregivers decided to disclose to ensure that 
they understand why they have to continue the medications despite being fit physically.  
Other caregivers waited till their children were about transitioning to senior high school 
before disclosure was made to them. According to the caregivers, because the children were going 
to boarding school and they would not be available to supervise and make sure they take their 
medicines, disclosure was made. This was done with the aim of making the children understand 
why they take the medicines and ensure adherence even in school.  
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“Also, she was about going to SS…You know she already complains sometimes about the 
medicine, so I was afraid that when she goes to secondary school, she will stop taking it. 
So few weeks after he wrote her paper, I brought her to the hospital and they sat her down 
and talked to her” [P10, Female, 46years, 11-year-old Daughter] 
“I told him after the B.E.C.E. I knew it wouldn’t take long before he leaves for boarding. 
The nurses said he should be a day student, but he liked the boarding, so I decided to let 
him know that he has the disease. Mmmm…so that was the reason why I told him” [P14, 
Female, 42years, 12-year-old Son]  
Since the children were moving to high school or boarding school, these caregivers felt 
they will not always be around to monitor and make sure that the children take their medication. 
As a way of ensuring that the children take responsibility for their health and continue the 
medications even in their absence, caregivers had to disclose.  
One caregiver, on the other hand, felt the child was old enough to know about the condition. 
Also was the concern that the child may discover news about the disease through other means like 
on the internet hence disclosure was made to avert this. 
“Oh, I just wanted him to know. He is growing and I thought it was right to let him know 
rather than him finding out elsewhere which I am sure he will not be happy with…ehee… 
you know the children of today and internet and all that, so I told him about it” [P11, 
Female, 42years, 12-year-old Son] 
This caregiver felt that it was her duty to inform her child other than the child finding out 
on her own which may have negative consequences on the child.  
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Of the six caregivers whose children knew their HIV status, two did the disclosure 
themselves and four of them brought their children to the counseling unit at the antiretroviral 
clinics to be disclosed to. The four stated that they did not know how best to go about the process 
of disclosure.  
“I did not know what to say…hmmm, I felt it was too difficult for me. So I spoke to the 
nurses about it and they said ok, they would do it. So we arranged a meeting and I was 
there before they told him” [P15, Male, 41years, 13-year-old Son] 
“I knew that if I wanted to do it, I would cry …so much in the process. I felt the nurses 
knew more and can explain it better to her than me so the counseling people told her about 
it…ahaa but I was there when they told him” [P10, Female, 46years, 11-year-old Daughter] 
The narrative above showed that the disclosure process was difficult for caregivers as they 
did not know how best to go about it for fears of breaking down emotionally in the process. Also, 
caregivers did not have the needed information to adequately explain the condition to the children 
hence the need to fall on the health care providers to disclose. 
The two caregivers who disclosed however stated they sought some assistance from the 
health professionals. 
“I asked one nurse at the clinic how best to go about it because I wanted to tell him 
myself...I believe that I’m the best person to inform him not anybody outside, so I called 
him one dawn and told him everything” [P12, Male, 55 years, 15-year-old Son] 
This caregiver was of the view that it was his duty to inform the child about his diagnosis 
and therefore sought the needed help from the health care professionals in doing so.  
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Caregivers who disclosed themselves were probed about what exactly they told their 
children in the process of disclosure. The two caregivers said they mentioned the condition and 
the treatment options available to manage the condition.  
“Hmmmm…. I told him he has a disease called HIV/AIDS and that is the reason why he is 
taking the medicine every day. I also said that for now, the doctors said that there is no 
medicine that will make it go completely. So he will take the medicine till he dies…that 
that’s what I said” [P12, Male, 55 years, 15-year-old Son] 
“I said to her one dawn that…., you have asked me always why you take these medicines. 
It is because the doctors found when you were small that you have AIDS. They said it is 
caused by some virus. And the disease cannot be cured but there are medicines you take 
and be ok. So that’s why you are taking the medication and please keep it a secret because 
when you tell people they will use it insult and laugh at you” [P13, Male, 45 years, 14-
year-old Daughter]. 
From the narratives above, disclosure was a one-time event for these caregivers and the 
focus of the disclosure event was mainly the mention of HIV to the children and the need for strict 
adherence to medications. Emphasis was also laid by caregivers on the need for the children to 
keep the diagnosis a secret because of the stigma attached to the condition. The narratives did not 
indicate any conversations about the child’s condition after the disclosure event.  
4.2.3 Disclosure and Health Outcomes  
 
This major thematic area covers the narratives of caregivers about their health and that of 
their children with a particular focus on adherence levels, general physical health, and 
psychological health and wellbeing. Four sub-themes were derived from the narratives and 
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discussed namely: Emotional reactions to the disclosure of HIV status, Medication adherence in 
children with HIV, Improved physical health due to ART treatment and Anxiety Reduction in 
Caregivers. 
Emotional reactions to the disclosure of HIV status 
Caregivers described the reactions of the children to the news of the diagnosis with 
particular emphasis on their psychological wellbeing before and after disclosure. Caregivers 
reported that, after the disclosure was made, some children expressed some emotional distress 
characterized by feelings of deep sadness for a few weeks but later on observed improvement in 
the subsequent months. Below says: 
“I saw that the first three weeks that followed, she was very quiet. My child is very lively, 
she is most of the time all over the house, laughing and playing with the other children in 
the house. Hmm, it made me think a lot because when I asked what was wrong, she said 
was alright. So I really prayed for her but after some time she was back to herself” [P10, 
Female, 46years, 11-year-old Daughter] 
“Those times were difficult for him. After I spoke to him, he was ok but I started seeing that 
he was always alone. Yes… he no longer wanted to be in the living room with me in the 
evening to watch TV as he usually does. His younger brother even asked me if he was ok 
and I didn’t know what to say. So I personally called him and talked to him on a number 
of occasions before I saw some improvement” [P12, Male, 55 years, 15-year-old Son] 
These excerpts indicated that disclosure brought some emotional discomfort to the 
children. As seen above, caregivers reported feelings of sadness and withdrawal which were 
uncharacteristic of the children. These reactions to the disclosure were not unexpected owing to 
the fact that most people react intensely to the news or diagnosis of many incurable diseases like 
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HIV. The reactions were also due to the fact that the children were beginning to understand, and 
perhaps accept and come into terms with the implications of having HIV. With reassurance from 
the caregivers, the children eventually overcame these negative feelings and emotions. This means 
that the psychological support that children receive after disclosure plays an enormous role in 
helping the children overcome all negative emotions and also help them in coming to terms with 
the reality of the condition. As such, disclosure has to be a continuous process and not a one-time 
event and should be done with the help of trained professionals like psychologists who would 
continue to provide psychological support for this children even after disclosure is made.  
Medication Adherence in Children with HIV  
The narratives of the caregivers interviewed indicated that generally there was poor 
adherence among the children particularly those whose HIV status has not been disclosed to them. 
They indicated that most of the children found it difficult taking the medication, complained or 
and expressed feelings of being tired or fed up. Below are the voices that captured this:  
“…sometimes when you give him the medication to take, he hides and throws it away. Even 
when you give it to him to take to school and eat before taking it, he throws it away” [P8, 
Female, 38 years, 11-year-old Son] 
“It’s hard for him. So sometimes, I use………I have to make it like something that is nice 
for him. So I have started using honey to mix the medications for him so he will get that 
taste that it is nice. If not that….he doesn’t like taking medications. Yea, that one there are 
no two ways about that. If he tastes it and it is not nice, he wouldn’t take it” [P2, Female, 
34 years, 6-year-old Son] 
“Oh sometimes, she says, “ahhh, I am taking medications all the time, I won’t take it 
again” [P1, Female, 47 years, 10-year-old Daughter] 
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The narratives above are from caregivers who have not disclosed and indicates that non-
disclosed children have challenges with adherence as they sometimes refuse to take their 
medication or throw them away resulting the increased number of missed doses.  
Although these caregivers indicated poor adherence in their children, few, however, stated 
that their children were complaint and took the medications appropriately. This was particularly 
true for those children who are aware of their status. Caregivers stated that they showed more 
responsibility towards taking their medication since they knew the reason why they were taking 
them. Below are the excerpts that indicated this:  
“He takes the medications. That was one of the main changes I noticed after the counselors 
had spoken to him. I’m sure he knows that his life depends on it, so I don’t talk plenty like 
previously. Even if it is getting time for us to go for the medicines, he reminds me about it 
and we all go” [P12, Male, 55 years, 15-year-old Son] 
“At first he complained a lot ahaaa….yes but after we told him, he takes it himself and 
does not miss any dose. Now he knows that taking the medicine is for a reason…”  [P15, 
Male, 41years, 13-year-old Son] 
The narrative of these caregivers shows that disclosure resulted in more responsible health 
behavior, particularly towards medications. Disclosure enabled children to understand the 
condition they were suffering from and why the need for lifelong medication hence improved 
adherence.  
Improved physical health due to ART treatment 
Also, caregivers reported improved and quite satisfactory physical health in children living 
with HIV. According to these caregivers, the initiation of the antiretroviral therapy had a 
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significant influence on their physical health and as such are fit and healthy. Quite a number of the 
caregivers who reported frequent hospitalization before the diagnosis stated that it has reduced 
drastically. Below are the excerpts that illustrate this:  
“Oh, his health is very good. When we started taking the medication everything has 
changed. But at first, he was getting sick very often, something little and then he will be 
sick. Now everything has changed. His eating and sleeping, everything has changed. At 
first, he couldn’t sleep. He will sweat so much and always he will be crying but everything 
has come down. I don’t see anything again” [P3, Female, 27years, 6 years Son] 
“Oh he is better than before because even in those days because of the prolonged cough, 
he wouldn’t eat much, he couldn’t play with other kids, he couldn’t go out, he was always 
in the house and all that, he was weak and because of the cough and the pain, he couldn’t 
mingle but since he started taking the medication, he’s gotten better: he rides his bike, he 
goes to play soccer … since then he’s not even complained of a headache and that’s almost 
11 months, he’s not gotten sick, headache, anything, no complain since then” [P6, Male, 
40 years, 6-year-old Son ] 
“Oh her health is ok. Since the day we found out that it was this that was disturbing her, 
she has never fallen ill. So if we say we are coming to the hospital, this is where we come. 
But aside we coming for a refill of our medications, she has never fallen ill for me to bring 
her to the hospital “[P9, Female, 39 years, 10-year-old Daughter] 
It is evident from the narrative above that generally, almost all caregivers reported better 
physical health for their children after beginning antiretroviral treatment. Only one caregiver, 
however, complained of dwindling or declining physical health in the child.  
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“Her health is not so good. She doesn’t really have that strength. I don’t see her as strong 
…..She’s going down. She keeps going down. She’s become slim and she’s not putting on. 
And she gets sick very quickly. Within a short space of time, then she becomes sick” 
[P4, Female, 38 years, 10-year-old Daughter] 
Anxiety Reduction in Caregivers 
The sub-theme discusses the impact of disclosure of status on caregivers themselves. 
Caregivers were of the view that disclosing the status of the children to them affected some way. 
Generally, the accounts indicated that disclosure eliminated the anxieties or worries that caregivers 
had about having to tell the children about their condition. Below says: 
“Well, I can say that before he was told, I was afraid of what to tell him. That was one of 
my greatest problems but now that he is aware, that fear is no longer there. Yes…. That’s 
what I can say” [P15, Male, 41years, 13-year-old Son] 
“Oh, first I was worried about what to tell him if he grows up and how he will take it if he 
eventually knows. Yes, telling him cleared those worries. However, I’m still concerned 
about the future. So that is the change I can say I have noticed” [P12, Male, 55 years, 15-
year-old Son] 
“I used to feel that when I tell her, she will blame me for giving her the disease, but after 
everything, that feeling left, but the problems we have are still there. Nothing has changed 
that much aside from her knowing. The money issues are still there you know…ahaa…” 
[P10, Female, 46years, 11-year-old Daughter] 
From the narratives above, it can be noted that the anxiety that caregivers had about having 
to disclose subsided eventually when disclosure was made. This means that disclosure reduced to 
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some extent the distresses faced by caregivers. However, they stated that most of the challenges 
they encounter particularly those relating to finances and uncertainties about the future of the 
children continue to persist.   
4.2.4 Challenges and Support Systems for Caregivers 
 
This theme explains the experiences caregivers have had in taking care of children with 
HIV. Particular focus or attention was paid to the challenges they encounter as well as support 
systems which have helped them cope with the challenges. The accounts show that most caregivers 
face serious financial challenges, emotional and psychological distress, and burden. Some also 
expressed concern over the lifelong usage of medication by the children. Support from 
religion/faith and partners helped caregivers deal with the many challenges they face on a daily 
basis. Four subthemes are discussed below namely: Inadequate finances for caregivers, Anxieties 
about lifelong adherence, Psychological distress, and burden in caregivers and Support from 
religion and spouses. 
Inadequate Finances for Caregivers 
Although antiretroviral treatment is entirely free in almost all hospitals across the country, 
almost all caregivers interviewed complained of inadequate financial resources as one of the 
greatest challenges they encounter in caring for children living with HIV. Below indicated this. 
“It’s difficult. It’s really difficult….hmmm (sighs) it’s an issue, ….. You will pay rent, you 
will pay for light and if you don’t have that chunk of money to pay for these 
things…..hmmm, life is just miserable and this disease has added to it. Sometimes if it’s 
time for me to go for my medicines, sometimes it will be left with my last 5 cedis, I have to 
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pick a car. I go for mine at Mamprobi. I have to pick a car and go there too” [P4, Female, 
38 years, 10-year-old Daughter] 
“Mmmmm…..financially yeah….. because I have to be coming to the hospital all the time 
for review and lab tests. Even though there are some of the drugs that are mainly free…. 
but you have to take transport here. Yeah…. And I think recently they have been giving us 
some drug for….Septrin but before that, we were buying the Septrin and also there is also 
the burden of buying blood tonic because he has to be taking it often. So it’s a strain 
financially” [P6, Male, 40 years, 6-year-old Son] 
“Financially, now that I’m not working it has really affected me. My money issues are not 
really good” [P9, Female, 39 years, 10-year-old Daughter] 
From the descriptions above, it is clear that caregivers did not have adequate financial 
resources to cater for transportation to and from the hospitals, to pay for rent or accommodation 
and buy some needed medications like blood tonic for the children. The plight of these caregivers 
is worsened by the fact that some are single parents, hence the upkeep of the children is entirely 
dependent on them. Below said: 
“They are three in total but their father died a few years back, so, I am the only taking care 
of the three of them” [P4, Female, 38 years, 10-year-old Daughter] 
“...when the disease came and I told him, he was not bothered and we were all living fine 
but recently, about 5 years ago and he runs away and left us” [P1, Female, 47 years, 10-
year-old Daughter]. 
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These excerpts show that the caregivers are single-handedly shouldering the responsibility 
for these children because their partners are unavailable to assist in taking care of the children and 
this accounts for why these caregivers complain of financial difficulties. 
Anxieties about Lifelong Medication Adherence 
One key challenge that runs through the accounts of the caregivers was the worry and 
concern about the children staying on medications for the rest of their lives. Some caregivers 
expressed the desire or wish that their children would be taken off the medication someday. Others 
also expressed fear of possible relapse in the future as presented below. 
“The challenge I can say…, is for any parent to have his child taking medication for the 
rest of his life. This one is really daunting for me. It weighs you sometimes, you 
understand” [P6, Male, 40 years, 6-year-old Son] 
 “…the only thing I worry about is she taking the medication every day ehee…. I’ve seen 
that if it were any other different illness, she would have stopped taking the medication. 
Now that it’s this one, I ask myself, how long this child will be able to continue taking this 
medicine. For me, I have seen that I’m grown. I have come far but I see her as a child” 
[P9, Female, 39 years, 10-year-old Daughter] 
“…I don’t really think about anything like that one that I would have to tell him it’s 
because of this that’s why you’re on medication. So I’m praying that by God’s grace it 
would get to a point where he will stop the medication” [P5, Female, 40 years, 10-year-
old Son]. 
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“…it’s such that you don’t know if in the future there will be a relapse, you never know. If 
the drugs are….For now, the drugs are working but you never know when there will be 
relapse” [P6, Male, 40 years, 6-year-old Son]. 
These excerpts show the concern, worry, and anxiety that caregivers expressed over their 
children having to take medications for the rest of their lives. They were of the opinion that these 
children are young to be subjected to medications for life. Also, there was the concern about 
whether the children will be able to adhere to the medications for that long and hence the wish that 
the children will stop taking the medications at some point. Others also had fears about the efficacy 
of the drugs in managing the condition in the long term.  
Psychological Distress and Burden in Caregivers. 
Regardless of whether the disclosure was made to the children or not, most caregivers 
narrated that they experience some psychological distress in caring for children living with HIV. 
This is characterized by feelings of deep sadness and sorrow at the plight of their children. Below 
are some of the excerpts: 
“…if you sleep and think about these things, it makes you sad. And if you want to think 
about it a lot too, it makes your head ache, so when I think about it a little, then I stop and 
put it aside” [P4, Female, 38 years, 10-year-old Daughter] 
“It makes me sad all the time. And also maybe when I come to the clinic and I see these 
children like that, it makes me feel bad, and it makes me sorrowful within (sobbing)…”  
[P1, Female, 47 years, 10-year-old Daughter] 
“...it has affected me… there’s sadness always within me….ehee. I’m always sad” [P8, 
Female, 38 years, 11-year-old Son] 
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“It makes me feel bad. I think a lot. I feel like my life is left behind. Everything of mine is 
spoilt. The way I want to move to forward, I’m not moving” [P9, Female, 39 years, 10-
year-old Daughter] 
These narratives indicate the varying forms of distress experienced by caregivers as a result 
of the experiences they go through daily. Most of these are feelings of deep sadness and sorrow, 
headaches, pain and feelings of stagnation and retrogression. This distress reported by caregivers 
could be precursors to serious mental health challenges in these caregivers if not handled 
professionally.  
Closely linked to the distress experienced by caregivers is the burden of caring for children 
with HIV. Some caregivers explained that because of their children’s condition and fear of people 
knowing about their status they are not able to seek assistance or help from anyone in taking care 
of the children. The quote below expressed participants concerns;  
 “Taking care of him is not easy because now you cannot leave him for anyone to take care 
of him. Even if you are going somewhere, you have to come back early and take care of 
him because you may not know the person you are leaving him what and you don’t know 
how that person will talk and all that” [P2, Female, 34 years, 6-year-old Son] 
“…I can’t go anywhere very far and leave her. Because if I go and leave her, she wouldn’t 
be able to take her medication, she’s young. So maybe if I travel she’ll not be able to take 
her medication” [P9, Female, 39 years, 10-year-old Daughter] 
The narratives show that caregivers are forced to single-handedly cater for the wellbeing 
of their children because of fears of others knowing about their condition should they seek 
assistance. This could significantly contribute to stress in these caregivers and coupled with the 
aforementioned distresses, could have devastating effects on the health of caregivers.  
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Some also stated their inability to work, and other family responsibilities as some of the 
reasons that contribute to the burden of care. 
 “My work issues too, it has made the work some way. …as any human being, if you are 
there, you have to work. Because I have my mom there, I have siblings that I’m helping 
through school and others. Now that my work has gone down, it’s making us go through 
some sufferings….mmmm” [P9, Female, 39years 10-year-old Daughter] 
“…now I can’t sell again because there is no money. From the time they discharge us from 
the hospital around December, things have not been moving on well, things are not good 
again” [P8, Female, 38 years, 11-year-old Son]  
These excerpts are concerns of caregivers about their inability to ply their various trades or 
work because they have to always be available to take care of their children. Given the fact that 
they have other family responsibilities, it makes the burden of care very huge.  
Support from Religion and Spouses 
Caregivers reported that they received support in coping with the challenges they face in 
performing their caregiving role.  They stated faith/religion as the main source of support or help 
in strengthening and encouraging them to withstand some of the challenges they encounter. The 
excerpts below illustrate this:  
“I have been helped by my faith. I believe in the Lord Jesus Christ and I believe 
…..erhnnmm we are strong concerning every circumstance, we are independent of every 
circumstance and this is one of them, I am just riding through it winning and winning. Even 
though they will call it this way, I know I’m winning” [P6, Male, 40 years, 6-year-old Son] 
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“It’s God. The only thing is God. If you worship God, you give everything to him. You 
continue praying, everything will be fine. So it’s only God and prayer that I hold on to” 
[P8, Female, 38 years, 11-year-old Son] 
The excerpts above indicate the caregiver's faith in God and Jesus Christ, the belief in the 
power of prayer and the Christian teachings of tenacity in all circumstances provided them with 
the needed support to sail through their daily challenges.  
While some caregivers complained of the unavailability of their partners as a major 
challenge they encounter, caregivers who were still with their partners stated that they were a great 
source of support in dealing with the stresses and challenges they face in the care of the children.  
“…the man I am staying with doesn’t have the disease. He is not infected, so sometimes he 
is the one that even gives me words of encouragement…you see what has helped me is that 
…., he makes me happy. If you live in happiness you can do everything. If the person 
disturbs you, that’s when you can say that you can’t do anything so he makes me happy so 
I’m not in any difficult situation” [P5, 40 years, 10-year-old Son] 
“Ok, what has helped me is my husband. He strengthened me all these while that I was 
going through all these challenges. He is someone that if he has time, he talks to me. He 
told me that any challenge that I would go through, it’s from God, that I should take it that 
it is God’s test. So things like that give me strength, hope and courage” [P9, Female, 39 
years, 10-year-old Daughter] 
Here, we see that the spouses provided these caregivers the needed support, strength and 
courage to handle their daily challenges. Also, the presence of the spouses and their words of 
encouragement produced positive emotions and feelings of happiness in these caregivers 
regardless of their condition.  
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Some other caregivers also stated receiving support especially financial support from 
benevolent individuals which helped a long way in easing some of the constraints they faced 
financially.  
“Hmm, for my child, the name that he carries….God is really miraculous. Sometimes 
there’s someone there who doesn’t even know him when he hears the name and I’m walking 
with him and they go like, is he there? Take this and give it to him” [P7, Female, 41 years, 
7-year-old Son]. 
This narrative shows that the assistance of these well-meaning individuals sometimes provided 
relief in dealing with some of the financial challenges that this caregiver encountered. In summary, 
it can be said that support from religion, spouses and benevolent individual aided caregivers to 
cope with their challenges.  
4.3 Quantitative Results 
 
4.3.1 Socio-demographic characteristics of Participants 
 
The final sample for this study comprised 155 children living with HIV and their caregivers 
respectively.  The caregivers in the study were within the ages of 22-82 years, with a mean age of 
41.60 (SD = 10.38). Of the 155 caregivers sampled, 119 (76.8%) were females. A majority of the 
caregivers had no education at all or just basic education (47.1%) and 30.3% having tertiary 
education. The children, on the other hand, were within the ages of 6 – 15 years with a mean age 
9.55 (SD = 2.72). Of this number, 83 (53.5%) were males.  A majority of the children were unaware 
of their HIV status (66.5%) while 33.5% were aware of their status. Details of the demographic 
information of the caregivers and children are presented in Table 4.2 below: 
 
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Table 4.2 Socio-demographic Information of Caregivers and Children (N = 155) 
Variables                                             Number Percentage 
Gender of Caregivers    
 Male 36 23.2 
 Female 119 76.8 
Caregivers’ Age (M= 41.60; SD= 10.38)   
 18-40 82 52.9 
 41-60 64 41.3 
 60+ 9 5.8 
Caregivers’ Education   
 No Education 11 7.1 
 Primary Education 62 40.0 
 Secondary Education 35 22.6 
 Tertiary Education 47 30.3 
Caregivers’ Relationship with Child   
 Biological Parent 85 54.8 
 Extended Family 48 31.0 
 Guardian 22 14.2 
Disclosure of Status   
 Disclosed 52 33.5 
 Non-disclosed 103 66.5 
Child’s Age (M= 9.55; SD = 2.72 )   
 6-10 95 61.3 
 11-15 60 38.7 
Gender of Child   
 Male 83 53.5 
 Female 72 46.5 
Child’s Education   
 Primary Education 144 92.9 
 Secondary Education 11 7.1 
 
5.3.2 Relationship among study variables  
 
Person Product Moment Correlation test was computed among all study variables to establish 
the relationship between the study variables. This is a prerequisite for conduction regression or 
mediation or moderation analysis. The correlation matrix was generated as shown in Table 4.3 below 
indicating all the significant relationship among the study variables with asterisks (*). 
 
 
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Table 4.3 Correlation Matrix of Various Study Variables 
      1 2 3 4 5 
1. Disclosure of Child’s HIV Status     1     
2. Length of Disclosure -.76**    1    
3. MACHIV -.53** .48**    1   
4. PWCHIV -.63** .58** .60**   1  
5. CB  .17* -.13 -.06 .02    1 
6. PHC  .08 -.01 -.07 .01   .61** 
NOTE: MACHIV = Medication Adherence in Children living with HIV, PWCHIV = 
Psychological Wellbeing in Children living with HIV, CB = Caregiver Burden, PHC = 
Psychological Health in Caregivers. 
Note: * p < .05, ** p < .01 (one-tailed) 
 
Findings in Table 4.3 above indicated that there was a significant relationship between 
disclosure and medication adherence in children living [r (155) = -.53, p<.01], disclosure and 
psychological wellbeing in children living with HIV [r (155) = -.63, p<.01], disclosure and caregiver 
burden [r (143) = .17, p<.05], as well as disclosure and length of disclosure [r (155) = -.76, p<.01]. A 
significant relationship was also found between length of disclosure and medication adherence [r (155) 
= .48, p < .01] and psychological wellbeing [r (154) = .58, p<.01].  Additionally, a significant 
relationship between medication adherence and psychological wellbeing in children living with HIV 
was observed [r (154) = .60, p < .01]. Caregiver burden was found to be significantly associated with 
psychological health in caregivers of children living with HIV [r (135) = .61, p=.01].  
 
4.3.3. Hypothesis One and Two 
 
The first hypothesis stated that “Children whose HIV status have been disclosed will report 
better antiretroviral adherence than those whose HIV status have not been disclosed” and the 
second that “Children whose HIV status have been disclosed will report better psychological 
wellbeing outcomes than those whose HIV status have not been disclosed.” To test these two 
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hypotheses, a one-way between-groups multivariate analysis of variance (MANOVA) was 
employed. Total medication adherence and psychological wellbeing scores were entered as the 
dependent variables and disclosure of status as the fixed factor or independent variable. The 
Levene test for equality of Variances showed that the two dependent variables had significant 
levels below .05 indicating that, the assumption of the equality of variances for scores in the 
dependent variables were violated.  Accordingly, the Pillai’s Trace (V) multivariate test of 
significance (see Table 4.4) was reported with a stringent alpha of .01 as suggested by Pallant 
(2016) and  Tabachnick and Fidell (2013). Results showed that there was a statistically significant 
difference between children whose HIV status have been disclosed and those whose status have 
not been disclosed on the combined dependent variables, F (2, 151) = 57.3, p <.001; V= .43; partial 
eta squared = .43. This means that children whose HIV status have been disclosed differed 
significantly from those whose status have not been disclosed on medication adherence and 
psychological wellbeing scores.  
The results for each dependent variable was considered independently and both medication 
adherence and psychological wellbeing reached statistical significance, using a Bonferroni 
adjusted alpha level of .025. Both medication adherence [F (1, 152) = 60.09, p < .001, η2= .28] 
psychological wellbeing [F (1, 152) = 99.09, p < .001, η2= .40] were significant (see Table 4.5). 
An examination of the mean scores showed that children whose HIV status have been disclosed 
reported better medication adherence (M = 7.17, SD = 1.88) than those whose status have not been 
disclosed (M = 5.03, SD = 1.48). Similarly, children whose status have been disclosed reported 
better psychological wellbeing (M = 43.37, SD = 6.75) than those whose status have not been 
disclosed (M = 33.97, SD = 4.81). This goes to confirm hypothesis one and two that children whose 
HIV status have been disclosed have better medication adherence and psychological wellbeing 
than 
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those whose status have not been disclosed. This means that disclosure resulted in better adherence 
and psychological wellbeing in children whose status have disclosed compared to those whose 
status have not been disclosed. Summary of the MANOVA and Univariate results are shown in 
Table 4.4 and 4.5 below: 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
                                                                                                                                                                                     
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Table 4.4 MANOVA tests for group differences between disclosed and non-disclosed children on medication adherence  
and psychological wellbeing 
MANOVA Test Value F df p η2 
Pillai’s trace (V) .43 57.30 2 <.001 .43 
Wilks’ Lambda (λ) .57 57.30 2 <.001 .43 
Hotelling’s trace (T) .76 57.30 2 <.001 .43 
Roy’s largest root () .76 57.30 2 <.001 .43 
 
Table 4.5 Table of significant univariate effects of disclosure on medication adherence and psychological wellbeing
DV df df error F p η2 Disclosure M            99.9% CI 
Lower Upper 
Medication Adherence 1 151 60.09 <.001 .28 Yes 7.17 6.73 7.62 
No 5.03 4.71 5.35 
Psychological Wellbeing 1 151 99.09 <.001 .40 Yes 43.36 41.85 44.88 
No 33.97 32.89 35.05 
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4.3.4 Hypotheses three and four 
 
Hypothesis three stated that “Caregivers who have disclosed the HIV status of their 
children will have better psychological health than caregivers who have not disclosed” and four 
that “Caregivers who have disclosed the HIV status of their children will have lesser caregiver 
burden than caregivers who have not disclosed”. These hypotheses were tested using a one-way 
between-groups multivariate analysis of variance (MANOVA). Total scores for caregiver burden 
and psychological health were entered as the dependent or outcome variables and disclosure of 
status as the fixed factor or independent variable. No assumption was violated per the outcome, 
therefore the Wilks’ Lambda (λ) multivariate test of significance was reported.  
The results indicated that there was no statistically significant difference between 
caregivers who have disclosed the HIV status of their children and those who have not disclosed 
on the combined dependent variables, F (2, 132) = 1.51, p = .223; λ = .98; η2= .02. (See Table 4.6) 
This means that caregiver burden and psychological health of caregivers who did not disclose did 
not differ from caregivers who disclosed the HIV status of their children. Although an inspection 
of the means showed that caregivers who have disclosed had slightly lesser scores on caregiver 
burden (M = 30.48, SD = 1.86) compared to those who have not disclosed (M = 34.33, SD = 1.25), 
this did not reach any statistical significance (See Table 4.7). Non-disclosed caregivers on the 
contrary to hypothesis three had higher scores on psychological health (M = 24.14, SD = 1.12) 
than disclosed caregivers (M = 22.55, SD = 1.66) yet this difference was also insignificant as 
observed in Table 4.7 below. Hence hypotheses two and three were not supported.
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Table 4.6 MANOVA tests for group differences between caregivers who have disclosed and those who have not on caregiver 
burden and psychological health.  
MANOVA Test Value F df p η2 
Pillai’s trace (V) .02 1.52 2 .22 .02 
Wilks’ Lambda  (λ) .98 1.52 2 .22 .02 
Hotelling’s trace (T) .02 1.52 2 .22 .02 
Roy’s largest root () .02 1..52 2 .22 .02 
 
Table 4.7 Table of univariate effects of disclosure on caregiver burden and psychological health 
DV df df error F p η2 Disclosure M            95% CI 
Lower Upper 
Caregiver Burden 2 132 2.95 .22 .02 Yes 30.48 26.79 34.16 
No 34.33 31.56 36.80 
Psychological Health 2 132 .63 .22 .005 Yes 22.55 19.26 25.83 
No 24.10 21.93 36.35 
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4.3.5 Hypothesis five 
This hypothesis stated that “Duration of disclosure will mediate the relationship between 
disclosure and medication adherence of children living with HIV”. To test if the association between 
disclosure and medication would be mediated by how long a child has known, a mediational 
regression analysis was performed using the Model 4 of the PROCESS macro version 3.3 created by 
Hayes (2012) with a recommended bias-corrected bootstrap confidence interval of 95% and 
bootstraps set at 5,000. In the analysis, medication adherence in children living with HIV was entered 
as the outcome variable.  
The first regression model was significant, R2 = .57, F (1, 153) = 204.46, p < .001 (See Table 
4.8) and showed that duration of disclosure is predicted by disclosure of status (B = -19.03, p < .001). 
In the second model which reflects the direct effect of disclosure of status on medication adherence 
accounting for the mediator, results showed that the model was again significant, R2 = .30, F (2, 152) 
= 31.99, p < .001 with disclosure of status significantly predicting medication adherence (B = -1.60, 
p = .001); however, duration of disclosure did not predict medication adherence (B = .03, p = .11). 
For the total effect output which reflects the effect of disclosure of status on medication adherence 
without accounting for the mediator (duration of disclosure), it was shown that the model was 
significant, R2 = .28, F (1, 153) = 60.70, p < .001, and medication adherence was significantly 
influenced by disclosure of status (B = -2.14, p < .001). This means that disclosure predicts adherence 
to medication in children with HIV. The indirect effect of the relationship between disclosure of status 
and medication adherence as mediated by the duration of disclosure, however, was statistically not 
significant because the estimated confidence interval included zero (95% CI: -.61 to .10) as indicated 
in Table 4.8 below. This means that the relationship between disclosure and adherence cannot be 
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explained by the duration of the disclosure. Therefore, the hypothesis that the relationship between 
disclosure and medication adherence is mediated by duration of time after disclosure was rejected. 
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Table 4.8 Mediational analysis of disclosure and medication and psychological wellbeing via duration of disclosure 
 Medication Adherence Psychological Wellbeing 
(n = 155) (n = 154) 
 B (SE B) p B (SE B) p 
Constant 38.13 2.30 <.001 38.13 2.31 <.001 
DD .03 .02 .10 .14 .06 <.01 
Disclosure predicting DD -19.03 1.33 .<001 -19.03 1.33 <.001 
Direct Effect of Disclosure -1.63 .42 <.001 -6.63 1.41 <.001 
Total Effect of Disclosure -2.14 .27 <.001 -9.39 .94 <.001 
 
Indirect effect of Disclosure via DD on DVs; -.51 .34  -2.76 1.17  
95% CI; (B [SE B]) 
 (-1.17 [.18]) (-5,05 [-.41]) 
R2  
 .30 .42 
Note: DD = Duration of Disclosure 
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4.3.6 Hypothesis Six 
Hypothesis six stated that “Duration of disclosure will mediate the relationship between 
disclosure and psychological wellbeing of children living with HIV”. This hypothesis was also tested 
using Model 4 of the PROCESS macro version 3.3 by Hayes (2012) with a confidence interval of 
95% and bootstraps set at 5,000. Psychological wellbeing in children living with HIV was entered as 
the outcome variable with disclosure of status as the independent variable and length of disclosure as 
the mediating variable.  
The output indicated that first regression model was significant, R2 = .57, F (1, 152) = 202.44, 
p < .001 (See Table 4.8), and showed that duration of disclosure is predicted by disclosure of status 
(B = -19.03, p < .001). The second model reveals the direct effect of disclosure of status on 
psychological wellbeing taking into consideration the mediator and the output showed that the model 
was again significant, R2 = .42, F (2, 151) = 54.73, p < .001 with disclosure of status (B = -6.63, p = 
.001) and duration of disclosure (B = .14, p = .01) significantly predicting psychological wellbeing. 
The total effect model output which indicated the effect of disclosure of status on psychological 
wellbeing without the mediator (duration of disclosure) showed that the model was significant, R2 = 
.39, F (1, 152) = 99.09, p < .001 and psychological wellbeing was significantly influenced by 
disclosure of status (B = -9.39, p < .001). The indirect effect of the relationship between disclosure 
of status and psychological wellbeing as mediated by the duration of disclosure was statistically 
significant. This is because the estimated confidence interval was totally below zero (95% CI: -5.05 
to -.41). This means that the relationship between disclosure and psychological wellbeing is explained 
by the duration of the disclosure. Hence the hypothesis that the relationship between disclosure and 
psychological wellbeing in children living with HIV is mediated by the duration of disclosure was 
confirmed. Table 4.8 above gives a summary of the mediation analysis.  
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4.3.7 Hypothesis Seven 
This hypothesis stated that “Age will predict disclosure of status in children living with HIV” 
In testing this hypothesis, hierarchical regression was performed with disclosure of HIV as the 
dependent or outcome variable and child’s age as the predictor. The caregiver’s demographic 
variables —age, gender, education, and relationship with the child were entered in the first model, 
followed by the other demographic variables of the child—gender and education—which was entered 
in the second block. The purpose of this was to control their effects before entering the main predictor 
– child’s age into the last block. 
The results from the regression (see Table 4.9) revealed that the first model in Disclosure of 
Status having caregiver’s characteristics as predictors was significant F (4, 150) = 3.05, p = .019; R2 
=.08, with caregivers sex (β = .19, p = .025) and relationship with child (β = .18, p = .041) making a 
statistically significant contribution while caregivers age (β = -.15, p = .071) and education (β = -.04, 
p = .625) were not a significant contributor. Model 2 which included other demographic variables of 
the children- sex and education and controlled for the effects of the caregivers demographic variables 
was equally significant, ΔR2 = .12, F (6, 148) = 6.03, p < .001 with only child’s education (β = -.36, 
p < .001) explaining statistically significant amount of variance in disclosure of status whereas child’s 
age not a significant contributor (β = -.04, p = .57). The last model which was of interest to the 
researcher’s was significant, ΔR2 = .17, F (7, 147) = 12.37,   p < .001. Child’s age after controlling 
for demographics of caregivers and child was a significant predictor of disclosure of status in children 
living with HIV and accounted for unique variance in disclosure (β = -.47, p < .001, Adj. R2 = .34). 
This means that holding other variables constant, the chance of disclosure increase 17 times by the 
age of the child and this explains 34% of the variance in disclosure. This goes to confirm the 
hypothesis that age predicts disclosure of status in children living with HIV.
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Table 4.9 Hierarchical regression of child’s age as a predictor of disclosure of status in children with hiv while 
 controlling demographic variables in caregivers and children. 
2 2
Model  B (SE B) β R  ΔR  F p 
1     .07  3.05 <.05 
 (Constant)                                     1.432 .268      
 Caregiver's Age -.007 .004 -.15     
Caregiver's Sex .209 .092 .19*     
Caregiver's Education -.021 .043 -.04     
Caregivers Relationship with the child .116 .056 .18*     
2     .20 .12 6.03 <.001 
 (Constant) 2.118 .296      
Caregiver's Age -.004 .004 -.10     
Caregiver's Sex .201 .087 .18     
Caregiver's Education .025 .042 .05     
Caregivers Relationship with the child .064 .055 .10     
Child's Sex -.042 .073 -.04     
Child's Education -.663 .141 -.36**     
3     .37 .17 12.37 <.001 
 (Constant) 2.757 .281      
Caregiver's Age -.005 .003 -.10     
Caregiver's Sex .082 .080 .07     
Caregiver's Education .029 .038 .06     
Caregivers Relationship with the child .061 .048 .09     
Child's Sex -.020 .065 -.02     
Child's Education -.356 .134 -.19     
Child's Age -.081 .013 -.46**     
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4.3.8 Summary of Quantitative Findings 
 
This study basically tested seven main hypotheses to examine the impact of disclosure of 
status to children living with HIV on health outcomes in these children (i.e. medication adherence 
and psychological wellbeing) and their caregivers (i.e. caregiver burden and psychological health). 
The findings of the present study are listed below: 
1. Disclosure of status in children living with HIV led to better health outcomes in the 
children as indexed by higher scores on medication adherence and psychological 
wellbeing in children whose HIV status have been disclosed that those whose status 
have not been disclosed. 
2. There was no statistically significant difference in caregiver burden among caregivers 
who disclosed and those who did not disclose as both indicated high levels of burden.  
3. Disclosure of status did not improve the psychological health of caregivers of children 
living with HIV because there was no statistically significant difference between those 
caregivers who disclosed the status of children living with HIV and those who have not 
disclosed on psychological health scores.  
4. The relationship between disclosure of status and psychological wellbeing in children 
living with HIV was mediated by the duration of disclosure (how long the children 
have been aware of their status). 
5. The relationship between disclosure of status and medication adherence in children 
living with HIV was not mediated by the duration of the disclosure.  
6. Age was a significant predictor of disclosure of status in children living with HIV. 
 
 
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3.4.9 Observed Model for Quantitative Findings 
 
 
DURATION OF 
 DISCLOSURE 
 
 
 
PSYCHOLOGICAL 
 DISCLOSURE OF 
WELLBEING IN 
 AGE STATUS IN 
 CHILDREN WITH CHILDREN WITH 
 HIV HIV 
 
 
 
 MEDICATION 
 ADHERENCE IN 
CHILDREN WITH 
 
HIV 
 
 
Figure 2 .   Figure depicting the observed relationships between study variables
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CHAPTER FIVE 
DISCUSSION 
5.1 Introduction  
 
Both the qualitative and quantitative findings of this study are discussed in this chapter 
with references to existing literature. In discussing the key findings, contextual explanations are 
provided for the different outcomes in the children and their caregivers. The implications of these 
findings are also discussed with recommendations for future research and clinical practice. The 
chapter ends with limitations, recommendations, and conclusion. 
5.2 Diagnosis of HIV in Children living with HIV 
 
In this study, it was found that for the majority of the children, the diagnosis of HIV 
occurred during infancy owing to frequent illnesses and hospitalizations. The caregivers noticed 
symptoms in their children as young as four and six months. This confirms studies (e.g. Burchett 
& Pizzo, 2003; Sütçü et al., 2017) which found that most children infected with HIV present in the 
first few months of life or the infantile period. Also, findings indicated that the diagnosis of the 
children led to further testing of caregivers, particularly those who were the biological parents of 
these children most of whom did not know that they were also infected until their children were 
diagnosed. These findings show that these children were infected perinatally or through mother to 
child infection as evidenced by other studies (Kassa, 2018; Lentoor, 2017; Wudineh & Damtew, 
2016). These studies found that a majority of the children living with HIV below the age of 15 
years are infected mainly through mother to child transmission during pregnancy, childbirth or 
breastfeeding. For example, Wudineh and Damtew (2016) in their study found that a third of 
children born to HIV infected mothers are infected with HIV through mother to child transmission. 
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One plausible reason why caregivers particularly the biological parents or mothers were not aware 
of their status could be the fact that they had side-stepped antenatal testing or failed to accept their 
diagnosis even when they were told, as observed in the narratives of some caregivers.  
According to the World Health Organization and Ministry of Health, Ghana, standard 
guidelines for the prevention of mother to child transmission (PMTCT) (Ministry of Health, 2014; 
WHO, 2016), HIV testing is part of the routine tests conducted as part of the initial and subsequent 
antenatal care services for all pregnant women who report to the hospitals across the country. 
Hence, the inability of caregivers to be aware of their status could be due to the fact that they 
skipped antenatal testing or failed to accept the diagnosis. The lack of acceptance on the part some 
of the caregivers may also be a result of the stigma and other negative connotations that surround 
HIVinfection in the African context particularly (Treves-Kagan et al., 2016). According to studies, 
stigma, and discrimination related with HIV is one of the major reasons why people avoid HIV 
testing or avoid seeking care (Treves-Kagan et al., 2016; Young & Bendavid, 2010; Young & Zhu, 
2012). For instance, in the study by Young and Bendavid (2010), stigmatization was found to be 
positively related to and affected HIV testing decisions and behaviour among people living with 
HIV. These studies provide support for the reasons why most caregivers (especially the biological 
parents) were unaware of their HIV status as at the time their children were diagnosed.  
5.3 Disclosure of Status to Children living with HIV 
 
Full disclosure of status to children living with HIV has been found to be a challenge for 
most caregivers in sub Saharan African countries and studies have indicated low prevalence rate 
of disclosure across countries in the sub-region (Baker et al., 2018; Finnegan et al., 2019; Gyamfi 
et al., 2017; Kallem et al., 2011; Turissini et al., 2013). In this study, the qualitative findings 
indicated that the rate or prevalence of disclosure was just one third among caregivers interviewed 
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whereas the quantitative indicated that less than one-third of the children had full disclosure. 
Although these rates are still low, they are slightly higher compared to those reported in Kenya 
(Turissini et al., 2013), the Dominican Republic (Beck-Sagué et al., 2015), Zimbabwe (Finnegan 
et al., 2019) and in Ghana by Gyamfi et al. (2017) in a previous study. A reason for this low rate 
of disclosure could be due to the fact that most of the children that took part in this study were 
younger as observed in the mean age of the children which was, less than ten years.  
The majority of caregivers who did not disclose the status of their children in the qualitative 
study indicated that the children were not old or matured enough to be told about their diagnosis, 
hence the reason for non-disclosure. When asked to suggest the right age at which to fully disclose, 
some stated early or late adolescence as the right age at which they can disclose since by then the 
children will be developed cognitively to understand what HIV is and its implications. This finding 
supports previous literature on disclosure e.g. Baker et al. (2018), DeSilva et al. (2018), and 
Gyamfi et al. (2017) which have reported that, older children, particularly adolescents are more 
likely to be disclosed to than younger ones or non-adolescents whom caregivers perceive as not 
matured enough cognitively to understand their condition.  
5.3 Factors Promoting Disclosure and Non-Disclosure in Children living with HIV 
 
The study revealed that age or maturity, fear of the child not keeping the diagnosis 
confidential, fear of societal rejection, stigma and ill-treatment as the main reasons for caregivers 
not disclosing the HIV status of their children to them. Caregivers who did not disclose were of 
the view that their children were not grown enough or matured enough to be told about their 
condition. This is particularly true for the younger children or non-adolescents. Closely tied to the 
age factor was the concern that children were not cognitively developed enough to grasp the 
explanations of HIV, what is it, how it is transmitted and its implications and impact on the family, 
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hence the need to refrain from disclosing till the children were older enough to understand before 
they are told. This supports previous studies (Beck-Sagué et al., 2015; Gyamfi et al., 2017;  
Vreeman et al., 2014). For instance, Beck-Sagué et al. (2015) found in the Dominican Republic 
that caregivers of younger children did not disclose because the caregivers felt they had not gotten 
to the stage where they could understand and cope effectively with their condition.  
This means that age is a factor that determines whether caregivers would disclose or not. 
The effect of age as a predictor of disclosure was tested in the quantitative study controlling for 
other demographic variables of both children and their caregivers and this was significant 
explaining seventeen percent of the total difference in disclosure rates. This indicates that older 
children were more likely to know about their sero status than younger children. Similar findings 
have been documented in previous studies (Kallem et al., 2011; Mumburi et al., 2014; Pinzón-
iregui et al., 2013; Vreeman et al.,2013). 
Also, the findings of this study indicated that caregivers feared their children will tell others 
about their diagnosis when they disclose their status to them. They were of the view that the 
children were young and naïve and could spill the bin unknowingly to other children through 
conversations without knowing the implications. Linked to the fear of others knowing about the 
condition of the family was also the fear of stigma, discrimination and ill-treatment by family, 
friends and the society at large when others get to know of their condition which these caregivers 
were not prepared for. Some expressed fears of rejection by family, eviction from their homes and 
also the fear of losing their jobs. These findings are consistent with prior studies from sub-Saharan 
Africa on stigma and disclosure (Beck-Sagué et al., 2015; Gyamfi et al., 2017; Madiba & 
Mokgatle, 2017; McHenry et al., 2017; Ostrom, Serovich, Lim, & Mason, 2006). For instance 
Gyamfi et al. (2017) found in a prior study in Ghana that, because of the belief that HIV is caused 
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by supernatural powers as punishment for wrongdoing, it leads to negative attributions and 
labeling, hence most caregivers decide not to disclose the status of their children in order to avoid 
such labeling and rejection from community members. It is obvious that the larger societal factor 
of stigma greatly affects the decision of whether to disclose or not to disclose the HIV status of 
children to them among caregivers hence supporting the social influence theory of disclosure.  
Again, these reasons explained above are costs or negative outcomes that caregivers believe 
outweighs the benefits that disclosure could bring hence the need to withhold disclosure and also 
reinforcing the consequences theory of disclosure.  
Disclosure on the hand was mainly necessitated by three main factors, namely, curiosity 
and questioning by children on the need for medications, poor adherence to antiretroviral treatment 
and transition to high school or boarding school. Findings from this study showed that most 
caregivers were compelled to disclose because their children were questioning why they are on 
medication and to address their concerns, the caregivers thought it prudent to disclose. As indicated 
in the qualitative findings, the concern about always taking medications was raised by the children 
because they felt they were not physically ill to be on medications every day. Also, some practices 
at the antiretroviral clinics raised eyebrows and made the children curious: this included keeping 
folders in a rubber files which was not the same for other patients. This means that actions intended 
to protect people with HIV from being recognized or identified at the various clinics could rather 
lead to curiosity and suspicion. These findings support prior studies on the reasons for disclosure 
(Beck-Sagué et al., 2015; Lorenz et al., 2016). A probable reason for this result is that, as children 
age and mature cognitively, they begin to question the status quo to understand the reasons behind 
certain actions and behaviours hence the curiosity and inquisitiveness.  
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  Also, this study revealed that some children became non-adherent and stopped medicating 
completely, which prompted caregivers to disclose. This was so because in most cases, caregivers 
did not explain to these children why they were on medication daily. Without this explanation, 
some of these children did not see the need to continue the medication and therefore stopped taking 
the medications altogether or were missing doses. These findings have been documented in 
previous studies (Baker et al., 2018; DeSilva et al., 2018; Gyamfi et al., 2017). For instance, in 
Peru, Baker et al. (2018) found that frustrations about non-adherence to medication compelled 
caregivers and health care providers’ to disclose the status of children living with HIV. 
 Again, others felt the need to disclose because their children were transitioning from basic 
to high school or boarding school, and as a means of ensuring that their children continue taking 
the medication even when in school, disclosure was made.  The motivation behind this was perhaps 
the fact that caregivers felt that the children may not adhere to medications in their absence and 
also because they may no longer be available to supervise the children to take their medications 
regularly and on time. Hence, the need for disclosure to make children understand why they are 
on medication. This finding is unique to this study and the Ghanaian context as this has not been 
documented in prior studies. 
From the findings discussed above, it can be observed that there is the interplay of both 
individual factors such as the child’s age or maturity, the need for adherence, transition into higher 
educational levels and societal factors such as stigma, fear of rejection and ill-treatment. These 
individual and societal factors singularly determined or combined to determine whether or not 
caregivers would disclose or not disclose the HIV status of their children. Depending on which 
was of significance to the caregiver at the point in time, determined whether disclosure was made 
to the child or not.  
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5.4 Disclosure and Health Outcomes in Children living with HIV 
 
Findings from both the qualitative and quantitative studies showed that disclosure of status 
led to better and improved health outcomes in children living with HIV. In the quantitative study, 
findings showed that children whose HIV status had been disclosed had satisfactory adherence and 
compared to children whose status have not been disclosed as children who knew their status had 
higher adherence compared to those who did not know their status. This finding supports prior 
studies that found that disclosure positively affected medication adherence in children living with 
HIV (Britto, Mehta, Thomas & Shet, 2016; Bulali et al., 2018; Pinzón-iregui et al., 2013; Ramos 
et al., 2018).  It, however, contradicts the study by Naidoo and McKerrow (2015) which found 
disclosure did not improve medication adherence as indexed by reduced viral load or increased 
CD4 cell count. A likely reason that may account for the different results is the method for 
measuring adherence in the children. While this study used a self-report measure for adherence, 
the study by Naidoo and McKerrow (2015) used clinical tests of viral load and CD4 count and a 
measure of adherence.  
From the qualitative study, caregivers explained that disclosure made children more 
responsible towards taking their medication than when they were not aware of their status. Another 
reason why adherence was better in children whose status have been disclosed was that disclosure 
enabled the children to understand the reason for being on medications and hence resulted in a 
greater willingness to adhere to medications. This has been documented in earlier studies (Gyamfi 
et al., 2015; Kunapareddy et al., 2014; Vreeman et al., 2010; Perez & Leroy, 2009). For instance, 
Perez and Leroy (2009) explained that disclosure resulted in an increased motivation in the 
children as they now understand the need for adherence. Disclosure again helped these children to 
accept their HIV status, and come to terms with the fact that one of the key issues to a healthy life 
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for them is to continuously take the antiretroviral medications. A possible reason that could further 
explain the improved adherence in children who knew their status was that disclosure gave them 
knowledge about the positive effect of antiretroviral therapy and resulted in a greater commitment 
to continue adherence. These reasons given above are rewards or positive benefits that caregivers 
believed would result from disclosure hence the supporting the consequence theory of disclosure. 
Children whose status had not been disclosed on the hand were reported to have problems with 
adherence as caregivers explained that they complained about the medications most of the time, 
were unwilling to take them and sometimes threw medications away.  
On the impact of disclosure of status on psychological wellbeing, the quantitative study 
found that disclosure did not affect the wellbeing of children who knew their HIV status negatively 
as most caregivers were worried about. The study found that children whose HIV status had been 
disclosed had better psychological wellbeing than those children whose status have not been 
disclosed. This supports findings from earlier studies (Adefalu et al., 2017; Pinzón-iregui et al., 
2013; Santamaria et al., 2011). Santamaria et al. (2011) for example, found disclosure did not 
affect the psychological functioning of children living with HIV as children who knew their HIV 
status reported less anxiety, depression and internalizing behaviour compared to children who did 
not know their HIV status.  
There are a number of explanations as to why this is so. First, it is possible that disclosure 
eliminated all anxieties, tensions, and suspicions that existed between children and their caregivers 
due to the absence of communication about the children’s condition. With the disclosure of status, 
these negative thoughts and emotions were eliminated hence there was improved psychological 
wellbeing. The qualitative results confirms this as caregivers reported that their anxieties were 
eliminated as a result of disclosure. Secondly, disclosure also enabled the children to come to terms 
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with their condition, to understand and accept comprehensive care and support from health 
professionals and caregivers in managing the condition leading to improved psychological 
wellbeing. This, therefore, provides evidence to debunk the notion that disclosure affects the 
mental or psychological wellbeing of children negatively.  
 
5.5 Duration Of Disclosure And Health Outcomes In Children With HIV 
 
A unique finding from this study was that the duration of disclosure (how long a child has 
been aware of his/her HIV status) mediated or explained the relationship between disclosure and 
psychological wellbeing. This addresses or explains the inconsistencies in the literature regarding 
disclosure and psychological wellbeing or health. The qualitative study revealed that, children who 
had been disclosed to experience some emotional reactions to the news of the infection as 
expressed in feelings of sadness, quietness, and withdrawal. These negative emotions were 
however alleviated as the children were able to adjust and bounce back in a few months and did 
not exhibit any of such emotions afterwards. It suggests that the longer children are aware of their 
HIV status, the more they are able to accept and adjust to it hence reducing significantly the 
negative emotions that come with disclosure. This was tested in a mediation analysis in the 
quantitative study and the result supported that of the qualitative study. Results indicated that the 
duration of disclosure significantly mediated the relationship between disclosure and 
psychological wellbeing.  
A plausible reason for this finding is that the children were able to develop effective coping 
mechanisms as time went on to help them deal with the negative emotions they experience as a 
result of the disclosure. Also, with time these children are able to harness the support of family 
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and health care professionals in dealing with the negative emotions that come with disclosure. For 
instance, in the qualitative study, caregivers indicated they provided the children with emotional 
support after disclosure and this helped the children with time to overcome the mood changes and 
other emotions that was present in the children after disclosure was made. 
Duration of disclosure, however, did not mediate the relationship between disclosure and 
medication adherence. This could be due to the fact that the children had already formed adherence 
habits from childhood and as such the duration of disclosure could not have influenced adherence 
in these children. Also, there may be other individual (misconceptions, forgetfulness, medication 
side effects), social (social support), and structural (poverty, limited supply of antiretroviral drugs, 
stigma, and discrimination) factors that could affect adherence in children with HIV. 
 
5.6 Disclosure and Health Outcomes in Caregivers 
 
Disclosure is believed to have a positive impact on the health of caregivers. In this study, 
the qualitative results showed that disclosure relieved caregivers of the anxieties they had about 
having to disclose.  However, they reported that the challenges they faced, particularly, financial 
difficulties due to unemployment and anxieties about lifelong medication in the children continued 
to persist. This means that the challenges or burdens faced by caregivers of children living with 
HIV are very daunting regardless of whether they have disclosed or not. 
The quantitative findings confirmed this as there was no statistically significant difference 
between caregivers who disclosed and those who did not disclose on the two health outcome 
measures- caregiver burden and psychological health. This means that disclosure did not 
significantly lesson burden in caregivers nor did it improve their health significantly. This is 
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contrary to a previous study by Gyamfi et al. (2015) where it was reported that caregivers believed 
that disclosure resulted in improved mental and psychological health.  
A possible explanation for this finding is the fact a majority of caregivers still entertain 
fears that the children will divulge the news of their status to others. Also, the fear of stigmatization 
coupled with the many financial and social challenges almost all caregivers encounter could 
probably explain why disclosure did not influence psychological health and burden in caregivers. 
This is because these challenges were some of the important concerns raised by caregivers in the 
qualitative study.  
5.7 Challenges and Support Systems of Caregivers of children living with HIV 
 
Findings from this study indicated that caregivers of children living with HIV face a lot of 
challenges in performing their caregiving role. Prominent among these are financial constraints, 
anxieties about lifelong medication in the children, psychological distress and the burden of care. 
Although antiretroviral treatment is free in Ghana, caregivers reported financial challenges related 
to inadequate resources to cater for accommodation or rent, educational needs of the children as 
well as providing means of transport to the hospital for regular reviews. This supports previous 
studies (Bejane et al., 2013; Mafune, Lebese & Nemathaga 2017; Osafo, et al., 2017;  Pacheco et 
al., 2016)  which also found that financial difficulties were the greatest challenges faced by 
caregivers of children living with HIV. For instance, Osafo et al. (2017) found in Uganda that 
caregivers had difficulties providing food for their children due to financial constraints. These 
financial challenges could be explained by the fact that most of the caregivers are unemployed or 
are unable to ply their various trades because of the burden of having to care for their children as 
was reported in the qualitative findings and hence the financial constraints.  
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Another challenge expressed by caregivers is the anxiety, worry, and concern about their 
children being on medication for a lifetime. Most caregivers communicated their worry about their 
children taking the antiretroviral medications for the rest of their lives which they felt was going 
to be difficult for them because they are young. This is consistent with the study by Iacob et al. 
(2017) where it was found that lifelong treatment causes feelings of restraint leading to non-
adherence.  This resulted in some caregivers expressing the wish for children to be taken off the 
medications because of some the reactions that the children have due to the medications.  
Again, caregivers in this study were burdened with care. As observed in the qualitative 
component, caregivers expressed concerns about the difficulty of having to combine work with 
caregiving roles. Some stated their inability to seek help (such as getting house helps) in caring for 
their children. Caregivers explained that they could not trust these helps not to spread the news of 
their diagnosis or that of their children. Therefore, they avoided this option and chose to care for 
the children alone. The burden of care in these caregivers was compounded by the fact that most 
of their partners were unavailable. Additionally, some caregivers had other family responsibilities 
such as caring for siblings and parents which also add up to their burden of care. These findings 
were confirmed in the quantitative component as both disclosed and non-disclosed caregivers 
scored very high on caregiver burden. These findings support earlier studies  (Hayfron-Benjamin 
et al., 2018; Lentoor, 2017; Osafo et al., 2017). For instance, Lentoor (2017) found in South Africa 
that frequent medical appointments, unexpected hospitalizations, in addition to the day-to-day 
caregiving needs of the children contributed a huge burden to caregivers. 
Lastly, this study found that caregivers reported some form of distress as a result of caring 
for the wellbeing of their children. This was characterized by feelings of sadness, frequent 
headaches due to thinking about the condition and sleepless nights. It is important to note that these 
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distresses were experienced by both disclosed and non-disclosed caregivers. This finding is 
consistent with prior studies (Asadullah et al., 2017; Lentoor, 2017; Osafo et al., 2017). An 
explanation for why caregivers experience these distresses could be due to the challenges described 
above namely financial constraints, fears about lifelong adherence as well as the burden of care. 
These all come together to contribute to the distress reported by the caregivers because these 
demands could put a strain on caregivers psychologically.  
Although caregivers face these numerous challenges, they received some form of support 
which aided them in dealing with the hurdles that caregiving comes with. Most caregivers reported 
religious coping, the belief and trust in a supreme being (God), in helping them through the many 
difficulties they face and view life with a positive attitude. Few of the caregivers who had their 
partners available also received a great deal of support and encouragement in dealing with the 
challenges they encounter daily. Lastly, caregivers also received financial support sometimes from 
some benevolent individuals within their various communities and this sometimes aided them to 
deal particularly with their financial challenges. These findings have also been reported in studies 
by Lentoor (2017) and  Osafo et al. (2017). For instance, Lentoor (2017) found in South Africa 
that caregivers drew strength from their faith and this was essential accepting and coping with the 
child’s diagnosis of HIV and well as the challenges that it comes with. Osafo et al. (2017) also 
reported spiritually focused coping among caregivers of children living with HIV in Uganda. 
In summary, this study has contributed significantly to our understanding of the influence 
of disclosure of HIV status on health outcomes in both children living with HIV and their 
caregivers. The study found that age was a significant predictor of disclosure. Poor adherence, 
curiosity, and transition to boarding school were the other reasons that encouraged disclosure in 
caregivers. On the other hand, fear of child not keeping diagnosis confidential, younger age,  and 
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fear of how children would react to disclosure discouraged the disclosure of status. Disclosure of 
status to children living with HIV improved medication adherence and psychological wellbeing in 
the children in children who knew their status compared to those who did not know. Disclosure, 
however, did not have any effect on caregiver outcomes (psychological health and caregiver 
burden). The duration of disclosure mediated the relationship between disclosure and 
psychological wellbeing of children with HIV but not disclosure and medication adherence. 
Caregivers reported challenges including financial and work challenges as well as unavailability 
of partners. However, support from faith  or religious, partners and benevolent individuals helped 
caregivers to cope with these challenges. 
5.8 Limitations of the Study  
 
Notwithstanding the contributions of this study on the impact of disclosure of status on 
health outcomes in children living with HIV and their caregivers, there were some limitations of 
the study. Hence, there is a need to interpret the results of this study carefully, taking into account 
the following limitations. First of all, the study used a cross-sectional design which allows only 
associations to be drawn between a predictor variable and the outcome variables. Therefore, 
causation cannot be inferred from the results of this cross-sectional study. A greater percentage of 
the finding from this study, however, is in alignment or support with previous literature and hence 
the observed relationships in this study should not be overlooked. Secondly, using non-probability 
sampling methods did not allow for participants to be selected at random. That is, participants were 
subjectively selected for the study and this is susceptible to biases as it hinders in a way, the ability 
to draw inferences or generalize about the population under study (Sharma, 2017; Showkat & 
Parveen, 2017). 
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In addition, participants recruited for the study were relatively homogenous. Careful 
scrutiny of the demographic characteristics shows that a majority of the caregivers were mothers, 
had basic education and were the biological parents of the children while a majority of the children 
recruited for the study were males and mostly in basic schools. This makes it difficult in 
generalizing the results to caregivers who are fathers and children who are females particularly 
those in secondary institutions. Also, it will be difficult generalizing findings to other parts of the 
country since the study was conducted only within the Greater Accra Region where for instance 
standard of living may be higher than other parts of Ghana. 
Lastly, the use of self-report measures in assessing both predictor and outcome variables 
is a shortcoming for the present study. Despite the fact that the measures were chosen for their 
sound psychometric properties, self-reports are characterized sometimes with some 
predispositions or biases such as social desirable responses, speculating or random responses, etc. 
(Demetriou, Uzun, & Essau, 2015; Lucas, 2018; Rosenman, Tennekoon, & Hill, 2011).  
5.9 Recommendations for Future Research 
 
Based on the limitations enumerated above, the following recommendations are suggested 
for future studies. First, it is recommended that future studies adopt a longitudinal study design to 
examine the impact of disclosure on health outcomes pre and post-disclosure.  It would allow the 
impact of disclosure on health outcomes to be studied over time and help understand the cause and 
effect relationship between disclosure of status and health outcomes in children with HIV.  
Second, future quantitative studies should make use of probability sampling as this allows 
random selection of participants and ensures that the sample is representative of the population. 
Also, random sampling ensures that the sample recruited is heterogeneous and would allow for 
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greater ability to generalize finding to other settings and the total population. It is also 
recommended that future studies should include multiple measures other than self-report measures 
to counter or check for some of the biases that self-report measures are prone to. For example, 
medication adherence could be measured using both self-report measures as well clinical tests such 
as CD4 tests and viral load test as well pill count or pharmacy count. 
Again, future studies should examine the impact of disclosure on other outcomes such as 
reproductive health behaviours including risky sexual behaviours. This is because there is a reason 
to believe that most children have early sexual debuts and engage in sexually risky behaviours at 
an early age. Finally, future qualitative studies should target the experiences of both children who 
know their status and those who do not as most qualitative studies that have been conducted in 
Ghana have focused mainly on the experiences of caregivers. 
5.10 Implications for Clinical Care and Practice 
 
The findings of the study have some implication for practice and clinical care. To begin, 
there is the need for the Ministry of Health and the Ghana Health Service to formulate and 
implement policies to improve the kind of care that is provided for children living with HIV as 
well as their caregivers particularly with regards to psychological care.  
Health care professionals should encourage the disclosure of status among caregivers of 
children living with HIV as the present study has indicated that disclosure has a significant positive 
impact on medication adherence and psychological health. This is because it makes children 
understand the need for medication and are motivated to take more responsibility for their own 
health. Also, there is the need for a national disclosure framework to be developed by the Ministry 
of Health in conjunction with the Ghana Health Service and other stakeholders as recommended 
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by the World Health Organization since Ghana is yet to have a national disclosure framework. 
This will provide health care professionals and caregivers with guidelines on how and when to 
disclose the HIV status of children to them. It will also be very valuable as the role that each 
stakeholder (health care professionals, caregivers, etc) plays in the disclosure process will be 
clearly delineated. 
In developing this disclosure framework, there is also the need to take into account some 
contextual factors that prohibit and enhance disclosure as established by research. For instance, 
age should be one of the factors to be considered in developing a national disclosure framework. 
Also, the role psychologists and counselors are strengthened in developing the disclosure 
framework because the study revealed that their role is needed role in dealing with some of the 
psychological aftermaths of disclosure.  
Also, there is a need for organizations like the Ghana AIDS Commission and the National 
AIDS Control Programme to formulate policies to reduce stigma against children with HIV as well 
as their families. This is because the impact of stigma permeates all facets of life of people living 
with HIV and their families such as disclosure, medication adherence as well as psychological 
wellbeing and burden of care. Lastly, care for children living with HIV should include 
psychological care not only for the children but also for the caregivers since they carry a greater 
percentage of the burden particular with regards to the care and wellbeing of these infected 
children.  
5.11 Conclusion 
 
This study revealed disclosure rates are still low with caregivers citing the child’s age, 
immaturity, fear of others knowing about the condition and stigma as some the barriers to 
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disclosure while non-adherence, curiosity, and transition into high school were the factors that 
facilitated disclosure. Finding also showed that disclosure improved medication adherence and 
psychological wellbeing of children living with HIV. However, disclosure did not have any 
significant impact on the health outcomes of the caregivers.  Disclosure should be encouraged in 
children living with HIV since it did not have any negative psychological consequences in 
children. Additionally, there is a need to incorporate psychological care for both children living 
with HIV and their caregivers since caregivers presented with a lot of burdens and psychological 
distresses.  
 
 
 
 
 
 
 
 
 
 
 
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                                                          APPENDICES 
 
Appendix A- Ethical Clearance from Ethics Committee for the Humanities (ECH) 
 
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Appendix B - Introductory Letter from the Department of Psychology 
 
 
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Appendix C- Ethical Clearance from the Korle Bu Teaching Hospital 
 
 
 
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Appendix D - Ethical Clearance from the Ghana Health Service- Greater Accra Regional    
Directorate 
 
 
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Appendix E- Questionnaires 
 
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Appendix F – Semi-Structured Interview Guide 
 
 
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