HIV SERO STATUS DISCLOSURE BY CAREGIVERS TO INFECTED CHILDREN ACCESSING CARE AT MBAGATHI HOPSITAL, NAIROBI CITY COUNTY, KENYA By JONES NZIOKI MUTISO (BSc.N) Q57/CTY/PT/20550/2012 DEPARTMENT OF COMMUNITY HEALTH AND EPIDEMIOLOGY “A RESEARCH THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE AWARD OF THE DEGREE OF MASTER OF PUBLIC HEALTH (EPIDEMIOLOGY AND DISEASE CONTROL) IN THE SCHOOL OF PUBLIC HEALTH AND APPLIED HUMAN SCIENCES OF KENYATTA UNIVERSITY” OCTOBER 2021 DECLARATION I hereby declare this as my individual work and it has not been submitted in another University or institute for a degree or any other academic qualification. Sign……………………………………… Date………………………………… Jones Nzioki Mutiso. Q57/CTY/PT/20550/2012 Supervisors: As University supervisors, this thesis has been rendered for review with our authorization. Sign………………………………………. Date ……………………………. Dr. Justus O.S. Osero Department of Community Health & Epidemiology Sign… ……………… Date ……………………………… Dr. Eunice Chomi Department of Community Health & Epidemiology ii DEDICATION To my wife, Loyce Nduku, for her love and support during my study period. iii ACKNOWLEDGEMENT I am grateful to my very knowledgeable and competent supervisors, Dr. Justus Osero and Dr. Eunice Chomi for their continuous guidance and support they provided to me since the start of this work. I also acknowledge the help I got from my research assistants at Mbagathi Hospital (especially Lilian) and Mama Lucy Kibaki Hospital during pre-testing of tools and data collection. Dr. Ken Muthoka, I am grateful to you for the support you accorded to me during data analysis. Many thanks to my family and friends who contributed to this success in various ways, both big and small. Lastly glory to God for His guidance and for the special help all through. iv TABLE OF CONTENTS DECLARATION......................................................................................................... ii DEDICATION............................................................................................................ iii ACKNOWLEDGEMENT......................................................................................... iv TABLE OF CONTENTS ............................................................................................v LIST OF TABLES ..................................................................................................... ix LIST OF FIGURES .....................................................................................................x DEFINITION OF OPERATIONAL TERMS......................................................... xi ABBREVIATIONS AND ACRONYMS................................................................. xii ABSTRACT.............................................................................................................. xiii CHAPTER ONE: INTRODUCTION........................................................................1 1.1 Background information ......................................................................................1 1.2 Statement of the problem .....................................................................................3 1.3 Justification ..........................................................................................................4 1.4 Research Questions ..............................................................................................5 1.5 Null Hypotheses ...................................................................................................6 1.6 Objectives.............................................................................................................6 1.6.1 Broad Objective ........................................................................................6 1.6.2 Specific Objectives ...................................................................................6 1.7 Limitation of the Study ........................................................................................7 1.8 Conceptual Framework ........................................................................................8 1.9 Significance of the study......................................................................................9 CHAPTER TWO: LITERATURE REVIEW.........................................................11 2.1 Overview of HIV Status Disclosure in Children................................................11 2.2 Importance of disclosing HIV sero-status to infected children..........................12 2.3 Rates of HIV sero-status Disclosure in Children ...............................................13 v 2.4 Reasons for not disclosing HIV sero-status to Children ....................................13 2.5 Socio-demographic and economic determinants of HIV status Disclosure. ......14 2.6 Attitudes towards HIV status Disclosure. ..........................................................15 2.7 Cultural beliefs about HIV status Disclosure.....................................................16 2.8 Perceived consequences of HIV status Disclosure ............................................17 CHAPTER THREE: MATERIALS AND METHODS .........................................19 3.1 Study design .......................................................................................................19 3.2 Variables.............................................................................................................19 3.2.1 Dependent Variable ................................................................................19 3.2.2 Independent Variables ............................................................................19 3.3 Location of the Study .........................................................................................19 3.4 Study Population. ...............................................................................................20 3.5 Enrolment Criteria..............................................................................................20 3.5.1 Inclusion Criteria ....................................................................................20 3.5.2 Exclusion Criteria ...................................................................................20 3.6 Sampling Technique and Sample Size Determination .......................................21 3.6.1 Sampling Technique ...............................................................................21 3.6.2 Sample size Determination. ....................................................................22 3.7 Data collection tools...........................................................................................23 3.8 Pre-testing of tools .............................................................................................24 3.8.1 Validity ...................................................................................................24 3.8.2 Reliability................................................................................................24 3.9 Data collection Techniques ................................................................................24 3.10 Data analysis ....................................................................................................25 3.10.1 Quantitative Data analysis ....................................................................25 3.10.2 Qualitative Data analysis ......................................................................25 vi 3.11 Logistical and Ethical Considerations..............................................................26 CHAPTER FOUR: RESULTS .................................................................................28 4.1 Socio-demographic and economic attributes of the Participants ......................28 4.2 HIV Sero-status Disclosure to children..............................................................29 4.3 Caregivers. Perceptions of Importance of Disclosure to HIV positive children31 4.4 Caregivers. Perceptions on effects of socio-cultural factors on disclosure........34 4.5 Factors that influence disclosure of HIV status to children ...............................36 4.6 Regression analysis of Socio-economic and demographic determinants of HIV sero-status disclosure to HIV infected children accessing care at Mbagathi Hospital. ............................................................................................................38 CHAPTER FIVE: DISCUSSION, CONCLUSIONS AND RECOMMENDATIONS...........................................................................................40 5.1 Introduction ........................................................................................................40 5.2 Discussion ..........................................................................................................40 5.2.1 HIV Sero-status Disclosure to Children .................................................40 5.2.2 Caregivers. Perceptions on the importance of Disclosure......................43 5.2.3 Socio-demographic and economic factors influencing disclosure..........44 5.2.4 Socio-cultural factors influencing disclosure of HIV to infected children at Mbagathi Hospital......................................................................................48 5.3 Conclusions ........................................................................................................48 5.4 Recommendations ..............................................................................................49 5.4.1 Recommendation from the study............................................................49 5.4.2 Recommendations for further research...................................................50 REFERENCES...........................................................................................................51 APPENDICES............................................................................................................56 Appendix I: Questionnaire .......................................................................................56 Appendix II: Informed Consent ...............................................................................66 vii Appendix III: In-depth Interview Guide-Caregiver who has disclosed ...................69 Appendix IV: In-depth interview Guide-Caregiver who has not disclosed .............72 Appendix V: In-depth Interview Guide, Nurse Counsellor .....................................74 Appendix VI: Map showing location of Mbagathi Sub County Hospital................77 Appendix VII: Research Authorizations ..................................................................78 Appendix VII: Research Permit ...............................................................................81 viii LIST OF TABLES Table 4.1: Socio-demographic and economic attributes of the participants and their children........................................................................................................29 Table 4.2: Chi Square test of independence between categorical variables and disclosure ....................................................................................................37 Table 4.3: Regression analysis of socio demographic and economic characteristics of HIV sero status disclosure to infected children accessing care at Mbagathi Hospital .......................................................................................................39 ix LIST OF FIGURES Figure 1.1: Multiple factors affecting disclosure to HIV positive children...................8 Figure 4.1: Proportion of guardians who have disclosed HIV Sero-status to their children........................................................................................................30 Figure 4.2: Reasons for not disclosing.........................................................................31 Figure 4.3: Caregivers. perceptions of importance of Disclosure ..............................32 Figure 4.4: Perceived reasons for the importance of disclosure to child.....................33 Figure 4.5: Effect of socio-cultural factors on HIV positive status disclosure............34 Figure 4.6: Forms of Stigma caregivers thought they would face after disclosure .....35 x DEFINITION OF OPERATIONAL TERMS Adolescent-any person between ages 10 to 19 years Anti-retroviral resistance-capability of HIV to mutate and reproduce itself in the presence of ARVs. Disclosure of HIV infection to a child-This is when a child.s HIV status has been revealed to him/her. Epidemic-refers to a sudden increase in the count of cases of a disease above the normal in a particular population Pandemic-is when an epidemic has spread over several countries or continents striking a large number of persons. xi ABBREVIATIONS AND ACRONYMS AIDS Acquired Immuno-deficiency syndrome AMPATH Academic Model Providing Access to Healthcare Comprehensive Care Centre ART Anti-retroviral therapy ARVs Anti-retroviral drugs GoK Government of Kenya HTS HIV Testing Services HCW Health Care Workers HIV Human Immunodeficiency Virus KAIS Kenya AIDS Indicator survey KDHS Kenya Demographic Health Survey MoH Ministry of Health NACOSTI National Commission for Science, Technology and Innovation PLHIV People living with HIV SPSS Statistical Package for Social Sciences TB Tuberculosis UNAIDS Joint United Nations program on HIV/AIDS WHO World Health Organization xii ABSTRACT Background: HIV status disclosure to children is key to comprehensive pediatric HIV care. Increased access to antiretroviral drugs (ART) has led to survival of infected children posing a new challenge to parents on whether, when or how to disclose. Objective: To understand the prevalence, correlates and caregivers. perspectives on disclosure to HIV infected children on ART. Methodology: A mixed methods study with an analytic cross-sectional design for the quantitative aspect of the study was done. The target population was caregivers to HIV infected children aged 6 to 14 years receiving HIV care at Mbagathi Hospital, Kenya. Data was collected using questionnaires and interview guides. Chi-square and logistic regression were used to determine predictors of disclosure while thematic analysis was done for qualitative data. Results: Disclosure prevalence was 36% (n=254). Age 10-14 compared to 6-9 years (aOR=10.97; 95% CI=5.7-21.2; p<0.0001), longer duration on HIV care (aOR=1.91; 95% CI=1.02-1.97; p<0.0001) for >5 years compared to <1 year, which was similar to 1-5years duration (aOR=1.03; 95% CI=0.36-1.97; p=0.233) and perceived importance of disclosure (aOR=2.58; 95% CI=1.36-4.90; p=0.004) were significantly associated with disclosure. Fear of stigma and discrimination was associated with low disclosure (OR=0.931; 95% CI=0.44-151; p<0.0001). Caregiver.s perceptions of importance of disclosure and influence of socio-cultural factors influenced disclosure. Conclusion: Disclosure prevalence was low (36%) despite high caregivers. perception of disclosure as important. Age of child, child.s duration on care, caregivers. perceptions importance of disclosure and socio-cultural factors were associated with increased disclosure. xiii CHAPTER ONE: INTRODUCTION 1.1 Background information Sub-Saharan Africa continues to bear the pressure of the HIV pandemic with 67% of the world.s 35.4 million persons infected with HIV in the region. The region also houses to about 91% of all the children living with HIV (UNAIDS, 2013). Kenya has an estimated 1.6 million PLHIV and about 0.9 % of all the children aged between 18 months and 14 years is HIV infected (UNICEF, 2019). The American Academy of Paediatrics advocates that all school-going children to be informed their HIV infection and that of their caregiver.s incrementally. Despite this recommendation, majority of HIV positive children all over the world are not aware of their state (Maria et al., 2013; Dewi et al., 2017). Increased access to Antiretroviral drugs (ARVs) translates to increased survival of these children up to adolescence and beyond, posing a new challenge to parents on whether to disclose to them or not, about their HIV condition. (Atwiine et al., 2014; Dewi et al., 2017). Studies done in HIV programs in several Countries like Nigeria, Ethiopia, Kenya, Thailand and Uganda showed that rates of disclosing HIV infection to children aged between 6 and 14 years are low. Caregivers gave reasons for nondisclosure. Such included incapacity of the children to understand, caregivers. fearing the children will disclose to other children and family/friends, fear of children being disturbed psychologically and fear of blaming the parents ((Ubesie et al., 2016; Enobong and Ofomine, 2016; Yezihalem et al., 2015; Nzota et al., 2015; Vreeman, 2014; Atwiine et al., 2014; Desta, 2014; Turisini et al., 2013; Sirikum et al., 2014). In western Kenya, it has been reported that “rates of informing children of their HIV 1 positive status are low, even among older children, with only 11.1% of children knowing their HIV status” (Turissini et.al, 2013). Children who are not aware that they are HIV infected may not take their medication well, which can prompt drug resistance and death. Disclosure to HIV infected children helps them to overcome the anger of being HIV positive and soothes the inconvenience of taking their ARVs thus improving on adherence (Turissini et al., 2013; Lowenthal and Marukutira, 2016). It helps in overall psychosocial development of the child, improving treatment outcomes (Das et al., 2016; Gyamfi et al., 2017). Young children who have been told of their illness in good time and appropriately cope better and will have no psychological issues (Namukwaya et al., 2017). Self- attested mental anguish has also been reported to be fewer among HIV positive children who are aware of their state (Lowenthal and Marukutira, 2016). With disclosure, adherence is optimal since children are involved in their treatment and appointments, creating better dialogue among the infected adolescent, caregiver and health care workers (Turissini et al., 2013; Lowenthal and Marukutira, 2016). If adherence is poor due to non-disclosure, anti-retroviral resistance is more likely to occur and the children will have limited treatment options to switch to. Disclosure is associated with safer sex behaviors in adolescents (Namukwaya et al., 2017). With non-disclosure and early sexual debut, transmission of already resistant virus from non-adherent adolescent may occur, leading to increased AIDS-related illnesses and deaths which is a setback to HIV management (Lowenthal and Marukutira, 2016; Turissini et al., 2013). There is great need to address the issue that is central to their wellbeing and in improving their treatment outcomes. In Kenya, there is no guidelines on HIV 2 disclosure in children. It is also not clear how many HIV positive children in Kenya have been disclosed their status. The only information available is from studies in Western Kenya and Nairobi (Turissini et.al, 2013) and on the percentage of children who know HIV (not their HIV status) -28.6% of children between 10-14 years had a talk about HIV/AIDS with their parents (UNICEF, 2019). Much needs to be done on how to disclose and when to disclose to HIV positive children in Nairobi. The reason for this research was to find out why caregivers in Nairobi are hesitant to tell their children that they are HIV infected. This information will be used in guiding disclosure decisions and therefore improve care and treatment of HIV infected children. 1.2 Statement of the problem Approximately 111,500 children in the Country between the ages of 18 months to 14 years are HIV positive (UNICEF, 2019). WHO recommends that all school-age children to be informed their HIV infection state and that of their guardians incrementally. Contrary to this majority of HIV positive children all over the world are not aware of their status, and it is not well known why caregivers are hesitant to disclose (Maria et al., 2013; Turissini et al., 2013). In western Kenya, for example, it has been demonstrated that levels of informing children of their HIV positive state are low. This is the case even among older children, with only 11.1% of children knowing their state (Turissini et.al, 2013). In Nairobi, only 19% of HIV infected children are aware of their status (Turissini et al). In Nairobi, caregivers to HIV infected children are in dilemma on whether to disclose and how and when to do so. When children are not aware of their HIV positive state, adherence to drugs or clinic appointment becomes a challenge. Caregivers have 3 reported a challenge of convincing a child to take his/her ARVs when the siblings are not infected, with some children asking why they are the only ones taking drugs whereas their siblings are not. Other caregivers have reported bringing the HIV infected child alongside his/her siblings to Hospital CCC to help escape the question of why am I the only one who goes to hospital now and then. Others opt to cheat the children that the drugs are for treating chronic illnesses like Tuberculosis (TB). With time, a good number of children start declining to take the ARVs alleging that they are no longer sick. This is where the caregivers get into confusion on whether to disclose or not. The worry is if they disclose the children may not know what being HIV infected means. Worse still the caregivers fear that on knowing their status the children will disclose to other children or relatives thus attracting stigma. This calls for an intervention to help caregivers gain the knowledge and skills to disclose to their infected children early. 1.3 Justification Disclosing HIV infection to children is a key feature of comprehensive pediatric HIV care without which proper adherence to ART cannot be achieved (Vreeman et al, 2014). Disclosing HIV positive result to children is growingly a crucial and equally unavoidable affair. Infected children not knowing their HIV positive status has many consequences. With non-disclosure, adherence is sub-optimal since children are not involved in their treatment and appointments, thus no dialogue among the infected adolescent, caregiver and health care workers (Turissini et al., 2013; Lowenthal and Marukutira, 2016). If adherence is poor due to non-disclosure, anti-retroviral resistance is more likely to occur and the children will have limited treatment options to switch to, which can lead to death of the child. With non-disclosure and early sexual debut, transmission of already resistant virus from non-adherent adolescent 4 may occur, leading to increased AIDS-related illnesses and deaths which is a setback to HIV management (Lowenthal and Marukutira, 2016; Turissini et al., 2013; Namukwaya et al.,2017). Client self-attested emotional anguish has also been reported to be lesser among HIV infected children who have been disclosed their infection state (Lowenthal and Marukutira, 2016). Despite the said benefits of disclosure, disclosure rates remain low in Kenya. Caregivers report that they encounter difficulties disclosing mainly due to stigma linked with HIV and its transmission means. The factors that are linked with non-disclosure to infected children in Nairobi are not well known. Understanding the factors connected with non-disclosure is key to solving the non-disclosure problem (Vreeman et al., 2014). Nairobi is the Country.s largest City, diverse with a huge population from all other parts, with a prevalence of 6.1% thus ideal for carrying out this study. This coupled with lack of disclosure guidelines in Kenya, the study will help come up with findings on disclosure rates and factors that make caregivers hesitate to disclose to their children. The findings will help in bridging the existing knowledge gap and therefore suggest proper intervention measures by policy makers to promote disclosure among infected children in the community that in turn will help in reducing HIV spread. 1.4 Research Questions 1. What proportion of caregivers have done disclosure HIV status to their infected children at Mbagathi Sub County Hospital? 2. What is the caregiver.s perceived importance of HIV positive status disclosure to infected children accessing care at Mbagathi Sub County Hospital? 5 3. What socio-demographic and economic attributes affect disclosure of HIV status to infected children at Mbagathi Sub County Hospital? 4. What are the socio-cultural attributes affecting disclosure of HIV status to infected children at Mbagathi Sub County Hospital? 1.5 Null Hypotheses 1. There is no relationship between HIV status disclosure and caregivers. perceived importance of it to infected children at Mbagathi Sub-County Hospital. 2. There is no relationship between HIV status disclosure and socio-demographic factors influencing it to infected children at Mbagathi Sub-County Hospital. 3. There is no relationship between HIV status disclosure and socio-cultural factors influencing it to infected children at Mbagathi Hospital. 1.6 Objectives 1.6.1 Broad Objective To determine the attributes related with HIV positive status disclosure to HIV positive children accessing care at Mbagathi County Referral Hospital. 1.6.2 Specific Objectives 1. To determine the proportion of guardians who have done disclosure to their infected children at Mbagathi County Referral Hospital. 2. To determine the caregivers. perceptions of importance of disclosure to HIV positive children accessing care at Mbagathi County Referral Hospital. 3. To determine the socio-demographic and economic factors affecting disclosure to children accessing HIV care at Mbagathi County Referral Hospital. 6 4. To determine the socio-cultural factors affecting disclosure to children accessing HIV care at Mbagathi County Referral Hospital 1.7 Limitation of the Study In this study, we used caregivers to HIV positive children to give us information about their children knowing their HIV infection status, as opposed to asking the children themselves. There could be a possibility of a caregiver who said has disclosed yet the child does not know his/her HIV positive status. This was however minimized by counterchecking reported child.s HIV status with disclosure follow up checklist on the child.s file 7 1.8 Conceptual Framework Independent Variables Intervening Variables Dependent Variable Socio-demographic and economic factors-age of both child caregiver, education level of caregiver, caregiver HIV status, Sociocultural factors- influence of stigma and cultural beliefs on disclosure. Caregiver.s perceived importance of HIV status disclosure to child .Fear of rejection .Fear of discrimination .Fear of abandonment .Family relations Disclosure of HIV status to infected children Figure 1.1: Multiple factors affecting disclosure to HIV positive children. Source: Author, developed from literature. The figure above depicts conceptual framework that illustrates multiple factors such as socio-demographic factors, socio-economic factors, knowledge on importance of HIV status disclosure (Mandalazi et al., 2014) and socio-cultural factors and how they facilitate or hinder disclosure (Gyamfi et al., 2017). “Based on the theory of planned behaviour, it shows an important contribution to disclosure research by explaining the underlying causes of non-disclosure” (Montano and Karsprzyk, 2008). It states that 8 “attitude toward behaviour, subjective norms and perceived behavioural control together shape an individual.s behavioural intentions and behaviours. This theory proposes that people.s behaviour is determined by a set of control beliefs about the presence of contextual factors such as culture, stigma and knowledge to influence positive or negative attitudes towards HIV disclosure” (Montano and Karsprzyk, 2008). These factors interact with individual.s socio-demo graphic characteristic and form a basis for disclosure intentions. Caregivers. factors (and some child factors) like knowledge on importance of HIV status disclosure, socio-demographic factors, socio-economic factors and sociocultural factors will influence belief and consequently disclosure intentions. Therefore, for disclosure to happen, this framework shows that insinuates that the dependent factors as well as personal attributes need to be considered. 1.9 Significance of the study Many studies carried out in developed and the developing countries have shown that disclosure of HIV positive diagnosis to children is very beneficial. Disclosure helps in overall psychosocial development of the child, improving treatment outcomes (Das et al., 2016; Gyamfi et al., 2017). Children who know of their illness from an early age cope better and get fewer mental issues (Namukwaya et al., 2017). Results from this study will help policy makers, Governmental and Non- Governmental institutions in developing disclosure Guidelines that will help caregiver in doing disclosure. Finding why caregivers are reluctant to disclose and assisting them do early disclosure will help improve care and treatment of HIV infected children. 9 These findings will also help health care workers (HCW) at the facility level to work closely with caregivers to HIV infected children empowering them to start partial disclosure early leading to age-appropriate disclosure to children before they reach adolescence. This early disclosure will help adolescents understand why they are taking ARVs, improve adherence to treatment hence improved treatment outcomes among HIV infected children. 10 CHAPTER TWO: LITERATURE REVIEW 2.1 Overview of HIV Status Disclosure in Children HIV disclosure to children is a step-by-step process of giving children age appropriate information about their illness leading to full disclosure when the child has cognitive and emotional maturity to understand this information (Dewi et al., 2017; Turissini et al, 2013). It is an important part of getting along with the disease. Getting to know the issues surrounding this journey is useful in curbing HIV infection and alleviating its aftermath (Das et al., 2016; Gyamfi et al., 2017). Disclosure is a means to making people know about the HIV/AIDS pandemic. It is an important step towards finishing stigma and discrimination against PLHIV (UNAIDS, 2015). It is a delicate topic that must take the requirements, sentiments and opinions of the children and their caregivers into account. This is not a one-time event, but rather a gradual process (Ubesie et al., 2016). Disclosure decisions are even more complicated when children are involved because of concerns about their psychic ability to know and deal with the illness, stigma, family relations and concerns about social support. According to WHO, school-going children should be informed of their HIV infection and that of their guardians slowly. This will help to take in their analytic skills and psychic maturity in preparedness for full disclosure. Disclosure of HIV positive status is a crucial part of the process of living with HIV and is key to chain of care and treatment. In HIV treatment, ART is extremely important in children living with HIV and if not put on treatment, almost 50% of HIV infected new-borns will die before they reach two years (UNAIDS, 2015). Children would like to be told they are infected by their caregivers before they accidentally hear it from somebody else. They also need an explanation as to how and why them. It helps in overall psychosocial 11 development of the child, improving treatment outcomes (Das et al., 2016; Gyamfi et al., 2017). 2.2 Importance of disclosing HIV sero-status to infected children. Disclosure is an important concern for the global goal of “getting to zero.” Pediatric HIV disclosure has shown to decrease the risk of mortality due to HIV by half among adolescents who learned their status as children. Other studies have indicated that disclosure can increase medication adherence by 20% in children (Beima et al., 2017). A child who totally knows why he or she is on drugs is better encouraged to do so than a child who is taking the drugs because „I need to do so.. Children who know why they are taking drugs will be more loyal in taking their medication with no guardian supervision (Atwiine et al, 2014; Yezihalem et al., 2014). Disclosure takes a main role in the psychosocial development of HIV positive children living with HIV. Early disclosure may decrease symptoms of anxiety and depression in children in addition to effecting increased feelings of normalcy. Overall, disclosure positively affects a child.s ability to engage and maintain medical treatment (Beima et al., 2017). If adherence is poor due to non-disclosure, antiretroviral resistance is more likely to occur and the children will have limited treatment options to switch. A trick of silence encircling children infected with HIV may forbid them from being supported. Unfortunately, if the caregiver dies before he/she discloses, the chance is lost for children to have a talk with their parent about their state. Children may also accidentally know of their state in a way that is not appropriate at all. If children get to know of their HIV positive status from another person apart from the guardian, they may not trust in their parent again, and experience trauma and consequently 12 depression (Beima et al., 2017). Disclosure is also important for HIV prevention. With non-disclosure and early sexual debut, transmission of already resistant virus from non-adherent adolescent may occur, leading to increased AIDS-related illnesses and deaths which is a setback to HIV management (Lowenthal and Marukutira, 2016; Turissini et al., 2013). 2.3 Rates of HIV sero-status Disclosure in Children Many studies that have been carried out in many countries have reviewed that despite WHO recommendations, most HIV positive children all over world are not aware of their status. Such studies have concluded that disclosure strategies looking at caregiver concerns are urgently needed (Maria et al., 2013). Studies show that those HIV positive children are not given sufficient details about their health. Health workers can serve as important support to guardians as they decide when and how to do disclosure to their children. Several studies carried out in poor countries and all show low disclosure levels. Such studies have been done in Ethiopia (33.3%), Nigeria (29%), Western Kenya (11.1%), Thailand (21%) and Uganda (31%), among others (Ubesie et al.,2016; Enobong and Ofomine, 2016; Yezihalem et al., 2015; Nzota et al., 2015; Vreeman, 2014; Atwiine et al., 2014; Desta, 2014; Turisini et al., 2013; Sirikum et al., 2014). 2.4 Reasons for not disclosing HIV sero-status to Children The common observation from CCCs is that a good number of children go up to the age of 16 years without being told they are HIV infected. These children will however be taking drugs whom they are not aware why they are taking them. Caregivers give varied reasons for not disclosing and the lion.s share will say they will do so when the children are up for it (Ubesie et al., 2016). Low rates of disclosure has been attributed 13 to several reasons, including caregivers believing children are too young to understand, disclosure can lead to negative emotional consequences for the child and to avoid stressing and hurting the child (Namukwaya et al., 2017). Others include fear of discrimination and stigma from family members, worry that the HIV positive child may accidentally tell other people (Ebesie et al., 2016; Gyamfi et al., 2017), caregivers fearing blame from the children (Enobong and Ofomine, 2016; Yezihalem et al., 2015) and caregivers lack of ability to disclose (Madiba, 2016). Caregivers fear that young children do not understand the magnitude of the infection and the stigma and cultural beliefs surrounding HIV infected people, hence may disclose their status to other family members and friends without knowing resulting to negative consequences. Furthermore, even after being told not to tell others, young children may also accidentally tell out their state to other people close to the family. This will in turn bring stigma and discrimination to the family from relatives and the larger community since HIV is still a condition that evokes shame and condemnation (Turisini et al, 2013). 2.5 Socio-demographic and economic determinants of HIV status Disclosure. A number of socio-demographic and economic determinants that influence disclosure of HIV positive status to children. A research done on HIV infected children in Ghana showed that child.s age and education level remained main indicators of HIV status disclosure in children. The children were more arguably to know their HIV positive status if they are older and had been on drugs or enrolled on a clinic for longer (Dewi et al, 2017; Ubesie et al., 2016). Most of the guardians regarded children less than 10 years as undeveloped and not equipped to understand what it really means to be HIV positive (Gyamfi et al., 2017; Vreeman et al, 2014). 14 A research done in Western Kenya by AMPATH revealed older children knew their HIV positive state compared to younger ones. This was due to growing age, autonomy and becoming responsible for own support that dictated the child to be aware of his or her HIV positive status (Vreeman et al, 2014). Duration of time since HIV diagnosis also portrays an essential role in disclosure. According to a research done in Ethiopia, children less than 5 years since HIV diagnosis had a faint chance of knowing they are infected (21.9%) in comparison to those diagnosed 5 years and above (40.4%) (Yezihalem et al., 2015; Tadesse et al, 2014). Disclosure is also being associated with caregivers with good support system and higher socio-economic status. Caregivers with secondary education or higher and earning more than US $ 62.5 per month were more likely to disclose (Nzota et al, 2015; Tadesse et al 2014). In a study done in southern Ethiopia revealed marital status of caregiver was a factor linked with disclosure to infected children. The married were unlikely to disclose HIV positive status to infected children (27.3%) as compared to the unmarried (32.3%) (Desta; 2014). Older caregivers are more likely to disclose in comparison to younger ones (Tadesse et al, 2014; Suryavananshi et al., 2014). Caregiver relationship to child affects disclosure immensely. In studies done in Indonesia and Ethiopia findings showed that biological parents had the least disclosure rate compared to others like grandparents, adopted parents, relatives and siblings (Dewi et al., 2017; Desta, 2014). 2.6 Attitudes towards HIV status Disclosure. Quite a number of persons with HIV have a dim view regarding telling out their state. This is because they worry much that other people will be aware of their dreadful state. Some religious beliefs teach that HIV/AIDS is a penalty for bad deeds from the 15 creator. This makes one feel liable and therefore unlikely to disclose his/her HIV positive status for fear of being critisized as unfaithful or adulterous (Dewi et al., 2017). A study done in Nigeria on point of view of clients on disclosure of their HIV sero positive status showed that HIV positive patients fear the aftermath of disclosure such as being stigmatized, being discriminated, being rejected and being degraded by their families and friends. Others include fear of discrimination and stigma from family members; worry that the HIV positive child may tell others (Ebesie et al., 2016; Gyamfi et al., 2017). In another study done in Addis Ababa, Ethiopia, caregivers reported being discriminated by their neighbours. This made caregivers hesitant to disclose to their children for fear of discrimination (Beima et al., 2017). Similarly, HIV infected caregivers were not ready to disclose for fear of the children learning of the caregiver.s HIV status since this would raise a lot of questions on sexuality and moral values (Beima et al., 2017 ; Desta, 2014). A study done in Malawi showed that there is a lot of secrecy in paediatric HIV care settings. This is because most of the time caregivers live in fear of disclosure due to the associated stigma and discrimination. Thus, caregivers have negative attitude towards disclosure (Evelyn Chilemba and Chrissie Phirri, 2017). 2.7 Cultural beliefs about HIV status Disclosure Cultural ideology of different circles explains the right way of truthful disclosure. Some cultural beliefs make people hold back important detail about their HIV positive state for fear of bringing damaging effects. Some communities equate HIV/AIDS with witchcraft, which affects disclosure negatively. Some cultural and religious beliefs can make caregivers hesitant to tell out the HIV state to infected ones. This is because the topic may lead to discussion about issues of sexuality, which is regarded as a 16 taboo in many African settings (Mumburi, 2014). A study carried out in Ghana showed that people behave in a manner not to blemish the image of the larger family or society. This will make such people try as much as possible to protect the position of the family. People are afraid of telling out their HIV positive status due to bad attitude from members of the society (Gyamfi et al., 2017). The reaction may include stigma, labelling and social isolation. The same study showed that in other communities, some sicknesses are seen as very dishonourable. They belief that such illnesses are brought by superhuman powers when one wrongs the „gods „or as a result of breaking communal taboos (Gyamfi et al., 2017). Once people know that one is HIV infected, one is labelled and the society will not be willing to associate with the HIV positive persons. This will change the way people participate in community social activities. In order to avoid being treated negatively or being labelled otherwise, the caregivers will decide to withhold such important information as disclosure to their HIV positive children (Gyamfi et al., 2017). 2.8 Perceived consequences of HIV status Disclosure A huge number of persons infected with HIV are scared of telling out their HIV state to others for varied reasons. The associated stigma and discrimination tops the list. Most caregivers are afraid to disclose citing that telling the child about his/her HIV positive state will lead to revelation of own HIV positive status and this might expose the family to stigma and discrimination (Ingabire and Mutesa, 2014; Namukwaya et al., 2017). Stigma and discrimination towards HIV positive people remains a challenge in Kenya and other countries since HIV is still a condition that invokes shame and condemnation (Turisini et al, 2013). A research done in Ghana revealed the HIV positive persons are labelled and isolated from the larger society (Gyamfi et al., 2017). 17 Another consequence of disclosure to HIV positive children is children blaming the caregivers. Caregivers believe that upon disclosure, the children may blame them asking questions on how they got the infection in the first place (Ingabire and Mutesa, 2014; Enobong and Ofomine, 2016). The HIV positive young ones may see the caregivers as having lived adulterous lifestyle to have HIV (Gyamfi et al., 2017). Caregivers also fear that after disclosure the relationship with the child will be affected, thus fear to disclose (Gyamfi et al., 2017). In another study carried out in Uganda, guardians relayed being afraid that revealing to a child of his or her HIV positive state may lead to the young ones pulling out from active public touch. This would further deprive them of the joy and chance to live a “normal life” (Namukwaya et al., 2017). From Literature review, there is insufficient information on the rate of disclosure in Nairobi. Not much has been done on importance of HIV status disclosure, attitudes associated with HIV positive status disclosure and cultural beliefs in regards to HIV status disclosure in Nairobi as well. Results from this study will add more knowledge on the rates of disclosure in Nairobi, and shed more light on benefits of HIV status disclosure, attitudes towards HIV status disclosure and cultural values about HIV status disclosure. 18 CHAPTER THREE: MATERIALS AND METHODS 3.1 Study design This was an analytical cross-sectional study using both quantitative and qualitative approaches. This study design was used to establish association between exposure and outcome. 3.2 Variables 3.2.1 Dependent Variable HIV sero-status disclosure -children were said to know their status if the guardian said that the child is aware of his/her HIV status. 3.2.2 Independent Variables 1. Socio-demographic and economic attributes such as ages of both caregiver and the child, caregiver marital status, caregiver employment status, caregiver education level, duration since HIV diagnosis in child, caregiver HIV status. 2. Caregiver.s perceived importance of HIV status disclosure. 3. Socio-cultural factors such as cultural beliefs and stigma towards the HIV infected. 3.3 Location of the Study This study took place at Mbagathi District Hospital.s Comprehensive Care Centre (CCC) which is at Nairobi County (Latitude -1.3088; longitude 36.8039), as shown in appendix VI. It took place from November 2016 to May 2017. This CCC offers HIV counselling and testing, care and treatment services for the HIV infected persons (both adults and children). It is one of the high volume centres in Nairobi County with over 300 children active on care. It is in Dagoreti Sub-county and it acts as a referral centre for lower level facilities in Nairobi County. 19 3.4 Study Population. The study population was caregivers to HIV infected children aged 6 to 14 years actively attending services at Mbagathi Sub-County Hospital CCC. This children.s age bracket was used because disclosure should ideally start incrementally from 6 years leading to total disclosure at 10 to 12 years, before they become sexually active (MoH, Guidelines on use of anti-retroviral drugs for Treating and Preventing HIV infection in Kenya, 2016; Maria et al., 2013). Participants for in-depth interviews were used to give more insight on disclosure determinants. A Nurse Counsellor was involved to give more insight from the health provider position on the factors related with HIV positive status disclosure to infected children. 3.5 Enrolment Criteria 3.5.1 Inclusion Criteria 1. Caregivers to HIV positive children between the ages 6 to 14 years getting Comprehensive HIV care at Mbagathi District Hospital. 2. Nurse Counsellors who had stayed at the facility CCC for more than six (6) months and were willing to participate. 3. Those who consented. 3.5.2 Exclusion Criteria 1. Caregivers who revealed to be ill during the research period to participate. 2. Caregivers who were uncomfortable to participate in the study 20 3.6 Sampling Technique and Sample Size Determination 3.6.1 Sampling Technique The research location was identified by first purposively selecting Nairobi County out of 47 Counties because the County houses the Country.s largest City, diverse with a huge population from all other parts with different cultural backgrounds, with a prevalence of 6.1% thus ideal for conducting such a study. Nairobi County has four Level 4 (Sub-county) hospitals, which act as the County Referral Hospitals. These four are Pumwani Maternity Hospital, Mbagathi Sub- County Hospital, Mama Lucy Kibaki Hospital and Mutuini Sub-County Hospital. Of the four Sub-County Hospitals, Mbagathi was purposively selected due to its high numbers of HIV infected children on care. Every child visiting the CCC during the study period was used to get the caregivers (study participants) and those caregivers who met the criteria of inclusion being included until the required sample size was attained. A trained research assistant was engaged to recruit the participants. The research assistant was stationed at the pharmacy and liaised with the health care workers to refer caregivers of HIV positive children to the study at the end of routine services. The caregivers were taken through an overview of the study before going through the eligibility criteria to determine their eligibility into the study. Upon establishing that a parent/guardian was an eligible participant, we also confirmed that they are prepared and comfortable to take part. The parent/guardian would then be enrolled into the study until the wanted number was reached. Participants for in-depth interview (caregivers and Nurse Counsellor) were purposively selected until the required 21 number was attained. They were also taken through an overview of the study and those who consented were enrolled in the study. 3.6.2 Sample size Determination. Caregivers to children aged between 6 and 14 years actively attending services at the Hospital CCC represented the accessible population for the study. Out of this population a representative sample size was drawn by using Fischer et al (1998) formula as below; n=(z2x p x q)/d2 Where n=Sample size, z=critical value associated with 95%confidence interval (1.96), p=Prevalence of HIV status disclosure in children in Nairobi (19%) q=1-p (0.81) d=margin error (0.05). n= (1.962 x 0.19 x 0.81)/0.052 =236 Since the number of caregivers in Mbagathi is less than 10,000, the above sample was adjusted by use of the finite correction formula as shown nf = n/ 1+n/N Where; nf= the desired sample size for population <10,000 n= the calculated sample size 22 N = the total population So nf= 236/ 1+236/4902 = 225 To cater for non-response 10% of the sample was added (Glenn, 1992), thus making it 248. Purposeful sampling, which was based on the capacity of the participant to provide the required details, was used to select participants for in-depth interviews. Four caregivers (two each of those who had done disclosure and not done disclosure to their children) and one Nurse Counsellor at the facility CCC were used for the in- depth interview. The total sample of five was used because since the facility population is homogeneous and saturation is likely to be reached with that number. 3.7 Data collection tools. Information on socio-demographic and economic factors, cultural factors and caregivers. perceived importance of HIV status disclosure was collected using semi- structured questionnaire (see appendix I). In-depth interview guide (see appendix III, IV and V) was used to carry out in-depth interviews at the CCC on five participants (two caregivers who had disclosed, two caregivers who had not disclosed and one nurse counsellor). 23 3.8 Pre-testing of tools 3.8.1 Validity Validity is the degree to which a test measures what it is supposed to measure. It was ensured through use of an expert to establish the face validity of the questionnaire. Further, a pilot study was conducted out at Mama Lucy Kibaki Hospital and use of well-structured questionnaires. 3.8.2 Reliability Reliability is the extent to which the instruments yields the same results on repeated trials. It was ensured through proper selection and training of research assistants before data collection. The sample size was as representative as possible. 3.9 Data collection Techniques Semi-structured questionnaire (which had both open ended and closed ended questions) was used to collect data. Those who could not understand English language had the questionnaire translated into Swahili and then back to avoid distortion of the meaning. Questions were clear and specific in that each respondent was able to answer. Caregivers who met the inclusion criteria to take part in the research gave consent and were enrolled upon signing the consent form. Participants were given general information on the study, explained to about confidentiality and that they are free to opt out of study. Data quality was ensured by the investigator by counter checking through the questionnaire right away after every interview, before the caregiver left the clinic. 24 In-depth interviews were done to give more insight providing data related to sociodemographic and economic factors, socio-cultural factors and caregivers. perceived importance of HIV status disclosure from selected respondents using an in-depth interview guide. Informed consent was taken from the participants who met the inclusion criteria of the study. Those who accepted to take part in the study were enrolled upon signing an informed consent form. Data was collected by taking notes and by use of a recorder (after reassuring the participants about the purpose of use the recording device). 3.10 Data analysis 3.10.1 Quantitative Data analysis Data collected was analysed with statistical Packages for Social sciences (SPSS) Statistic 17.0. Chi square was used to find out statistical significance of association between independent variables and disclosure. Regression analysis was used to establish the predictors of HIV status disclosure. 3.10.2 Qualitative Data analysis Transcription of the recorded in-depth interviews was done, edited and read several times to gain familiarity. Components of texts were created representing the main themes that came up during data collection. Each component was then coded in line with research questions and objectives. A summary of recurring codes was then created. The coded transcripts were arranged according to emerging themes. This was done on a computer spreadsheet. 25 3.11 Logistical and Ethical Considerations An approval was requested from Kenyatta University Graduate School. Ethical clearance was then obtained from Kenyatta University Ethical Review committee. Permit was acquired from the National Commission for Science, Technology and Innovation (NACOSTI). Further permission was gotten from the Ministry of Health and the Hospital in-charge/administration. In addition, this study adhered to the legal and ethical requirements stipulated in the Kenya HIV/AIDS Prevention and Control Act (ACT No. 14 of 2006) for conducting research on HIV/AIDS. Specifically, Part V, Section 22 concerning confidentiality, states, “No person shall disclose any information concerning the result of an HIV test, or assessment/research unless consent is given. If that person is a child, this shall be done with written consent of the parent or legal guardian of that child.” and section 40, Sub-section 2 of the Act states, “The person whose consent is sought to be obtained in Sub-section 1 shall be adequately informed of the aims, methods, anticipated benefits and the potential hazards and discomfort of the research.” Therefore, participants were first informed of the aims, methods, benefits, and potential discomfort that may result from the research for them to give consent. The participants were also informed that the research results would not disclose their HIV status, (see informed consent form Appendix II). Anonymity of all respondents was assured and maintained by using unique client identification numbers/codes rather than names. All documents containing information obtained from the participants 26 were only be accessible to the investigator and assistants and sorely used for the purpose of this research. 27 CHAPTER FOUR: RESULTS This chapter depicts the outcome of this research. It begins by depicting the socioeconomic and demographic attributes, then its outcome, arranged as per the objectives. 4.1 Socio-demographic and economic attributes of the Participants The socio-economic and demographic characteristics are summarized in Table 4.1. The study enrolled 254 caregivers (participants). A higher proportion of the participants were married (46.9%) compared to those who were single (22%). The average participant.s age was 37 years. A higher proportion was aged between 36-45 years (47%). More than half of the caregivers (67.3%) were biological guardians to the HIV infected children. Most of the caregivers were HIV positive (67.2%) and the greater part were Christians (96.5%). 50% of the children were female and the better part was aged between 10-14 years (78.8%) 28 Table 4.1: Socio-demographic and economic attributes of the participants and their children Variable N Gender of Child Male 126(49.6%) Female 128(50.4%) Age of child (years) Mean =10.5; SD =3.0 6-9 54(21.3%) 10-14 200(78.7%) Age of Caregiver (years) Mean=37; SD=7.4 18-25 13(5.1%) 26-35 92 (36.2%) 36-45 119(46.6%) >45 30(11.8%) Marital Status Married 119 (46.9%) Divorced/ Separated 40 (15.7%) Single 56 (22.1%) Widowed 39 (15.4%) Religion Christian 245(96.5%) Muslim 9 (3.5%) Education level Primary 34(13.4%) Secondary 140 (55.1%) College/University 80 (31.5%) Employment status Employed 129 (51%) Self employed 104(41%) Unemployed 21(8%) Relation to child Parent 171(67.3%) Sibling 15(5.9%) Relative 68(26.8%) Caregiver HIV Status Negative 83 (32.8%) Positive 171(67.2%) 4.2 HIV Sero-status Disclosure to children Overall, 91 (36%) caregivers had disclosed to their children (Fig. 3). Of those, the majority (78%) reported to have disclosed with the assistance of a health care worker, while 22% reported that the caregiver disclosed without external help. 29 Disclosed, 36% Not disclosed, 64% Disclosed, 36% Not disclosed, 64% Figure 4.1: Proportion of guardians who have disclosed HIV Sero-status to their children During in-depth interviews, caregivers stated various reasons that encouraged them to disclose. Such included child enquiring why s/he is taking drugs and poor adherence that pushed the caregivers to disclose. “My child was asking me why he is taking drugs. Sometimes he would take drugs well, other times he would refuse to take. This pushed me to disclose to him” (33year- old female peer educator, HIV positive) “She was not taking her drugs well. She was telling me to give her siblings drugs as well. This made me to consider disclosure seriously” (46-year-old female, HIV positive) “Disclosure will help children in improving on adherence to treatment. Planned Disclosure helps prevent accidental disclosure...I am hearing it from the right person.” (42-year-old female, psychological counsellor) Caregivers who had not disclosed gave reasons as to why they had not disclosed. Such ranged from fear of health consequences to feeling guilty (Figure 4). The two main reasons cited were „child is too young to understand. (47%) and „child may disclose to other people. (30%). 30 47% 30% 13% 10% 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50% Child too young to understand May disclose to other people Fear of health consequences Feel giulty % Responses Reasons for not disclosing 47% 30% 13% 10% 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50% Child too young to understand May disclose to other people Fear of health consequences Feel giulty % Responses Reasons for not disclosing Figure 4.2: Reasons for not disclosing The same reasons were also reported in in-depth interviews. Such included child being too young to understand, disclosure seen as not important to the child and caregivers fearing blame from the children. When asked why they are reluctant to disclose, participants had the following to say: “My child is too young to understand” (39-year-old female, HIV positive). “I thought that the information is not important to the child… the child might disclose to other people and thus I get stigmatized” Another reason was fear… I did not know how my child would behave on disclosing to him his HIV positive status. (48-year-old male, HIV positive) “It will be difficult to explain to the child how she got the infection” (33-year-old female peer educator, HIV positive). “The children will blame the parents for infecting them” (46-year-old female, HIV positive). 4.3 Caregivers’ Perceptions of Importance of Disclosure to HIV positive children Participants were asked to rate importance of disclosing to children (from very important to not important at all). A high proportion of the participants (72%) 31 thought it was very important while 1.2% thought it was not important to disclose to children (Figure 5). 184 61 6 3 0 0 20 40 60 80 100 120 140 160 180 200 Very important Important Neutral Not important Not important at all Caregivers' importance of disclosure % Response Figure 4.3: Caregivers’ perceptions of importance of Disclosure Caregivers were further asked why they thought disclosure is important. Reasons reported by the participants ranged from „it helps to reduce chances of accidental disclosure. to “it helps in the psychosocial development of the child” (Figure 4). Among the caregivers who had done disclosure to their children, 72.5% said that their children had an adherence to treatment after knowing their HIV status. 32 38.3% 33.3% 19.7% 6.3% 1.7% 0.3% 0.3% 0.0% 5.0% 10.0% 15.0% 20.0% 25.0% 30.0% 35.0% 40.0% 45.0% Reduces accidental disclosure Iimprove adherence Cope with disease Open to HIV discussion Overcome depression Help HIV prevention Help psychosocial development Perceived reasons for the importance of disclosure % Responses 38.3% 33.3% 19.7% 6.3% 1.7% 0.3% 0.3% 0.0% 5.0% 10.0% 15.0% 20.0% 25.0% 30.0% 35.0% 40.0% 45.0% Reduces accidental disclosure Iimprove adherence Cope with disease Open to HIV discussion Overcome depression Help HIV prevention Help psychosocial development Perceived reasons for the importance of disclosure % Responses Figure 4.4: Perceived reasons for the importance of disclosure to child During in-depth interviews, the same perceptions were reported and included disclosure improving adherence and disclosure helping a child cope with disease. Participants had this to say: “Disclosure improves adherence to medication...if not disclosed to, the child doesn’t want to take drugs, but when they know the reason why they are taking the drugs, adherence is very okay” (33-year-old female peer educator, HIV positive) “It helps child overcome the fear that HIV kills immediately” (48-year-old male, HIV positive) “Disclosure helps a child cope with the disease. Some of these children have suffered a lot. They have been sick on-and-off. Disclosure opens them up; they become free to discuss HIV with the guardian. Gives a child a sense of responsibility, they own their own health care, helps prevent accidental disclosure ...I am hearing it from the right person”. (42-year-old female psychological counsellor) “Disclosure improves adherence, children become responsible and they remind themselves and other members of the family when to take drugs”. (46-year-old female, HIV infected) 33 4.4 Caregivers’ Perceptions on effects of socio-cultural factors on disclosure When asked how socio-cultural factors influence disclosure, caregivers reported that the misconceptions about HIV/AIDS that result in stigma and discrimination greatly influenced the decision to disclose. The most cited misconceptions were that being HIV positive was seen because of promiscuity (67%), or of God.s punishment (17%) or that, the family is bewitched (16%). Of the 163 caregivers who had not disclosed, 61% said that socio-cultural factors had influenced their decision not to disclose, while 39% said socio-cultural factors had not influenced their non-disclosure decision. 120% % Responses 100% 80% 60% 40% 20% 0% Yes, 61% No, 39% Influence of Socio-cultural factors Figure 4.5: Effect of socio-cultural factors on HIV positive status disclosure Caregivers who had not done disclosure to their children gave various forms of stigma they thought they would face after disclosing. Such forms cited included isolation 34 from friends and family, being called names, being negatively talked about and rejection by spouse or family. 2.2% 7.9% 13.6% 19.4% 21.1% 35.8% 0.0% 10.0% 20.0% 30.0% 40.0% Hard to get partner Name calling Rejection by family/spouse Negatively talked about Blame for child's infection Isolation by friends % Responses Forms of stigma Figure 4.6: Forms of Stigma caregivers thought they would face after disclosure The issue of socio-culturally driven misconceptions and the resulting stigma and discrimination influencing disclosure was reported during in-depth interviews. Such included caregivers fearing to disclose because they will be seen as promiscuous, caregivers hesitating to disclose because they will be seen as being punished by God, among others, as shown below. “Parents do not want to disclose because they will be termed as promiscuous by the children… HIV is viewed as witchcraft” (39-year-old female, HIV positive). “If the culture views HIV infection as promiscuity, caregivers fear because they don’t want to be labelled as promiscuous, thus reluctant to disclose to child...The child will view me the way the community views me. Some clients say HIV in their culture is 35 viewed as promiscuity; they were unfaithful that is why they are infected” (42-yearold female psychological counsellor). “HIV is seen as a punishment for what you are not doing right. HIV is seen as a curse…maybe when one or two members of your family have passed on, people will look at it as a curse to that family” (48-year-old male, HIV positive). “In our culture, HIV is seen as a punishment from God… and also as a result of promiscuity.” (46-year-old female, HIV positive). 4.5 Factors that influence disclosure of HIV status to children Chi-square test of independence was done to show relationship between socioeconomic and demographic variables and disclosure in HIV infected children accessing care at Mbagathi Hospital, Nairobi. The variables tested included child.s age, child.s sex, duration of care (years), religion, marital status, education level, occupation and caregiver HIV status, caregiver relationship to child, caregiver.s perceived importance of disclosure and socio-cultural influence on disclosure. Age of child (X2= 38.3; df=1; p= 0.001), child.s duration on care in years (X2 = 25.1; df= 2; p=0.001), age of caregiver (X2= 20.9; df=3; p=0.001), perceived importance of disclosure (X2= 8.7; df=1; p=0.003) and fear of stigma and discrimination affecting disclosure decision (X2 = 1.24; df=1; p=0.008), were significantly associated with of HIV positive status disclosure to infected children, as shown in Table 4.2 below. 36 Table 4.2: Chi Square test of independence between categorical variables and disclosure Variable Disclosure X2 df p- value No Yes Sex of child 0.0505 1 0.822 Female 83(65%) 45(35%) Male 80(63%) 46(37%) Age of child 38.3 1 0.001 5-9yrs 46(85%) 8(15%) 10-14yrs 109(56%) 91(44%) Age of caregiver 20.9093 3 0.001 16-25yrs 9(60%) 6(40%) 26-35yrs 72(80%) 18(20%) 36-45yrs 68(57%) 51(43%) >45yrs 12(40%) 18(60%) Relationship to child 3.317 2 0.19 Relative 44(65%) 24(35%) Sibling 8(53%) 7(47%) Parent 111(65%) 60(35%) Religion:0.3014 1 0.583 Christian 152((65%) 83(35%) Muslim 10(53%) 9(47%) Caregiver HIV status 3.432 1 0.402 HIV Negative 50(60%) 33(40%) HIV Positive 113(66%) 57(34%) Marital status 3.5992 3 0.308 Married 83(70%) 36(30%) Divorced/separated 22(55%) 18(45%) Single 35(63%) 21(37%) Widowed 23(59%) 16(41%) Caregiver education level 1.4024 2 0.496 Primary 19(56%) 15(44%) Secondary 90(64%) 50(36%) Tertiary 54(68%) 26(32%) Duration in care (years) 25.0555 2 0.001 <1yr 23(77%) 7(33%) 1-5yrs 34(91%) 8(81%) >5yrs 101(55%) 81(45%) Caregiver employment Status 5.3473 3 0.069 Employed 85(66%) 43(34%) Self employed 67(65%) 36(35%) Unemployed 11(48%) 12(52%) Partner HIV status 0.1745 1 0.676 HIV Negative 21(70%) 9(30%) HIV Positive 46(66%) 24(44%) Perceived importance of disclosure 8.713 1 0.003 No 55(79%) 15(21%) Yes 108(59%) 76(41%) Influence of Socio-cultural factors on disclosure -HIV infection seen as a result of promiscuity affecting disclosure decision 23.12 1 0.223 37 No 74(33 %) 22(45%) Yes 110(82%) 48(18%) -HIV infection seen as God’s punishment 7.69 1 0.18 No 108 (51%) 102(49%) Yes 28(64%) 16(36%) -Fear of stigma and discrimination affecting disclosure decision 0.124 1 0.008 No 44(59%) 32(41%) Yes 108(61%) 70(39%) -HIV infection seen as family being bewitched affecting disclosure decision 0.598 1 0.439 No 84(60%) 56(40%) Yes 74(65%) 40(35%) 4.6 Regression analysis of Socio-economic and demographic determinants of HIV sero-status disclosure to HIV infected children accessing care at Mbagathi Hospital. Logistic regression was used to assess association between socio-demographic and economic characteristics and disclosure, as shown in Table 3 below. Variables tested were only those found to be correlated with disclosure in the Chi-square test, which included child.s age, caregiver.s age, child.s duration of care, caregiver.s perceived importance of disclosure and influence of socio-cultural factors on disclosure. Children aged 10-14 years were 10.97 times more likely to be disclosed to in comparison to children aged 6-9 years (OR=10.97; 95% CI=5.7-21.2; p =0.001). Longer duration on HIV care increases chances of a child knowing his/her status. It is 1.03 times more likely for those who have been on care between 1-5 years and 2.7 times more likely for those who have been on care for more than 5 years in comparison to children who have been on care for less than a year (OR=2.7; 95% CI=1.6-4.7; p =0.001). Caregivers who perceived disclosure as important were 2.58 times more likely to tell their children about their HIV infection in comparison to caregivers who did not (OR=2.58; 95% CI= 1.36-4.90; p=0.004). Caregivers who felt 38 that they would face stigma and discrimination resulting from socio-culturally driven misconceptions were 0.61 times less likely to do disclosure in comparison to those who felt they will not face any stigma and discrimination on disclosing (OR=0.61; 95% CI=0.3-1.0; p=0.008). Table 4.3: Regression analysis of socio demographic and economic characteristics of HIV sero status disclosure to infected children accessing care at Mbagathi Hospital Variable Odds Ratio 95% Confidence Interval p-value Age of child (years) 6-9* --- 10-14 10.97 5.7-21.2 0.001 Age of caregiver 18-25 yrs.* --- 26-35 yrs. 0.55 0.15-1.98 0.358 36-45 yrs. 1.69 0.49-5.79 0.405 >45 yrs. 3.38 0.84-13.49 0.085 Duration of care (years) < 1yr* --- 1-5 yrs. 1.03 0.36-1.67 0.233 >5 yrs. 2.7 1.6-4.7 0.001 Perceived importance of disclosure No* --- Yes 2.58 1.36-4.90 0.004 Influence of socio-cultural factors on disclosure -Fear of stigma and discrimination affecting disclosure decision No* -- Yes 0.61 0.3-1.0 0.005 *Reference category 39 CHAPTER FIVE: DISCUSSION, CONCLUSIONS AND RECOMMENDATIONS 5.1 Introduction The study.s aim was to find out the factors that affect disclosure among caregivers to HIV positive children in Nairobi, seeking to understand why most guardians are hesitant to disclose to their children. This study found disclosure rate to HIV infected children accessing care at Mbagathi Hospital is low, at 36%. Age of child, child.s duration on care, caregiver.s perceived importance of disclosure and influence of socio-cultural factors were found to significantly influence disclosure to HIV positive children. 5.2 Discussion 5.2.1 HIV Sero-status Disclosure to Children The findings showed a low rate of disclosure among HIV infected children at Mbagathi, (36%). This is comparable to other studies done in Ethiopia (33.3%), Nigeria (29%), Western Kenya (11.1%), Thailand (21%) and Uganda (31%), (Ubesie et al.,2016; Enobong and Ofomine, 2016; Yezihalem et al., 2015; Nzota et al., 2015; Vreeman, 2014; Atwiine et al., 2014; Desta, 2014; Turisini et al., 2013; Sirikum et al., 2014). However, higher rates of disclosure have been reported in other studies carried out in Uganda (56%), Rwanda (64%) and Indonesia (43.2%) (Namasopo-oleja et al., 2015; Ingabire and Mutesa, 2014; Dewi et al., 2017). Low rates of disclosure have been attributed to several reasons, including caregivers believing children are too young to understand, caregivers believing that disclosure can lead to negative emotional consequences for the child and caregivers saying that they are hesitant to disclose to avoid stressing and hurting the child (Namukwaya et al., 2017). Others 40 include fear of discrimination and stigma from family members, worry that the child might tell other people (Ebesie et al., 2016; Gyamfi et al., 2017), caregivers fearing blame from the children (Enobong and Ofomine, 2016; Yezihalem et al., 2015) and caregivers lacking of ability to disclose (Madiba, 2016). In this study, the main reasons for non-disclosure were the view that the children were too young to be told of their HIV status, fear of adverse health outcome like depression and fear of the child accidentally telling other people leading to stigma and discrimination. Caregivers fear that young children do not understand the magnitude of the infection and the stigma and cultural beliefs surrounding HIV infected people, hence may tell their status to other family members and friends without knowing the resulting negative consequences. Furthermore, even after being told not to tell others, young children may also accidentally tell their status to friends and other family members. This will in turn bring stigma and discrimination to the family from other family members and the community at large. Stigma and discrimination towards HIV positive people remains a challenge in Kenya where the stigma and discrimination index is 45 (The National HIV/AIDS stigma and discrimination index, 2016) and where HIV is still a condition that evokes shame and condemnation (Turisini et al, 2013). The most common types of stigma and discrimination reported in this study were isolation, blame and being negatively talked about. The low rates of disclosure have several implications. HIV infection is kept as a family secret hence poor adherence to treatment for both the caregiver and the child. This might lead to drug resistance and death, which is a setback to HIV management (Ubesie et al., 2016). Children who live with HIV but are not aware of the infection are more likely to have low self-esteem, affecting their HIV management, hence bad 41 treatment outcomes (Ubesie et al., 2016). If disclosure is delayed until older age, children are likely to reach adolescence without knowing their HIV status. This poses a risk of transmitting the infection to others (Mandalazi et al., 2014; Mumburi et al., 2014). Children might also find out their HIV status in a manner that is not supportive, resulting in negative health consequences like depression, affecting child.s HIV management (Sahay, 2013). This calls for development of a guideline that provides age appropriate ways to disclose to children of different ages, to help caregivers disclose early. Of the caregivers who had disclosed, the majority reported to have disclosed with the assistance of a health care worker, while a low proportion reported that the caregiver disclosed without external help. This concurs with a study in India where majority of children who had been disclosed to learnt their status from the help of a health care worker (Ekstrand et al., 2017). This is because the caregivers felt un-empowered to correctly pass the information to the children regarding their HIV status. However, this differs with a study done in Ethiopia where a high proportion of the children were disclosed by their caregivers (Yezihalem et al., 2015). In another research carried out in Ethiopia, 60% of the caregivers believed that disclosure to infected children was the role of the health care workers (Biadgilign et al., 2012). The risks of health care workers disclosing to the children outweigh the benefits; if disclosure is left to health care workers, it will be done at the right age and the children will get the right information (Ekstrand et al., 2017). However, often the children would like to hear it from the right person, that is, the parent. Caregivers lack the confidence and capacity to disclose, that is why they delay disclosure, arguing that telling them of their HIV infection status will lead to 42 disclosure of own HIV positive status and this might expose the family to stigma and discrimination (Ingabire and Mutesa, 2014). In the event that the parent dies before disclosure happens, the chance is missed for children to have a sitting with the parent and talk about the infection (Mandalazi et al., 2014). With development of disclosure guidelines, caregivers will be empowered and guided on how to disclose at the appropriate age. 5.2.2 Caregivers’ Perceptions on the importance of Disclosure Disclosure has many benefits to the child and the caregiver. It helps in overall psychosocial development of the child, improving treatment outcomes (Das et al., 2016; Gyamfi et al., 2017). Children who have been well told of their HIV infection status early cope better and are likely not to have psychological issues (Namukwaya et al., 2017). They are also less likely to report psychological distress (Lowenthal and Marukutira, 2016). With disclosure, adherence is optimal since children are involved in their treatment and appointments, creating better dialogue among the infected adolescent, caregiver and health care workers (Turissini et al., 2013; Lowenthal and Marukutira, 2016). If adherence is poor due to non-disclosure, anti-retroviral resistance is more likely to occur and the children will have limited treatment options to switch to. Disclosure is associated with safer sex behaviors in adolescents (Namukwaya et al., 2017). With non-disclosure and early sexual debut, transmission of already resistant virus from non-adherent adolescent may occur, leading to increased AIDS-related illnesses and deaths which is a setback to HIV management (Lowenthal and Marukutira, 2016; Turissini et al., 2013). Disclosure is associated with improved adherence to medication. This is comparable to other studies that have indicated that disclosure can increase medication adherence in children and affects a 43 child.s ability to engage and maintain medical treatment (Namasopo-oleja et al.,2015; ; Atwiine et al.,2014; Ingabire and Mutesa, 2014; ). This is because the children know why they are taking the drugs hence more likely to comply (Atwiine et al, 2014; Yezihalem et al., 2014). In this research, majority of the caregivers believed it was very important to disclose to their HIV positive children. However, this did not translate into the actual practice of disclosure, since more than half had not disclosed to their children. This concurs with a study done in Ethiopia, which showed that caregivers reported disclosure to be important but disclosure rate among them was only 33.3% (Tadesse et al., 2014). This means that knowing the importance of disclosure to children is not enough to influence the actual practice of disclosure. Other factors like socio-cultural misconceptions leading to stigma and discrimination, child being too young to understand, caregivers fearing that the children may tell others and caregivers finding it difficult to explain to the child how he/she got the infection have had stronger influence on disclosure in this study. Health care workers addressing such factors above together with giving information on importance of disclosure will help caregivers disclose. 5.2.3 Socio-demographic and economic factors influencing disclosure Age of child was identified as a factor influencing disclosure with most caregivers more likely to delay disclosure until children were older (10 years and above). This concurs with results of studies in Western Kenya, Ghana, Ethiopia, Nigeria and India, which indicated that it was more common for older children to know their status than younger ones (Dewi et al, 2017; Ubesie et al., 2016). This is likely because of increasing age, autonomy and responsibility for self-care that required a child to be 44 told why they are taking the drugs (Dewi et al, 2017; Ubesie et al., 2016). Most of the caregivers consider children less than 10 years as childish and unable of understanding their illness (Suryavananshi et al., 2014; Gyamfi et al., 2017; Vreeman et al, 2014; Ubesie et al., 2016; Yezihalem et al., 2015; Negewo Desta, 2014; Amare et al., 2013). The Kenya care and treatment Guidelines (2016) recommends disclosure to be initiated from an early age with partial disclosure at 5 to 8 years, then full disclosure between 9 to 12 years. This study revealed children as old as 14 years that were not aware of their HIV status. Caregivers delaying disclosure to older ages could result in children not adhering to medication, as they do not see the need to take the drugs. This could cause to drug resistance and death due to poor management of the disease (Ubesie et al., 2016; Turissini et al., 2013). If the children are not disclosed to early, they may know their HIV positives status from someone else other than the parent. They may not trust their parent anymore, and experience trauma and depression (Mandalazi et al., 2014; Mumburi et al., 2014). In the event that the parent dies, the chance is lost for children to discuss their illness with that parent. Early disclosure is necessary for prevention. The World Health Organization (WHO) defines an adolescent as any person between ages 10 to 19 years. If not disclosed to early, children could reach adolescence without knowing their HIV status. Many adolescents start having sex as early as 12 years prior to learning about their status, and they risk infecting others (Mandalazi et al., 2014; Mumburi et al., 2014; Sahay, 2013). This means that age of the child is an element influencing disclosure and both caregivers and health care workers should be cognizant of age of child when initiating disclosure. When the child is of age, full disclosure will be easy for the caregivers to do. 45 Disclosure is more likely with increasing duration on HIV care and treatment of the child. Caregivers of children who have been on HIV care and treatment for 5 years and above are more likely to know their status as compared to those of children in HIV care for less than 5 years. This concurs with studies in Ethiopia, which showed that children with less than 5 years since HIV diagnosis were unlikely to know their HIV status in comparison to those diagnosed 5 or more years ago (Yezihalem et al., 2015; Tadesse et al, 2014; Amare et al., 2013). The reason for this is that children who have been on care and treatment longer have contact that is more regular with health workers as a function of the clinical follow-up. During these regular visits, the children may get information informally from the hospital environment. In addition, children tend to repeatedly question why they are always taking pills, prompting caregivers to tell them of their status (Yezihalem et al., 2015). Such children are more likely to own their care and adhere more to their medication and treatment appointments. Early enrolment of infected children into HIV care and treatment programs could be key to facilitating disclosure at the appropriate age and in a manner that is supportive given the regular contact of both the children and caregivers with trained professionals. Age of caregiver, caregiver marital status, caregiver employment status, caregiver relationship to the child and caregiver HIV status did not show any significant association with disclosure in this study. This differs with studies done in India where caregivers above 35 years were reported to be more likely to disclose in comparison to those below 35 years (Suryavananshi et al., 2014; Mandalazi et al., 2014). This could be because in the Indian study participants were strictly 20 years and above compared to this study where caregivers included those from ages 18 years. This also 46 differs with a study done in Ethiopia which reported that the married were less likely to disclose compared to the unmarried/separated (Desta, 2014). This could be because in the Ethiopian study only primary caregivers were recruited in the study, but in this current study even non-primary caregivers were included in the study and this could have contributed to the difference. On caregiver employment status, this study differs with studies done in Ethiopia that reported that children from families where the caregivers were not employed were more likely to know their HIV positive status, because such families rely a lot on support from organizations and well-wishers. This could be because the Ethiopian study was carried out in rural setting thus many caregivers might have been unemployed. Further, only 98 caregivers participated in the study compared to 254 in this study hence showing different results. Regarding caregiver relationship to child, this study is contrary to a study carried out in Indonesia which reported that biological parents had the least disclosure rate compared to others like grandparents, adopted parents, relatives and siblings (Dewi et al., 2017; Desta, 2014; Amare et al., 2013). In the Indonesian study, results showed that three quarters were biological parents, whereas in this study biological caregivers contributed to 67% of the participants hence the difference in study findings. On caregiver HIV status, this study differs with studies conducted in Ethiopia and Ghana which reported that caregivers with HIV negative or not knowing their status were six times and eight times respectively, more likely to disclose to their HIV infected children than the HIV infected caregivers (Desta 2014). The difference in this could be because in the Ethiopian and Ghana studies, only primary caregivers were included in the research. In this study any adult accompanying the child to the hospital was included in the study, hence could have affected the study outcome. 47 5.2.4 Socio-cultural factors influencing disclosure of HIV to infected children at Mbagathi Hospital Influence of fear of stigma and discrimination affecting disclosure decision was significantly associated with non-disclosure to infected children receiving care at Mbagathi Hospital. Caregivers who thought they would be discriminated after people know the status of their infected children were less likely to o disclosure. This is in agreement to a study done in Ghana that showed HIV remain a supernatural illness imposed by the superhuman due to offenses committed, thus influenced disclosure greatly (Gyamfi et al., 2017). In this study, caregivers gave various reasons on how they thought culture would influence disclosure. Such included HIV being seen as witchcraft, the HIV infected being seen as promiscuous, the HIV infected being seen as being punished by God among others. This implies that in this study, caregivers who face socio-culturally driven misconceptions resulting to stigma and discrimination are less likely to disclose to their infected children. Addressing these socio-culturally driven misconceptions at the community through health education and through social media by demystifying HIV can help promote disclosure to infected children. 5.3 Conclusions Based on the objectives and the outcome of the research the following conclusion can be drawn: i) Disclosure rate among HIV positive children accessing care at Mbagathi Sub- County Hospital, Nairobi is low (36%). ii) Though majority of the caregivers perceived disclosure as important, this did not translate into high rates of disclosure. 48 iii) Age of child, child.s duration on care and caregivers. perceived importance of disclosure were significantly associated with disclosure. iv) Socio-culturally driven misconceptions about HIV leading to stigma and discrimination influenced disclosure decision negatively. Caregivers were worried that they would be discriminated if people knew HIV status of their children. 5.4 Recommendations 5.4.1 Recommendation from the study i) The low rates of disclosure were mainly due to caregivers concerns about the consequences of disclosure and the appropriate approach to use. There is need for the Ministry of Health to develop a disclosure guideline in Kenya with modules for health care workers and caregivers, focusing on how and importantly when disclosure to child should be done. This will empower guardians to tell their HIV positive children of their status at the appropriate age and in an appropriate manner. ii) There are other factors, such as stigma and discrimination, that have a stronger influence on disclosure and that outweigh its perceived importance to the health of the children. There is need for the Ministry of Health to address such factors at national, community and health facility level. iii) Given that caregivers delay disclosure until 10 years and above, which is contrary to the WHO recommendations, there is a great need for health care workers to work closely with caregivers to help empower them start partial disclosure at the appropriate age. In addition, prompt enrolment of HIV positive children to care and treatment programs will facilitate to age-appropriate disclosure before they reach adolescence. 49 iv) It is crucial for health care workers to give health education in hospitals, communities and school settings on HIV transmission modes, promote anti-HIV stigma campaigns in schools and communities, to help alleviate stigma and discrimination arising from HIV infection, which some caregivers attribute to lack of disclosure to their children. At the National level, there is need to intensify programs to safeguard against discriminatory acts, thus discouraging stigma and discrimination that will further promote disclosure. 5.4.2 Recommendations for further research This study highlighted that majority of caregivers perceived disclosure as important, though only a small number had disclosed. Further qualitative study need to be done to know in depth, which other factors have stronger influence on disclosure to HIV positive children by caregivers. This is because caregivers had not disclosed despite them knowing the importance of disclosure to their children. 50 REFERENCES Atwiine B, Kiwanuka J, Musinguzi N, Haberer J.E, 2014, Understanding the role of age in HIV disclosure rates and patterns for HIV infected children in Southwestern Uganda, AIDS Care, 27(4), 424-30, doi: 10.1080/09540121.2014.978735. Beima-Sofie, Kristin M, Brandt Laura, Hamunime Ndapewa, Shepard Mark, Uusiku James, John-Stewart, Grace C.,O'Malley Gabrielle. 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Retrived from https://www.unicef.org/kenya/hiv-andaids Yezihalem Tamir, Mekonen Aychiluhem and Dube Jara, 2015, Disclosure status and associatedfactors among children living with HIV in East Gojjan, Northwest of Ethiopia, Quality in primary care, 23(4):223-230. 55 APPENDICES Appendix I: Questionnaire To be administered to Parent/Guardian. 1. Child.s unique Number___________________________ 2. Age of Child in years_______________________ 3. Gender of the child________________________ 4. Relationship to child________________________ 5. Period since child.s first HIV positive test_____________ 6. How old are you? . Below 18 years . 18 – 25 . 26 – 35 . 36 – 45 . 45 and above. 7. What is your religion? . Christian . Muslim . Other, specify_________________ 8. What.s your current marital status? . Married . Single . Widowed . Divorced . 56 9. What.s your HIV status? . Negative . Positive . Unknown 10. What.s your education level? . None . Primary . Secondary . College/University 11. What.s your occupation? . Employed . Self employed . Unemployed . Student . Others, specify__________________ 12. What is your partner.s HIV status? . No partner . Negative . Positive . Don.t know 13. (a) Are people living with HIV/AIDS stigmatised at your community? . Yes . No If no go to Q14 57 (b) If Yes, how? . Social isolation/avoidance by friends . Name calling . Talking bad things about the HIV infected. . Blamed for being responsible for others. HIV status . Rejection by spouses/family . Dismissal from job . Being denied access to quality health care . Hard to get a partner . Others, specify____________________________________ (c) How does this stigma influence HIV status disclosure? . Caregivers are hesitant to disclose to infected children because the children may tell others. . Caregivers are hesitant to disclose to infected children for fear of being blamed by the children. . Caregivers are hesitant to disclose because their children will think they are immoral. . Others, specify__________________________________________ 58 14. (a)How does your culture view HIV infection and those infected by HIV? . HIV infection as witchcraft . HIV infection as a Curse . Punishment from God . Ancestors are unhappy . HIV as a result of promiscuity. . Other, specify_____________________________________________ (b) How does this cultural view influence HIV positive status disclosure? . Caregivers are hesitant to do disclosure to their children as they will be seen to be promiscuous. . Caregivers are reluctant to disclose to their HIV positive children because the children will think the parents are being punished by God . Caregivers are reluctant to disclose to their HIV positive children because the children will think that the family is bewitched. . Other, specify_____________________________________________ 15. How important is it to do disclosure to a child his/her HIV positive status? . Very important 5 . Important 4 59 . Neutral 3 . Not much important 2 . Not important at all 1 16. (a)If important, what are some of the important grounds for doing disclosure to a child? . It helps in improving adherence . It helps the child cope with the disease . Helps child overcome depression . Helps in HIV prevention . Helps a child become more open to discussion about HIV. . Helps in psychosocial development of the child due to reduced anxiety . Helps in reducing chances of accidental disclosure to the child which can be very harmful. . Others, specify_____________________________________________ (b) If Not important to disclose, why? . Child will become depressed . Child will tell others about the HIV status . Child might not understand . Child will not take medication well . Others, specify_________________________________________ 60 17. Does your partner know the HIV status of the child? . Yes . No 18. Have you disclosed to your child that he/she is HIV positive? . Yes . No (if No, go to Q 20) 19. (a) How did you approach disclosure process to your child? . Process . Single sitting . With the help of a HCW . Others, specify__________________________ (b) What happened after you disclosed to the child? . Child became depressed . Child became less depressed . Child improved on adherence . Child became more open to discussions about HIV . Others, specify________________________________ (c) Did you experience stigma in any way after disclosing to your child? . Yes . No (If No, go to Q21) (d) If yes what did you go through? . I experienced social isolation/avoidance by friends . I was called names 61 . People in my neighbourhood were talking bad things about me . I was blamed for being responsible for my child.s HIV status . I was rejected by my spouse/family . I was dismissed from job . I was denied access to quality health care in facility . It was hard to get a partner . Others, specify___________________________________________ 20. (a)If not disclosed to child, why? . Fear of emotional and health consequences . Child is too young to understand . Feel guilty/will be blamed . Child may disclose to other people . Is not important . Fear my partner . Other reasons, specify__________________________________ (b) Has stigma towards HIV infected persons in your community influenced your decision of not disclosing positive HIV status to your child? . Yes . No 62 (c) If yes, how has it influenced? . I will be isolated socially/avoided by friends . I will be called names. . People will talk bad things about me . I will be blamed for being responsible for my child.s HIV status . I will be rejected by my spouse/family . Others, specify_____________________________________________ (d) Has your culture influenced your decision not to do disclosure to your child his/her positive HIV status? . Yes . No (e) If Yes, how? . People will think I am bewitched . People will say I am Cursed . People will say that I am being punished by God . People will say that the ancestors are unhappy with me . I will be seen as being promiscuous. . Other, specify______________________________________ 21. Have you told your child the importance of taking his/her drugs? . Yes 63 . No (if no go to question 23) 22. If yes, what did you tell him/her about the drugs? . The HIV virus requires you to constantly take these drugs so that you remain healthy . Your blood has some germs which need daily medication to control them . Other, specify_______________________________________________ _ 23. (a)If no, what reason do you give to your child as to why he/she is taking the drugs? . So that you will not get sick . The doctor said you take the drugs . Your blood has some germs which need daily medication to control them . You have TB, malaria or any other chronic disease . Other reasons________________________________________________ (b)How do you ensure that your child takes his/her drugs? . Coarse the child . Encourage the child . Cheat the child the drugs are treating other illness . Put the medication in child.s food 64 . Tell the child that doctor said you must take the drugs . Other ways, specify 65 Appendix II: Informed Consent Consent Hi, I am…………………………………………………, a postgraduate scholar from Kenyatta University, school of Public Health, doing a study on HIV sero-status disclosure by caregivers to infected children accessing HIV care at Mbagathi District Hospital, which I invite you to take part in. Aim of the Study The aim of this research is to find out the factors related to HIV status disclosure by guardians to infected children. This is because it has been found out that many HIV infected children are not aware of their HIV + status. Findings of this research will contribute to filling knowledge-gap to suggest proper intervention measures that will promote disclosure in the community which in turn will help in reducing transmission of HIV. Approach You are requested to play a part in this research because your HIV infected child receives services at this hospital. If you opt to play a part in this we will question you regarding your HIV status, your partner.s status, your knowledge on the benefits of disclosure, factors that hamper disclosure, and whether you have told your HIV positive child about his/her status or not. As you give responses to the questions a questionnaire will be filled. No protruding procedures such a drawing blood will be carried out. This will take like 20 minutes of your time. 66 Confidentiality All info you tell us will remain as classified and only staff involved in this research will be able to see it. Any other information that may be linked to you will not be used when reporting study outcomes. Voluntary Participation Your involvement in this research is voluntary and you are allowed to pull-out at any stage of the study. Refusal to take part will not involve any punishment or loss of benefits to which you are entitled. However, we encourage you to partake in the research because your perspectives are key in informing future interventions. Benefits The information you give us will be important in guiding decisions to improve care and treatment of HIV infected children. No money or reimbursement will be given to you upon participating in the interview. Risks This research involves invasion of your personal life on questions related to your HIV status and that of your child but only the researcher asking the questions will know the answers as an individual. Since it is a non-invasive procedure, it poses no risks associated with pain or infection. 67 Whom to Contact In case you have concerns about this study or what you are entitled as a participant please call Jones Nzioki Mutiso 0720 876 083 Dr. Justus Osero 0724 869 330 Dr. Eunice Chomi 0713 917 511 I have read and understood this consent form and know the procedures involved, that my participation is voluntary and I am free to pull-out at any stage without risking any penalty, that there is no money given for my participation and that confidentiality will be observed at all times and that all information gathered will be sorely used for the purpose of this study only. I agree to take part in this study. Your signature…………………… Date…………… 68 Appendix III: In-depth Interview Guide-Caregiver who has disclosed In-depth Interview Guide -Care giver who has disclosed to his/her child. Interviewer______________________________________ Date_____________________ I would like to appreciate you for sparing some moment to listen to me. I am ____________________________, a postgraduate student from Kenyatta University, school of Public Health, doing a study about HIV sero-status disclosure by caregivers to HIV positive children accessing HIV care at Mbagathi District Hospital, which I invite you to take part in. This will help me get more information on the same that can be used to improve treatment outcomes for HIV infected children. The survey will take about 45 minutes. If you allow me I will tape this interaction since I want to get all what you say. My request is that you be audible enough so that the taping get all what you tell me. Answers you give will be restricted to study personnel only. The information in our report will by no means be linked to you as the informant. You are not compelled to take part in this study and you may opt out of the research at any given time if you don.t feel comfortable. Any concerns on the above? Do you consent to get involved in this study? Signature Date 69 Participant Demographic Data Age_____________ Sex_____________ Education level____________________ Occupation________________________ 1. Are PLHIV stigmatised in the community that you live in? a) In what way? b) How does this stigma influence HIV status disclosure? 2. How does your culture view HIV infection and those infected by HIV? (a) How does this cultural view influence HIV status disclosure? 3. Apart from fear of stigmatisation, what could be the basis for many caregivers being hesitant to tell their children about their infection status? 4. What are some of the important reasons for doing disclosure to a child on his/her HIV status? (a) Why did you disclose? 5. How did you disclose to your HIV positive child? 6. What happened after you disclosed to the child? How did you feel initially? How did you feel after a while? How did your child react initially? How did your child behave after a while? 70 7. After disclosing to your child, did the child disclose to friends, neighbours, and relatives? (a) Did you experience stigma in any way after disclosing? Is there anything more you would like to add? Any recommendations that you have that you think could be helpful to assist in disclosure to infected children? Thank you very much. 71 Appendix IV: In-depth interview Guide-Caregiver who has not disclosed In-depth Interview Guide -Care giver who has not disclosed to his/her child. Interviewer______________________________________ Date_____________________ I would like to appreciate you for sparing some moment to listen to me. I am ____________________________, a postgraduate student from Kenyatta University, school of Public Health, doing a study about HIV sero-status disclosure by caregivers to HIV positive children accessing HIV care at Mbagathi District Hospital, which I invite you to take part in. This will help me get more information on the same that can be used to improve treatment outcomes for HIV infected children. The survey will take about 45 minutes. If you allow me I will tape this interaction since I want to get all what you say. My request is that you be audible enough so that the taping get all what you tell me. Answers you give will be restricted to study personnel only. The information in our report will by no means be linked to you as the informant. You are not compelled to take part in this study and you may opt out of the research at any given time if you don.t feel comfortable. Any concerns on the above? Do you consent to get involved in this study? Signature Date 72 Participant Demographic Data Age_____________ Sex_____________ Education level____________________ Occupation________________________ 1. Are PLHIV stigmatised in the community where you live in? (a) In what way? (b)How does this stigma influence HIV status disclosure? 2. How does your culture view HIV infection and those infected by HIV? (a) How does this cultural view influence HIV status disclosure? 3. Apart from fear of stigmatisation, what could be the basis for many caregivers being hesitant to tell their children about their infection status? 4. What are some of the important reasons for doing disclosure to a child on his/her HIV status? 5. Why haven.t you disclosed to your child? 6. Now that your child doesn.t know his/her HIV status what reason(s) do you give to the child as to why he/she is taking the drugs? a). How do you ensure that your child takes his/her drugs? Is there anything more you would like to add? Any recommendations that you have that you think could be helpful to assist in disclosure to infected children? Thank you very much. 73 Appendix V: In-depth Interview Guide, Nurse Counsellor In-depth Interview Guide-HTC Counsellor Interviewer______________________________________ Date_____________________ I would like to appreciate you for sparing some moment to listen to me. I am ____________________________, a postgraduate student from Kenyatta University, school of Public Health, doing a study about HIV sero-status disclosure by caregivers to HIV positive children accessing HIV care at Mbagathi District Hospital, which I invite you to take part in. This will help me get more information on the same that can be used to improve treatment outcomes for HIV infected children. The survey will take about 45 minutes. If you allow me I will tape this interaction since I want to get all what you say. My request is that you be audible enough so that the taping get all what you tell me. Answers you give will be restricted to study personnel only. The information in our report will by no means be linked to you as the informant. You are not compelled to take part in this study and you may opt out of the research at any given time if you don.t feel comfortable. Any concerns on the above? Do you consent to get involved in this study? Signature Date 74 Participant Demographic Data Age_____________ Sex_____________ Education level____________________ Occupation________________________ Length of stay at this facility__________ 1. Are PLHIV stigmatised in the community where your clients come from? a) In what way? b) How does this stigma influence HIV status disclosure? 2. How does the culture of your clients view HIV infection and those infected by HIV? (a) How does this cultural view influence HIV status disclosure? 3. Apart from fear of stigmatisation, what could be the reasons as to why many caregivers are reluctant to disclose to their infected children? 4. What are some of the important reasons for doing disclosure to a child on his/her HIV status? 5. How do the caregivers disclose to their infected children? a) Gradual process? b) With the assistance of a Health care provider? 75 6. What challenges have you come across in counselling guardians on disclosure of HIV positive status to their infected young ones? 7. What are the individual level characteristics of caregivers who have done disclosure to their HIV infected children? 8. What issues have you observed among the children who have been told about their HIV positive status? (Immediately after disclosure? a while after disclosure?) 9. What issues have you observed among caregivers who have disclosed to their HIV infected children? (Immediately after disclosure? a while after disclosure?) 10. For children who have not been disclosed, what difficulties do you encounter in ensuring the children take their drugs? (a) How do you ensure these children take their drugs? Is there anything more you would like to add? Any recommendations that you have that you think could be helpful in assisting in disclosure to infected children? Thank you very much for your time. 76 Appendix VI: Map showing location of Mbagathi Sub County Hospital 77 Appendix VII: Research Authorizations 78 79 80 Appendix VII: Research Permit 81