Disclosure of HIV status to children living with HIV in Malawi: needs assessment and formative evaluation of an intervention to help with the disclosure process Fatch Kalembo1,2 Garth Kendall2 Mohammed Ali2 1Mzuzu University, Malawi 2Curtin University, Perth Western Australia

Background information of Malawi Population: 18 million Children < 14 years: 46% of population People living with HIV: approx. 1 million Prevalence: 7% Children < 14 years account for approximately 10 % of those living with HIV

Background – Children with HIV Seropositive children living longer on ARV medication WHO recommends full HIV status disclosure to infected children 6-12 years in age appropriate manner Lack of a validated and standardized disclosure materials Children are at increased risk of poor health and developmental outcomes due lack of or inappropriate disclosure

Study aim Evaluate the need and acceptability of culturally appropriate story books intended to help with the disclosure process The ultimate goal is to improve the psychosocial well-being of children living with HIV

Description of the proposed HIV disclosure intervention The proposed intervention will be: a series of culturally appropriate story books written & illustrated by Malawian and Australian children’s book authors guided by the formative evaluation study, expert advice from steering committee, and review of available literature will have instructions for parents, healthcare workers and teachers, and community leaders

Methodology Formative evaluation design using a mixed methods approach Data collected using surveys, in-depth interviews (IDI) and focus group discussions (FGD). Data collected from: primary caregivers of children living with HIV (Survey & FGD) healthcare workers (Survey & IDI) teachers (FGD) community leaders (IDI)

Instruments Survey questionnaires: socio-demographic characteristics (Healthcare Workers [HW] & Primary Caregivers [PC]) disclosure of HIV status, and need and acceptability of HIV disclosure story books (HW & PC) Strengths and difficulties questionnaire (PC) Family life stress, functional support and impact of child’s illness on family (PC) IDI guide (HW & Community Leaders [CL]) FGD guide (PC &Teachers [T])

Recruitment criteria and summary of data collection plan for questionnaire data Participants Sample size Eligibility criteria Recruitment location Primary caregivers 429 Parent/caregiver of a 6-12 year old child living with HIV Provided care > 6 months 18 years or older Ability to provide informed consent ART clinics (8 district hospitals) Healthcare workers 168 Working in children’s ART clinics Nurse, counsellor or clinician ART clinics (All govt. district and tertiary hospitals)

Quantitative results Sociodemographic characteristics of participants 50% of primary caregivers: 40 yrs or younger 61% of primary caregivers: biological mothers of children living with HIV Age of healthcare workers: evenly distributed among three categories (21-30, 31-40, >40 years) 48% of healthcare workers were nurses, 29% counsellors, and 23% clinical officers

Prevalence of non-disclosure

Reasons for non-disclosure of HIV to children Primary caregivers Healthcare workers Child lacks capacity to cope with the diagnosis (29%) Lack confidence to disclose appropriately (19%) Fear of stigma and discrimination (17%) Feelings of guilt or shame (14%) Lack of support from healthcare workers (13%) Others (8%) Inadequate knowledge about disclosure process (21%) Lack of training on disclosure (21%) Lack of guidelines and materials (17%) Unwillingness of primary caregivers (16%) Pressure of work (13%) Others (12%)

Factors associated with non-disclosure Variable aOR (95% CI) aOR (95%CI) Child and family   Healthcare worker Child’s age Gender 6-8 3.8 (2.1-6.8)*** Female 2.4 (1.1-5.5)* 9-10 1.5 (0.8-3.0) Male 1.0  11-12 1.0 Received training Nutritional status Yes Underweight No 7.7 (3.4-10.7)*** Normal 1.9 (1.1-3.3)* Overweight/obese 1.6 (0.7-3.8) Child asking why he /she is taking ARVs 2.8 (1.6-4.7)** ***P<0.001, **p<0.01, *p<0.05

Primary caregivers’ and healthcare workers’ views on the proposed story books Statement Strongly agree/ agree Primary caregivers % (n) Healthcare workers Good idea 99 (426) 98 (64) Will use the books 99 (424) 97 (162) Will improve my knowledge on HIV disclosure 98 (422) 98 (165) Will improve my confidence in HIV disclosure 99 (425) Reduce my worries regarding HIV disclosure 98 (421) 86 (144)

Recruitment criteria and summary of data collection plan for focus groups and interviews Participants No of FGD &IDI Eligibility criteria Recruitment location Primary caregivers, 6 FGD Providing care to a 6-12 year old child for >6 months 18 years or older Antiretroviral therapy clinics Healthcare workers 7 IDI Working in ART clinic Nurse, counsellor or clinician Antiretroviral therapy clinics Primary school teachers Teaching at a primary school Schools near hospitals Community leaders 12 IDI Being 18 years or older Leader in the community Communities near hospitals

Participants views regarding the story books Most participants expressed the need for the books Perceived benefit of the story books Improve knowledge and confidence Standardize the disclosure process Improve relationship among stakeholders

Suggestions regarding the story books Include importance of nutrition, medication, compliance Beautiful pictures Do not include scary pictures and sexual references Include training on how to use the books

Conclusion Lessons learned Next step the prevalence of non-disclosure of HIV in Malawi is high fear of the negative impact of disclosure, lack of knowledge, training and disclosure materials are major barriers to disclosure high acceptability of the proposed story books need for stakeholders to work together Next step develop the HIV disclosure story books. pilot the story books scale up the intervention

Curtin University-Australia Ministry of Health, Malawi Participants Acknowledgements Curtin University-Australia Ministry of Health, Malawi Participants