Archives of Psychiatric Nursing 32 (2018) 815–822
Contents lists available at ScienceDirect
Archives of Psychiatric Nursing
journal homepage: www.elsevier.com/locate/apnu
The experiences of providing caregiving for patients with schizophrenia in T
the Ghanaian context
Odue Gloriaa, Joseph Osafoa,b,⁎, Emily Goldmannc, Nina S. Parikhd, Justice Nonvignone,
Irene M.A. Kretchyf
a Department of Psychology, School of Social Science, University of Ghana, Ghana
b Centre for Suicide and Violence Research, Ghana
cDepartment of Epidemiology, College of Global Public Health, New York University, United States
d College of Global Public Health, New York University, United States
e Department of Health Policy, Planning & Management, School of Public Health, College of Health Sciences, University of Ghana, Ghana
fDepartment of Pharmacy Practice and Clinical Pharmacy, School of Pharmacy, University of Ghana, Legon, Ghana
INTRODUCTION mental health which is an unbalanced staffing situation with an un-
balanced emphasis on nurses compared to what would be expected
Schizophrenia is a severe mental illness that is often characterized (Roberts, Mogan, & Asare, 2014). There were 123 mental health out-
by significant distortions in thinking and perception, accompanied by patient facilities, 3 psychiatric hospitals, 7 community based psychia-
the exhibition of inappropriate emotions (Zhai, Guo, Chen, Zhao, & Su, tric inpatient units, 4 community residential facilities and 1 day treat-
2013). It alters one's perception of reality, often manifesting in the af- ment centre, which are well below what would be expected for Ghana's
fected individual to think and act in ways that are strange or abnormal. economic status. The majority of patients were treated in outpatient
It is estimated that schizophrenia affects approximately 1% of the facilities and psychiatric hospitals and most of the inpatient beds were
global population (Fatemi, 2010). According to the World Health Or- provided by the latter. Mental health services are significantly under-
ganization (WHO), around 450 million people are suffering from a funded with only 1.4% of the health budget allocated to mental health,
mental or behavioral disorder worldwide (WHO, 2003). Schizophrenia and expenditure very much skewed towards urban areas (Roberts,
usually starts in late adolescence or early adulthood and follows a Mogan, & Asare, 2014). There are no recent epidemiological data on
variable course, with complete symptomatic and social recovery in only schizophrenia in Ghana. From the 1960's and 1980's, researchers re-
one third of cases (Tandon, Keshavan, & Nasrallah, 2008). The impact ported few cases of schizophrenia among various groups in Ghana.
of schizophrenia has multiple contexts. Awad and Voruganti (2012) Field (1960) in her work in among the Akans in Southern Ghana studied
classified the effect of schizophrenia at three levels: 1) the patient un- 52 cases of Chronic Schizophrenic cases. Fortes and Mayer (1966)
dergoing personal suffering, 2) the caregiver and/or families experi- studied 17 cases of psychosis among the Tallensi in Northern Ghana. In
encing the burden of care along with the added responsibility of tran- 1984, Sikanartey and Eaton (1984) reported on 28 cases of diagnosed
sitioning the relative from inpatient to outpatient treatment, and 3) schizophrenia among the Gas, of Labadi, a suburb of Accra (the capital
society due to the strain on the health care delivery system (e.g., fre- of Ghana). In a cross-cultural comparisons of the symptoms of schizo-
quent hospitalizations), as well as long-term financial and psychosocial phrenia in 7 countries, the researchers used DSM-V to conduct a
support. Globally, there has been a shift from institutionalized car- structured clinical interview among 76 patients in Ghana, but the lo-
egiving of patients with schizophrenia to informal caregiving primarily cation on where the patients were drawn from was not reported (Bauer
by family (Chan, 2011). Some of the positive outcomes of such a shift, et al., 2011). In another recent randomised controlled trial studies,
as argued by Björkman and Hansson (2002), are reduced stigmatization schizophrenia was predominantly diagnosed (52% of cases) among the
and improved quality of life for individuals with schizophrenia. primary target conditions (such as bipolar disorder or major depressive
It is estimated that 2.4 million people with mental health problems disorder) in prayer camp in the eastern region of Ghana (Ofori-Atta
of which 67,780 (2.8%) received treatment in 2011. This however does et al., 2018). These isolated studies do not show any clear prevalence
not match the manpower crisis in the number of health workers in the rate of schizophrenia in Ghana. However, they do show that the con-
country. Reports indicate that as at 2011, there were 18 psychiatrists, dition has long been a commonplace in the country.
1068 Registered Mental Health Nurses, 19 psychologists, 72 Ghana has passed a Mental Health Act (Act 846) in 2012. A key
Community Mental Health Officers and 21 social workers working in provision in the act is to de-institutionalize mental health care in the
⁎ Corresponding author at: Department of Psychology, School of Social Science, University of Ghana, Ghana.
E-mail addresses: josafo@ug.edu.gh (J. Osafo), esg236@nyu.edu (E. Goldmann), nsp1@nyu.edu (N.S. Parikh), jnonvignon@ug.edu.gh (J. Nonvignon),
ikretchy@ug.edu.gh (I.M.A. Kretchy).
https://doi.org/10.1016/j.apnu.2018.06.005
Received 10 November 2017; Received in revised form 23 May 2018; Accepted 2 June 2018
0883-9417/ © 2018 Elsevier Inc. All rights reserved.
O. Gloria et al. Archives of Psychiatric Nursing 32 (2018) 815–822
country, providing community-based care for people with mental dis- analyzing, and interpreting data (Boodhoo & Purmessur, 2009;
orders and reduce crowding at the three mental hospitals. Pietkiewicz, Pietkiewicz, & Smith, 2012).
Unfortunately, the Act continues to be in limbo as the legal frameworks
which should govern its implementation are still not passed. In the STUDY LOCATIONS
absence of the implementation, families of the mentally ill continue to
provide caregiving in Ghana (Doku, Wusu-Takyi, & Awakame, 2012). Ghana has three public psychiatric hospitals (all located in the
The central role of the family in the provision of care provides them southern part of the country) that provide services for its estimated
much autonomy in decision making regarding health seeking for their population of 25 million (Accra, Pantang and Ankaful Psychiatric
suffering relatives. Faith healing, herbalists and traditional healers are Hospitals). Though some public hospitals see patients with mental ill-
constantly consulted for a cure (Ae-Ngibise et al., 2010). There are ness on an outpatient basis, most of those with severe mental conditions
about 45,000 traditional healers registered in Ghana, with many such as schizophrenia who report to public hospitals are referred to one
churches providing some forms of syncretic spiritual healing to about of these three psychiatric hospitals. According to the World Health
70–80% of people using them as frontline service personnel (Ministry of Organization Assessment Instrument for Mental Health Systems (WHO-
Health, 2005). A recent report on Ghana's mental health system in- AIMS), these hospitals provide care for about 85% of all mental health
dicates that a significant proportion of faith healers and traditional cases in the country (Roberts, Mogan, & Asare, 2014).
practitioners offer treatments such as medications, use mechanical
shackles to restrain about 41–57% of patients but also refer mental INFORMANTS AND SAMPLING PROCEDURE
illness cases to psychiatric services for attention (Roberts, Asare,
Mogan, Adjase, & Osei, 2013). Using a purposive sampling frame, family caregivers who visited
Most patients with schizophrenia may end up in prayer camps in any of the three institutions during the study period were identified by
Ghana (Ofori-Atta et al., 2018) where family folks and staff of such the nurses on duty and approached for the study. After the study was
sanatorium provide care. Generally, schizophrenia and other mental introduced to participants and informed consent provided, face-to- face
illness in Ghana are viewed by many persons as manifestation of dia- interviews were carried out using the semi-structured interview guide.
bolical manipulation. Family folks of such patients around the world Data collection was conducted within a four-week period. Sixty (60)
have to struggle with various significant psychological burden of car- primary family caregivers were sampled from the Accra Psychiatric
egiving (Bevans & Sternberg, 2012; Robison, Fortinsky, Kleppinger, Hospital, the Pantang Hospital and the Ankaful Hospital with 20 par-
Shugrue, & Porter, 2009). In the developing world where family ties ticipants from each unit. Ages of the caregivers ranged from 25 years to
provide strong social support for people, most schizophrenic patients 81 years. Twenty-nine (29) of them were males and thirty-one (31)
are supported by close relatives. For example, the WHO estimates that females. Fifty-four (54) caregivers were Christians and six (6) Muslims.
up to 90% of schizophrenic patients live with their families (WHO, The interview lasted between 45 and 60min and all were audio re-
2008). There is, however, a paucity of research examining the experi- corded. The majority of the caregivers were interviewed in a local
ences of unpaid (i.e., family) caregivers who provide care for relatives language (Twi, the widely spoken Ghanaian language), by the first
that have been diagnosed with schizophrenia in Ghana. There is thus author. The responses were translated into English by a transcriber who
the need to explore and better understand the experiences of informal is a professional translator.
caregiving (e.g., family) for people living with schizophrenia in Ghana.
To this end, we conducted a qualitative study of caregivers for patients ETHICS
with schizophrenia in three public psychiatric hospitals in Ghana to
examine the experiences and coping strategies of caregivers in this Ethical clearance was received from Ethics Committee for
context. Humanities (ECH) at the University of Ghana and Ethical Review
Committee of the Ghana Health Service with protocol identification
METHODOLOGY numbers ECH 041/15-16 and GHS-ERC: 22/11/15 respectively.
Participants were fully informed about the study and assured of con-
RESEARCH APPROACH fidentiality. Their consent was sought before conducting any interview
or administering the questionnaires. In this age of technology and social
To gain a deeper and more complete understanding of the psycho- media outlets, participants were assured that their voice will not be
logical burden experienced by informal caregivers providing care for heard on radio or any social media platform.
schizophrenic patients, use of qualitative methods are informative and
useful. It is an approach that is often used to explore a phenomenon that ANALYSIS
has not been previously well described (Risjord, Moloney, & Dunbar,
2001). To the best of our knowledge, this is the first attempt to conduct Interpretative Phenomenological Analysis (IPA), a commonly-used
an in-depth examination of the experiences of informal caregivers of qualitative approach, was used to analyze study data. The main tenant
schizophrenic patients in Ghana. of IPA is to elicit rich, detailed, and first-person accounts of experiences
and phenomena under investigation and examine how participants
INTERVIEW GUIDE make meaning of the of these personal experiences (Smith, Flowers, &
Larkin, 2009). Use of semi-structured, in-depth, interviews provide
A semi-structured interview guide was developed and piloted for its flexibility for an IPA analysis (Pietkiewicz, Pietkiewicz, & Smith, 2012).
appropriateness and clarity. The interview questions covered themes Although this study has relatively large sample compared to typical IPA
such as personal risk, family support, disruptions in personal/family studies, the steps described by Smith, Flowers, and Larkin (2009) in
life, role as caregiver, barriers/challenges of caregiving, overall phy- analyzing large data using IPA were maintained. Data analysis started
sical health status, health condition, relationship with family and first by reading each transcript to gain an overall understanding of the
friends, emotional distress and coping strategy of caregivers. Two key data. Researchers took detailed notes of specific phrases and words
questions on the interview guide that were analysed in the present related to the objective of the study. Since a majority of the transcripts
study are ‘Tell me about your experiences in caring for your relative with were transcribed from the local language of Twi into English, the au-
this mental difficulty’ and ‘How do you handle or cope with the challenges of thors (who are all fluent in Twi and English) discussed thoroughly all
caregiving?’ The use of a semi-structured interview guide gives quali- statements which seemed incongruent with the transcriber's rendition
tative research a descriptive capability and flexibility in collecting, and agreed before further analyses were done. The second step of the
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O. Gloria et al. Archives of Psychiatric Nursing 32 (2018) 815–822
analysis was to identify group level themes and illustrate them with familial connections for schizophrenia in the family, he has implicated a
typical narratives from individual participants. Such narratives were diabolical spiritual manipulation. From the view of others, spiritual
linked with other recurrent themes, if appropriate. The third step in- gurus have diagnosed the aetiology as spiritual.
volved verifying, summarizing and drawing analytical connections
across all the themes (Smith, Flowers, & Larkin, 2009). A lady pastor told me that my son's brain has been removed and kept atour village. He gave me directions to go to my hometown and pray. So I
went to our village to pray. I saw in a dream what she asked me to go and
VALIDITY ISSUES do… I had another dream and saw that my son was not well in the dream
and it confirmed to me that what is happening to him is spiritual.
The accuracy of the analysis and interpretations of the present study (F, 50, mother to patient)
was ensured through the following steps. First, the first author always
summarized the views of participants during the interviews to de- This informant perceives that the spiritual explanatory model of the
termine whether what had been reported was congruent with the re- illness as explained by a pastor was confirmed through self-experienced
corded information. Second, through a peer-review process and group visions and dreams. Since such a model fits her explanatory model, she
interpretation, the paper was drafted by the lead author and an op- holds firm to this belief. Others added that the aetiology could be a
portunity was given to the rest of the group to discuss the results. response to meddling in black magic as explained by this 70-year-old
Themes were discussed and agreed upon before analysis continued. caregiver:
Such group interpretation increases the credibility and validity of I think it is spiritual.When he went to Nigeria he was involved in spiritual
qualitative findings (Steinke, 2004). matters. He brought a lot of magical books. I think that is where the
problem started from, he was acting abnormally. Sometimes he will burn
FINDINGS his belongings and he will be talking about spiritual things and sometimes
he will like to go naked.
The age range of caregivers was from 25 to 81 years with a mean (M, 70, brother to patient)
age of 46. Nearly half of the participants (29) were male. Majority of
caregivers (54) were Christian, and there were six Muslim participants.
Two main themes (with sub-themes) resulted from the analysis: 1) PSYCHOSOCIAL FACTORS
Illness perception, (sub-themes: Spiritual attribution, psychosocial crisis A substantial number of respondents implicated psychosocial factors
and schizo-illiterate), 2) and Caregiving burdens (sub-themes include such as substance abuse (n=17), rumination (n=8) and postpartum
Supervision related burdens and Treatment related demands). experiences (n=5) in the aetiology of the condition of their relatives.
Below is a table that briefly describes the themes and their corre- Some caregivers attributed the illness to substance abuse as illustrated
sponding sub-themes (Table 1): by this 69-year-old trader's view: “It's the alcohol that is causing his
condition.Well some people said it is spiritual but even after I took him to the
church and he is still used alcohol, to me I think it is his own will”. (F, 69,
ILLNESS PERCEPTIONS trader, mother to patient).
This caregiver confidently believes her son is responsible for his own
This theme addresses the attributions caregivers have about the predicaments. She discounted suggestions made by people that her son's
aetiology of the condition (schizophrenia) their relative suffers with illness may be spiritual due to lack of improvement following spiritual
daily. The cause ascribed to the illness generally included spiritual at- therapy and continued alcohol use. Rumination (or excessive thinking)
tribution, Psychosocial factors (e.g., drug abuse, excessive thinking (ru- was also identified as a cause of the schizophrenic condition. Eight (8)
mination), and postpartum experiences) and ‘Schizo-illiterate’ (i.e., they caregivers attributed the illness to ruminating and worrying as illu-
had no idea about the cause of illness) themes. Study findings are or- strated by this mother: “She toils a lot in life and that makes her to think a
ganized around these three sub-themes. lot, so it is thinking that made her go through this condition” (F, 60, mother
to the patient). This view was corroborated by a man who was a hus-
SPIRITUAL ATTRIBUTION band to another patient and explains how certain problematic emo-
Majority of respondents (n=36) attributed schizophrenia to spiri- tional attributes and excessive thinking coalesce to lead to the present
tual forces. To some, it was new to the family and thus, they perceived condition of her wife:
the illness as spiritually determined as illustrated below:
Since I have been with her she is quick and hot tampered, she cries a lot
We don't have a family history of it. There is a reason behind everything and keeps things within her. She really thinks and worries a lot. And to
that happens and when you critically look at it, it could be spiritual to my knowledge these things really put strain on her mind'
some extent. This is because we don't have a family history of it, so it (M, 39, husband to the patient)
could be spiritual.
(M, 37, brother to patient) Five (5) husband caregivers said their wives developed the disorder
following the birth of a child as illustrated in this quote: “One thing I
Based on the above quote, since the participant cannot trace any know is that it happened after she had given birth to our last child. She
handled the child anyhow and started acting in ways that were abnormal”
Table 1 (M 54, husband to patient). This caregiver cannot identify a particular
Relevant demographics of participants. risk factor, yet the patient reported a warning sign: the mishandling of
Variables Frequency (F) Percentage (%) the baby. As this was observed only after the birth of their ‘last’ child,
the caregiver had a basis for comparison of the patient's treatment of
Sex their previous children. This story is no different from that of a 53-year-
Male 29 51.6
Female 31 54.8 old farmer who had been caring for his wife for 24 years now:
Religion When I got married to her, everything was fine but after giving birth to
Christian 54 90.0
Muslim 6 40.0 her second child, she ran away and we had to look for her. She then
Employment status started behaving strangely, talking to herself and causing problems”
Employed 43 71.6 (M, 53, husband to patient)
Unemployed 17 28.3
In both scenarios above, the caregivers make a direct link between
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O. Gloria et al. Archives of Psychiatric Nursing 32 (2018) 815–822
the birthing of a child and the subsequent change in behaviour of their year-old farmer who had been caring for his son for about five (5) years
wives. described these dynamics in the following quote:
‘SCHIZO-ILLITERATE’ ‘In the beginning, truthfully, when the sickness started, it was right here in
Four (4) caregivers could not provide any explanation with regard Accra that he was learning a trade and he was destroying people's
to what was happening to their relatives as illustrated in this quote: As property and there were some of the properties he destroyed that I had to
for this one, I don't know ooo… hmmm. It just happened and up 'til now I do pay for. He went to… erhh …destroy an Ewe's fetish priest's properties
not even understand. (F, 43 wife to the patient). Another caregiver re- and the fetish priest ordered me to buy some items for pacification, even
ports that he cannot implicate substance use, medical causes, or, though I am a Christian. When it happens that way, I make losses! Some
spiritual and interpersonal problem as potential cause of the condition, people were benevolent on me and allowed me to go scot free, but others
as illustrated below: will let me pay for the damages. I have suffered very much’(M, 63, father to patient)
Well he hasn't taken any substance before. If it is spiritual, we have
prayed about it for a long time and if it is medical, too we have sought A similar narrative was given by a taxicab driver who had been
medical care. I am a pastor too so I have prayed about it, but God hasn't providing care for his relative for six (6) years: He will go and destroy
told me that it is spiritual. He has not offended anyone too and he is not people's property and it is our responsibility to pay for the damage. It is a
stubborn. He completed senior high school and he was trying to apply for serious situation and drains us a lot. (M,46, brother-in-law to the patient).
a teaching position for the interim then later he could continue his edu- The transfer of responsibility from the patient (who destroys other
cation, and this sickness started. So I cannot really say what is causing it people's properties) to the family (and not government/social welfare
(M, 42, brother to patient) systems) may reflects a certain cultural understanding of the family'sprimary role of taking care of their ill member.
CAREGIVING BURDENS Other participants also indicated that the critical need of keeping aneye on the patient distracts them from other important ventures for
This theme addresses the burdens caregivers experience in their livelihood. For instance as expressed by this 40-year-old farmer who
caring roles for their relatives. Analysis showed two major burdens- has been caring for his mother for two (2) years, he is no longer able
supervision related burdens, and treatment related burdens. to concentrate on his farming activities because of the illness. Sinceher condition started, any time I go to the farm, I mostly feel un-
SUPERVISION RELATED BURDENS comfortable and therefore return quickly because I don't want her to go
This sub-theme addresses the need to be on guard due to the in- and do anything nasty or something like that. When I go, I run quickly
clinations of patients to damage property and be violent towards others. and come back’
The following voice is illustrative of this: (M, 40, farmer, son to the patient)
If he does not issue any threat, then it's not worrying. But now he is The thought of his mother being home alone puts the farmer in an
issuing threats, so we are scared. He is threatening of burning properties, uncomfortable position. The caregiver does not spend the maximum
that's why I have brought him here to Ankaful. When you are with him, time he needs on to the farm because of his mother's behaviour. It is this
you don't even know what to do because you cannot leave him at home feeling of anxiety that makes him rush from the farm to the house to
and you cannot go with him too. ensure that everything is under control.
(M, 42, brother to patient) A middle aged father also narrates how the condition distracts hisattention from his farming activities. He has to leave the farm to attend
From the narrative above, the caregiver's main concern is the pa- to her:
tient's vocalized intent to cause damage to property. As a result of these
threats, the caregiver's mobility has been considerably limited, as he is Because of the situation of the child you can't even concentrate when you
uncomfortable leaving the patient unsupervised. are on the farm, you would be called several times about things hap-
Some patients may not vocalized their intention to destroy property, pening to her there so I have to leave all I am doing and come to her so
but their uncontrollable violent behaviours keep caregivers constantly because of that I can't do any meaningful thing at work
vigilant. A father finds this stressful: (M, 40, Father to the patient)
There was a stage when we came here he was wild and during odd hours The patient's condition requires a full-time provision of attention
he went out which wasn't normal for him. So it wasn't easy because you which places extra demands on any the time needed for other en-
should always be vigilant on him since he may damage something… gagements, in this case economic activity. As indicated, all other ac-
(M, 63, Father to Patient) tivities are secondary to the burden of providing attention to the pa-tient.
Related to the above is the cost of damaged properties that is Additionally, almost all the caregivers reported sleepless nights. The
slammed on the caregiver. Some caregivers reported being apprehen- potentially violent behaviour of some of the patients required that
sive almost all the time; perhaps an indication of hyper-vigilance due to caregivers remain awake most of the time to ensure that the patient is
the patients' unpredictable destructive behaviour with its corollary asleep and is not doing anything that might cause harm to themselves
economic implication: or other members of the household. This is what a 53-year-old caregiver
My sister, hmmm, it is one trouble after the other. Today, he will go and expressed:
cause this trouble, tomorrow, another one. I sometimes feel uneasy not Yesterday, for instance, I slept around 2–3 am. She was making so much
knowing what to expect next. It is like I am always anxious! Always… noise at home. You have to keep an eye on her and make sure she is calm
because you will be there, and he will be reported to have destroyed before I am able to sleep’
someone's property which I will have to pay for (M 54, husband to patient)
(F 35, sister to the patient)
In certain situations, the burden of payment of destroyed properties TREATMENT RELATED BURDEN
extended to the procurement of certain rituals for pacifications. Other Some caregivers described the burden of caregiving which are re-
times some community members were sympathetic with the caregiver lated to treatment of the patient. Such treatment related burdens
and so did not demand payment for the destroyed properties. A 63- ranged from ‘healer shopping’, monetary cost of care, ensuring
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O. Gloria et al. Archives of Psychiatric Nursing 32 (2018) 815–822
medication adherence, and difficulty accessing psychiatric centres. from afar for medications and they are told they can't get the
Some caregivers had ‘healer shopped’- this refers to families em- medicine from here, so they have to go outside and go look for some.
barking on a number of journeys in search for a cure for their relative's If they don't get the medicine too, the patient will not be well. That
condition. The treatment trajectory usually began from seeking tradi- is our main worry as at now
tional healers guided by others, to other areas and then finally to an (M, 40, son to patient)
orthodox health centre as illustrated below: Here, the caregiver alludes to two structural stressors. Caregivers
When the sickness first started, some people directed me, and I took him and patients from rural and remote areas traverse long distances to
to a place in Kwanyako (a town in Ghana). There was a fetish priest receive needed treatment. This challenge is aggravated by the fact that
there. It was even my brother –in-law that gave me the directions to the the health care facilities tend to be under stocked with the required
place (the very place where his brother-in-law has sought a cure for medication, creating further stress of having to search for medications
an illness). But with time I could see that there was no way he was going from private sources.
to get healed. So, another person told me to take him to some pastor at
Swedru (another town in Ghana). That place too, what I went through
was stressful. Consultation fee was high, so I realized that I could not pay DISCUSSION
and therefore moved him from there and brought him back home! Then I
took him to Pantang (a psychiatric hospital in Accra, the capital) The purpose of this study was to explore the experiences of family
again. And since then it is here I have been coming to and the medica- caregivers of people living with schizophrenia and how they cope in
tions are effective. Herh! I am tired very, very much’ Ghana. The analysis focused on two main areas under two themes:
(M, 63, father to patient) perceptions about schizophrenia and caregiving burdens.Illness perception is an important dimension of attitudes and health
The treatment trajectory was full of experimentations undergirded seeking behaviour globally, but specifically important in African set-
by testimonies of previous efficacious treatment of close relatives. tings where health is perceived to be multi-determined (van den Bosch-
Traditional treatment regimens appeared to be trusted more than or- Heij, 2012). Consistent with other studies, majority (36 out of 60) of the
thodox therapies and yet eventually, the family returned to the or- caregivers in this study perceived schizophrenia as spiritually de-
thodox centre for medical treatment which he attests as efficacious. termined and accordingly, sought spiritual care. Religion and spiri-
Such a circuitous search for help could add additional strains to the tuality is a major cultural dimension of the worldview of Ghanaians
caregivers' burden as indicated in the quote. Caregivers sometimes must (Gyekye, 2010). Its impact can be observed in values, beliefs, health
take days off from work to bring the ill relative to the hospital for seeking behaviours, treatment regimen, coping and several other areas
routine check-ups and other emergencies: of life (Osafo, Agyapong, & Asamoah, 2015; Salifu Yendork &
At the moment I have to be at work, but I can't 'til he has been taken care Somhlaba, 2016). The spiritual determinism of mental illness in Ghana
of by the doctor. I sometimes loose client since some of them want me to has a corresponding conceptualization about spiritual treatments for
work on their hair and not my apprentices such illnesses (Salifu Yendork, Kpobi, & Sarfo, 2016). Usually, spiritual
(F, 43, niece to patient) determinism and the corollary of seeking spiritual treatment is reportedto account for the poor adherence to psychotropic medication man-
From this quote, the caregiver left her duties to be in the hospital agement (Mensah & Yeboah, 2003). The primary treatment of schizo-
with the ill relative, thereby losing her customers. phrenia, is antipsychotic medications (Miyamoto, Duncan, Marx &
Another aspect of the treatment related burdens included the Lieberman, 2005), but about 25% of people with schizophrenia are
monetary cost of patient care. Most of the patients are unable to resistant to this type of treatment. In essence, although medications are
maintain their jobs, and as a result, the caregivers have the stress of able to deal with the symptoms of the illness in most cases, they are not
competing responsibilities of self-care and the patient's care as de- effective in all cases. There is evidence in Ghana indicating that per-
scribed below: ceived inefficacy of psychotropic medication management of mental
The only worry is that he is no more working, so we have to work and illnesses also reinforces the spiritual determinism and management of
take care of him. If there is anything to be paid, we have to do that, my the illness (Read & Doku, 2012). In other studies however, the over 98%
auntie and I. So it has brought some financial problem to us all of patients who poorly adhered to their medication was as a result of
(F, 43, niece to patient) economic challenges, forgetfulness, and the feeling of wellness and notspiritual beliefs (Ashong, Kretchy, Afrane, & deGraft Aikins, 2018).
In the above narration, the cost can be seen to be collateral, as it Thus, the belief and use of spiritual care in the treatment and
exacts further demands on another family member. management of mental illnesses in Ghana continue to exist side-by-side
A further treatment related demand is the stress related to ensuring that of orthodox approaches. As mental health management expands,
patient's medication compliance. A caregiver expresses the following. people are searching for other innovative ways of infusing orthodox
If I don't do well to put his medicines in his food for him to eat, he won't practices with cultural forms of treatment. For example, some churches
take it. So, I decided to look for ways to get him better. For his drug, I in the United Kingdom currently retain the services of faith healers
usually dissolve it in water and mix it with the tea for him. Sometimes I (Friedli, 2000), with the task of expelling the demons in cases of real
fry it with the egg for him’ otherwise you have to worry and virtually possession. There is also evidence of recommendation from Turkey of
struggle with him to let him take it the potential to engage the services of religious leaders in the man-
(F, 62, mother to patient) agement of schizophrenia (Irmak, 2014). Such recommendations mightcome with suspicions of abuse, but the limitation of psychotropic
As explained, the caregiver administers the medication through the medication, the abundance of religious/spiritualized services and
patient's meals. This might be the most innovative way to manage the manpower crisis in the mental health landscape in Ghana, might pro-
struggle she has had to endure in managing the patient's adherence vide strong basis to consider alternative treatment. However, the cau-
behaviour. tion of the double-edged role of spirituality or religion in the man-
Travelling a distance for medication and the related difficulties of agement of schizophrenia has been proffered (Gearing et al., 2011).
searching for out-of-stock medication was also reported as a treatment A related implication following the spiritualized perception of
related demand: schizophrenia and its management in this study was healer shopping.
My main worry is that I come from the village just as others come ‘Healer shopping’ is a term that was derived from the concept of ‘doctorshopping’, where the use of a second healer without referral from the
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first for a single episode of illness is sought (de-Graft Aikins, 2005). In 2016). Sleeplessness was also reported among the caregivers. We could
their quest to get their relatives cured, caregivers often ‘healer shopped’ view this as supervision related burden; that caregivers lack sleep be-
in the hope of helping the patients regain their sanity. The practice of cause they have to considerably keep awake in the night to be sure their
healer shopping, according to de-Graft Aikins (2005), is driven by wards don't pose any danger before they sleep. This robs them of the
widespread spiritual causal theories of chronic illness, the need for require time to take care of their own daily needs (Kheng, 2005). This
cures, and the endorsement of ethno-medical professionals — in par- finding is also consistent with a study in France in which caregivers of
ticular traditional religious healers — as experts in treating and curing patients with schizophrenia reported higher scores on sleeplessness and
spiritually caused illnesses. The study found this to be the case among insomnia compared with non-caregivers of patients with schizophrenics
many caregivers of patients with schizophrenia who explored several (Guillon, Van Impe, & Gupta, 2015).
options of healing including going to prayer camps, fetish priests or Antipsychotic medications have been found to be effective in
alternative medical practitioners in order to find permanent cure for treating the acute episodes of schizophrenia and preventing relapse of
their relative's schizophrenia. Invariably, however, the roaming from some patients (Ginovart & Kapur, 2012). In this study however family
healer to healer eventually brought them back to the hospital after caregivers described the financial commitment in acquiring the medi-
being drained both physically and financially and finding no solution. cations and the process of ensuring that the patients adhered to these
Consistently, healing traditions are often associated with inhumane acts medications as burdensome. Our finding that caregivers experience
such as beatings, starving, chaining and smearing of unknown sub- treatment related burden is consistent with a recent study in Ghana, in
stances on the patients by the healers. Some of these inhumane treat- which caregivers reported high scores on anxiety, stress and depression
ments have often been implicated as reasons for poor collaboration related to non-adherence of patients. Thus when caregiver was unwell,
between faith healers and mental health professionals in Ghana (Osafo, time and commitment to supervise patients adherence behaviour was
2016; Osafo, Agyapong, & Asamoah, 2015). However, some faith hea- poor (Kretchy et al., 2018). The fact that most of these patients were
lers have began to show readiness for collaboration, (Arias, Taylor, unable to work posed both treatment and supervision related chal-
Ofori-Atta, & Bradley, 2016) and a recent RCT study has demonstrated lenges. In terms of supervision, they were distracted by the amount of
the viability of combining psychiatric treatment with spiritual healing time they needed to provide care and supervision. In terms of treat-
in a prayer camp in the country (Ofori-Atta et al., 2018). ment, they needed extra income to augment the physical and medical
Respondents also indicated that they observed a link between the needs of the patients and other family members. The financial drain on
specific biopsychosocial factors such as birth related complications, family members with a chronically ill relative was common, especially
drug abuse and excessive thinking in the lives of their relatives and the when the family member had to leave the workforce to care for the ill
onset of schizophrenia. Generally, lay beliefs about the cause of mental family member (Niazi, Basheer, Minhas, & Najam, 2004). Csoboth,
illness have been reported to be varied and some studies in Africa have Witt, Villa, and O'Gorman (2015) have reported that essentially, the
showed that apart from spiritual factors, biopsychosocial factors are distress of caregivers of patients of schizophrenia reflect both huma-
largely implicated (Adewuya & Makanjuola, 2008). There are indica- nistic and economic burdens. We opine in this study that both super-
tions of risks of schizophrenia following obstetric complications such as vision and treatment related burdens are consistent with their postu-
prolonged labour, gestational age and complicated caesarean delivery lation.
(Buoli et al., 2016; Kotlicka-Antczak, Gmitrowicz, Sobów & Rabe-
Jabłonska, 2001), drug abuse (Adewuya & Makanjuola, 2008; LIMITATIONS
Nimwegen, Haan, Beveren, Brink, & Linszen, 2005; Parshotam &
Joubert, 2015) and a host of other psychosocial conditions. Mental Data were collected from the three main psychiatric facilities in the
stress or overthinking has been reported as one of the perceived psy- country, Accra Psychiatry, Ankaful and Pantang, which are all located
chosocial factors leading to mental illness (Choudhry, Mani, Ming, & in the southern part of the country. Care for schizophrenic patients,
Khan, 2016). Some reports in Ethiopia (Hailemariam, 2015), Nigeria however, is not limited to these institutions. Some of the caregivers
(Okpalauwaekwe, Mela, & Oji, 2017) and Uganda (Okello & Ekblad, resort to private facilities as well as prayer camps and traditional hea-
2006) show that people perceive mental stress or over thinking about lers to seek spiritual healing. Exploring these areas may have provided
daily life experiences, limited economic opportunities and future pro- additional findings of the experiences of caregivers.
spects as potential causes of mental illness. The views about the cause of
schizophrenia as found in this study is generally consistent with the IMPLICATIONS
multidimensional views about the condition and as such might need a
multifaceted approach in dealing with it (Park, Lee, Furnham, Jeon, & Nevertheless, the findings of the present study have implications for
Ko, 2017). both clinical practice and policy. In terms of practice the findings in-
Specific burdens experienced by caregivers of person living with dicate that caregivers are faced with a number of burdens- supervision
schizophrenia have also emerged in the present study: supervision and and treatment related. Attention ought to be paid to caregivers when-
treatment related burdens. Schene, Tessler, and Gamache (1996) re- ever they send their ill relative to any facilities. Provisions must be
ported that there are four main domains of structural difficulties in made for caregivers to express themselves freely based on the chal-
providing care for patients with schizophrenia: 1) tension, 2) super- lenges they encounter in their day–to-day discharge of their caregiving
vision, 3) worrying and 4) urging. Most caregivers indicated fear of duties. Caregivers need to be educated about the illness to keep things
being harmed by patients, as reported Pusey-Murray and Miller (2013). in perspective rather than seeking care at inappropriate healing loca-
The apprehension over potential violence from the patients on both tions for their relative. There is a need for clinical interventions for
caregivers or others reflect supervision related difficulties. Consistent family caregivers experiencing some forms of distress for the purpose of
with a large hospital-based cross-sectional study (N=444) among fa- improving their quality of life. Public understanding of the illness will
mily caregivers of patients with schizophrenia attending psychiatric help to reduce the stress caregivers face as they may have the oppor-
hospitals in Ghana, caregivers were stressed from supervision related tunity to freely express their problems and worries to social support
burdens (Kretchy, Osafo, Agyemang, Appiah & Nonvignon, 2018). outlets that are available to them.
Other supervision related burdens such as disruption of family routines, In terms of policy, government's intervention is key by ensuring that
interaction and economic have also been reported among caregivers in mental healthcare services are readily available and proximate. Some
Nigeria (Adeosun, 2013; Igberase, Morakinyo, Lawani, James, & caregivers had to travel long distances to access mental healthcare
Omoaregba, 2012). In South Africa, similar burdens such as violence which increases the level and amount of stress they experience. Existing
and food insecurity have been reported among caregivers (Sibeko et al., laws on mental health should consider the informal caregiver role as
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O. Gloria et al. Archives of Psychiatric Nursing 32 (2018) 815–822
important resource in the management of mental illness and structured Fatemi, S. H. (2010). Clinical handbook of schizophrenia. The Journal of Clinical
to provide some financial support to ease the burden of caregivers. Psychiatry, 71. http://dx.doi.org/10.4088/JCP.10bk06067whi.
In conclusion, caregiver perceptions of the cause of schizophrenia in Field, M. (1960). Search for security, An ethnopsychiatric study of Rural Ghana. Chicago:Northwestern Univ: Press.
Ghana requires an important educational intervention to improve early Fortes, M., & Mayer, D. Y. (1966). Psychosis and social change among the Tallensi of
detection and provision of appropriate care. Further, caregivers are northern Ghana. Cahiers d'études africaines, 6(Cahier 21), 5–40.
experiencing essentially, humanistic and financial burdens in Ghana, Friedli, L. (2000). A matter of faith: religion and mental health. Journal of Public MentalHealth, 2(2), 7–13.
which will require both innovation in clinical practice and government Gearing, R. E., Alonzo, D., Smolak, A., McHugh, K., Harmon, S., & Baldwin, S. (2011).
policy intervention to address. Association of religion with delusions and hallucinations in the context of schizo-
phrenia: Implications for engagement and adherence. Schizophrenia Research, 126(1),
150–163.
ACKNOWLEDGMENT Ginovart, N., & Kapur, S. (2012). Role of dopamine D2 receptors for antipsychotic ac-
tivity. Handbook of Experimental Pharmacology, 212, 27–52.
The authors are grateful to the three psychiatric institutions, the de-Graft Aikins, A. (2005). Healer shopping in Africa: New evidence from rural-urban
qualitative study of Ghanaian diabetes experiences. BMJ, 331(7519), 737. http://dx.
patients with schizophrenia and their caregivers who participated in doi.org/10.1136/bmj.331.7519.737.
this research. Guillon, P., Van Impe, K., & Gupta, S. (2015). Le fardeau des aidants de patients souffrant
de schizophrénie en France. European Psychiatry, 30(8), S114.
Gyekye, K. (2010). African ethics. In E. Zalta (Ed.). Stanford Encyclopedia of Philosophy
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This work was supported by the African Doctoral Dissertation Hailemariam, K. W. (2015). Perceived causes of mental illness and treatment seeking
Research Fellowship, a collaborative program of International behaviors among people with mental health problems in Gebremenfes Kidus HolyWater Site. American Journal of Applied Psychology, 3(2), 34–42.
Development Research Centre (IDRC) and African Population and Igberase, O. O., Morakinyo, O., Lawani, A. O., James, B. O., & Omoaregba, J. O. (2012).
Research Centre (APHRC) [Grant number 2015-2017ADF 03, 2015]. Burden of care among relatives of patients with schizophrenia in midwestern Nigeria.
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Irmak, M. K. (2014). Schizophrenia or possession? Journal of Religion and Health, 53(3),
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Kheng, S. B. (2005). The impact of schizophrenia: The burden of Care Seng Boon Kheng B Soc
The authors declare no conflicts of interest in relation to the study, Sci (Hons) M Soc Sci, Nus.Kotlicka-Antczak, M., Gmitrowicz, A., Sobów, T. M., & Rabe-Jabłonska, J. (2001).
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