Experiences of children (10-14 years) living with HIV and AIDS following their diagnosis in Mzuzu. Ellemes Phuma-Ngaiyaye Mzuzu University Department of Nursing and Midwifery

Outline Introduction Purpose Methodology Results Conclusion

INTRODUCTION The advancement in technology has led to many people, including children, access HAART Many children are living longer, reaching adolescence These have brought psychosocial challenges on HIV disclosure to infected children Most parents/caregivers are reluctant to disclose the HIV diagnosis to infected children

Purpose of the study To explore the experiences of children living with HIV when they are told their diagnosis

Objectives To explore responses/reactions of HIV-positive children when they are informed about their diagnosis. To explore coping mechanisms of children living with HIV. To describe experiences of parents/caregivers of HIV-positive children following HIV disclosure to the infected child.

Methodology Setting: Mzuzu Central Hospital, Rainbow clinic Population: HIV positive children who were told the diagnosis and were on ARVs, and their parents/caregivers

Methodology cont. Design: The study was qualitative and used purposive sampling Data were collected using semi-structured interview schedule as well and direct observation of participants. 10 children and 7 parents/caregivers were interviewed Data was analysed using content analysis

Ethical considerations The proposal was approved by University of Botswana Ethical Review board and National Health Sciences Research Committee Participants were identified through the ART clinic and informed verbally on the purpose of the study before written consent was obtained from parents/caregivers All children were asked to assent for participation in the study

Results Demographic data:

Level of education

Relationship with Caregiver

Results cont. HIV disclosure The majority of children (80%) reported being told the HIV diagnosis after they had already started ARVs-after 2 years or more The HIV disclosure was done by the health care provider (50%), parents/caregivers (30%) and friends (20%)

Results cont. Parents were not comfortable to disclose the HIV diagnosis to the child because of fear “I told a doctor to tell the child the results… I was afraid that the child will be more affected...you health workers know how best to handle such issues...you have the skills.” (P2, mother to a 13 yr old boy).

Results cont. Reasons for HIV disclosure to child Frequent illness-child asked questions (41%) Refusal to take medications (39%) Accidental disclosure-friends and relatives (20%) “Their friends were laughing at them, because they take medications, they have AIDS...I told them because I wanted them to know, and not to worry” (P5, mother to a 13 yr old girl)

Results cont. Children’s immediate reaction to HIV disclosure Worry “…I was worried because they just started me on medications before telling me my problem…I was depressed...because if they had told me at the beginning, it could have been better. But they were just bringing me here, giving me medications” (C6, 14 yr old boy). “I was worried...(sob). I did not feel good...I did not know where I got it” (C10, a 14 yr old girl).

Results cont. Challenges Stigma and discrimination “...sometimes my sister in-law was not giving me food...(sobbing)...(pause)...she was also telling me not to use her water, maybe because I have HIV. Then I just ran away from home…” (C10). “…but my sister…when I take medications she mocks me (pause). Even when we are playing with friends, she tells them not to play with me, because I am thin...Some of my relatives also say that I will die ...I do not want them to talk about my illness” (C8). Stigma and discrimination

Results cont. Coping Strategies Maintaining secrecy of the HIV status “No one else except my parents and the doctor …I do not tell people. I am afraid they can laugh at me’’(C1). “…some people do not keep secrets, they can also make a person feel depressed, by exposing him/her to other people. The only thing I am concerned with is that, when my friends and some of my relatives know that I have HIV, what are they going to say about me?” (C4).

Results cont. Play and attending church functions Family support was also important for the children’s coping “Most of the time, when I see that I am becoming depressed, I go to play with friends…I am a church choir and Sunday school member”(C10).

Results cont. Parents/caregiver experiences following HIV disclosure to child Relief “I am relieved…at first I was afraid that the child may not accept the HIV diagnosis. But she accepted, she is free; taking her medications properly…she will manage to live positively, by taking her medications” (P4). “I am happy…he has accepted the HIV diagnosis. He takes medications without problems” (P2).

Conclusion Most of the HIV positive children were worried when they learnt about the HIV diagnosis. Despite the delayed HIV disclosure and stigma faced, children identified coping strategies as a result they did not experience problem behaviours.

Conclusion cont. The HIV disclosure provided psychological comfort to the parents/caregivers leading to enhancement of support and encouragement for the HIV-positive children. If children are told their HIV diagnosis early they become motivated to care for themselves and take responsibility for their own health by adhering to treatment protocols.

Recommendations There is a need to develop HIV disclosure guidelines for children, for use in all health facilities providing these services to enhance coping and positive living. Parents/caregivers should be assisted to identify effective ways of HIV disclosure i.e. Make an early disclosure plan. Children living with HIV and AIDS need continuous support and counselling to enhance long term adjustment and HIV prevention behaviours A similar study should be conducted on a large scale

Limitations It was difficult to collect in-depth data from some children, especially those who were interviewed in the presence of a parent/caregiver. Information collected may not necessarily represent their experiences. Health care providers were not included in the study The data collection was conducted at one (1) institutional setting, providing HAART in Malawi, and the sample was small.

Acknowledgement Staff and clients, Mzuzu Central Hospital Prof. N.A. Phaladze, University of Botswana Staff, Mzuzu University, Department of Nursing and Midwifery