University of Ghana http://ugspace.ug.edu.gh UNIVERSITY OF GHANA, LEGON SCHOOL OF NURSING AND MIDWIFERY COLLEGE OF HEALTH SCIENCES EXPLORING THE BELIEFS AND PRACTICES OF MOTHERS CONCERNING THE CARE OF CHILDREN WITH FEBRILE SEIZURES AT PRINCESS MARIE LOUISE HOSPITAL BY MAWUSI NYAME-ANNAN (10637169) THIS THESIS IS SUBMITTED TO THE UNIVERSITY OF GHANA, LEGON IN PARTIAL FULFILMENT OF THE REQUIREMENT FOR THE AWARD OF MPHIL NURSING DEGREE JULY, 2019 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children DECLARATION I hereby declare that except for references to other people’s work which have been accordingly acknowledged, this thesis is the original work of Mawusi Nyame-Annan produced under supervision. None of the materials in this write-up has been presented either in whole or in part to any other institution for the award of any degree or certificate. Name of student: Mawusi Nyame-Annan Signature ………………………. Date ……………………………. The undersigned hereby certify that this thesis was duly supervised in accordance with procedures laid down by the University of Ghana, Legon. Dr. Patience Aniteye Signature …………………………. Date …………………………......... Rev. Dr. Thomas Akuetteh Ndanu Signature …………………………… Date ……………………………….... i University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children DEDICATION This write-up is dedicated to the Almighty God for His mercies, grace, and wisdom given me to successfully complete this work. I also dedicate this work to my dear husband, Ernest P.K. Nyame-Annan and my lovely children, Adom, Nyameye and Nyamensa. ii University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children ACKNOWLEDGEMENT I would like to acknowledge all those who contributed in one way or the other to make this study successful. I would like to express my heartfelt gratitude to my supervisors Dr. Patience Aniteye and Rev. Dr. Thomas Akuetteh Ndanu for the great impact they made on this work. Special appreciation also goes to the staff and all participants of the study at the emergency unit of the Princess Marie Louise Hospital for their cooperation. I would also like to express my sincere gratitude to the staff of the emergency unit at the Korle-Bu teaching Hospital for their support during my pilot study. I am also grateful to all staff of the School of Nursing and Midwifery, University of Ghana, especially the lecturers for their nurturing and quality education throughout the two-year programme. To all I would say, God richly bless you. iii University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children TABLE OF CONTENTS DECLARATION .................................................................................................................. i DEDICATION ..................................................................................................................... ii ACKNOWLEDGEMENT ................................................................................................. iii TABLE OF CONTENTS .................................................................................................... iv LIST OF TABLE(S) ........................................................................................................ viii LIST OF FIGURE(S) .......................................................................................................... ix LIST OF ABBREVIATIONS .............................................................................................. x ABSTRACT ........................................................................................................................ xi CHAPTER ONE .................................................................................................................. 1 1.1 Background of the study ............................................................................................ 1 1.2 Problem statement ...................................................................................................... 5 1.3 Purpose of the study ................................................................................................... 6 1.4 Specific objectives...................................................................................................... 6 1.5 Research questions ..................................................................................................... 7 1.6 Significance of the study ............................................................................................ 7 1.7 Operational definition of terms .................................................................................. 7 1.8 Summary .................................................................................................................... 8 1.9 Organization of work ................................................................................................. 8 CHAPTER TWO ................................................................................................................. 9 LITERATURE REVIEW .................................................................................................... 9 2.1 Conceptual framework ............................................................................................... 9 2.2 Explanation of household decision making ............................................................. 11 2.2.1 Caregiver recognition and response .................................................................. 11 2.2.2 Seeking advice and negotiating access .............................................................. 12 2.2.3 Using the “middle layer” between home and clinic .......................................... 12 2.2.4 Accessing formal biomedical services .............................................................. 13 2.3 Justification of the model for this study ................................................................... 13 2.4. Caregiver recognition and response ........................................................................ 14 2.4.1 Temperature measurement ................................................................................ 16 2.4.2 Fever management ............................................................................................. 17 2.4.3 Antipyretics use ................................................................................................. 18 2.4.4 Other fever management practices .................................................................... 19 iv University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 2.4.5 Traditional methods use ..................................................................................... 20 2.5 Seeking advice and negotiating access..................................................................... 20 2.6 Using the middle layer between home and clinic .................................................... 21 2.7 Summary and Conclusion ........................................................................................ 24 CHAPTER THREE ........................................................................................................... 25 RESEARCH METHODOLOGY....................................................................................... 25 3.1 Research Design ....................................................................................................... 25 3.2 Research setting........................................................................................................ 26 3.2.1 Study Location ................................................................................................... 26 3.2.2 Metropolitan Economy ...................................................................................... 26 3.2.3 Health Care Facility ........................................................................................... 27 3.3 Target Population ..................................................................................................... 28 3.3.1 Inclusion Criteria ............................................................................................... 28 3.3.2 Exclusion Criteria .............................................................................................. 28 3.4 Sample Size .............................................................................................................. 28 3.5 Sampling technique .................................................................................................. 29 3.6 Procedure for data collection.................................................................................... 29 3.7 Data Collection Tool ................................................................................................ 30 3.8 Pre-testing the interview guide ................................................................................. 31 3.9 Data management ..................................................................................................... 31 3.10 Data Processing and Analysis ................................................................................ 32 3.11 Methodological Rigour .......................................................................................... 32 3.12 Ethical considerations ............................................................................................ 34 3.13 Summary ................................................................................................................ 35 CHAPTER FOUR .............................................................................................................. 36 PRESENTATION OF FINDINGS .................................................................................... 36 4.1 Demographic Characteristics of Respondents .......................................................... 36 4.2 Organization of Themes and Sub-Themes ............................................................... 36 4.3 Identification of Signs and Symptoms of Febrile Seizures ...................................... 37 4.3.1 Fever .................................................................................................................. 38 4.3.2 Change in eye movement .................................................................................. 38 4.3.3. Change in body movement ............................................................................... 39 4.3.4 Clenching of teeth .............................................................................................. 39 4.4 Causes and Beliefs ................................................................................................... 39 v University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 4.4.1 Physical .............................................................................................................. 40 4.4.2 Spiritual ............................................................................................................. 41 4.5 Home Remedies ....................................................................................................... 42 4.5.1 Medications ....................................................................................................... 43 4.5.2 Water/ oil ........................................................................................................... 44 4.5.3 Positioning ......................................................................................................... 44 4.5.4 Prayer ................................................................................................................. 44 4.6 Consultation of Significant Others ........................................................................... 45 4.6.1 Family ................................................................................................................ 45 4.7 Seeking care in the community ................................................................................ 47 4.7.1 Religious leaders................................................................................................ 47 4.7.1.1 Pastor/ Fetish Priestess ................................................................................... 47 4.7.1.2 Traditional healer/ herbalist ............................................................................ 47 4.7.2 Health professionals .......................................................................................... 48 4.7.2.1 Doctor/ Nurse ................................................................................................. 48 4.7.2.2 Pharmacist ...................................................................................................... 48 4.8 Healthcare Facility ................................................................................................... 49 4.8.1 Emergency ......................................................................................................... 49 4.8.2 Attitude of staff .................................................................................................. 49 4.8.3 Others................................................................................................................. 50 4.9 Mothers’ Reaction .................................................................................................... 51 4.9.1 Anxiety .............................................................................................................. 51 4.9.2 Devastation ........................................................................................................ 52 4.9.3 Crying ................................................................................................................ 52 4.9.4 Confusion........................................................................................................... 52 4.10 Ignorance ................................................................................................................ 52 4.10.1 Condition (febrile seizures) ............................................................................. 52 4.10.2 Management of febrile seizures ....................................................................... 53 4.11 Summary of findings .............................................................................................. 53 CHAPTER FIVE ............................................................................................................... 56 DISCUSSION OF FINDINGS .......................................................................................... 56 5.1 Demographic Characteristics of Respondents .......................................................... 56 5.2 Caregiver Recognition and Response ...................................................................... 57 5.2.1 Beliefs of mothers about febrile seizures .......................................................... 57 vi University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 5.2.2 Practices of mothers in response to febrile seizures .......................................... 58 5.3 Seeking Advice and Negotiating Access ................................................................. 60 5.4 Using the Middle Layer between Home and Clinic ................................................. 61 5.5 Accessing Formal Biomedical Services ................................................................... 62 5.6 Mothers’ Reaction .................................................................................................... 64 5.7 Ignorance .................................................................................................................. 64 5.8 Evaluation of the Study Model................................................................................. 65 5.9 Suggestion for Model Modification ......................................................................... 65 CHAPTER SIX .................................................................................................................. 66 SUMMARY, IMPLICATIONS, LIMITATIONS, CONCLUSION AND RECOMMENDATIONS ................................................................................................... 66 6.1 Summary of the Study .............................................................................................. 66 6.2 Implications for Nursing Practice ............................................................................ 68 6.3 Nursing Education .................................................................................................... 68 6.4 Nursing Research ..................................................................................................... 68 6.5 Limitations of the Study ........................................................................................... 69 6.6 Conclusion ................................................................................................................ 69 6.7 Recommendations .................................................................................................... 70 REFERENCES .................................................................................................................. 73 APPENDICES ................................................................................................................... 82 Appendix A: Introductory letter to NMIMR-IRB ............................................................. 82 Appendix B: Introductory letters to GHS-IRB .................................................................. 83 Appendix C: Ethical Clearance from NMIMR-IRB .......................................................... 85 Appendix D: Ethical approval from GHS-IRB .................................................................. 86 Appendix E: Introductory letter GHS ................................................................................ 87 Appendix F: Introductory letter to Accra Metropolitan Health Directorate ..................... 88 Appendix G: Introductory letter to PML ........................................................................... 89 Appendix H: Interview Guide ............................................................................................ 90 Appendix I: Consent Form................................................................................................. 93 Appendix J: Participants information sheet ....................................................................... 95 Appendix K: Demographic Characteristics of Respondents ............................................. 99 Appendix L: Major Themes and Sub-themes .................................................................. 100 vii University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children LIST OF TABLE(S) Table 4.1: Organization of Themes and Sub-themes ......................................................... 37 viii University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children LIST OF FIGURE(S) Fig 2.1: Household Decision Making Model and Pathways of Care ................................. 10 ix University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children LIST OF ABBREVIATIONS AIDS ………………… Acquired Immune Deficiency Syndrome AMA…………………. Accra Metropolitan Assembly BM…………………… Behavioural Model FSR…………………… Febrile Seizure Respondent GCNM ………………. Ghana College of Nurses and Midwives GHS…………………… Ghana Health Service GHS-ERC…………….. Ghana Health Service - Ethical Review Committee HBM………………...… Health Belief Model HIV…………………….. Human Immunodeficiency Virus ILAE…………………… International League Against Epilepsy MOH…………………… Ministry of Health NMIMR………………… Nugochi Memorial Institute for Medical Research OPD…………………….. Out Patient Department PML…………………….. Princess Marie Louise WHO……………………. World Health Organization x University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children ABSTRACT Febrile seizures are the most common causes of childhood seizures that occur in children under five globally. Mothers’ care based on knowledge, beliefs and practices may reduce the incidence and complication. Thus, the aim of this study was to explore the beliefs and practices of mothers concerning the care of children with febrile seizures at the Princess Marie Louise Hospital. This was an exploratory descriptive qualitative study where a semi- structured interview guide based on the Household Decision Making Model was used. A total of 12 mothers who attended the Princess Marie Louise Hospital at the time of the study were purposefully sampled and interviewed. Each interview lasted between 35-60 minutes and was recorded with permission from the respondents. Verbatim transcription of the interviews was done and data analysis was done using thematic content analysis. The study revealed that, although mothers had an idea about febrile seizures, they lacked adequate knowledge about its management at home and hence use inappropriate methods to abort the seizure or stop its recurrence. The researcher therefore recommends that, educative programmes should be developed for mothers on febrile seizure that occur in children, its associated signs and symptoms and how to effectively manage it at home before seeking biomedical service. Keywords: febrile seizure, fever, beliefs, practices, health seeking behaviour, biomedical service. xi University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children CHAPTER ONE This chapter presents the background of the study, problem statement, purpose of the study, objectives of the study, research questions, significance of the study and the operational definition of terms used in the study. 1.1 Background of the study Febrile seizure or febrile convulsion is a sudden disturbance in the electrical functioning of the brain occurring in the presence of a temperature above 38.0℃. It normally occurs in children who are between six (6) months and five (5) years (Winkler, Tluway, & Schmutzhard, 2018). Mostly, there is no associated intracranial infection, (Khair & Elmagrabi, 2015). It is the most common neurological disorder in children. During childhood, one out of every twenty-five (25) children in a given population will experience at least one febrile seizure episode (Waruiru & Appleton, 2004). Signs of febrile seizures in children may include staring, loss of consciousness, jerky movements or shaking of the limbs and body and sometimes turning blue (Liano, Mencaroni, 2018). Febrile seizure can be classified into simple or complex seizures depending on the duration and the type of seizure. Simple febrile seizure occurs once in 24 hours and lasts for 15 minutes or less and it is generalized in nature. Complex febrile seizure on the other hand, lasts more than 15 minutes, it is mostly focal or happens in successions with durations more than 30 minutes (Graves, Oehler, & Tingle, 2012). In approximation, 60 to 70% of febrile seizures are simple and about 30 to 40% are complex in nature (Koyama, 2013). It has been reported that, about 2% of children who experience simple febrile seizures are at risk of developing epilepsy, whilst 25% of those with complex febrile seizures are at risk of status epilepticus (Patel & Scott Perry, 2017). Similar findings were found in a study: ‘long-term risk of developing epilepsy after febrile seizures’ a prospective cohort study by Neligan, Bell, Giavasi, Johnson, Goodridge, Shorvon, & Sander (2012). Children who 1 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children suffered febrile seizures were at increased risk of developing epilepsy, and an estimated 6.7% of people developed epilepsy after 20 years of febrile seizures. Additionally, some retrospective studies indicated that, there is a link between a complex febrile seizure and a temporal lobe epilepsy in about 40% adult patients (Patterson, Baram, & Shinnar, 2014). A child with a past medical history of at least one episode of a simple febrile seizure, has about 33% chance of another seizure episode following a subsequent fever, and a 50% chance of a third febrile seizure if he/she had two simple febrile seizures (Carmant, 2015). The International League Against Epilepsy, defined febrile seizure as a seizure that occurs in association with a febrile illness in the absence of a central nervous system (CNS) infection or acute electrolyte imbalance in children older than one month of age without prior afebrile illness (Paediatric quideline, 2012). There is a risk of neurological illness such as epilepsy, recurrence of seizures and death. However, parents must be reassured of the fact that children who do not have any underlying developmental conditions or problems have lower risks of suffering lasting neurological effects resulting from febrile seizures (Graves et al., 2012). Developmental delay, viral infections, certain vaccinations, a family history of febrile seizures, zinc and iron deficiencies are some risk factors related to febrile seizures (Graves et al., 2012). Febrile seizure is believed to occur either before or soon after fever onset, (Seinfeld & Shinnar, 2017). There is a small possibility of mortality after complex febrile seizure, predominantly febrile status epilepticus. Although, the prognosis for febrile seizure was found to be normally good, quite a number of children will experience some consequences (Seinfeld & Shinnar, 2017), epilepsy will develop eventually in about 57% of children with prolonged, focal and recurrent febrile seizures. 2 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children In high income countries, febrile seizure is a benign illness but this cannot be said of middle in-come and low in-come countries due to increased mortality (Gordon, Dooley, Camfield, Camfield, & MacSween, 2001). There is a high prevalence of febrile seizures in children who have been admitted to hospital in rural Africa (Winkler et al., 2018). The developing and immature brain may suffer immediate or long term consequences following a seizure episode (Holmes, 2016). The exact cause of febrile seizure is unknown, but some predisposing factors may include fever, head injury, respiratory infections, low blood sugar levels, epilepsy among others (Carmant, 2015). In addition, genetic or familial predisposition is key (Khair & Elmagrabi, 2015). Thus, children with positive history of febrile seizures in their families are likely to experience febrile seizures than those without such family history. Febrile seizure occurs in 2-5% of children during their first five years of life but most common during their second year [Kimia, Bachur, Torres, & Harper, 2015;Khair, & Elmagrabi, 2015]. Again, it occurs in approximately 2-5% of the population worldwide, with Japan having a rate of 6-9% and 14% in the Pacific Islands (Koyama, 2013). In the United States 2-5% of children have febrile convulsion before their 5th birthday. It is the commonest form of seizure accounting for 30% of seizure disorders in children, (Hu, Zou, Zhong, Gao, Zhao, Xiao, & Kwan, 2014). Additionally, about 3-5% of healthy children who are between nine (9) months and five (5) years will have a seizure caused by fever which mostly occurs in the first 24 hours of an illness (Pediatrics, 2011). However, there are limited data from low-income countries including Ghana on febrile seizures. This may be due to the difficulty in differentiating between the types of seizures, especially if is due to falciparum malaria infection. 3 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Literature indicate that the traumatic nature of febrile seizures put most mothers in fear and it is also a leading cause of paediatric emergency admissions at various health facilities worldwide (Sajadi & Khosravi, 2017). Poor understanding of seizures that occur in children among mothers contribute mainly to mortality and morbidity that result from convulsion in low-income countries (Jarrett, Fatunde, Osinusi, & Lagunju, 2012). Health seeking behaviours are largely determined by religious, social and cultural norms, beliefs about the cause of disease, acceptability of interventions as well as local decision making practices (Colvin, Smith, Swartz, Ahs, de Heer, Opiyo, … George, 2013). Ethnic variations exist in the beliefs and practices regarding childhood fever (fever being the main precipitating factor of febrile seizure) (Crocetti, Sabath, Cranmer, Gubser, & Dooley, 2009). Delay in accessing medical care or treatment by mothers is as a result of the perceptions about the cause of illness as well as cultural beliefs and practices (Abubakar, Van Baar, Fischer, Bomu, Gona, & Newton, 2013). It has been noted that mothers who see certain illnesses as not related to physical causes do not seek medical treatment or sometimes delay in seeking medical care (Dillip, Alba, Mshana, Hetzel, Lengeler, Mayumana, … Obrist, 2012). The choice of treatment options or modality by many people in Africa is influenced by their beliefs about illness and health (Asare, 2017). It has been acknowledged that traditional medicines are commonly used among Ghanaians to treat various ailments (Nguta, Appiah-Opong, Nyarko, Yeboah-Manu, & Addo, 2015). Literature indicate that most Ghanaians sought management for an illness depending on their belief system on the cause (Asare, 2017). However, little is known about the practices and beliefs of mothers concerning the care of children under five with febrile seizures in the Accra Metropolis in Ghana. 4 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 1.2 Problem statement Data from Princess Marie Louise Hospital indicated that, out of 4,414 admissions in 2014, 251 (5.6%) were diagnosed with febrile seizures. However, there was a significant increase in 2015 as 268 (7.2%) out of 3,708 admissions were diagnosed with febrile seizures. From 2016 to the first half of 2018, there was a drop from 5.1% to 3.1%. However, eight (8) deaths were recorded between 2016-2018 (P.M.L. Statistics, 2014-2018). Febrile seizures represent a common cause of children’s admission globally, (Winkler et al., 2018). In middle income countries such as Ghana where various incorrect traditional beliefs about the etiology of sickness such as seizures exist, and detrimental practices for seizure treatment abound, the outcome of seizure is poor [Asare, 2017; Jarrett, Fatunde, Osinusi, & Lagunju, 2012)]. It is however imperative that mothers understand febrile seizures and how their children should be managed appropriately at home before sending them to the hospital. This is achievable if mothers’ beliefs and practices are known (Sajadi & Khosravi, 2017). There is a higher risk of acute seizures in children in low- income countries compared to those in high-income countries (Ciccone, Mathews, & Birbeck, 2017a). Some reasons that may account for the higher risk of acute seizures in children in low-income countries are poor parental care, parasites such as worm infestations and other infectious diseases. Febrile Seizure has social, physical and cultural characteristics which influence treatment and possible outcomes (Ciccone, Mathews, & Birbeck, 2017b). In the African setting, care seeking timelines may also be delayed (Ciccone, Mathews, & Birbeck, 2017c). During the researcher’s period of 10 years’ practice as a nurse, she came across mothers of children with febrile seizures who had many conflicting beliefs about the causes of the disease and hence used diverse practices to manage the condition. One of the danger signs of childhood illness is a seizure. There is however, the need to refer such cases to a 5 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children secondary level facility as suggested by the World Health Organization’s Integrated Management of Childhood Illness (The World Health Report 2005). In Ghana however, there is limited literature on the beliefs and practices of mothers of children with febrile seizures. The Princess Marie Louise (PML) Hospital is the only Paediatric hospital of the Ghana Health Service, and one of the busiest hospitals in the country which serves as a primary and secondary health facility. There is the need to identify the beliefs and practices of mothers concerning the care of children with febrile seizures. The study was undertaken using mothers who accessed healthcare in this facility to explore their beliefs and practices concerning the care of children with febrile seizures so as to avert the untoward sequelae of these seizures and to mitigate the incidence and reduce the negative outcomes. 1.3 Purpose of the study The purpose of the study was to explore the beliefs and practices of mothers concerning the care of children with febrile seizures. 1.4 Specific objectives The specific objectives were to: 1. describe how mothers recognize and respond to febrile seizures in their children under five. 2. explore where mothers seek advice for the care of their children with febrile seizures. 3. define the role of Significant Others in the type of health care sought for the children with febrile seizures. 4. Identify the factors affecting the mothers’ choice of biomedical services for their children with febrile seizures. 6 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 1.5 Research questions 1. What are the beliefs of mothers with children who have febrile seizures and how do they recognize the condition? 2. What are the practices of mothers who have children with febrile seizures? 3. What are the decision making practices of families who have children with febrile seizures? 4. What practices do mothers of children with febrile seizures undertake before bringing their children to the hospital? 5. What factors influence mothers’ decision to bring their children to the hospital? 1.6 Significance of the study Assessing the beliefs and practices regarding febrile seizures would help spread the awareness about febrile seizures and how it can be managed effectively by mothers at home before seeking medical care. Furthermore, the study would inform the academic world and policy makers about the need for future evidence based research on the beliefs and practices of mothers concerning febrile seizures and subsequently develop suitable training/ educational programmes for these mothers. Lastly, the study will help minimize the existing gap and also add to the research knowledge on the beliefs and practices of mothers about the care of children with febrile convulsions or seizures in Ghana. 1.7 Operational definition of terms 1. Febrile seizures: The disruption in the electrical functioning of the brain of a child under five (5) years caused by an abnormal rise in body temperature (fever). 2. Fever: A body temperature above 37.5℃. 3. Beliefs: One’s acceptance of something that exists. 4. Practices: The real application of one’s idea 7 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 5. Health seeking behaviours: The actions taken by mothers to access healthcare for their sick children. 6. Biomedical services: Formal health care facility/services. 1.8 Summary This chapter provided information on the study about the beliefs of mothers concerning the care of children with febrile seizures at the emergency unit of the Princess Marie Louise Hospital, Accra. A brief background to the research problem was given. The chapter also discussed the significance of the study, objectives and operational definitions of terms used. The next chapter presents a literature review on the conceptual framework (Household Decision Making Model) and on mothers’ beliefs and practices concerning management of febrile seizures in their children. 1.9 Organization of work The study was organized into six chapters. Chapter one provided the background to the study, presented the problem statement, the study objectives, research questions, the significance of the study as well as the operational definition of terms used. Chapter two provided relevant literature on the beliefs and practices of mothers of children with febrile seizures and the conceptual framework guiding the study. The research design was described in chapter three whilst chapter four presented the results of the study findings. The five chapter discussed the findings of the study and the sixth chapter presented the summary, implications, limitations, conclusion and recommendations. 8 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children CHAPTER TWO LITERATURE REVIEW This chapter examined available literature on the beliefs and practices of mothers concerning the care of children with febrile seizures. This involved reading, researching, and gathering information from published works and written data that supported closely the present study. The literature review looked at works that were relevant to febrile seizures and the associated beliefs and practices. Based on the objectives of the study, the literature review was organized on the various thematic areas. Various databases searched included Medline, PubMed, Sci-Direct and CINAHL using the search terms such as fever, seizure, beliefs, practices, convulsion, care, febrile seizure, children and mothers, either in combination or as a single word. 2.1 Conceptual framework The model used to organize this research was the conceptual model of Household Decision Making and Pathways of Care. This framework was derived from the four modes of household recognition and response to childhood illness proposed by Colvin et al., (2013). It was used to examine factors that predict treatment options mothers seek for their ill children. This model was used by (Pierce, Gibby, & Forste, 2017), in a study: caregiver decision-making, household response to child illness in Sub-Saharan Africa. The dynamic nature of treatment choices made by caregivers was emphasized. They modeled whether these three forms of treatments (no treatment, middle layer treatment such as traditional healer, a pharmacist and or bio-medical treatments) were sought for a child with fever, cough or diarrhea. 9 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Fig 2.1: Household Decision Making Model and Pathways of Care (Adopted from Colvin et al., 2013) 10 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 2.2 Explanation of household decision making The model comprised four constructs namely; caregiver recognition and response, seeking advice and negotiating access, using the middle layer between home and clinic and accessing formal biomedical services. 2.2.1 Caregiver recognition and response Caregivers, for that matter mothers are most of the time the first people to recognize an illness in their children and respond accordingly. Such responses may include seeking advice from family and friends, use of home remedies, going to traditional healers or sending the child to a medical health facility (Pierce et al, 2017). The first step for a child to get treatment is the ability of the mother to recognize the existence of an illness, and the perception of such a mother adds to timely and proper interventions (Gadsden, Ford, & Breiner, 2005). The type of treatment options sought after is influenced by the mothers’ understanding of the cause of illness (Pierce et al, 2017). In addition, the severity of the illness as well as the signs exhibited by a child influence to some extent, the response of the mother (Ellis, Winch, Daou, Gilroy, & Swedberg, 2007). Other factors that may influence the recognition of an illness is the mother’s level of education, knowledge about healthcare and the exposure to media (Pierce et al, 2016). Vikram, Vanneman, & Desai (2012), reported that, one’s acceptance of modern medical practice is dependent on the knowledge acquired through education. Thus, the ability of a mother to recognize and respond correctly to illness is a critical first step in treatment and is associated with her knowledge of illness and modern healthcare. 11 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 2.2.2 Seeking advice and negotiating access It is not the sole responsibility of mothers in the African society to decide on the actions taken in response to an illness. The mothers have the social obligation to inform their in-laws, grandparents or neighbours (Nsungwa-Sabiiti, Källander, Nsabagasani, Namusisi, Pariyo, Johansson, … Peterson, 2004). Mothers have to seek advice from their husbands or the head of the family who is most of the time a male (Falade, Ogundiran, Bolaji, Ajayi, Akinboye, Oladepo, … Oduola, 2007). There is usually a slow response time as the mothers of such children have to ask for permission/ opinion from others before decisions are taken. This may have an adverse effect on the children as treatment sought may be delayed leading to dire consequences (Jones & Jacobsen, 2007). Aside the risk of treatment delay, some key decision makers may oppose orthodox medicine or modern healthcare, as they believe that the child may die when sent to the hospital (Comoro, Nsimba, Warsame, & Tomson, 2003). Hence, the wellbeing of a child and his/ her survival depend on the mother’s ability to make healthcare decisions to seek for care outside the home (Gadsden, V, L., Ford, M., & Breiner, 2005). Furthermore, one cannot seek quality healthcare without money. Access to medical healthcare is influenced by both residential and socioeconomic status (Taber, Leyva, & Persoskie, 2015). 2.2.3 Using the “middle layer” between home and clinic Caregivers most often commence with home treatments, and will only change to an alternate treatment if the first treatment is unsuccessful, Pierce (2016). A study by Ellis et al., (2007), conducted in Mali, indicated that if there is no improvement in the child’s condition a few days after commencement of home treatment, the caregiver then seeks treatment from pharmacies, traditional healers and community health workers. The reason for choosing such treatment may be due to the fact that they are less expensive than the biomedical services being rendered at the various health facilities although they differ in 12 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children their training, treatment and the type of medications given, (Pierce, 2016). Friend-du Preez, Cameron, & Griffiths, (2009), posited that the middle layer is very alluring in instances where the cause of the sickness is believed to be due to evil spirits or wizardries such that their services are engaged to deal with such supernatural powers. 2.2.4 Accessing formal biomedical services Seeking biomedical services is the best since they are able to treat the illness a child may present with. However, in a study conducted in Burkina Faso, many ill children were not sent to the hospital by their parents as a result of financial constraints (Beiersmann, Sanou, Wladarsch, De Allegri, Kouyaté, & Müller, 2007). Other challenges may include; cost of services provided, the quality of care, the trust of the facility as well as the distance one has to cover to access health. Notwithstanding the challenges aforementioned, willingness to access a biomedical service is associated with the mother’s educational level and socioeconomic status (Olaogun, Adebayo, Ayandiran, & Olasode, 2006). As a result, if the treatment outcomes prove positive, mothers are likely to use the facility again or even recommend it to others. 2.3 Justification of the model for this study A number of models have been used from literature to assess the beliefs of people concerning decisions on health. One of such models is the The Health Belief Model (HBM), as proposed by [Hochbaum, 1958; cited in Becker, 1974]. This model posited that individual’s perception of health is influenced by beliefs about vulnerability to a health risk and its consequences. This affects the individual’s readiness in taking decision or an action. This model has been used to examine the utilization of preventive care (Carrmel, 1991). The HBM model was not used in this work because it was more applicable to the prediction of a broader range of health behaviours in lager populations. Three broad areas have been 13 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children identified in a study, they included: preventive health behaviours, such as health promotion (example exercise and diet) and health-risk behaviours such as smoking as well as vaccination and contraceptive practices: sick role behaviours, mainly adherence to recommended medical treatments; and clinic use, which includes physician visits for various reasons (Abraham & Sheeran, 2016). Additionally, the second model that could be used for this study is The Behavioural Model (BM) as proposed by [Anderson, 1968; cited in Abraham & Sheeran, 2016]. This model consisted of three main components namely:  Predisposing factors such as education, family size, age, sex and employment.  Need factors such as symptoms of illness, disability and perceived health status.  Enabling factors such as insurance, income and residence. The constructs of the behavioural model do not fit the objectives of the study and hence could not be used for this study. However, the appropriate model for this study was the household decision making model whose constructs were appropriate for the objectives of this study. The model can be used to construct the link between the beliefs of mothers about febrile seizures and practices they employed to abort the seizures. The model explains what goes on at home, how mothers are able to recognize their children are sick, who is involved in decision making at home concerning where to seek biomedical services and the remedies used before finally arriving at the hospital. 2.4. Caregiver recognition and response There is a spiritual involvement in the treatment of illness and healthcare in Ghana (Asare, 2017). The reaction of mothers to febrile seizures that occur in children can lead to psychological, behavioural and even physical manifestations. Psychological manifestations may include apprehension, fear of recurrence of seizure, fear of possible development of 14 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children epilepsy and anxiety about fevers. Physically, mothers experience sleep disruptions, loss of appetite and indigestion. As a result, such mothers may perceive that their children are now susceptible to medical or developmental challenges (Hussein, El, Saboula, & Eldein, 2016). In a study conducted in a community in Nigeria on the perception of childhood convulsion among women, a greater number of the participants (90.8%) have the believe that fever could be responsible for convulsion in children. However, in most homes in the community, parents attributed the cause to be malaria fever, (constituting 58.4% of participants). Others believed it was hereditary whilst 69.8% believed the children die and regain consciousness or life afterwards (Anigilaje & Anigilaje, 2013). For some parents, a first febrile seizure is a turbulent situation which they described as chaotic, others felt they had trouble thinking straight while waiting for the seizure to pass and feeling unable to do anything (Westin & Levander, 2018). Ethnicity, race and sociodemographic factors are known to influence the beliefs and practices of parents regarding fever (Taveras, Durousseau, & Flores, 2004). Some mothers believe that, fever may result in serious complications and this has led to increase in fever phobia as well as increase overdosing of medications (Zyoud, Sa’ed, Al- Jabi, Sweileh, Nabulsi, Tubaila, Awang, & Sawalha, 2013). Febrile seizure has been reported to be one of the illnesses where the use of antipyretics has strongly been encouraged (El-Radhi, 2012). Tepid sponging, use of antipyretics or fanning which are measures of controlling body temperature, are believed to prevent the occurrence of febrile seizures (Kelly, Sahm, Shiely, O’Sullivan, et al., 2016). Literature has it that, simple febrile seizures are not harmful and does not cause any neurological effect. Due to lack of evidence and the risk of adverse effect, neither anticonvulsants or antipyretics are suggested for febrile seizure prevention [Graves et al., 2012; Mittal, 2014]. 15 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children However, despite the abovementioned, caregivers have a common idea that febrile seizures lead to brain damage or developmental disorders (Sajadi & Khosravi, 2017). The attitude towards fever and the dependence on antipyretics to reduce the fever and prevent the occurrence of seizures as well, exists amongst healthcare professionals, [Demir & Sekreter, 2012;Greensmith 2013;Martins & Abecasis, 2016]. First aid management at home aims at prevention of aspiration as well as reducing the body temperature. These can be achieved by placing the child’s head on his/her side to prevent aspiration and tepid sponging to control pyrexia (Aluka, Asibong, Gyuse, Meremikwu, Oyo-Ita, & Udonwa, 2013). A study report says, in developing countries like Nigeria, quite a number of children with febrile seizures are treated at home with traditional medicines before presenting to the medical facility. Subsequently, there is a misconception about the cause of illness and the use of these traditional medicines and practices used by the parents were inappropriate and scientifically proven to be invalid and harmful to the child (Deepika & VipinVageria, 2017). Administration of harmful traditional medicines, delayed care, in resource poor settings complicates acute febrile seizures in the tropical regions (Birbeck, 2010). 2.4.1 Temperature measurement Most people including health professionals use body temperature to determine a person’s health status (Obermeyer, Samra, & Mullainathan, 2017). Mothers measure temperature by feeling, or palpating parts of the body as well as the use of various thermometers (Singh, Pai, & Kalantri, 2003). For the accurate measurement of a child’s temperature, one must consider the use of a thermometer whether at home or in the hospital setting. However, whether mothers at home have acquired a thermometer or know how to read or interpret its readings are areas that need research. The normal body temperature in children ranges between 36.5-37.5℃ (Novak & Gills 2016). Literature has it that, although 16 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children parents may be worried about their children’s elevated body temperatures, not all may have a thermometer at home. Nonetheless, the ability to accurately check or read a thermometer cannot be predicted by owing one. Notwithstanding, if educated on how to accurately read the thermometer, a section out of the large number of mothers may be able to read the thermometer recordings (Robinson, Jou, & Spady, 2005). Additionally, factors such as one’s socio-economic status, educational background, age of the mother may predict how accurately temperatures are taken and interpreted or read (Gadsden, Ford, & Breiner, 2005). 2.4.2 Fever management Fever is a common symptom that is associated with various childhood illnesses including respiratory tract infections, malaria, diarrhea diseases, measles and urinary tract infections (Adedire, Asekun-olarinmoye, & Fawole, 2014). Febrile illnesses have been recognized to be the common cause of hospital admission, its accompanying infectious causes have a great impact on childhood mortality and morbidity worldwide, particularly in low and middle income countries (Iroh Tam, Obaro, & Storch, 2016). Not being able to recognize fever as a sign of a serious infectious illness, can have dire consequences on the child. Fever is reported to be one of the primary reasons parents seek medical care for their children, with an estimated 30% seen by paediatricians having fever as their chief complaint (El-Radhi, Carroll, & Klein, 2009). Fever can be defined as a rise in body temperature above the normal range or variation. For children, the normal value is between 36.5℃-37.5 (Howard & Westerby, 2011). Fever is one of the main symptoms of childhood illness causing febrile convulsion or seizure. Parental worry about fever in children and resulting use of antipyretic is on the increase (Zyoud et al., 2015). Literature also has it that most parents have misconceptions about fever, its role in ailment and its management (Crocetti et al., 2009). Ethnic or racial differences could play 17 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children a role in the belief systems and practices toward fever management (Affognon, Mburu, Hassan, Kingori, Ahlm, & Evander, 2017). Temperature ranges that parents identified as fever was between 37.5℃-39℃, and normal temperatures ranged between 36℃-38 in a study by Kelly, Sahm, Shiely, Sullivan, et al., (2016). Understanding the role of fever in illness is an important first step for education because this knowledge will help guide how mothers monitor and treat their children with fever (Sajadi & Khosravi, 2017). 2.4.3 Antipyretics use Fever is one of the most common complaints in children and the single non-trauma- related case that causes mothers to send their children to an emergency unit or department. This is as a result of mother’s concern about fever and its possible complications such as febrile seizures or brain injury (Hussein et al., 2016). Hussein et al added that, most severe childhood ailments are frequently associated with fever. This is considered by many parents and clinicians as a major sign of illness and sometimes can be an illness by itself rather than a symptom or a response to an illness. It is the fear about the consequences of fever that mothers are convinced that antipyretics must be used to reduce fever. This fear is common among parents and clinicians. However, antipyretics are ineffective in preventing febrile convulsions or seizures ( El-Radhi et al., 2009). Although most clinicians approve the use of antipyretics for fever relief symptoms, many incline to prescribe antipyretics for children with fever. Being an essential precursor of a febrile seizure, clinicians concluded that antipyretic measures would prevent febrile seizures. Thus parents are advised that antipyretics administration to a child at risk of febrile seizure may reduce further occurrences (El-Radhi et al., 2009). However, the correct dosage of an antipyretic is another area that needs to be researched. A study suggested that parents often abuse or misuse antipyretics by either under dosing or overdosing (Bilenko, Tessler, Okbe, Press, & Gorodischer, 2006). 18 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children The most anxious moments for parents is when their children fall sick and are not able to assess the severity of the illness. Thus, they become disappointed in situations when they feel they do not give their best of care to their sick children. Although informative programs that have been developed to support parents in fever management in children have proven effective, some parents remain worried and some do mismanage fever, literature says (Wirrell & Turner, 2001). However, since these parents become worried in getting a better solution or cure for their sick children with fever, some seek advice and reassurance from friends, family, health professionals, the internet, books among others, about the management of fever (Kelly, Sahm, Shiely, O’Sullivan, et al., 2016). Some parents use antipyretics such as paracetamol and ibuprofen to reduce fever in their children especially during teething when their body temperatures become very high. In the first 24 hours’ of fever antipyretics were given as first aid for fever and were viewed as effective treatment for fever (Chibwana, Mathanga, Chinkhumba, & Campbell Jr, 2009). It is important however to note that, febrile seizures cannot be prevented using cold compresses, tepid bath, or using antipyretic medications, they can only reduce the fever and make the child feel better (El-Radhi, 2012). The core indication for an antipyretic is not for the reduction of body temperature but for the relieve of discomfort and anxiety (El- Radhi, et al., 2009). 2.4.4 Other fever management practices Some parents employed the use of cold water, cold or tepid sponging (Aluka et al., 2013). Tepid sponging is the use of tepid (tap) water of a temperature between 24℃ - 33℃ to reduce high body temperatures. The body is not immersed in the water but a sponge or towel is wet to wipe the body. This can be done at home or in the hospital setting. There are however, techniques in doing it appropriately to avoid causing the patient to convulse especially in children. 19 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 2.4.5 Traditional methods use In a study conducted at Ho in Ghana on the knowledge, beliefs and practices regarding febrile seizures, 20% of mothers believed that seizures can be stopped by administering herbs or concoctions to a child with fever (Nyaledzigbor, Adatara, Kuug, & Abotsi, 2016). Mothers in another study stated that they shook their children having seizures in order to receive a reaction from the children and others percussed the back of the children with the belief that they were choking (Westin & Levander, 2018). Mortality can however arise from poor management or unorthodox management (Eseigbe, Eseigbe, & Adama, 2012). In a cross-sectional survey conducted by Anigilaje and Anigilaje (2012), on childhood convulsion in a community in Nigeria, 87.1% of mothers gave cow urine concoction to their convulsing children whilst about 61.2% said, they put spoons or their hands into the children’s mouth (Anigilaje & Anigilaje, 2012). These practices can lead to aspiration and subsequent death of the children. 2.5 Seeking advice and negotiating access Consultation of family members by mothers is one main method of sharing responsibility and seeking for help (Kelly, Sahm, Shiely, Sullivan, et al., 2016). This may be because some mothers think they are young and need advice from the elderly or more grown-ups who may be more experienced when it comes to caring for sick children. To some however, information received from the family is considered more important. It is believed that taking decisions about a child’s health care are solely household decisions where the decisions are influenced by factors such as relatives in the house/ family (Forry, Tout, Rothenberg, Sandstrom, & Vesely, 2013). Others access information about management of febrile children from the internet, doctors, nurses, books and magazines, whilst others rely on intuitions, past experiences and common sense (Sahm, Kelly, Mccarthy, Sullivan, Shiely, & Janne, 2016). 20 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 2.6 Using the middle layer between home and clinic Febrile convulsions or seizures are the commonest causes of seizures that occur in children with about 4% of children between one to six years having at least one episode of febrile seizure. It is therefore important for mothers of such children to have correct and sufficient knowledge about the relationship between fever and febrile seizures and its possible outcomes (Hesdorffer, Benn, Bagiella, Nordli, Pellock, Hinton, & Shinnar, 2011). Mothers see febrile seizure as a perceived threat to their children. To some, observing a child having a seizure or convulsion is a very scary event. Research has shown that febrile seizures in children create fear and grave concerns in mothers (Patterson, Carapetian, Hageman, & Kelley, 2013). Some sources of fear include; mental retardation, physical disability, repeated seizures, fear of death, low intelligent quotient (IQ) and an uncertain future for the child (Mohsen & Hazaveyee Mahboobeh, 2013). In another study, it was found out that mothers whose children have ever suffered febrile seizures even though, have acceptable facts regarding the causes, symptoms and signs of febrile seizures, negative beliefs still continue amongst mothers who point the cause of febrile seizures in children to mystic forces. These beliefs of mothers informed their decision about the type of treatment or remedy to be given to the child who has the febrile seizures (Nyaledzigbor et al., 2016). Native concoctions, left over medications in syrup or tablet forms constituted more than 60% of home interventions mothers use to stop seizures in children (Udoh, Eyong, Okebe, Okomo, & Meremikwu, 2014). In their study, they found out that, most care givers/ mothers chose traditional healers over formal healthcare givers/ providers with the reason being the cost of care. This can be true in middle income countries like Ghana where cost of living is quite high for the unemployed. Other studies also identified financial constraint as a major factor in choosing a provider for treatment of febrile seizures in children (Mbonye, Buregyeya, Rutebemberwa, Clarke, Lal, Hansen, … LaRussa, 2017). The few that visited 21 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children formal health facilities did so because of proximity or following advice from neighbours (Udoh et al., 2014). Middle layers in the community include; nurses, doctors, pharmacists, pastors, fetish priests, herbalists and or traditional healers among others. 2.7 Accessing formal medical services Every year, millions of children die of treatable and preventable conditions in low and middle income countries because there is delay in accessing medical care (Grant, 2016). Care-seeking for children is the ability of the mothers to recognize the existence of an illness in their children and the measures put in place to seek for treatment for the children (Kagabo, Kirk, Bakundukize, Hedt-, Gupta, Hirschhorn, … Amoroso, 2018). There is a strong awareness and advocacy for conditions such as Malaria, cholera, tuberculosis, Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) in Ghana. Subsequently, measures are put in place to curb the occurrence of such conditions. However, that is not the case for febrile seizures. As a result, most mothers who have less information on the management of febrile seizures, end up deploying erroneous health seeking behaviours and practices. In a study conducted by Diop and friends (2003), febrile convulsion in children has been seen as a cause of epilepsy in African societies including Ghana (Diop, De Boer, Mandlhate, Prilipko, & Meinardi, 2003). Care seeking involves any care sought for a sick child outside the home. The caregiver is mostly the mother (Geldsetzer et al., 2014). Parents bring their children with simple febrile seizures to the emergency unit for medical care after the seizure has resolved (Hageman, Kelley, Patterson, Carapetian, Hageman, & Kelly, 2013). Most often, nurses at the emergency unit are the first healthcare professionals to attend to children with convulsion. Thus, have a very important role to play in managing children with such condition (Paul, Rogers, Wilkinson & Paul, 2015). 22 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Some mothers may not be aware of the causes of febrile seizures. Febrile seizure occurrence brings about different kinds of responses by mothers which are mostly defined by their economic, social, cultural and educational backgrounds (Sajadi & Khosravi, 2017). The outcome of febrile seizures may be determined by the causes as well as the immediate responses of the parents to seek treatment (Patel et al., 2015). Literature indicate that, since children are vulnerable to poor outcomes, unnecessary delays at home or inappropriate interventions, delays in utilizing and accessing the appropriate medical facility may result in neurological complications and sometimes death (Barbi, Marzuillo, Neri, Naviglio, & Krauss, 2017). Seeking a first level care from people such as nurses, paramedics, general practitioners, medical and clinical officers who take action to improve health of the individuals in the community and or seeking a secondary level care which includes hospitals at the district or community levels that provide 24 hour services and have well expertise staff to attend to the patients promptly, is very important in reducing the effect of febrile seizures in children (Mosadeghrad, 2014). In Ghana however, most health care facilities accept National Health Insurance but as to whether all caregivers or mothers are able to enrol their children on the insurance scheme in another cause of worry. Furthermore, the various health facilities must reduce the cost of care so as to enable mothers/ caregivers of low financial standing to seek health care in such facilities as well. Insufficient financial resources and poorly-resourced health facilities are believed to contribute to the delay in patronising a medical facility (Dillip, Alba, Mshana, Hetzel, Lengeler, Mayumana, … Obrist, 2012). Other factors in earlier studies indicated low status of women, cultural beliefs and practices, perception about the causes of illness also contribute to the delays of mothers or caregivers to access medical treatment for their ill 23 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children children (Sisay, Endalew, & Hadgu, 2015). For the very first time a child experiences a febrile seizure, the appropriate action was calling the paediatric emergency unit/ facility directly, or seeking advice from a healthcare guide service where the parents were told the actions to take (Westin & Levander, 2018), a study conducted in a developed country. In another study in Nigeria, lack of money as a result of low household income levels, was a key factor for not seeking healthcare irrespective of the severity of illness (Abdulraheem & Parakoyi, 2009). In the African society, a major determinant of choice of treatment is spiritual belief (Asare, 2017). 2.7 Summary and Conclusion The chapter reviewed literature relevant to the study. Justification of the model for this study was discussed. The second section of the chapter elaborated on the literature on caregiver recognition and response, seeking advice and negotiating access, using the middle layer between home and clinic and accessing formal biomedical services. The researcher set out to look out for studies relating to the beliefs and practices of mothers concerning the care of children with febrile seizures. However, there was paucity of literature in this area as most of the literature searched focused on the biomedical aspects of febrile seizures such as the incidence, diagnoses and management of febrile seizures. From the review, mothers were the first to recognize illnesses in their children. The practices they employed in dealing with the illnesses depended on their beliefs on the causes of the illness. The treatment options were also influenced by factors such as cost, proximity, and recommendation from friends and family. Due to the observed gap in the existing literature, the need arose for the current study. 24 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children CHAPTER THREE RESEARCH METHODOLOGY This section discusses the research methodology used in studying the beliefs and practices of mothers concerning the care of children with febrile seizures at the Princess Marie Louise Hospital, Accra. It includes the following: research design, research setting, target population, inclusion and exclusion criteria, sample size/ technique, data collection method, data collection procedure, data management, data analysis, methodological rigour and ethical considerations. 3.1 Research Design The design of any research deals with detailed explanation of the basic approaches adopted by the researcher to answer the research questions and the methods for data collection, (Polit & Beck, 2010). This study employed a qualitative research design, specifically descriptive exploratory design to ensure in-depth description of mothers’ beliefs and practices concerning the care of children with febrile seizures. The reason for the qualitative approach was to ensure a comprehensive and in-depth information from a small group of mothers (Lewis, 2015). A researcher makes meaning of information gathered from participants in a qualitative study (Sutton & Austin, 2015). It is only through qualitative inquiry that rich and deep insight could be obtained on the phenomenon being studied. Descriptive studies describe the various aspects of a phenomenon whilst exploratory studies are done to discover the full nature of a phenomenon when there is inadequate information in that area. This was to help provide a rich meaning, practices and various views of participants about seizures in children (Bradshaw, Atkinson, & Doody, 2017). The sample size, sampling technique, data collection and data analysis were based 25 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children on the study design (Suresh, Suresh, & Thomas, 2012). The research design chosen by the researcher helped described in a comprehensive manner, the beliefs and practices of mothers concerning the care of children with febrile seizures. 3.2 Research setting The study was conducted at the Princess Marie Louise Hospital, located in the Accra Metropolitan Assembly (AMA). 3.2.1 Study Location The AMA covers an area of 137sq km, located on longitude 05 35’ and latitude 00 06’. The metropolitan is bounded on the East by Dadekotopon Municipal Assembly, the South by the Gulf of Guinea, the West by Ga South and Central Municipal Assemblies, and the North by the Ga West and La-Nkwantanang Municipal Assembly. In the 2010 population and housing census, the AMA population was estimated at 1.7 million. Additionally, it is estimated that on daily basis there is an influx population of 1 million to the city for various socioeconomic activities. The AMA has almost 42% of the total population of the greater Accra Region with a population density for 112 per kilometre squared (Population and Housig Census, 2010). 3.2.2 Metropolitan Economy Accra, the capital of Ghana, has contributed immensely to the economic development of the nation. It hosts a number of manufacturing industries, health institutions, tourism sites, telecommunications industries, educational facilities and other important establishments. These establishments or institutions provide employment opportunities for the residents in the city. The presence of these institutions attract people from all parts of the country and beyond to transact various businesses. As a result, they 26 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children contribute greatly to internally generated revenue of the Metropolitan assembly in the form of business operating permit, property rates among others. 3.2.3 Health Care Facility There are two (2) government hospitals, six (6) polyclinics and ten (10) smaller health facilities which are under the Ghana Health Service that provide health care services in the Metropolitan area. Four (4) quasi-governmental and quite a number of private health care providers also offer clinical services. The services provided by these facilities include; in-patient and out-patient services, public health services such as child health services, reproductive health and nutrition, pharmacy, x-ray and laboratory services. The Princess Marie Louise Hospital where the study was conducted is located at the heart of the metropolis and serves as the children’s hospital for the Greater Accra Region. It receives both referral and non-referral cases within and outside Accra. It is the only Paediatric hospital of the Ghana Health Service. It is located within the Asiedu-Keteke sub- metropolitan assembly of the Greater Accra Region of Ghana. Founded in 1926, it is one of the few specialized children’s hospitals in West Africa and it was where kwashiorkor and marasmus were first described (Tette, Sifah, Nartey, Nuro-Ameyaw, Tete-Donkor & Biritwum, 2016). It provides medical care, offers reproductive and child health (RCH), family planning (FP) and nutrition services. The hospital has at present, about 265 staff in total. The framework of PML consists of 150-200 bed capacity for in-patient care. It also has an out-patient department (OPD), emergency ward, laboratory unit, blood bank, X-ray unit, diabetes and environmental health unit, mother’s hostel, disease control unit, family and reproductive and child health units among others. Within the last decade, attendance to the hospital’s out-patient department has increased from 45,000 in 1996 to nearly 73,000 per year. 27 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children The Emergency unit of PML is located on the ground floor of the Father Campbell’s block. It admits children from birth to 17 years of age with various childhood illnesses. It has a total bed capacity of 20 and receives both referred and un-referred cases. 3.3 Target Population In a study, the target population includes the entire or total set of individuals or units from which the sample size can be drawn or inferences made (Salkind, 2018). Therefore, the target population included all mothers who brought their children to the Emergency unit of P.M.L, at the time of the study. These were mothers whose children were diagnosed with febrile seizures and under age five (5). 3.3.1 Inclusion Criteria All mothers with children under five diagnosed with febrile seizures at the time of the study and who were willing to take part in the study. 3.3.2 Exclusion Criteria  Mothers whose children were not diagnosed with febrile seizures but under five years.  Children who were more than five years but diagnosed with febrile seizures.  Mothers who do not understand English language, “Ga”, “Ada” and “Twi”, because these were the only languages the researcher could speak. 3.4 Sample Size In a qualitative research, determination of a sample size depends basically on the information needed. Thus, sample size is the number of people to be included in a study (Bhalerao, & Kadam, 2010). Sampling on the other hand is the selection of a fraction from a total population. Working with samples is easier than using the entire population due to practical and economic advantages (Polit & Beck, 2010). Sample size is determined by the 28 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children research questions, the purpose of the study and saturation (Sim, Saunders, Waterfield, & Kingstone, 2018). Sampling ends when data saturation is met. Saturation is said to be reached when no new themes can be found in subsequent interviews (Fusch & Ness, 2013). In this study, the data saturation was reached at the twelfth (12th) interview. It included selection of mothers who had fair knowledge about the topic under study (Polit & Beck, 2010). Hence, the researcher selected mothers of children diagnosed with febrile seizures and on admission at the emergency unit of the Princess Marie Louise Hospital at the time of the study and were willing to partake in the study. 3.5 Sampling technique The purposive sampling method was employed in selecting Princess Marie Louise hospital because it is a facility where majority of children are treated for various ailments including febrile seizures. This method was appropriate for the study as the researcher required respondents who could provide the needed information for the study (Elo et al., 2014). The researcher purposively selected mothers who qualified for the inclusion criteria and consented to take part in the study. 3.6 Procedure for data collection A proposal was sent for review and approval was given by the Noguchi Memorial Institute for Medical Research - Institutional Review Board (NMIMR-IRB) (appendix C) and The Ghana Health Service Ethics Review Committee (GHS-ERC) (appendix D). A copy of the approval letter from (GHS-ERC) and an introductory letter from the School of Nursing and Midwifery, Legon, was sent to the Greater Accra Regional Health Directorate (GARHD) (appendix E) and The Metropolitan Health Directorate, Accra (MHD) (appendix F). A letter of introduction was given from the Metropolitan Health Directorate to the Medical Superintendent of the Princess Marie Louise Hospital (PML) (appendix G) where 29 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children the researcher was introduced to the Head of the Emergency Unit. Respondents were recruited during weekdays. Rapport was established by the researcher by asking the respondents about their general health. The mothers were reassured and all questions bothering their minds were answered accordingly. An information sheet was given to each respondent (appendix J) and thorough explanation was given on the objectives and the purpose of the study. Potential risks and benefits of the study were thoroughly explained to respondents in English, “Twi’ and “Ga” Languages (Ghanaian local languages). Respondents who met the inclusion criteria were made to sign a consent form (appendix I) after agreeing to partake in the study. Respondents were informed about their willingness to withdraw from the study at any point since participation was voluntary. The venue for the interviews were determined by the respondents as well as the time. Collection of data was done through face-to-face interviews which lasted between 35-60 minutes and were audio recorded. Clarifications were sought for accuracy of data collected. Confidentiality was ensured by informing respondents that the data gathered was mainly for academic purpose and would not be used for any other research. Respondents identities were protected by using codes. A field diary was kept during each interview to record observations made and non-verbal gestures from respondents. Respondents were thanked at the end of each interview. The interviews were conducted at the emergency room with two interviews done on the first day of admission and the rest on either the second or third days of admission. In all 12 mothers were interviewed. 3.7 Data Collection Tool A semi-structured interview guide (appendix H) was used to collect data. This enabled the respondents to comfortably talk about their beliefs and practices. The interview guide consisted of two main sections. Section A, consisted of socio-demographic data such as age of respondent, level of education, languages spoken, occupation, marital status, 30 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children number of children, religious affiliation, husband’s education, husband’s occupation, child’s age, sex of child, and birth order. Section B consisted of questions formulated from the research objectives and the Conceptual Model of Household Decision Making and the Pathways of Care (Colvin et al., 2013). 3.8 Pre-testing the interview guide The interview guide was pretested on two mothers with children diagnosed with febrile seizures at the Emergency unit of the Child Health Department of Korle-Bu Teaching Hospital, Accra, before the main study to ensure precision and clarity of the questions (Hurst, Arulogun, Owolabi, Akinyemi, Uvere, Warth, & Ovbiagele, 2015). Pretesting determines the strengths, weaknesses as well as possible threats of research questions and helps modifications of the instrument before it is used. The recorded interviews were transcribed verbatim and the research questions were modified ensuring clarity and precision before the main study. 3.9 Data management According to Surkis & Read (2015), data management must ensure that the process for data collection is well organized and should be transparent and understandable. It involves creating data, processing, analyzing, preserving data and giving access to the data. The purpose of qualitative data management is to organize and store data for maximal efficiency in retrieval and analysis (Guest, Namey, & Mitchell, 2010). Each respondent was assigned an identification code as “FSR” from 1-12 for easy identification and retrieval. The transcripts were saved and kept on the researcher’s computer with a secured password known to only the researcher. These records will be stored for five years after which they will be discarded. 31 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 3.10 Data Processing and Analysis What makes a study qualitative is that, it usually relies on inductive reasoning processes to interpret and structure the meanings that can be derived from data (Thorne, 2000). Interviews were conducted in English, “Twi” and “Ga” languages (local Ghanaian languages). The “Twi” and “Ga” interviews were translated into English during the transcription. An individual who was fluent in the “Ga” and “Twi” languages was asked to do a back translation of the transcripts. Each interview was coded from respondent one to the last. Verbatim transcription of the audio-recorded interviews was done. Data collection and analysis were done concurrently. Data analysis was done manually using thematic content analysis. The researcher familiarised herself with the data by reading the transcripts thoroughly. Similar ideas were put together to form codes. Similar codes were put together to form themes. The themes were reviewed and grouped into major themes and sub-themes. All the identified themes were named differently with their emerged sub-themes. Analysis of data was done using the interviews and field notes. 3.11 Methodological Rigour Rigour in qualitative research is the principles by which research is evaluated for validity and reliability. According to Tobin, Begley, & Tobin, (2004), rigour is the measure of trustworthiness of a research in terms of how data is collected, how data is analysed and finally how it is interpreted. Rigour is viewed in terms of transparent and systematic approaches for collection and analysis of data rather than statistical benchmarks for construct validity or significance testing (Marquart, 2017). A qualitative research must be authentic. The aim is mainly to gather an “authentic” understanding of people’s experiences and it is believed that the open-ended questions are the most effective ways of achieving this (Tobin et al., 2004). The criteria for ensuring rigour in this study included credibility, dependability, confirmability and transferability (Lincoln & Guba, 1985). 32 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Credibility ensures the findings of the research represent the original information given by the respondents and correct interpretation of the views of the respondents (Anney, Dar, & Salaam, 2014). It ensures the questions of the study are answered correctly as intended by the researcher through the conduct of the study and the design used. It entails how rich an information is rather than its quantity (Berger, Martin, Husereau, Worley, Allen, Yang, … Crown, 2014). Credibility was ensured by the researcher by recruiting respondents who met the inclusion criteria with the purpose of gathering accurate data. Feedback was obtained from respondents to ensure their exact views were captured. Interviews conducted were transcribed verbatim and the coding was done separately by the researcher and the supervisors and compared to ensure accurate data analysis. Respondents were engaged between 35 to 60 minutes during the interviews to obtain detailed data. Dependability involves ensuring the findings of a research are consistent and could be repeated using the same data collection tools (Anney et al., 2014). Dependability was ensured by the researcher by the consistent use of the interview guide to collect data from all the 12 respondents. Also, the researcher provided a comprehensive description of data collection procedure and data analyses, the research setting and the sampling methods. Inclusion and exclusion criteria, background of the study, length of interview were all outlined clearly. Documentation of information gathered during the data collection, the raw data and field notes are being kept by the researcher. Confirmability questions whether the findings of the research are consistent with the collected data. It ensures the findings of a research represent the views of the respondents and not that of the researcher (Tobin et al., 2004). Additionally, it helps establish whether or not the researcher has been biased in the course of the study. 33 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Confirmability was ensured by using probes to clarify information given by respondents. The researcher’s preconceptions were considered and bracketed to prevent altering the findings obtained from the study. An audit trail of raw data, field notes, notes from member checks were used to provide information needed for enhancing data analysis. Transferability refers to the extent to which the research findings can be generalised or transferred to other contexts or settings. It entails provision of sufficient information about the study to the readers to compare similar situations they are familiar with (Shenton, 2016). The researcher ensured transferability by outlining in detail the methods involved in conducting the study. An audit trail of the transcribed documents was also kept by the researcher. The background of respondents and their children, inclusion and exclusion criteria were clearly outlined. 3.12 Ethical considerations An ethical approval was sought from the Institutional Review Board of the Noguchi Memorial Institute for Medicinal Research (NMIMR) and the Ghana Health Service Ethical Committee (GHS-ERC). The approval letter from GHS-ERC, with an introductory letter from the School of Nursing and Midwifery, Legon, were sent to the Ghana Health Service Regional Health Directorate and forwarded to the Accra Metropolitan Health Directorate for approval. The approval letters and ethical clearance letter were sent to the Medical Director of Princess Marie Louise Hospital (PML) who gave the researcher permission to recruit respondents for data collection. A memorandum was written to the head of the emergency unit of PML to gain her cooperation. The respondents were recruited by first checking the admissions and discharges book for children diagnosed with febrile seizures and under five years. Their mothers were identified and the purpose of the study, objectives, potential benefits and the risks of the 34 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children study were explained to them. Respondents who met the inclusion criteria and agreed to partake in the study were allowed to sign a consent form. An information sheet was given to each respondent after explanation of the research to them. Also, respondents were informed that participation was voluntary, hence their refusal to take part in the study or withdraw from it was without any consequences. Identification codes were used for anonymity. Respondents’ privacy was ensured by conducting the interviews in a serene area provided by the nurse in-charge of the emergency room. A screen was used to prevent others from seeing or interfering with the interviews being conducted. Other respondents selected areas that were convenient to them. Additionally, audio recordings have been kept securely with a password known to only the researcher. Consent forms, transcribed documents and field notes have been kept under lock and key to prevent others from gaining access. 3.13 Summary This chapter has provided information on the research design, the study setting, target population, sample size, sampling technique, procedure for data collection as well as data collection tool, pretest, data management, data processing and analysis, methodological rigour and ethical considerations. The next chapter elaborates on the study findings. 35 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children CHAPTER FOUR PRESENTATION OF FINDINGS This chapter focuses on the presentation of findings of the study on the beliefs and practices of mothers concerning the care of children with febrile seizures at the Emergency Unit of the Princess Marie Louise Hospital, in the Greater Accra Region of Ghana. The findings are presented according to the objectives of the study and preceded by the demographic characteristics of the respondents. 4.1 Demographic Characteristics of Respondents The study comprised Key Informant Interview of twelve (12) respondents. Among those interviewed, the majority completed their primary education with only two completing tertiary education. Only one respondent had no education. Eight respondents were married and four were single. Most of them were in the age ranges of thirty-two to thirty-seven (32-37) years with only two below thirty (30) years. Dominant languages spoken were; “Twi”, “Ga” and English. Two respondents were Muslims and the rest were Christians. The maximum number of children per mother was five with a minimum of one. The age range of their children was between 4 months to 4 years. Two of the children were males and the rest were females. 4.2 Organization of Themes and Sub-Themes Eight major themes and twenty sub-themes were identified following data analysis. Identification of signs and symptoms, causes and beliefs, home remedies, consultation of Significant Others, seeking care in the community and health care facility were themes found to be consistent with The Household Decision Making Model whilst the last two themes, namely mothers’ reaction and ignorance emerged from the data. Table 4.2 shows the themes and sub-themes from the data. 36 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Table 4.1: Organization of Themes and Sub-themes MAJOR THEMES SUB-THEMES Identification of Signs and Symptoms of  Fever febrile seizure  Change in eye/ body movement  Clenching of teeth Causes and Beliefs  Physical  Spiritual  Others (marital conflict) Home Remedies  Medications (antipyretics, antibiotics, garlic)  Prayers/ positioning  Water/ oil Consultation of Significant Others  Family (husbands, In-laws, mothers, brothers, sisters)  Neighbours/ friends Seeking Care in the Community  Religious leaders (pastors, fetish priestess, traditional healers)  Health professionals (doctors, nurses, pharmacists) Health Care Facility  Emergency  Attitude of staff  Others (recommendation, proximity, expert care) Mothers’ Reaction  Anxiety  Devastation (crying, confusion) Ignorance  Condition (febrile seizures)  Management of Febrile Seizures (at home and hospital) 4.3 Identification of Signs and Symptoms of Febrile Seizures One of the major themes that emerged was identification of signs and symptoms of febrile seizures which corresponded with the Recognition part of the Household Decision Making Model. This theme sought to answer the question; ‘what are the beliefs of mothers with children who have febrile seizures and how do they recognize the condition?’ Signs and symptoms are any change in the normal functioning of the human body which is an 37 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children indication of a potential medical condition. Three sub-themes emerged. They were: fever, change in body/ eye movement and clenching of teeth. 4.3.1 Fever Fever is a body temperature above the normal range, mostly above 38℃. The normal body temperature for children ranges between 36.5℃ - 37.5℃. One mother used a thermometer to check the temperature of her child at home. She said this; “I have a thermometer at home. Sometimes when we check is 37.5℃ sometimes 38℃…...” FSR1 Other mothers did not use a thermometer at home to check their children’s temperatures but they did so by feeling/ touching to recognize the rise in body temperature of their children which deviated from the normal. Some of the mothers expressed the following: “I know she was warm to touch………” FSR2 “I realised he was warm, so during the night the temperature got high but I didn’t check with a thermometer but like his body temperature was warmer than before……….” FSR7 “Mostly she has a normal temperature but yesterday she started passing loose stools and had a fever……….” FSR11 “She was very warm to touch, I did that by touching her with my hands to feel the temperature, ………………...” FSR12 4.3.2 Change in eye movement One of the signs of seizure is the abnormal eye movement which includes gazing into the air, staring in one direction and rolling of the eyes. FSR2, FSR4, FSR10 and FSR11 had these to say; “something happened to her and it was as if all her eyes were white…….” FSR2 “All of a sudden as if she has changed. The face has turned to one side with the white part of the eye gazing in one direction…………” FSR4 38 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children “When it happens, she is not stiff nor shaky, only the eyes become static gazing at one direction…………….” FSR11 “The black part of the eye was static, it never rolled to left nor right…………….” FSR10 4.3.3. Change in body movement Some of the children became so stiff during the seizure episode that they had to be carried by men to the hospital. Their mothers said: “Eiii, anytime it happens a lady cannot carry her, she becomes so stiff. He carried her on his shoulder………...” FSR10 “She became very stiff with both arms straight. She was carried by a man on his shoulder to the hospital………” FSR12 “I learnt when it so happens and the child becomes jerky, a man will carry the child and send him/her to the hospital…...” FSR4 4.3.4 Clenching of teeth Some of the mothers reported clenching of teeth as a sign of seizure. Some of the respondents had these to say: “The teeth were clenched together and saliva was coming from the mouth……...” FSR10 “She clenched the teeth………………………………………………………………...” FSR3 “She clenches the teeth together anytime the seizure occurs ………………...…….” FSR12 4.4 Causes and Beliefs Mothers attributed the cause of seizures to physical causes such as; fever, phlegm and stomach ulcer. Others attributed the cause to spiritual forces such as witchcraft, spiritual attack and consequences of un-performed rituals. One mother also attributed the cause to marital conflict. 39 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 4.4.1 Physical The majority of the respondents attributed the cause of the seizure to phlegm because of what they have heard from others during or before the episode of the seizures. A few number of the mothers said the cause could be due to fever or malaria, whilst others were of the view that it could be due to stomach ulcer. 4.4.1.1 Phlegm Some of the participants believed that their children’s condition was as a result of phlegm. This is what they disclosed: “Hmmm, almost everybody claim it is caused by phlegm. They said phlegm brings about that condition…….” FSR2 “Since they started the medications I see a lot of phlegm in her stools. So I was also thinking it could be that there is too much phlegm in her which caused the seizure…...” FSR9 “Others also say it is phlegm as a result of the stomach ulcer. That is what the elderly people say…………………………” FSR10 4.4.1.2 Fever/ malaria Some of the mothers said the seizure was triggered by fever. They said: “Yes, sometimes the seizure comes with temperature. When the body is very hot it triggers the seizure………” FSR1 “my mother said if you have a high body temperature it brings about that………….” FSR2 “the day she had the high temperature and I noticed she was convulsing. I learnt if a child has a high body temperature, it brings about convulsion. I think it was the high temperature.…….” FSR8 One mother said the cause of seizure could be malaria. “May be it is malaria, I conceived that idea when she started convulsing because there are a lot of mosquitoes in my area…….” FSR3 40 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 4.4.1.3 Stomach ulcer One respondent disclosed that, the cause of the seizure was due to stomach ulcer. This she said, is obvious at the anal region when a close examination is carried on the child. “it is caused by an ulcer in the stomach which sometimes appears in the anal region…...” FSR10 4.4.2 Spiritual Some of the respondents also said the seizures were caused by either evil spirits, spiritual attack or wizardry. The causes were mainly associated to spiritual forces. 4.4.2.1 Spiritual attack One mother has this to say about her belief on the cause of seizure: “This is not in my lineage, nobody has it in my family and my husband too nobody has it. So when first of all I said sometimes it may be a challenge through the ministry or attack, like spiritual attack. May be it may come from the attacks just as I said, other attack or spiritual thing as a church mother you may face it either from the members or from the church or from outside the family…….” FSR1 4.4.2.2 Evil spirit/ witchcraft Some respondents said evil spirits were responsible for the seizures and that the application of garlic casts out the evil spirits. FSR12 confessed this: “I have mixed garlic with shea butter which I normally apply as pomade for my child. I learnt it casts out evil spirits believed to be responsible for the convulsion…….” FSR12 One respondent was told the seizure is not ‘a hospital sickness’. She had this to say: “That was Tuesday, Monday it happened continuously till in the evening so I told my husband let’s send the child to the hospital, but my mother in-law said it’s not a ‘hospital sickness’………” FSR2 FSR2 wanted to confirm the cause of sickness since the mother in-law said it was not a hospital sickness. She went to a fetish priestess who told her that the child was be- witched. Here is what she said: 41 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children “I went to the fetish priestess and she examined my child but she said somebody has be-witched my child. She said the person be-witched her when I was pregnant and that the person wanted to bewitch me and because the person couldn’t get me that’s why it affected the child…….” FSR2 4.4.2.3 Consequences of unperformed birth rituals FSR 11 believed that, the seizure which occurred more than once could be attributed to unperformed birth rituals that needed to be performed for the older children. And as a result, the younger child is facing the consequences. “I learnt this condition is not treated in the hospital. You know the father is a Ga, and they have a tradition that when you deliver twins they have to go through a ritual but that has not been done for my twins. That is how it works. The consequences will affect the next child, unless it’s reversed by performing the rituals. So the elders in the family are saying that is what is affecting my child ………” FSR11 4.4.2.4 Others One mother attributed the cause of the seizure to marital conflict between her and the husband. This is how she puts it: “I was wondering what happened and I was trying to link it to you know, my husband is not here and is a lot of problems. The marriage has not been smooth, a lot of problems, crying on my side worrying so ‘emm’ when he came a lot has happened so I felt what went through my mind was I thought the child felt what was going on. Yes, for that reason, usually that’s what our elder people would say that children don’t like where there is quarrel. The convulsion made me think that it is as a result of the quarrels, misunderstandings and the whole lot of issues that are going on in my marriage that has resulted in this. Because it has not happened to us before……...” FSR7 4.5 Home Remedies Home remedies cover the interventions given at home or the actions taken to abort the seizure or to reduce high body temperature. This theme tried to answer the question; ‘What practices do mothers of children with febrile seizures undertake before bringing their children to the hospital?’ Mothers used medications such as anti-pyretic, antibiotics and garlic. Others used water, oil, positioning, and prayer to abort the seizures. 42 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 4.5.1 Medications Anti-pyretic was given by these mothers: “Sometimes too if she is having temperature we inject the para on the buttocks (insert the paracetamol into the anus) …………” FSR1 “When I realised she was warm to touch; I gave her paracetamol………” FSR12 “When we woke up I saw she was warm and I gave her paracetamol……” FSR10 “I realised he was warm, so during the night the temperature got high but I didn’t check but like his body temperature was warmer than before. So errm, I gave him suppository paracetamol, I inserted one……………” FSR7 Some mothers gave teething mixture to reduce the fever believed to be caused by eruption of new teeth. “The dad woke her from sleep and noticed her head was quite warm to touch but I said it could be because she slept with that side of the head, so I didn’t take it serious. But the following morning the temperature was still persisting, though not too high. So I went to my mother in-law to ask for ‘Teedar’ (teething syrup). Sometimes she has a temperature when a tooth erupts but I normally give ‘Teedar’ syrup for that and she is fine …………...” FSR9 Others gave garlic to abort the seizures. These were what they said: “The first time she had a seizure I applied some garlic and gave her some to drink. I learnt it will abort the seizure…………………………………………………...…” FSR3 “The garlic helps that kind of sickness……...” FSR10 “Okay, I remember some time ago I went to visit my mother at Kwawu, yes and my child had a seizure. They grinded garlic, smeared some on her body and inserted some into her nostrils then she cried. Most at times when the seizure occurs, she does not cry but this one she cried. In some few minutes, the seizure aborted……………” FSR4 Two mothers gave antibiotics to treat the fever. They said: “I initially thought it could be an abdominal infection so I gave her ‘flagyl’ (metronidazole)………………” FSR8 “She has been having fever for the past two weeks. I bought an antibiotic from a pharmacy nearby……………….” FSR4 43 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 4.5.2 Water/ oil Water was believed to reduce high body temperatures, prevent seizure occurrence or abort seizure and most mothers either bathed their children with water, or wet a towel to tepid sponge them. Others used oil to abort the seizure. “If that kind of thing happens, you use the oil and spoon and drop it in the mouth of the child, the red oil……” FSR1 “I had an anointing oil and water which I got from a prayer meeting, so whilst my mother in-law turned the child’s head upside down, I was also pouring the anointing oil and the water over her at the same time………” FSR9 “She had a high body temperature, so I tepid sponged her……...” FSR5 “You know children today is about temperature, temperature, and I try to manage it sometimes. I sponge him a lot……….” FSR7 “As for the water no body taught me but I poured it over her because I know she was warm to touch and my mother said if you have a high body temperature it brings about that. So I poured the water on her to reduce the temperature. So it became normal…………” FSR2 “She came around and confirmed it was a seizure. So she advised I poured water over my child, so I bought pure water and began to pour it all over her……………” FSR8 4.5.3 Positioning Putting a convulsive child in a particular position was believed to help abort the seizure or make the child gain consciousness. A few of them said: “Whilst the feet are raised up, the child is being rushed to the hospital. With the two feet up and the head downwards……….” FSR2 “When it so happens, a man will carry the child and send him/her to the hospital. He turns the head upside down with the feet up. Errr, the convulsion could abort; it does abort in that position………” FSR4 4.5.4 Prayer There is spiritual involvement in treating ailments in the African society. Some respondents said they prayed that God will heal their children from the seizure. Others consulted people who prayed for the children FSR1, FSR2, FSR6 and FSR8 had these to say: 44 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children “There is nothing much, what I am just praying that God should heal her permanently……...” FSR1 “…. I started praying for him, carrying him in my arms that God will intervene………” FSR6 “…. So when she came she carried my child and prayed for her for a long time and she became quite stable………………” FSR2 “So she put her hand on my child and began to pray for her whilst I also got the water to pour over her…………………………...” FSR8 4.6 Consultation of Significant Others This theme answers the question; ‘What are the decision making practices of families who have children with febrile seizures?’ This was consistent with the second construct of the Household Decision Making Model, seeking care and negotiating access. It involves seeking advice from key decision makers in the family such as husbands and in-laws or seeking for support or help from neighbours, friends and other family members. 4.6.1 Family Family members the mothers consulted included husbands, in-laws, mothers, sisters and brothers. They gave advice on what remedies to give to the convulsive children as well as where to seek medical care. 4.6.1.1 Husbands Husbands are the heads of the family in most cultures and hence they are the key decision makers at home. The majority of the mothers said their husbands are the key decision makers at home so they consulted them when their children had seizures. “When it happened I called my husband and told him. I was there when he came home…...” FSR2 “My husband takes the decision at home. He advised we bring our child to the hospital ………” FSR1 “We were all at home, in the room, she was about to wake up from sleep when it happened. The dad went out. But I called him……………...” FSR10 “When the seizure occurred my husband was not around, he went somewhere. But I called to inform him………” FSR5 45 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 4.6.1.2 In-laws When the fathers are not at home to give the consent for further treatment, or decide where to send the child, the in-laws are informed. Here are some of what the respondents said: “In case my husband is not around, I plan with my sister-in-law…….” FSR10 “Oooh after the initial management, my mother in-law advised we bring the child to the hospital, you know she is an experienced woman and quite old so she might have her reasons for asking us to come to the hospital………” FSR9 “I informed my mum and my sister in-law. They said it was convulsion so my sister in-law accompanied me to the hospital……….” FSR12 Other family members who gave support and advice to the mothers with convulsive children were mothers, sisters or brothers. “My younger brother advised we go back to the pharmacist who first gave the teething mixture to see her husband who is a medical doctor…….” FSR6 “The first time it happened my sister said it was a convulsion, so she accompanied me to the hospital for treatment…….” FSR10 “My mum advised we bring my child to the hospital…….” FSR5 4.6.1.3 Neighbours/ Friends Some mothers sought help from their friends and neighbours. “My landlady gave me garlic to smear over my child’s body so she feels better, she can be free a bit………” FSR2 “It was my friends in the market who are also mothers and have witnessed it before, they advised I tepid sponge her and send her to the clinic……” FSR3 “I called the food vendor who is my friend to come and see what was happening to my child, it looks like a convulsion. She came around and confirmed it was a convulsion. So she advised I poured water over my child, so I bought sachet water and began to pour it all over her. She immediately called a motor bike rider to bring my child to children’s hospital, so I quickly followed them to the hospital………” FSR8 “In the house we live like a family, the first episode happened at dawn whilst all were asleep. So I poured water over him and went to inform my next door neighbour about it…….” FSR6 46 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 4.7 Seeking care in the community This theme corresponds with the third construct of the Household Decision Making Model, ‘using the middle layer between home and clinic’. The majority of the mothers sought care from health care professionals and religious leaders in the community before finally going to the hospital. They included religious leaders, traditional healers and health professionals. 4.7.1 Religious leaders They included a pastor/ fetish priestess, and a traditional healer/ herbalist. The Pastor prayed for the convulsive children, whilst the traditional healer/ herbalist gave herbal preparations or inflicted cuts on the children and applied medications to cast out the evil spirits believed to cause the seizures. The Fetish priestess also did incantation to identify the cause of the seizures. 4.7.1.1 Pastor/ Fetish Priestess FSR2 sought help from a Fetish Priestess and a Pastor. She said: “So I told my landlady that where things are getting to, I will not sit idle but will go and enquire of what is happening to my child from the fetish priestess, I want to know what exactly is wrong with my child. So we went to the Fetish Priestess and she examined my child………” FSR2 “Within few seconds the seizure occurred again. At that time, I was awake and had my bath with my bag ready, my husband said I should send her to our pastor……...” FSR2 4.7.1.2 Traditional healer/ herbalist Some of the mothers as well as members of the community sought the services of the Traditional healers before reporting to the hospital when the condition persisted. Their children were given herbal preparations or cuts were inflicted on the children and medicines were applied into the wounds. These were what some of the mothers said: 47 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children “Well I tried herbal medication, I explain to the herbalist what happened to my child then she gives me medicine according to what I tell her………...” FSR11 “The child was sent to a herbalist who inflicted several cuts to cast out the convulsion…….” FSR9 Another mother confirmed that cuts were inflicted on a convulsive child in her family. She puts it this way; “The herbalist inflicted some cuts on the boy and put medicine over the wound……………...” FSR11 4.7.2 Health professionals Health professionals consulted by the mothers were doctors, nurses and pharmacists. They eithers gave medications, referral or first aid to the convulsive children in the community before they were brought to the hospital. 4.7.2.1 Doctor/ Nurse FSR6 consulted a doctor who advised her to send the child to the nearest hospital. She said: “I went to see a medical doctor…. and I explained how my child was behaving and he advised I send my child to a clinic he suggested………” FSR6 FSR4 consulted a nurse. “My land lady has a daughter who is a nurse. So for a nurse, she knows how to handle convulsive patient so she tried, stimulated the child but there was no response before we brought her here……” FSR4 4.7.2.2 Pharmacist Some of the mothers reported going to buy medications from the pharmacy or explaining the condition to the pharmacist for medications. “I went to the pharmacist to complain my child has a fever and because the actual cause of the fever couldn’t be determined, an antibiotic was given. The pharmacist said if there is anything causing the fever, the antibiotic will clear it……………………...” FSR4 “I went to a nearby pharmacy to present the complain to the pharmacist and he was given teething mixture………………………” FSR6 48 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children One mother would have sought the services of a pharmacist, but there was none in the community. This was what she said: “But for my mum she advised that since there was no pharmacy around, I should bring her to the hospital because this is even beyond a pharmacist………………...” FSR5 4.8 Healthcare Facility In the quest to answer the fifth question; ‘What factors influence mothers’ decision to bring their children to the hospital?’ Healthcare facility emerged as one of the themes which was consistent with the last construct of the model (accessing formal biomedical services). three sub themes emerged. There were; emergency, attitude of staff ad others such as recommendation from friends, proximity and expert care. 4.8.1 Emergency Mothers sent their children to the hospital because it was an emergency situation. Others were referred by a doctor from their first clinic for advanced care. “So they hurriedly went to get some medicine to inject her. So after the doctor attended to her, he said we should bring her to Children’s emergency. So, an ambulance conveyed us to the children’s unit…….” FSR2 “She was static at the market. I rushed her to the nearby clinic and was referred to Children’s hospital………...” FSR3 “As we got there and was preparing the folder, the seizure occurred again but they could not access his veins to administer intravenous medications. We spent the night there without any progress so we were given a referral letter to PML………...” FSR6 “And then my husband got up and carried him “gidigidi” (hurriedly) ran with him into the emergency….” FSR7 4.8.2 Attitude of staff Respondent FSR2, said she refused accessing medical care in a closer facility due to the attitude of the staff there. Here is what she said: “….. the health workers there are not matured enough and they have no patience to attend to their clients. So those things discouraged me………” FSR2 49 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children One mother went to a first facility before referral was given to the Children’s hospital and this was her observation; “To me, I will say in the first hospital, their treatment is not good, the way they maltreat the strangers they don’t have patience for the person. When they see strangers they retaliate (react) so fast by shouting this and that without having patience ……...” FSR1 4.8.3 Others Some of the mothers said they decided on the facility of choice following the recommendations from friends. Others considered the proximity of the facility to their homes whilst others chose the facility because their children needed expert care. 4.8.3.1 Recommendation from others A few mothers sent their children to the hospital of choice based on the recommendations from others. “my friends advised we send her to the nearby clinic…….” FSR3 “A friend of mine advised we bring my child to Children's hospital because they give quality care……” FSR4 4.8.3.2 Proximity The distance of the health facility from one’s home also played a part in the decision to take a child for biomedical service. “I went to a nearby Polyclinic because I stay at ‘Mataheko’ (a suburb of Accra) and that polyclinic is closer to where I stay…...” FSR5 “The choice of the first hospital I went was due to the fact that the hospital was closer to my house than where I would have preferred sending him during the early hours of the day……” FSR6 “I first sent her there because that was the nearest polyclinic……” FSR10 4.8.3.3 Prompt/ expert care Some of the respondents said the care rendered by the health workers in the hospital of choice was rapid, thus their children were attended to without unnecessary delay. For 50 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children others, they were referred to PML because the first point of call had no specialized team to give the appropriate management. “Anytime we bring her here, their emergency response is very good. And they give prompt care. For me I only bring my child to the hospital anytime it happens. The health workers can determine the actual cause. As for the elderly they just speculate, because our forefathers were not privileged to have hospital as we do these days. So they resorted to herbal medications…...” FSR 10 “We were told to bring her to Children’s hospital without any delay, I think it was beyond their management. That’s how I see it…….” FSR3 “…… because that was the first hospital she was diagnosed with seizures, althoug h we were referred to another hospital, I decided to come to PML. There w as no specialist there who could give my child the appropriate treatment………… .” FSR4 “Their treatment is very good. I couldn’t have managed it better at home, they hav e the knowledge on how to manage these children…...” FSR11 “I went to a polyclinic but was told the child was too young to be treated there, as such there was no space for nursing babies. I even prepared a folder there to be seen but when I got to the attending physician, he gave me a referral here………” FSR5 4.9 Mothers’ Reaction A new theme that emerged from the study is mother’s reaction. This talks about the emotions of mothers when faced with the challenge of seizures especially for those seeing it for the first time in their lives. Sub-themes emerged and they are as follows; anxiety and devastation. 4.9.1 Anxiety “When I saw her after the first episode in fact, when I thought of the whole thing I asked how come this kind of thing happened to my child?........” FSR2 Others mothers said seeing the condition put fear in them. “Errrmmm… Actually when the thing comes it puts fear in me. That fear means because I have not experience this kind of thing before and for me seeing it is like a burden …... so it gives me concern of having that kind of thing why it should happen to me.” FSR1 51 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children “As a mother I was afraid because this is the first time in my life I have ever experience such a thing. I almost fainted when I first brought my child to the hospital and saw the way he was suffering…” FSR6 4.9.2 Devastation “I was overwhelmed because that was my first time of seeing such a condition. As it is with everything one sees for the first time, is it not true?.............” FSR10 “I want to say truthfully that, before we got here things were very bad, I didn’t know what was going on…….” FSR5 “I am interested in knowing what is going on with my child but the doctors know what is wrong with my child. I am overwhelmed so I couldn’t ask…………...” FSR12 4.9.3 Crying “I am very happy about the way things are going here because I came weeping…….” FSR6 “So finally before we got here it has stopped but I wasn’t still comfortable, I started crying asking is my son okay?..........” FSR7 “In fact, I started crying because I panicked. The dad panicked as well but he gathered courage to pull the child from my hands and ordered I bring the oil and the water……………...” FSR9 4.9.4 Confusion “It never occurred to me to send my child back to where I delivered her for treatment. I was confused by then……….” FSR5 4.10 Ignorance This is the second theme that emerged from the study which was not in the model. Some of the respondents had no idea about the cause of seizure as well as management of seizure either at home or in the hospital. 4.10.1 Condition (febrile seizures) Some mothers could not identify the condition as seizure. These were their responses: “I did not know what was happening to her. So we brought her to the hospital for 52 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children care the first time it occurred. I never thought such a thing will happen again because we don’t know what is happening, so we always bring her to the hospital anytime it occurs and we were told what to do. I thought it was just a mere sickness. Little did I know it was going to recur……” FSR4 “When it occurred, I did not know what was happening to him, I thought he was just sick…….” FSR6 “I kept asking what could be wrong with my child since I don’t know how seizure happens. I asked my granny too but I was not given any strong confirmation…… .” FSR11 4.10.2 Management of febrile seizures Some mothers were ignorant about the management of seizures at home and also had no idea what goes on in the hospital setting as a few of them could not mention the medications given or the laboratory investigations carried out on their children. “I don’t know the medications she is being given here, not at all. Whatever will make my baby well is what I want………” FSR5 “Oh no I didn’t know, I don’t have idea about home management. All I know is they will put spoon in the mouth……” FSR7 4.11 Summary of findings This chapter analysed 12 interviews conducted among mothers of children with febrile seizures receiving treatment at the Princess Marie Louise Hospital, Accra. Eight major themes emerged from the study which included identification of signs and symptoms of febrile seizures, causes and beliefs, home remedies, consultation of Significant Others, seeking care in the community, health care facility, mothers’ reaction and ignorance. The first six themes were consistent with the Household Decision Making Model adopted from Colvin et al., 2013 which was used to organized the study. The last two themes, mothers’ reaction and ignorance emerged as new themes from the study. In all, twenty sub-themes emerged. Mothers recognized and responded to seizures in various ways in relation to the signs and symptoms, causes and beliefs and home remedies. It was realized that, mothers 53 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children believed the seizures were caused by physical, spiritual and other means and their responses and choices of treatment given depended solely on their beliefs about the cause of seizures. Seeking advice and negotiating access (consultation of significant others) was explored using the following sub-themes: husbands, In-laws, neighbours/ friends and family (mother, sister, brother). From the analysis, it was realized that mothers consulted their husbands or in-laws before seeking biomedical services. The husbands are the key decision makers in the house and in their absence, the In-laws can take the decisions. However, neighbours/ friends and other family members gave support or advice to the mothers in one way or the other during the seizure episodes of their children. It was observed that mothers consulted specialists or professionals in the community before seeking biomedical services in the various hospitals/ clinics. They included: Pastor/ Fetish Priestess, Traditional healer/ Herbalist and Doctor/ Nurse who gave assistance in the form of prayers, medications, spiritual interventions as well as physical interventions. Mothers brought their children to the hospital after the interventions in the community had failed or yielded no positive results. Accessing formal biomedical services (healthcare facility) was examined under the following sub-themes; emergency, attitude of staff and others such as recommendation from friends, proximity and prompt expert care. Medical attention was sought by mothers of children with febrile seizures because it was an emergency situation. Others go to facilities for care following the recommendation from friends or due to the proximity of the facility from their homes. Other factors they considered before visiting the health facility was the attitude of the staff and their ability to give prompt care. 54 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Mother’s reaction and ignorance were the new themes that emerged from the study. Some mothers were anxious, devastated, confused, cried and panicked because the seizures were their first experience. Other mothers could not identify the cause of seizure and its management either at home or in the hospital. 55 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children CHAPTER FIVE DISCUSSION OF FINDINGS This chapter discusses the findings of the study in relation to studies conducted previously on the same subject matter. The background characteristics of respondents precede the discussion of the themes and sub-themes which will be discussed in line with the objectives of the study and based on the conceptual framework. 5.1 Demographic Characteristics of Respondents A total of 12 mothers whose children were diagnosed with febrile seizures were interviewed. The ages of their children ranged between four (4) days to 4 years. Out of the twelve children, ten (10) were within one to four (1- 4) years, one was 8 months old, one was five (5) months old and the lowest age was four (4) days old. These findings agree with the research conducted on febrile seizures and febrile seizure syndrome which reported that, febrile seizure or febrile convulsion is an event in childhood or infancy which usually occurs between age six months and five years (Khair & Elmagrabi, 2015). From the study, the median age was 2 years and it affirms a review by Kimia, Bachur, Torres, and Harper, (2015) on febrile seizures emergency medicine perspective which indicated that febrile seizure occurs in 2-5% of children during their first five years of life but most commonly during their second year. Findings from the current study also revealed that a 4-day old child and a 4 months old child were diagnosed with febrile seizures. Again, from the current study, majority of the study children were females (10 out of 12). The results from a study by Kumar and Mohanty (2011), showed that willingness to access a biomedical service is associated with the mother’s educational level and socioeconomic status. In terms of the educational level of the mothers influencing their decision to seek prompt care or biomedical services, similar findings emerged from the 56 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children current study. Those with tertiary education sought care without delay whilst those with either no educational background, primary or secondary educational level resorted to one or two home remedies first before going to the hospital after the first intervention failed. However, the socioeconomic status of mothers was not studied in this current study. 5.2 Caregiver Recognition and Response Mothers are the first people in the family to recognize an illness in children because they are mostly with their mothers. The ability to identify an illness leads to various responses depending on the beliefs about the cause of illness. Such responses included use of home remedies, seeking support or advice from family and friends, seeking care from traditional healers or other professionals in the community or sending the child to a medical health facility. 5.2.1 Beliefs of mothers about febrile seizures From the study, respondents reported that fever was found to be the trigger factor of a febrile seizure. This finding is supported by that of Seinfeld and Shinnar (2017), who reported that febrile seizure is believed to occur either before or soon after fever onset. In another study, fever was seen to lead to possible complications such as febrile seizure or brain injury (Hussein et al., 2016). All the mothers testified to some degree of change in body temperature of their children which was higher than the normal. The children’s temperatures were taken by either checking the temperature with a thermometer or feeling the child’s body by touch. This finding is also in line with that of a study on the accuracy of touch and perception for detecting fever, a study conducted in a tertiary and rural hospital in India. It was found out that, mothers’ reportedly measure temperature by feeling, or palpating parts of the body and the use of various thermometers (Singh et al., 2003). 57 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children However, the study by Singh and friends (2003), recommended that fever can accurately be detected by the use of a thermometer. Other signs associated with febrile seizures identified by mothers from the current study were clenching of teeth, body stiffness and rolling of eyes/ change in eye movement. This finding is supported by a study on the management of febrile convulsion in children where the signs and symptoms of febrile seizures were identified to include jerking or twitching of legs and arms, loss of consciousness, rolling of eyes, as well as foaming at the mouth (Paul, Rogers, Wilkinson & Paul, 2015). Additionally, the recognition of febrile seizures included identifying the cause. From the study, causes of febrile seizures were reported by the mothers as being associated with physical, spiritual and other causes. In another study, it was found out that mothers whose children had ever suffered febrile seizures even though, had acceptable facts regarding the causes, symptoms and signs of febrile seizures, there was negative beliefs persisting amongst mothers relating the cause of febrile seizures in children to mystic forces (Nyaledzigbor et al., 2016). Findings from the current study indicated that, mothers believe seizures are caused by witchcraft, evil spirits or as a result of spiritual attacks. The beliefs of the mothers about the causes of seizures influenced their choice of treatment. These findings agree with the findings of a study conducted by Asare, (2017), which showed that there is spiritual involvement in healthcare in Ghana. This belief appears to be in existence since the days of Jesus Christ, where a man cried out to Jesus to heal his only son whom he claimed a “spirit seizes him and convulses him” (Luke 9: 38-39, NKV). Phlegm was another physical cause of seizures according to the mothers in this study. 5.2.2 Practices of mothers in response to febrile seizures Responses mothers gave or employed in dealing with seizures included giving medications such as antipyretics, antibiotics and the use of garlic. The antipyretic 58 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children medications given were paracetamol and teething mixture (‘teedar’). This finding is consistent with findings from a research conducted in Sub-Saharan Africa by Chibwana et al., (2009) on febrile illness in children under five, which indicated that some parents used antipyretics such as paracetamol and ibuprofen to reduce fever in their children especially, during teething when their body temperatures became very high. In the first 24 hours of fever, “antipyretics were given as first aid for fever and were viewed as effective treatment. Another research finding however, disagrees with this finding noting that; “antipyretics are ineffective in preventing febrile seizures” ( El-Radhi et al., 2009). Herbal medications were also found to be part of the home remedies used by mothers to abort seizures. A similar study conducted in the Volta Region of Ghana, Ho, reported the use of herbs to abort seizures (Nyaledzigbor, Adatara, Kuug, & Abotsi, 2016). The most common herb used in this study was garlic which was smeared over the children’s body or mashed and given to the children to drink. This practice could lead to aspiration since the children were forced to drink the garlic solution in the convulsive state. Some mothers claimed the smell of the garlic casts out evil spirits believed to cause seizures in children. Again, some mothers used positioning to abort the seizures. They held the children’s legs up and their heads downward and shook the children to make them conscious. This positioning was believed to abort the seizures. This finding is in consonance with the findings of another study conducted by Westin and Levander (2018). Mothers in that study stated that they shook their children having seizures in order to receive a reaction from the children and others would percuss the children’s back with the belief that they were choking. Furthermore, water was another home remedy used by the mothers for dealing with fever and seizures. Mothers either tepid sponged their children to reduce high body temperatures or poured water over the children to abort the seizures. This finding is in 59 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children consonance with the findings of a study by Aluka et al.,( 2013) conducted in South Nigeria. Here, mothers used cold water sponging and paracetamol to control fever among children. Additionally, oil was also used as a home remedy. In such instances, either red oil is given to the child to drink or anointing oil is used to brush the face of the child and poured over the child’s body to abort the seizures. Giving anything by mouth to children during a seizure episode can lead to aspiration and subsequent death of a child. It is a dangerous practice and it is imperative for health professionals to educate the public against such practices. From the current study, the findings also indicated that, some mothers put spoons or their fingers in the mouth of their children during the seizure episodes when the teeth are clenched together to prevent them from biting their tongues. One mother recall her ordeal adding that she will never forget that day she put her finger in the child’s mouth as she was bitten severely. This was also observed by Eseigbe, Eseigbe and Adama (2012) in a study conducted on febrile seizures in North Western Nigeria. Mothers in that study, thrusted objects such as spoons or fingers in the mouths of their children during seizures. Prayer was also an intervention used at home to abort the seizures. Spirituality constitutes a common feature in most African cultures, including Ghana. Since spirituality is part of the day to day living of an African and most Ghanaians, religiosity plays a vital role in sickness (Asare 2017). 5.3 Seeking Advice and Negotiating Access This theme focused on mothers seeking help or advice from family members such as husbands, in-laws, siblings and neighbours/ friends. The aim was to ensure they received guidance or permission from the key decision makers at home on where to send their sick children for treatment. Respondents reported consulting or informing their husbands or mother in-laws about their children who had seizure episodes. The decision to inform their 60 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children husbands or the mothers-in-law was found in similar studies where mothers had the social obligation to inform their in-laws to decide on the actions to be taken in response to an illness. Deciding on the actions to be taken during an illness is not the sole responsibility of a mother in the African society (Nsungwa-Sabiiti, Källander, Nsabagasani, Namusisi, Pariyo, Johansson, … Peterson, 2004). Mothers have to seek advice from their husbands or the head of the family who is most of the time, a male (Falade, Ogundiran, Bolaji, Ajayi, Akinboye, Oladepo, … Oduola, 2007). Furthermore, from the study findings, some key decision makers opposed biomedical services, (orthodox medicine) as they claimed that ‘seizure is not a hospital sickness’. A previous study’s finding agrees with this finding (Comoro et al., 2003). Consultation of other family members such as mothers, brothers or sisters is a way of sharing responsibilities and seeking help. It is believed that taking decisions about a child’s health care constitute household decisions where the decisions are influenced by people such as relatives in the house or families (Forry, Tout, Rothenberg, Sandstrom & Vesly, 2013). The young mothers in the study said they were not experienced in child care since that was their first child and they needed advice from the elderly who were more experienced. This finding is similar to a finding from Kelly, Sahm, Shiely, Sullivan, et al., (2016) on parental knowledge, attitudes and beliefs regarding fever in children conducted in Ireland. Contrary to these findings, some mothers in the current study took decisions on their own since their husbands were not present at the time the seizures occurred. Again, neighbours and friends were of great help to the mothers during the seizure episodes where they gave advice on home remedies or where to send the convulsive children. 5.4 Using the Middle Layer between Home and Clinic A middle layer in the community is a professional or specialist such as a doctor, nurse and a pharmacist as well as religious leaders such as a pastor, fetish priest/ priestess, 61 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children a traditional healer and/ or a herbalist. A study conducted by Pierce (2016), posited that caregivers begin with home treatment and will only change to an alternate treatment when the first treatment is unsuccessful. In another study conducted in Mali by Ellis, Winch, Daou, Gilroy, & Swedberg, (2007), similar findings emerged. It was found out that if there is no improvement in the child’s condition a few days after commencement of home treatment, the caregiver then seeks treatment from pharmacies, traditional healers and health workers in the community. The current study showed similar findings. Mothers went to pharmacists to get medications such as antipyretics and antibiotics for their children. A doctor and a nurse were also consulted for interventions during the seizure episodes. Other mothers who believed the cause of seizure was spiritual either went to a Pastor/ Fetish Priestess or a Traditional healer/ herbalist. This finding is supported by that of Friend-du Perez et al., (2009). The authors posited that the middle layer is alluring in instances where the cause of the sickness is believed to be due to evil spirits and wizardries such that their services are engaged to deal with such supernatural powers. This finding is also consistent with that of another study by Asare (2017), which indicated that in the African society, a major determinant of choice of treatment is spiritual belief. Furthermore, the findings from this study indicated that, some children were sent to the herbalist/ traditional healer who made scarification on the children and administered medicines in the wounds to abort the seizures. The cuts were believed to allow the evil spirits to come out and the medicines specifically cast out the evil spirits believed to cause the seizures. 5.5 Accessing Formal Biomedical Services Formal biomedical service involves seeking care from a hospital or a clinic or a health facility. Findings from this study showed that mothers accessed biomedical services based on the fact that the situation was an emergency and needed urgent attention. Some of the children were brought to the hospital in their convulsive states. This finding is similar 62 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children to findings from a study by Hageman et al., (2013) on febrile seizures. The results from that study revealed that, febrile seizure was one of the reasons why parents visited the emergency room since the event was terrifying to them. This is also in consonance with a study by Galizia & Faulkner (2018), on epilepsy and seizures presentation and their management in acute medical setting:. From that study, common presentations to emergency units were seizure- mimics and seizures. On the other hand, parents brought their children with simple febrile seizures to the emergency unit for medical care after the seizure has resolved (Hageman et al., 2013). Additionally, a study by Hussein et al., (2016) on the effect of an intervention on prevention of recurrence of febrile convulsion among under five children also reported similar findings. Most children with febrile seizures are brought to the medical facility after the seizure has resolved. However, a small number of children present to the health facility while still convulsing (Paul & Chinthapalli, 2013). This was found to be true in the current study where some mothers said the seizures aborted before getting to the health facility whilst others were brought in a convulsive state. Febrile seizures bring about significant anxiety in mothers and hence, it is essential that every child should be referred to the hospital after having a seizure episode at home (Chung, 2014). Furthermore, according to this study’s findings, the type of health facility visited was influenced by factors such as recommendation from friends, proximity, attitude of staff and the need for prompt care. Proximity was found to be one major factor mothers considered when seeking biomedical services. From the findings, attitudes of healthcare staff either discouraged or encouraged mothers to seek biomedical services for their children. Respondents also reported that their choice of biomedical services was influenced by the fact that their children needed prompt or expert care. Others were referred from a primary health facility to a secondary health facility. 63 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 5.6 Mothers’ Reaction This theme focused on the way mothers responded emotionally or psychologically when their children had seizures. The findings from this study indicated that, being the first time experience for some mothers, they were anxious seeing their children go through the seizures. This finding is consistent with findings from a study on parental anxiety and family disruption following a first febrile seizure (Wirrell & Turner 2001). This finding is also supported by a study conducted on febrile convulsion among children under five, where behavioural, physical and psychological manifestations were identified to be parental responses and reactions towards febrile seizures (Hussein, El, Saboula, & Eldein 2016). Some psychological responses included extreme anxiety about fever recurrence. Again, although febrile seizures are not harmful to the affected children, the episode can be very frightening for mothers. Thus, the need to sensitively address the anxiety of these mothers so as to keep them calm (Paul et al., 2015). Another finding from the study showed that, mothers were overwhelmed. They did not completely understand why the seizures were happening to their children. They felt helpless and hopeless since they could not do much to stop the seizures. Furthermore, fear gripped some of the mothers as a result of the seizures. They claimed they feared because it was their first experience. Crying was another reaction reported by some of the mothers in this study. 5.7 Ignorance It was observed from the current study that some mothers were ignorant about febrile seizure, its signs and symptoms, causes and management either at home and or at the hospital. To some, seeing the seizure was an event they could not comprehend whilst others could not identify what exactly could be happening to their children. At home, giving the children first aid was an idea from either friends or family members since their mothers had 64 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children no experience. At the hospital, some of the mothers were not informed about the management given to their children and they were not bold enough to ask questions concerning the care rendered to their children. 5.8 Evaluation of the Study Model The Household Decision Making Model by Colvin et. al., (2013), served as a guide for this study. It helped to explore the beliefs and practices of mothers concerning the care of children with febrile seizures. The model guided the researcher to derive the objectives and research questions for the study. Organization of the literature review, study design, data collection tool and the discussion of findings were based on the model. Identification of signs and symptoms of febrile seizures, home remedies, causes and beliefs were considered as the caregiver recognition and response part of the model. Consultation of Significant Others were in relation to seeking advice and negotiating access part of the model. Using the middle layer between home and clinic in the model, covered seeking care in the community whilst healthcare facility was considered accessing formal biomedical care of the model. The study supported the model in its entirety hence the model was not modified. 5.9 Suggestion for Model Modification The Household Decision Making Model basically focuses on caregiver’s physical variables of actions taken in relation to illness. The scope must therefore be expanded to include the psychological aspects as well, as depicted by this study. 65 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children CHAPTER SIX SUMMARY, IMPLICATIONS, LIMITATIONS, CONCLUSION AND RECOMMENDATIONS This chapter focuses on the summary of the study, its implications, limitations, conclusion and recommendations based on the study’s findings. 6.1 Summary of the Study The study utilized the Household Decision Making Model developed by Colvin et.al., (2013) to explore the beliefs and practices of mothers concerning the care of children with febrile seizures at the Princess Marie Louise Hospital, Accra. Ethical approval was obtained from the Noguchi Memorial Institute for Medical Research Institutional Review Board (NMIMR-IRB) and the Ghana Health Service Ethical Review Committee (GHS- ERC). Following the approvals, an introductory letter was given from the Accra Regional Health Directorate and the Accra Metro Health Directorate to Princess Marie Louise Hospital for the collection of data. The interview guide was pre-tested on two mothers whose children were diagnosed with febrile seizures at the children’s emergency unit of the Korle-Bu Teaching Hospital. After the pretest, the necessary corrections were made to the topic guide before the actual data was collected. Twelve mothers whose children were diagnosed with febrile seizures participated in the study. Consents of mothers were sought before the commencement of the study. The study was carried out between May and June, 2019. Data analysis was done using thematic content analysis. The study showed that some mothers identified seizures by the signs and symptoms such as a rise in body temperature, change in eye movement and clenching of teeth. These findings showed that some mothers had knowledge about the signs and symptoms of febrile seizures. The causes of seizures were attributed to physical, spiritual and other causes. The physical causes according to the mothers included fever, phlegm and stomach ulcer. 66 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Spiritual causes were attributed to evil spirits, spiritual attack, witchcraft and consequences of unperformed birth rituals. Another cause of seizure as identified from the study was marital conflict between parents of a convulsive child. Some mothers believed the seizures were caused by supernatural forces. Again, some responses of the mothers towards the seizures were based on the perceived causes. Water, oil, medications such as antipyretics, antibiotics and herbs as well as prayers and positioning were interventions given at home to either reduce the fever or abort the seizures. It was observed that some mothers used in-appropriate methods to abort the seizures. Additionally, some mothers consulted their husbands, in-laws, friends, neighbours and other family members during the seizure episodes on either the choice of treatment or the actions taken or the interventions given. They also consulted specialists in the community such as pharmacists, doctors and nurses as well as religious leaders such as Traditionalist/ herbalists, Fetish Priestess and Pastors in dealing with the seizures. It could be inferred from the study that, the choice of biomedical services was influenced by factors such as proximity, attitude of staff, emergency situation and the need for expert care. The distance from one’s home to the nearest clinic was considered since it was an emergency situation. The friendly or the rude attitude of the staff also influenced the decision of the mothers to choose the health care facility. Lastly, it could be noted that, the psychological reactions of the mothers towards seizures were anxiety and devastation. This could be because it was their first time to experience seizure episodes in their children. Some mothers were ignorant about seizures and their management either at home or in the hospital setting. 67 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 6.2 Implications for Nursing Practice The findings from this study call for the need for addressing some implications in nursing practice. The findings indicated that febrile seizures were associated with both physical and spiritual causes. It is therefore necessary to involve spirituality in the management of children with febrile seizures. Thus, a holistic approach to care of children with febrile seizures in the hospital setting should be employed. Additionally, the study provided evidence that some mothers have misconceptions about febrile seizures and hence use inappropriate methods to manage it at home. It is important to educate mothers at the out-patient departments (OPD) whenever they come for hospital visits and on the wards, for those on admission, about the management of children with febrile seizures especially at home before seeking medical care. Also, it is of utmost importance to inform the mothers about the care given to their children in the hospital and the treatment modalities. This the researcher believes, will help involve the mothers in the care given at the hospital and to gain their full cooperation. 6.3 Nursing Education From the study, some of the mothers reported that, some staff members showed negative attitudes towards them. It will be of great benefit if the staff in the various health facilities are trained in customer care and satisfaction through in-service training. Additionally, the Ghana College of Nurses and Midwives needs to train more specialist paediatric nurses to give specialised care to the children at the various health facilities. 6.4 Nursing Research The current study was conducted at the Princess Marie Louise Hospital in Accra where the beliefs and practices of mothers on febrile seizures were explored. The results suggest that, expanded research should be conducted on the beliefs and practices of mothers 68 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children concerning the care of children with febrile seizures in other facilities such as the regional hospitals of the Eastern or Northern Regions of Ghana. 6.5 Limitations of the Study It was observed that mothers were not fully composed during interviews conducted at the emergency room on the first day of admission. However, there was no observed difference in data gathered from those who stayed at the emergency room for more than one day. 6.6 Conclusion In conclusion, findings from the present study indicated that although mothers have an idea about febrile seizures, they lacked adequate knowledge about its management at home and hence use inappropriate methods to abort the seizure or stop its recurrence. Some findings of the study were consistent with the constructs of the Household Decision Making Model whilst other findings were identified outside the constructs. From the study, findings that were consistent with the model’s constructs in relation to caregiver recognition and response were identification of signs and symptoms of febrile seizures such as fever, change in eye/ body movement, and clenching of teeth. Others included causes and beliefs about febrile seizures such as physical, spiritual and other causes. Home remedies such as the use of water/ oil, medications, positioning and prayers were employed. Secondly, consultation of Significant Others such as In-laws, husbands and family members (mothers, sisters and brothers), neighbours and friends was identified to have an influence on the decisions about the care of children with febrile seizures. Furthermore, before getting to the health facility, the mothers also consulted pharmacists, doctor/nurse, traditional healer/ herbalist, Pastor and fetish Priestess. It was found out that, proximity, attitude of staff, expert care, emergency situation, 69 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children recommendation from friends were factors that influenced the choice of biomedical services sought. Mothers’ reaction such as anxiety and devastation, were the emotional/ psychological factors that respondents stated they experienced in the current study. Lastly, some mothers expressed worry about not being given information on the care given to their children at the hospital. This indicated that mothers need to be educated on the management of febrile seizures at home and also be updated on the care given during the admission period so as to get them involved in the care of their children. Hence, there is the need to develop educational programmes for mothers on the management of febrile seizures at home. The findings from this study can be used to develop interventions to help these mothers manage seizure effectively at home. Information or education can also be given to mothers during their OPD visits to the hospital on management of febrile seizures to avert under-five mortalities as a result of use of inappropriate methods at home. 6.7 Recommendations Based on the study findings, these recommendations were made to the Ghana College of Nurses and Midwives, the Ministry of Health, Ghana Health Service, Princess Marie Louise Hospital and for Research. Ghana College of Nurses and Midwives (GCNM)  To train more specialist paediatric nurses to give specialised care to the children admitted to the various health facilities, specifically in neurological nursing. 70 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Ministry of Health (MOH) The Ministry of Health should:  Employ more specialist paediatric nurses (specifically neurology nurses) to provide effective care for paediatric patients (diagnosed with any neurological condition such as seizures) at the various health facilities.  Educate the general public through the media on febrile seizure occurrence in children through role play or drama, the associated signs and symptoms and how to effectively manage it at home before seeking biomedical service. Ghana Health Service (GHS) The Ghana Health Service (training division) should:  Ensure every health facility has at least a specialist paediatric nurse (trained in neurology and a paediatric neurologist) to provide the needed care for children who are brought to such facilities diagnosed with a neurological condition.  Train the staff in the various health facilities in effective communication, patient satisfaction and customer care through periodic in-service training. Princess Marie Louise Hospital (PML) Princess Marie Louise Hospital should:  Develop educational programmes focusing on the signs and symptoms of febrile seizures and their management at home for mothers who seek care for their children in the facility.  Educate mothers on the febrile seizures at the OPD as well as those with children on admission on the wards through health talks and role play. 71 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Recommendation for further research  It is important for future research to be conducted on the reactions of mothers towards febrile seizures. 72 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children REFERENCES Abdulraheem, I. S., & Parakoyi, D. B. (2009). Factors affecting mothers’ healthcare‐ seeking behaviour for childhood illnesses in a rural Nigerian setting. 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(2015). Sutton and Austin, 68(3), 226–231. Taber, J. M., Leyva, B., & Persoskie, A. (2015). Why do People Avoid Medical Care? A Qualitative Study Using National Data. Journal of General Internal Medicine, 30(3), 290–297. https://doi.org/10.1007/s11606-014-3089-1 Taveras, E. M., Durousseau, S., & Flores, G. (2004). Parents’ Beliefs and Practices Regarding Childhood Fever. Pediatric Emergency Care, 20(9), 579–587. https://doi.org/10.1097/01.pec.0000139739.46591.dd The World Health Report 2005 Make every mother and child count The World Health Report 2005. (2005). World Health. Retrieved from http://www.who.int/whr/2005/whr2005_en.pdf 80 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Thorne, S. (2000). 9.27EBN notebook Data analysis in qualitative research. Evid Based Nurs, 3, 68–70. https://doi.org/10.1136/ebn.3.3.68 Tobin, G. A., Begley, C. M., & Tobin, G. (2004). 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Paediatrics and Child Health, 6(3), 139–143. https://doi.org/10.1093/pch/6.3.139 Zyoud, S. H., Al-Jabi, S. W., Nabulsi, M. M., Tubaila, M. F., Sweileh, W. M., Awang, R., & Walsh, A. (2015). The Validity and Reliability of the Parent Fever Management Scale: A Study from Palestine. Maternal and Child Health Journal, 19(8), 1890– 1897. https://doi.org/10.1007/s10995-014-1529-5 81 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children APPENDICES Appendix A: Introductory letter to NMIMR-IRB 82 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Appendix B: Introductory letters to GHS-IRB 83 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 84 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Appendix C: Ethical Clearance from NMIMR-IRB 85 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Appendix D: Ethical approval from GHS-IRB 86 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Appendix E: Introductory letter GHS 87 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Appendix F: Introductory letter to Accra Metropolitan Health Directorate 88 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Appendix G: Introductory letter to PML 89 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Appendix H: Interview Guide DATA COLLECTION INSTRUMENT TOPIC: EXPLORING THE BELIEFS AND PRACTICES OF MOTHERS CONCERNING THE CARE OF CHILDREN WITH FEBRILE SEIZURES: A STUDY IN THE ACCRA METROPOLIS. A. DEMOGRAPHIC DATA  Participant…………..………………………………………….…..  Age of participant…………………………………………………….  Level of education……………………………………………………  Languages spoken………………………..…………………………..  Occupation……….………………………………….………………..  Marital status…………………………………………………….…….  Number of children……………………………….……………………  Religious affiliation…………………………………………….………  Husband’s education……………………………………………………  Husband’s occupation………………………………………………….. CHILD’S PARTICULARS  Age: ……………………………………………………………...  Sex: ……………………………………………………….…..….  Birth order………………………………………………………... B. INTERVIEW GUIDE CAREGIVER RECOGNITION AND RESPONSE  Could you please tell me what happened to your child?.........................................  How did it come about?........................................................................................... 90 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children  What do you remember most?...........................................................................  What was mostly difficult during this time?......................................................  How did you feel during that moment?.............................................................  What did you do when you saw your child in such a state?...............................  What thoughts ran through your mind as you tried to understand what was happening to your child?.................................................................................... SEEKING ADVICE AND NEGOTIATING ACCESS  What made you decide to seek help for your child?...........................................  How did you know that was the best option for your child’s condition?..............  What are your thoughts about the outcome of your child’s condition?.................  Who takes decision regarding health issues at home? …………………………...  How long has it taken you to derive at a decision?................................................. USING MIDDLE LAYER BETWEEN HOME AND CLINIC  When you sense your child’s temperature was high what did you do?....................  What happened to the child before the seizure started?..................................  What did you use at home to stop your child’s condition?....................................  What made you chose that option?....................................................................  Which other methods did you use?.............................................................  How effective was that method you used?.........................................................  Tell me more about the various methods you know in treating the condition of your child…………………………………………………………………… 91 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children  Which remedy was most helpful?.................................................................. ACCESSING FORMAL MEDICAL SERVICES  What made you decide to bring your child to the hospital?....................................  How long has the condition started before bringing your child to the hospital?  What do you know about the management of your child’s condition in the hospital?................................................................................................................  What factors did you consider when choosing the health facility?.......................  Is there anything more you want to share about your child? Tell me about it. 92 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Appendix I: Consent Form 93 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 94 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Appendix J: Participants information sheet 95 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 96 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 97 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children 98 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Appendix K: Demographic Characteristics of Respondents participant' age level of languages occupation marrital number of religion husband's husband's child's sex of birth code education spoken status children education occupation age child order FSR1 37 secondary English, Twi, Igbo Trader Married 1 Christian Secondary Pastor 4 years Female 1st FSR2 32 primary Ga, Twi, Ewe, Ada Trader Married 3 Christian Primary Business 1.6 years Female 3rd FSR3 35 primary Twi Trader Not married 3 Christian Not known Business 5 months Female 3rd FSR4 32 tertiary English, Twi, Ga Caterer Married 2 Christian Secondary Driver 2.4 years Female 2nd FSR5 36 primary Fante, Twi Hair dresser Married 5 Christian Secondary Business 4 adys Female 5th FSR6 35 nil Twi, Kusasi, Hausa Trader Not married 1 Muslim Secondary Business 8 months Male 1st FSR7 35 tertiary English, Ga, Twi Nurse Married 1 Christian Tertiary Driver 2.3 years Male 1st FSR8 32 primary Fante, Twi Trader Not married 1 Christian Not known Tailor 2 years Female 1st FSR9 23 secondary Ga, Twi, English Hair dresser Not married 1 Christian Primary Trader 2 years Female 1st FSR10 28 primary Hausa, Fante, Fulani Unemployed Married 4 Muslim Secondary Plumbar 1.8 years Female 4th FSR11 37 primary Twi, Ga, English Unemployed Married 3 Christian Tertiary Teacher 2.6 yaers Female 3rd FSR12 36 primary Twi, Fante Farmer Married 5 Christian Primary Tailor 1.7 years Female 5th 99 University of Ghana http://ugspace.ug.edu.gh Beliefs and Practices of Mothers concerning Febrile Seizures in children Appendix L: Major Themes and Sub-themes MAJOR THEMES SUB-THEMES Identification of Signs and Symptoms of  Fever febrile seizure  Change in eye/ body movement  Clenching of teeth Causes and Beliefs  Physical  Spiritual  Others (marital conflict) Home Remedies  Medications (antipyretics, antibiotics, garlic)  Prayers/ positioning  Water/ oil Consultation of Significant Others  Family (husbands, In-laws, mothers, brothers, sisters)  Neighbours/ friends Seeking Care in the Community  Religious leaders (pastors, fetish priestess, traditional healers)  Health professionals (doctors, nurses, pharmacists) Health Care Facility  Emergency  Attitude of staff  Others (recommendation, proximity, expert care) Mother’s Reaction  Anxiety  Devastation (crying, confusion) Ignorance  Condition (febrile seizure)  Management of Febrile Seizure (at home and hospital) 100