Prevention of mental and behavioral disorders in HIV-Positive adolescents and youth in Kigali-Rwanda

UNIVERSIDADE NOVA DE LISBOA Faculdade de Ciências Médicas International Master on Mental Health Policy and Services Presented by: Adolphe Majyambere, MPH Supervisor: Miguel Cotrim Talina , MD, MSc, PhD Completion Year: 2017 THESIS TITLE Prevention of mental and behavioral disorders in HIV-Positive Adolescents and Youth in Kigali-Rwanda 1 ACKNOWLEDGEMENT My sincere gratitude goes to the entire team of the International Master in Mental Health Policy and Services Program at Nova University for initiation of the master program and most importantly their dedication to run this Master Program. Special thanks are addressed to Prof. Miguel Cotrim Talina for rich scientific guidance while supervising this thesis. We would like to thank Kigali Hope Association (An organization of HIV-positive young people) for ideas and support in data collection. This thesis is a result of the provided support by making available two volunteers who assisted in data collection process. We also thank the authorities of health facilities, interviewed care providers, counselors and two senior staff from mental health and HIV/AIDS national programs. Last but not least, we thank all HIV-positive young people, adolescents and their parents who accepted to share their life experience and testimonies. Adolphe Majyambere 2 RESUME Several studies showed that HIV-positive youth and adolescents constitute a high-risk group for mental and behavioral disorders worldwide. For young people and adolescents, it is obvious is that mental and behavioral disorders are potentially preventable when properly and timely done. A naturalistic cross sectional, descriptive study was done in Kigali general hospitals. The main objective of this study was to assess the feasibility of mental and behavioral disorders primary prevention for HIV-positive adolescents and young adults through HIV/AIDS services. In total, 112 adolescents and young adults aged between 14 and 25 were interviewed, 58.9% were males while 41.1% were females. Six health care providers and two policy makers were also interviewed. Results from the study shows that among the needs of adolescents and young adults for prevention of mental behavioral disorders, there are; 1) communication and HIV status disclosure properly done to the children and adolescents; HIV disclosure counseling was qualified by all participants as an important component to prevent later mental and behavioral disorders. 2) The majority (66.9 %) of the participants were being followed up in by HIV care and treatment for more than 6 years including 15.2 % who have been enrolled for more than 15 years, continuous medical and psychosocial care were qualified as important element for prevention of mental and behavior disorders. Lack of clear policy and guidelines, lack of trained and specialized staff, limited social support and insufficient skills for family members to support affected youth and adolescents are key identified weakness and threats. Finally, we come up with a model named: “Model for prevention of mental and behavioral disorders among the adolescents and youth infected by HIV”. The model proposes interventions at three levels; 1) policy and guiding documents, 2) clinical practices and 3) family and community involvement. 3 RESUMO Diversos estudos demonstraram que jovens e adolescentes HIV positivos constituem um grupo de alto risco para transtornos mentais e comportamentais em todo o mundo. Para os jovens e adolescentes, é óbvio que os transtornos mentais e comportamentais são potencialmente evitáveis quando devidamente e oportunamente feito. Foi realizado um estudo descritivo transversal e naturalista em hospitais gerais de Kigali. O objetivo principal foi avaliar a viabilidade de prevenção primária de transtornos mentais e comportamentais para adolescentes e adultos jovens HIV positivos através dos serviços de HIV. No total, foram entrevistados 112 adolescentes e adultos jovens de 14 a 25 anos, sendo 66 (58,9%) do sexo masculino e 46 (41,1%) do sexo feminino. Seis prestadores de cuidados de saúde e dois responsáveis políticos foram também entrevistados. Os resultados mostraram as seguintes necessidades para a prevenção de transtornos mentais e comportamentais entre os adolescentes e adultos jovens; 1) comunicação e divulgação do status de HIV feitas de forma adequada às crianças e adolescentes. O aconselhamento para divulgação do HIV foi qualificado por todos os participantes como um componente importante para a prevenção de distúrbios mentais e comportamentais posteriores. 2) A maioria (66,9%) dos participantes estavam sendo acompanhados pela assistência e tratamento do HIV há mais de 6 anos, incluindo 15,2% que estavam inscritos há mais de 15 anos. O tratamento médico contínuo e o atendimento psicossocial foram qualificados como elementos importantes que contribuem para a prevenção de transtornos mentais e comportamentais. Falta de políticas e diretrizes claras, a falta de pessoal treinado e especializado, apoio social limitado e competências insuficientes para os membros da família apoiarem jovens e adolescentes afetados são fraquezas e ameaças identificadas. Finalmente, criámos um modelo denominado: "Modelo de prevenção de transtornos mentais e comportamentais entre adolescentes e jovens infectados pelo HIV”. O modelo propõe intervenções em três níveis: 1) políticas e documentos orientadores, 2) práticas clínicas e 3) envolvimento familiar e comunitário. 4 RESUMÉN Varios estudios mostraran que los jóvenes con VIH positivo y los adolescentes hacen parte de un grupo de alto riesgo para trastornos del comportamiento y mentales en todo el mundo. Para las personas jóvenes y los adolescentes, es claro que los trastornos del comportamiento y mentales son potencialmente evitables cuando hechos de forma adecuada y puntual. Se realizó un estudio descriptivo transversal y naturalista en los hospitales generales de Kigali. Objetivo de este estudio. El objetivo principal de este estudio fue evaluar la viabilidad de la prevención primaria de los trastornos del comportamiento y mentales para adolescentes y adultos jóvenes con el VIH positivo a través de los servicios de VIH/SIDA. En el total, 112 adolescentes y adultos jóvenes con la edad entre 14 y 25 fueron entrevistados, entre ellos, 66 (58,9%) eran machos, mientras 46 (41,1%) eran hembras. Se entrevistaron también a seis proveedores de atención de la salud ya dos responsables políticos. Los resultados del estudio muestran que entre las necesidades de los adolescentes y adultos jóvenes para la prevención de los trastornos del comportamiento y mentales, hay; 1) divulgación y comunicación del estado del VIH, hechos adecuadamente para los niños y adolescentes. El asesoramento fue cualificado por todos los participantes como un componente importante para evitar los trastornos del comportamiento y mentales para adolescentes y adultos jóvenes infectados prenatalmente por el VIH. 2) La mayoría (66,9%) de los participantes estaban siendo seguidos por servicios del VIH y tratamiento por más de 6 años, incluyendo 15,2% que estaban registrados por más de 15 años. Médico continuo y el servicio psicosocial fueron cualificados como un elemento importante que contribuyó para la prevención de los trastornos del comportamiento y mentales. La falta de políticas y directrices claras, la falta de personal capacitado y especializado, el apoyo social limitado y las habilidades insuficientes para que los miembros de la familia apoyen a los jóvenes y adolescentes afectados son debilidades y amenazas clave identificadas. Finalmente, se creó un modelo llamado: Modelo para la prevención de los trastornos del comportamiento y mentales entre los adolescentes y jóvenes infectados por el VIH. El modelo propone intervenciones que pueden ser hechas en tres niveles; 1) política y documentos de orientación, 2) prácticas clínicas y 3) familia y participación de la comunidad. 5 TABLE OF CONTENTS ACKNOWLEDGEMENT ......................................................................................................... 1 RESUME ................................................................................................................................... 2 RESUMO ................................................................................................................................... 3 RESUMÉN ................................................................................................................................ 4 LIST OF TABLES AND CHART ............................................................................................. 7 CHAPTER ONE: INTRODUCTION ........................................................................................ 8 1.1. context and problem statement ....................................................................................... 8 1.2. Study interest and motivation ........................................................................................ 12 1.3. Objectives of the study: ................................................................................................. 13 1.3.1. General objective: ................................................................................................... 13 1.3.2. Specific objectives: ................................................................................................. 14 CHAPTER TWO: METHODS ................................................................................................ 15 2.1. Study design .............................................................................................................. 15 2.2. Research questions: ....................................................................................................... 15 2.3. Study population: .......................................................................................................... 15 2.4. Sampling and data collection methods: ......................................................................... 16 2.5. Literature and document review: Policy documents analysis ....................................... 16 2.6. Statistical analysis plan: ................................................................................................ 17 2.7. SWOT analysis:............................................................................................................. 17 2.8. ETHICAL CONSIDERATIONS: ................................................................................. 17 CHAPITER THREE: RESULTS ............................................................................................. 19 3.1. Specific needs for the adolescents and youth infected by HIV for prevention of mental and behavioral disorders ....................................................................................... 19 3.1.1. Social and demographic characteristics: ................................................................. 19 3.1.2. Needs for HIV-positive adolescents and young adults for prevention of mental and behavior disorders: ........................................................................................................... 21 6 3.1.2.2 Services provided to adolescents and youth ....................................................... 23 3.1.2.3 Support from friends and families: ....................................................................... 24 3.1.2.4 Perceived stigma and needed support: .................................................................. 24 3.2. Objective two: Assessment of the weaknesses, forces, threats and opportunities ... 24 3.3. Objective three: Analysis of policy and other guiding documents ............................ 26 3.4. Objective three: Model for prevention of mental and behavioral disorders among the adolescents and youth infected by HIV ............................................................................ 27 3.4.1. Levels of the model: ............................................................................................... 28 3.4.1.1 Policy and guiding documents:............................................................................. 28 3.4.1.2 Clinical practices: ................................................................................................. 29 3.4.1.3 Family and community involvement: ................................................................... 31 3.4.2. Cost implication for the model: .............................................................................. 33 CHAPITER FOUR: DISCUSSION: ...................................................................................... 35 LIMITATIONS AND FUTURE DIRECTIONS: .................................................................... 41 CHAPITER FIVE: CONCLUSIONS: ..................................................................................... 42 REFERENCES: ....................................................................................................................... 43 APPENDIX .............................................................................................................................. 46 7 LIST OF TABLES AND CHART TABLES: Page TABLE 1: Research questions, objectives, methods and data collection instruments………..…18 TABLE 2: Social and demographic characteristics……………………………….………......….......19 TABLE 3: Age of HIV status disclosure to children, adolescents and youth……………...…….21 TABLE 4: Who did the HIV disclosure to the children and adolescents? …….......……………22 TABLE 5: Appreciation of HIV disclosure …….…………………………………………….….22 TABLE 6: Duration in HIV care and treatment services…………………………………...…….23 TABLE 7: Presentation of strengths, weaknesses, opportunities and threats………………….…25 TABLE 8: Analysis of policies of other national guiding documents…………………...…...26 CHART: CHART 1: Model for mental and behavioral disorders prevention for HIV-positive adolescents and youth……………………………………………………….........…….………….……...….28 8 CHAPTER ONE: INTRODUCTION 1.1. CONTEXT AND PROBLEM STATEMENT In Rwanda, the prevalence of HIV is 3% in the general population. Among youth, the HIV prevalence is 0.6 % for those between 15 and 19 years old while it is 1.5% of the youth between 20 and 24 years old [1]. Mental health and HIV/AIDS are closely interlinked; mental health problems, including substance-use disorders, are associated with increased risk of HIV infection and AIDS and interfere with their treatment, and conversely some mental disorders occur as a direct or indirect result of HIV infection [2]. On the other hand, HIV/AIDS imposes a significant psychological burden. People with HIV often suffer from depression and anxiety as they adjust to the impact of the diagnosis of being infected and face the difficulties of living with a chronic life-threatening illness, for instance shortened life expectancy, complicated therapeutic regimens, stigmatization, and loss of social support, family or friends. HIV infection can be associated with high risk of suicide or attempted suicide. The psychological predictors of suicidal ideation in HIV-infected individuals include concurrent substance-use disorders, past history of depression and presence of hopelessness [2]. The comorbidity of mental illnesses and increased psychological distress among HIVpositive individuals is substantially higher than in the general population. Studies in both lowand high-income countries have reported higher rates of depression in HIV-infected people compared to HIV-negative control groups [2]. The level of distress often seems to be related to the severity of symptoms of HIV infection and coping styles and learnt resourcefulness may shape the experience of depressive symptoms and the ability to care for oneself [2]. Although the problematic of mental health conditions associated to HIV is not yet explored enough in Rwanda, data from a study done in one of the health centers in the capital city show a high rate of depression among HIV-positive attending HIV care and treatment 15 CHAPTER TWO: METHODS 2.1. STUDY DESIGN This study is a naturalistic, cross sectional, descriptive study that targeted both direct and indirect beneficiaries. By direct beneficiaries, we mean the HIV-positive adolescents and young adults and indicted beneficiaries are health care providers and policy makers. The study was curried in three general hospitals. The three general hospitals in Kigali were selected by convenience criteria to perform the study. In addition to the questionnaire addressed to HIV-positive adolescents and young people, interviews with health care providers and policy makers from both Mental Health and HIV/AIDS national programs were made. 2.2. RESEARCH QUESTIONS: The study research questions are the following:  What are the specific needs for the adolescents and youth aged between 14 and 25 years infected by HIV concerning the prevention of mental and behavioral disorders in Kigali city general hospitals?  What are the strengths, weaknesses, opportunities and threats in existing HIV services to integrate prevention of mental health programs to integrate prevention of mental and behavioral disorders among adolescents and youth infected by HIV in the Kigali city general hospitals?  What are the available / lacking information in the national documents to guide the integration of mental and behavioral disorders among the HIV-positive adolescents and youth?  What can be proposed as a model for prevention of mental and behavioral disorders among adolescents and youth infected by HIV in the Kigali city general hospitals? 2.3. STUDY POPULATION: This study targeted HIV-positive adolescents and youth aged between 14 and 25 years old, enrolled in HIV care and treatment services in three general hospitals located in Kigali City. Health care providers and policy makers were also interviewed. 16 2.4. SAMPLING AND DATA COLLECTION METHODS: A random sample was done for adolescents and youth who attended the clinic during a two weeks period from 26 September to 8 October 20016. The final sample comprised 112 participants. The interviews were conducted by selected and recruited experienced peers in the health facilities. The HIV/AIDS counselors from the health facilities were also recruited as focal points responsible for selecting eligible cases and eventually provide support if needed. Interviews were done for health care providers of HIV and mental health services within the three health facilities (six respondents). In addition, we conducted interviews with policy makers on both HIV and mental health national programs (two informants). During the data collection period, we interviewed all individuals who meet the inclusion criteria and attended the HIV clinics. Inclusion criteria Participants were adolescents and young people meeting the following criteria: 1) to be HIV-positive and aware of his /her HIV status , 2) to be aged between 14 and 25 years old and 3) to be willing to respond to the questionnaire. Data collection instruments: A questionnaire was used to collect data from the participants for social demographic information and assess the needs. We developed the used questionnaire based on key needed demographic information related to the study. Inspired by other studies and official documents, we dressed a check list of specific needs of adolescents and young adults infected by HIV vis à vis prevention of mental and behavioral disorders and developed the questionnaire accordingly. 2.5. LITERATURE AND DOCUMENT REVIEW: POLICY DOCUMENTS ANALYSIS In this study, the literature review was done for two steps in two steps: Step one: the literature review was done by review published studies, official documents and reports that are related to the current situation of mental health prevention among the youth and adolescents in general and specifically those infected by HIV/AIDS. In addition, we consulted official published articles and documents describing prevention of mental and behavioral 17 disorders in general and specifically those related to prevention among the children, adolescents and young adults infected or affected by HIV/AIDS or other chronic diseases. Step two: The second step for literature review was dedicated to the review of the existing national official document. For this, we set up a check list composed by questions related to the needed information. The overall objective of this exercise was to make analysis on the national policy, guidelines, protocols and tools vis à vis prevention of mental and behavioral disorders among the HIV-positive adolescents and youth. 2.6. STATISTICAL ANALYSIS PLAN: Statistical descriptive analysis of socio-demographic information and assessed needs was done using SPSS-Version20. 2.7. SWOT ANALYSIS: This was done to enumerate strengths, weakness, opportunities and threats for prevention of mental and behavioral disorders in HIV services specifically for adolescents and youth infected by HIV. This helped to know what is existing and on what the prevention interventions can be based. This combines both structures, human and financial resources aspects. 2.8. ETHICAL CONSIDERATIONS: Protection of intimacy and confidentiality for the respondents was assured adequate and consensual procedures. The provided response should not influence health care delivery to participants. Again, a consent form was proposed to respondents for free participation or not in the study. For adolescents under 18 years, parents or guardians have been given asked to give consent for them. Briefly, the table below summarizes how the objectives were responded by answering to the research questions, methods and data collection instruments that were used (table 1): 18 Table 1: Research questions, objectives, methods and data collection instruments: Research questions Objectives Methods Data collection tools 1. What are the specific needs for the adolescents and youth aged between 14 and 25 years infected by HIV for prevention of mental and behavior disorders in Kigali city general hospitals Assess the needs for prevention of mental and behavior disorders among adolescents and youth infected by HIV -Interviews with adolescents and youth Questionnaire. 2.What are the strengths, weaknesses, opportunities and threats in existing HIV and mental health programs to integrate prevention of mental and behavioral disorders among youth and adolescents in the Kigali city general hospitals Identify strengths , weakness, opportunities and threats for HIV services to integrate prevention of mental and behavioral disorders among adolescents infected by HIV -SWOT analysis - Documentation review -SWOT analysis questions -Interview guide for care providers -Interviews guide for policy makers -Documentation review checklist 3. What are the available / lacking information in the national documents to guide the integration of mental and behavioral disorders among the HIV-positive adolescents and youth? - Analyze existing national policies, plans, guidelines and tools on how they respond to the matter of mental and behavioral disorders among the HIV-positive adolescents and youth - Documentation review -Interview with policy makers - Documentation review checklist -Interviews guide for policy makers 4. What can be proposed as a model for prevention of mental and behavioral disorders among adolescents and youth infected by HIV in the Kigali city general hospitals? -Review literatures and documentation on existing best practices to inspire an integration model for prevention of mental and behavioral disorders among the HIV-positive youth and adolescents - Propose a model for integration of mental and behavioral disorders prevention among the HIV-positive adolescents -Literature review -Interview with policy makers - Documentation review checklist -Interviews guide for policy makers 19 CHAPITER THREE: RESULTS 3.1. Specific needs for the adolescents and youth infected by HIV for prevention of mental and behavioral disorders 3.1.1. Social and demographic characteristics: In total, 112 adolescents and young adults aged between 14 and 25 years old were interviewed. Among them 66 were males while 46 (41.1%) were females. Most of the participants were aged between 18 and 21 with a proportion of 48.2%. 24.1 % were aged between 14 and 17 while 27.7 % were between 22 and 25 years old. The majority were protestant with 58.9%. Catholics represent 30.4 % while Muslims were 6.3%. For education level, 56.3% completed or were attending their secondary school, 9.3 % completed or are having university education while 20.5% completed or are in the primary level education. 97.3% of the interviewed youth and adolescents were not yet married while 2.7% were single parents. For occupation, 60.7 % of the respondents were student, 15.2% had income generation jobs while 24.1% were unemployed. The loss of parents is one of the situation affecting adolescents and youth infected by HIV. In this study, we found that 50.9 % lost one of their parents while 23. % are double orphans. The table below summarizes that socio-demographic data for the respondents (table 2): TABLE 2: Social and demographic characteristics (N=112) VARIABLES FREQUENCY PERCENTAGE SEX F 46 41.1 M 66 58.9 Total 112 100.0 Age 14-17 years old 27 24.1 18-21 years old 54 48.2 22-25 years old Total 31 112 27.7 100.0 20 RELIGION Catholics 34 30.4 Protestants 66 58.9 Muslims 7 6..3 Others 5 4.5 Total 112 100.0 EDUCATION LEVEL Not educated 4 3.6 Primary 23 20.5 Post primary 11 9.8 Secondary 63 56.3 University 11 9.8 Total 112 100.0 MARITAL STATUS Married 0 0.0 Single 109 97.3 Single parents 3 2.7 Divorced 0 0.0 Total 112 100.0 OCCUPATION Income generating job 17 15.2 Unemployed 27 24.1 Students 68 60.7 Total 112 100.0 ORHANS vs NON ORPHANS Double orphans 26 23.2 Have only mother 54 48.2 Have only farther 3 2.7 Non orphans Missing data 22 7 19.6 6.3 Total 112 100.0 21 3.1.2. Needs for HIV-positive adolescents and young adults for prevention of mental and behavior disorders: The needs of HIV-positive adolescents and young adults may be identified according to different aspects. For this study, we focused on needs that are linked to prevention of mental and behavioral disorders. In other words, we assessed specific elements needed for prevention of mental and behavioral disorders among the HIV-positive youth and adolescents. 3.1.2.1 Communication of the HIV status to children and adolescents: HIV disclosure counseling is an important part of mental and behavioral disorders prevention among the adolescents and young adults infected by HIV especially those who acquired the virus from their mothers. The time to tell the child his status is an important element. Date below show at which age the interviewed adolescents and youth were informed about their HIV status. Most of them were informed about their HIV status at late age. 53.6% were informed when they were between 11 and 14 years old. Some cases were obliged to wait for the age of 15 and above to be communicated their HIV status. Most of the participants who were informed about their HIV status at late age (15 and above) were double orphans (66.7 %) of those who were informed at 15 years and above. This means that double orphan is likely at risk for a delayed information about his HIV status. Below is a table showing when HIV status was communicated to the respondents: TABLE 3: Age of HIV status disclosure to children and adolescents Age at HIV disclosure Frequency Percentage Before 7 years old 1 0.9 Between 7 and 10 years old 42 37.5 Between 11 and 14 years old 60 53.6 15 years old and above 9 8.0 Total 112 100.0 22 Who did the HIV disclosure to adolescents and youth? Most of the HIV status disclosure to the children and adolescents was done by health care providers. 49.15 of respondents were informed about their HIV status by health care providers while 43.8% were informed by their parents. Only 7.1% were informed by other close family members. The role of both care providers and parents is very crucial in the HIV disclosure process. Results are captured in table below: TABLE 4: Who did the HIV disclosure to the children and adolescents? Who disclosed the HIV status Frequency Percentage Parents 49 43.8 Health care providers 55 49.1 Other family members 8 7.1 Total 112 100.0 Appreciation of how HIV disclosure was done: Adolescents and youth who were interviewed in this study appreciated the way the HIV status was communicated to them. The majority (69.6 %) appreciated how the disclosure was done while 30.4% did not appreciate the way they were communicated their HIV status. Below is the table describing the appreciation of the HIV disclosure process: Table 5: Appreciation of HIV disclosure process: Appreciate how HIV disclosure was done Frequency Percent Valid Percentage Valid Yes 78 69.6 69.6 No 34 30.4 30.4 Total 112 100.0 100.0 The reason mentioned by these adolescent who didn’t appreciate the HIV the fact that they were too young to understand the message (41.7%) , the message which was not clearly communicated (25.%) and the fact that proper disclosure was done after a longtime of lies (33.3%) were among the reasons mentioned by adolescents who didn’t appreciate the HIV 23 status disclosure process. However, all adolescents and young people agreed that HIV status disclosure counseling done properly can help to prevent mental and behavioral disorder. Most of the interviewed participants were able to openly disclose their HIV status to other people (60.7 %) while 39.3 % didn’t tell anybody. Near half of those who disclosed their status found support from friends and relatives (45.5%). 3.1.2.2 Services provided to adolescents and youth Most of the adolescents and young people have been enrolled in HIV care and treatment services for more than 6 six years (82.1%) and almost half have been followed up for more than 11 years ( 47.3%). TABLE 6: Duration in HIV care and treatment services: Number of years in HIV Care and treatment services Frequency Percentage 1-5 years 20 17.9 6-10 years 39 34.8 11-15 years 36 32.1 15 years and above 17 15.2 Total 112 100.0 Among the services offered to the adolescents and youth, most of them mentioned the following packages: 1) Medical care + HIV education sessions + support groups + life skills and the plan for future (21.4%) 2) Medical care + Free of charge medical services / health care insurance+ HIV education sessions + HIV education sessions + Nutrition+ Individual Counseling and Psychotherapy+ Support group+ Income generating activities + School fees and/or materials + Life skills and the plan for future ( 19.6 %) 3) Medical care + HIV education sessions + Individual Counseling and Psychotherapy+ support groups (12.5%) 4) Medical care + Free of charge medical services / Health care insurance + HIV education sessions + Individual Counseling and Psychotherapy (12.5%) Medical care combined with individual counseling and psychotherapy was qualified by the participants as the most important services that help to manage and cope with their HIV status 24 (49.1%). Generally, medical and psychosocial services were qualified by participants as services that are strongly contributing to prevention of mental and behavioral disorders among the targeted age group. 72.3 % of respondents agreed while 27.7 % said that the two kind of services are not enough to prevent mental and behavioral disorders. Among the recommendations made, there is; 1) to put in place a particular follow up system for HIV-positive young people and adolescents (9.8%), 2) to increase the frequency and variation of activities for support groups and 3) reinforcement of diet and nutrition services (8%). 3.1.2.3 Support from friends and families: Even if there a proportion of adolescents and young people who didn’t openly disclose their HIV status ( 39.3%) , it is important to highlight that nearly all respondents (92. %) recognized the role of friends and families in prevention of mental and behavioral disorders for adolescents and young people infected by HIV. However, only 52.7 5% of respondents agreed that the family members are trained and prepared to provide support to them in order to prevent mental and behavioral disorders. Among the training topics proposed by respondents there are; 1) how to live with an HIV-positive young person (33%), 2) diet and nutrition (8%), 3) and counseling skills (6.3%). 3.1.2.4 Perceived stigma and needed support: The great majority of participants (83%) stated that they have never experienced any kind of stigma or discrimination. Even if the rate of stigma and discrimination is low, some of the adolescents and youth fear to be stigmatized and avoid to disclose their HIV status to other people (39.3%). One of the positive elements is that the majority of those who openly talked about their HIV status were given more support (71.8%). 3.2. Objective two: Assessment of the weaknesses, forces, threats and opportunities Information was collected from health care providers in HIV and mental health services in the three general hospitals in Kigali. The table below describes the key strengths, weaknesses, threats and opportunities for HIV services to integrate prevention of mental and behavioral disorders among the adolescents and youth infected by HIV. The table below captures the information collected from six health care providers and two program managers (policy makers). Below is a table summarizing the strengths, weaknesses, opportunities and threats for HIV and services to integrate a package for the prevention of mental and behavioral disorders focusing on 31 Linkage between clinical practices and support from the family /community: In addition to the health facility based clinical services, the role of care providers is important when extended to the interventions targeting the family members and the community. The modal proposes the link between the two settings and their reciprocal enrichment. SHEKHAR S., et al, proposed that another way mental health care providers can assist in prevention efforts is by initiating prevention interventions in family members of those taking mental health care. Preventive approaches for children of parents with a diagnosed mental disorder, who are particularly at risk, can be highly effective but unfortunately not applied often. Mental health professionals need to balance their role of providing much needed care to the patients who are under treatment with preventing future need for care among their families [10]. 3.4.1.3 Family and community involvement: The role of family members and the community in prevention of mental and behavior disorders is crucial. Safe and supportive environment free of any kind of stigma is a key protective factor for adolescents and youth infected by HIV. Conclusions from a qualitative study showed that, HIV+ adolescents in South Africa experience similar concerns to those in high-income countries, socio-emotional coping may be compromised by increased levels of loss due to the late roll-out of antiretroviral treatment and challenges to caregiving contexts including poverty, stigma and minimally supported foster care arrangements. There is a need for mental health promotion programmes for adolescents to adopt an ecological approach, strengthening protective influences at the individual, interpersonal, community and policy levels [36]. Most of the interviewed participants recommended that family members should be coached by health care providers in supportive counseling of children, adolescents and youth infected by HIV. Parent management training programmes have also shown significant preventive effects, like the "The Incredible Years", which provides a behaviorally-based intervention that increases positive interactions between the child and the parent, improves the child's problem-solving 32 behavior and social functioning, and reduces conduct problems at home and school. The programme uses videotape modelling methods and includes modules for parents, school teachers and children [10]. Again, adolescents and youth need to be taught about life skills including sensitive issues related to the future life such as marriage, how to have children etc. This model proposes also a specific package for orphans due to multiple losses, and critical socio-economic situation. For that reason, vulnerability to mental and behavioral disorders is higher. Services like parenting and other kind of social support (education and free of charge medical insurance for example) are necessary for that specific group [10]. In one family based intervention study done in one rural Rwanda district, results showed that interventions targeting families contribute to prevention of mental and behavioral disorders among the HIVaffected adolescents. According to caregivers, youth protective factors of family connectedness, good parenting, child pro-social behavior and caregiver social support improved significantly from pre-intervention to post-intervention, and changes were sustained and showed continued improvement at the 6-month follow-up. In addition, caregiver-reported youth perseverance/ self-esteem was higher at 6-month follow-up than at pre-intervention. Youth-reported social support and parental use of harsh punishment also improved significantly from preto post-intervention and improvements were sustained at 6 months of follow-up. The number of children who scored in the clinical range for depression decreased from five of 32 (15.63%) at baseline to four of 31 (12.90%) at post assessment, to three of 33 (9.09%) at follow-up. The number of children whom caregivers rated in the clinical range for depression decreased from five of 37 (13.51%) at baseline, to three of 34 (8.82%) at post assessment, to zero of 34 at follow-up. According to caregivers, youth-internalizing symptoms (depression, anxiety/depression and irritability) also improved from preintervention to 6-month follow-up. There were no reported improvements in youth conduct problems or functional impairment [25]. This model is built on the principle that prevention of mental and behavioral disorders does not only consist on reducing symptoms but rather put in place a framework that help in both promotion of protective factors and reduction of symptoms. 33 An article on prevention of mental disorders among the adolescents highlighted that, in recent years, researchers and policy makers have recognized the importance of focusing on prevention efforts for depression. Prevention requires a paradigm shift from traditional disease models, in which symptoms are treated when they emerge, to a proactive focus on mental health and on maximizing protective factors while reducing risk factors for mental illness. In general, a review of the literature indicates that prevention programs utilizing cognitive behavioral and/or interpersonal approaches, and family-based prevention strategies, are most helpful [26]. For the American National Research Council and Institute of Medicine, Prevention emphasizes the avoidance of risk factors; promotion strives to promote supportive family, school, and community environments and to identify and imbue in young people protective factors, which are traits that enhance well-being and provide the tools to avoid adverse emotions and behaviors [13]. 3.4.2. Cost implication for the model: Considering the current available resources and the structure of HIV and mental health services in general hospitals in Kigali, this modal doesn’t have a big budget implication. Rather, it requires more restructuration, coaching, supervision and guiding documents (guidelines, protocols and tools). Data collected from participants, interviews done with health care providers and policy makers as well as the SWOT analysis show that adolescents and youth have access to many services that, if well reorganized and standardized, can contribute better to the prevention of mental and behavioral disorders among the adolescents and youth infected by HIV without great funding need. However, one of the three hospital is lacking a psychologist in the team. Furthermore, some funds should be oriented to training, clinical supportive supervision, mentoring and the development of guiding document and tools. 34 The World Health Organization recommends that primary health-care providers, including HIV counsellors, can be trained to recognize and treat common mental and substance-use disorders and refer patients to specialized services when warranted. Such providers need to be properly trained and supported by adequate supervision, and the process of referral to mental health services needs to be an integral part of the health infrastructure [1]. After identification of HIV-positive adolescents and youth needs, the American Academy of Pediatrics report (2014) proposed a similar package. Pediatrics proposed a response to those needs grouped into four categories: 1) Youth friendly services: composed by elements related to HIV disclosure, confidentiality and stigma, denial and coping with diagnosis of HIV infection , case management, multidisciplinary and comprehensive care in the medical home. 2) Structural program elements: including addressing barriers to health care, access to mental health services, alcohol and drug treatment, transportation to health care settings and housing as well as peer-to-peer counseling. 3) Social media: as a mean of communication and reminder to improve adherence to antiretroviral treatment. 4) Advocacy: advocate for resources that are necessary to provide optimal care for HIV-infected adolescents and young adults to include social support, rehabilitation, education, and access to basic necessities, including stable housing, without which the best medical care may prove ineffective [34]. 35 CHAPITER FOUR: DISCUSSION: Socio-demographic factors for Mental and behavioral disorders prevention A sample of 112 was considered for this study. Males represent 58.9 %, while females represent 41.1%. There is a predominance of the adolescents and youth aged between 18 and 21 years old with 48.2% of all respondents. With antiretroviral treatment, children who were perinatally infected by HIV have now the chance to live longer until the adolescence and adult age. Similarly, in the United State of American, many children infected with HIV perinatally have survived into their second or third decade of life with antiretroviral treatment [34]. In our study, most of the interviewed adolescents and youth (65.1%) are doing or had competed their secondary and/or university education level studies. This is a good sign that HIV-infected adolescents and young people in Rwanda have access to basic education. This can be considered as a mental health protective factor. The American pediatric academy confirms that graduating from school is a major milestone for all youth [34]. Students living with HIV have a right to equal access to education and the opportunities that education creates. Being able to remain in school and pursue an education represents normalcy and the maintenance of hopes and ambitions for the future. It also allows adolescents to acquire the life skills they need to manage peer pressure, form relationships, make good decisions and achieve their goals. Schools can also serve as important partners for health services in meeting the needs of adolescents for information, testing, support and referral for appropriate services [8]. There is sufficient evidence indicating the efficacy of interventions in reducing risk factors, increasing protective factors, preventing psychiatric symptoms and new cases of mental disorders. Macro-policy interventions to improve nutrition, housing and education or to reduce economic insecurity have proven to reduce mental health problems [10]. 36 In other words, education provides to marginalized children and youth affected by HIV epidemic with a window of hope and opportunity for a future free from poverty, disease and disparity [37]. Most of the interviewed HIV-positive adolescents and youth have lost at least one of their parents (74.1%) including the double orphans (23.2%). The psychological wellbeing of the orphans infected by HIV is a big concern. Prevention of mental and behavioral disorders among the orphans by HIV should be given more attention. In a study done among HIV-positive adolescents in Kenya, for mental health, orphan status was associated significantly with emotional problems, depression symptoms, exposure to traumatic events, and intrusion and arousal symptoms of PTSD. Orphan status also was significantly associated with less social support [15]. In a study done in Uganda , more orphans, than non-orphans had more common emotional and behavioral problems e.g. more orphans reported finding “life unfair and difficult” (p=0.03); 8.3% orphans compared to 5.1 % of the non-orphans reported having had past suicidal wishes (p=0.30) and more reported past “forced sex / abuse” (p=0.05). Lastly, the orphans' social functioning in the family rated significantly worse compared to the nonorphans (p= 0.05). Qualitatively, orphans, compared to non-orphans were described as “needy, sensitive, and isolative with low confidence and self-esteem and who often lacked love, protection, identity, security, play, food and shelter [38]. The same study recommended setting up a national policy and support services for orphans and other vulnerable children and their families, a national child protection agency for all children, child guidance counselors in those schools with many orphans and lastly social skills training for all children [38]. Delay in HIV disclosure for children /adolescents and prevention of mental and behavioral disorders HIV status disclosure for adolescent and youth is not only an important step in management and prevention of mental and behavioral disorders but also a matter of right. In this study, we observed that HIV disclosure was delayed in most of the cases. The majority of participants 37 were informed about their HIV status between 11 and 14 years (53.6%). A certain number of them (8%) were even obliged to wait until the age of 15 and above. Results from a study done is South Africa show that older child age was a determining factor for HIV disclosure to children, 22 (37.2%) learned of their HIV diagnosis between 11 and 16 years. The mean age of disclosed children was 10.6 years [39]. While there is little evidence that disclosure causes psychological harm and research suggests that it may actually be beneficial for a young person's mental wellbeing. A study done in Zimbabwe showed that learning about their HIV status is still one of the most difficult life events for adolescents living with HIV/AIDS [21, 22]. Despite these facts, the World Health Organization's guidelines for HIV status disclosure are limited to children under the age of twelve. Even though, many perinatally-infected children are not disclosed their HIV status until they are adolescents [23]. The American Academy of Pediatrics encourages the disclosure of HIV infection status to school-aged children [17]. Timely and properly done HIV disclosure counseling is an important element in prevention of mental and behavioral disorders for perinatal HIV infected adolescents and youth. In addition, a study done in the United States of America concluded that there was also no significant difference between time trends in quality of life scores before and after disclosure of HIV status, suggesting that diagnostic disclosure to children should not be delayed for fear of a negative impact on quality of life [35]. However, a particular attention should be put on double orphans. In this study, most of those with late HIV disclosure (66.7 %) at the age of 15 years and above were double orphans. At the family and community level, the proposed model suggests a particular social support to orphans infected by HIV. 38 HIV long-term follow up and integration of mental and behavioral disorders prevention: More than 82.1 % of interviewed adolescents and young people have been adhering to the HIV care and treatment services for more than 6 years including those who are being followed up for 15 years and above (15.2%). These figures show a high retention rate and prolonged duration for follow up in HIV care and treatment services for perinatally infected adolescents and youth. For that reason, HIV care and treatment service is a better place to integrate prevention of mental and behavioral disorders among the adolescents and youth infected by HIV. While preventing and managing mental and behavioral disorders, there will be a double gain. On one hand, the infected HIV-positive adolescents and youth will develop a positive mental health and on the other hand, HIV prevention, care and treatment will be well managed. The biopsychosocial approach is particularly important to the management of HIV infection. Successful prevention and treatment cannot occur in the absence of well integrated psychosocial approaches. Mental health workers, either directly or in consultation with other providers, have an important role to play in ensuring that these services are wellconceptualized and meet the mental health needs of those who use them [18]. While interviewing adolescents and youth, results showed that medical services combined with psychosocial counseling and psychotherapy services are essential. They were appreciated and qualified by the participants (49.1%) as key pillars in prevention of mental and behavior disorders. The World Health Organization recognizes that psychosocial support can help patients as well as their caregivers gain confidence in themselves and their coping skills. It can increase patients' understanding and acceptance of comprehensive HIV care and support services, encourage adherence to HIV treatment, and equip them with skills to make informed secondary prevention decisions. Such support can also help prevent adolescents living with HIV adopting risk-associated behaviors or from developing more severe mental health problems [8]. 39 Caregivers also benefit from support that acknowledges the stress they are under and validates their concerns about their children or charges, while enabling them to learn how to cope with the adolescent's developmental and health needs [8]. In addition, integration of HIV into mental health services provides opportunities for identifying individuals at risk of HIV infection, introducing HIV prevention and detecting those who are infected and providing them with appropriate HIV treatment and care. Mental health services should ensure access to voluntary and confidential HIV testing and counselling for those at risk [1]. Role of family members and the community support: The role of family members and the support from the community is important in prevention of mental and behaviors disorders among the adolescents and youth infected by HIV. Participants recognized that role of family members and the community in prevention of mental and behavioral disorders (92%). However, participants declared that family members don’t have enough skills and training to support the adolescents and youth. This have been also confirmed by the interviewed health care providers and policy makers. While developing and implementing a mental health prevention program, it is important to tackle on the family and community dimension. For most adolescents, families remain the primary, trusted source of emotional, material and practical support. They have an important role to play in encouraging and supporting an adolescent to live positively with HIV, beginning with disclosure of the adolescent's HIV status if they have not yet done so [8]. As children become adolescents, families and other caregivers are key partners with health providers in supporting a child's transition from pediatric to adult services. However, the potential benefits of family support can only be gained when an adolescent agrees for their family to be involved. Health care providers should assess family dynamics and, when appropriate, encourage adolescents to allow family members or other supportive adults to play a role in supporting their positive living. As part of goal setting and planning with adolescents, they should be allowed to specify ways in which they want their families to 40 support them and issues they prefer to address on their own. In general, health care providers should always respect an adolescent's wishes in this regard [8]. Management of stigma and discrimination: Interviewed adolescents and youth declared they have been ever stigmatized (17%). Most of the adolescents were reluctant to disclose their HIV status to other people. Only 39.3% were able to openly talk about their status to others. This means that adolescents fear to be stigmatized. Considering the negative impact of stigma and discrimination on development of a positive mental health for adolescents and youth, community interventions should focus on promoting activities against stigma and discrimination. As it has been proved in different studies, confronting HIV stigma and managing disclosure of HIV status to others may significantly impact mental health function [19, 20]. Health care providers must also be alert to situations where there is a potential for violence against the adolescent, which is an issue in some families. In these cases, social and protective services must be engaged to ensure that the adolescent is safe and remains in care [8]. Policy and guidance documents: Although the problematic of mental and behavior disorders among the adolescents and youth infected by HIV is well documented, analysis done on national guiding documents for both HIV and mental health programs shows that prevention of mental and behavior disorders is not clearly stated in the documents. The starting point to manage the situation is the development and the definition of the issue in national policies, strategic plans, guidelines, protocols and others guiding documents. As highlighted by the responsible of community mental health and rehabilitation in the national mental health program, prevention of mental and behavior disorders could not be possible if that component is not clearly defined in the policy and other reference documents. 47 Unemployed :-------------2 Student ----------3 008 Do you have chidden? If yes, how many? Yes : ---------1 No : --------2 Number of children :--------- PART TWO : Information on medical and psychosocial services HIV DISCLOSURE 009 At which age were you informed about your HIV status ( HIV disclosure) 1) Before 7 Y.O 2) 710 Y.O 3) 1114 Y.O 5) after 15 Y.O 010 Who informed about your HIV status Parents ---------1 Health care providers : -----------2 Other : ---------3 ( specify )----------- 011 Do you appreciate the way your HIV status was communicated to you? If no, what do you think was not good for you? Yes ----------1 No:------------- -------------------------------------------------------- 012 Do you think a good HIV disclosure counseling can help youth and children to prevent mental (trauma) and behaviors disorders to children? If Yes , explain how If No, explain why Yes :--------------1 No :--------------------2 -------------------------------------------------------- -------------------------------------------------------- -------------------------------------------------------- -------------------------------------------------------- 013 Did you inform someone about your HIV status If yes, what were the reaction? Yes :---------1 No:------------2 1) Surprised 2) Supportive 3) Stigmatizing 4) Other : ( specify )-------------------------- 48 OTHER MEDCIL AND PSYCHOSOCIAL SERVICES 014 For how long have you been enrolled in HIV care and treatment services? Number of years: ------------ 015 What are the services are you gaining from your health facility 1) Medical ( ART, prophylaxis , treatment of OIs) 2) Free of charge Medical services/mutuelle de santé 3) HIV education sessions 4) Nutritional services 5) Individual Counseling and psychotherapy 6) Support group 7) IGAs 8) School fees and/or materials 9) Life skills including sensitive issues like marriage and the future? 10) Other ( specify ) :------------------------------ 016 What services that you think are most important to help to manage and cope with your HIV status? ( By order of importance ) 1) ----------------------------------------------- 2) ------------------------------------------------ 3) ----------------------------------------------- 4) ------------------------------------------------ 017 Do you think the medical and psychosocial services provided to you are enough to help you to cope with you HIV status? If no, what can you recommend to improve the services that can help to prevent mental (trauma) and behavior disorders for youth and adolescent infected by HIV? Yes :----------1 No :---------2 -------------------------------------------------------- -------------------------------------------------------- -------------------------------------------------------- -------------------------------------------------------- -------------------------------------------------------- PART THREE : SUPPORT FROM FRIENDS AND FAMILIES 018 Do you think the support from friends and family is important to help young people to cope and prevent mental and behavior disorders Yes :---------1 No :---------2 49 019 Are your family members enough trained and prepared to offer the support you need? Yes:----------1 No: ----------2 020 What would you propose as education topics that your family member can be trained in to be able to support you better? -------------------------------------------------------- -------------------------------------------------------- -------------------------------------------------------- --------------------------------------------- 021 Have you ever experienced stigma related to HIV? If yes, what kind of stigma did you experienced? Yes :---------1 No :---------2 -------------------------------- 022 If yes question 021 is true, how does it disturb your copping strategies? -------------------------------------------- 023 What do you think can be done for your siblings avoid stigma related to HIV? ( at school, at home, in your village) -------------------------------------------------------- -------------------------------------------------------- ------------------------------ 50 II. Interview guide for Health Care Providers: Questions for health care providers in HIV and Mental Health services: 1. Identification of the health care provider: NAME FH/FOSA SERVICE QUALIFICATION EXPERIENCE GAINED TRAININGS 2. How do you understand the concept of mental and behaviors disorders prevention among the HIV-Positive adolescent and youth? 3. What are the main mental and behavior disorders that are generally observed among the adolescents and youth infected by HIV/AIDS? 4. How do you appreciate prevention of mental and behavior disorders for the adolescents and youth infected by HIV? Do you think it is feasible and how? 5. Are the policies, guidelines and tools clear about the activities that are needed to prevent mental and behavior disorders among the adolescents and youth? 6. What do have as activities that you think are contributing to the prevention on mental and behavior disorders in your current services (HIV or mental health)? 7. What are the challenges that your service is facing in the management of mental and behavior disorders for adolescents and youth infected by HIV? 8. How do you appreciate the role of the family members in prevention of mental and behavior disorders for the youth and adolescents infected by HIV? 9. What are strengths /resources that are available for your services to respond to the need of young adolescents and youth infected by HIV vis à vis prevention or decrease mental and behaviors symptoms? 51 10. What are the weaknesses for your services to respond to the need of young adolescents and youth infected by HIV vis à vis prevention or decrease mental and behaviors symptoms? 11. What are the threats for your services to respond to the need of young adolescents and youth infected by HIV vis à vis prevention or decrease mental and behaviors symptoms? 12. What are the opportunities for your services to respond to the need of young adolescents and youth infected by HIV vis à vis prevention or decrease mental and behaviors symptoms? 13. Do you have any particular recommendation that could help to integrate mental and behavior disorders prevention in the comprehensive HIV services? 52 III. Interview guide with the policy makers: 1. Is the concept of mental and behaviors disorders prevention among the HIVPositive adolescent and youth clearly defined in the national HIV / mental health policy? 2. What are the main mental and behavior disorders that are generally observed among the adolescents and youth infected by HIV/AIDS? 3. How do you appreciate prevention of mental and behavior disorders for the adolescents and youth infected by HIV? Do you think it is feasible and how? 4. Are the policies, guidelines and tools clear about the activities that are needed to prevent mental and behavior disorders among the adolescents and youth? 5. What are the examples of activities that you think are contributing to the prevention on mental and behavior disorders in your current services (HIV or mental health)? 6. What are the challenges that your service is facing in the management of mental and behavior disorders for adolescents and youth infected by HIV? 7. How do you appreciate the role of the family members in prevention of mental and behavior disorders for the youth and adolescents infected by HIV? 8. What are strengths /resources that are available for your services to respond to the need of young adolescents and youth infected by HIV vis à vis prevention or decrease mental and behaviors symptoms? 9. What are the weaknesses for your services to respond to the need of young adolescents and youth infected by HIV vis à vis prevention of mental and behavior disorders or decrease mental and behaviors symptoms? 10. What are the threats for your services to respond to the need of young adolescents and youth infected by HIV vis à vis prevention of mental and behavior disorders or decrease mental and behaviors symptoms? 11. What are the opportunities for your services to respond to the need of young adolescents and youth infected by HIV vis à vis prevention of mental and behavior disorders or decrease mental and behaviors symptoms? 12. Do you have any particular recommendation that could help to integrate mental and behavior disorders prevention in the comprehensive HIV services?