1. 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

2. 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

3. 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

4. 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

5. 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

6. 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)

7. 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])

8. 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)

9. 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

10. Prevalence of non-disclosure

11. 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%)

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 ( )***
Female
2.4 ( )*
9-10
1.5 ( )
Male
1.0 
11-12
1.0
Received training
Nutritional status
Yes
Underweight No
7.7 ( )***
Normal
1.9 ( )*
Overweight/obese
1.6 ( )
Child asking why he /she is taking ARVs
2.8 ( )**
***P<0.001, **p<0.01, *p<0.05

13. 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)

14. 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

15. 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

16. 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

17. 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

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