As advanced medical treatment for HIV has increased the longevity for children are born with HIV, the subject of disclosure of the diagnosis has become an important part of social work practice. Disclosure of the diagnosis to the HIV infected child has been difficult for families, and can result in a polarization between social workers, who tend to opt for openness, and the caregivers, whose need to protect the child from the stigma of the disease often prolong disclosure. The purpose of the study is to examine certain factors that may influence what caregivers tell their children about the diagnosis. These factors include: (1) age of the child, (2) caregivers' perception of the child's illness, (3) caregiver status (biological vs. non-biological parent), and (4) sense of spirituality.
A total of 52 caregivers of perinatally HIV infected children and adolescents in a hospital clinic responded to an open-ended question: "what did you tell your child about the diagnosis?" The answers were categorized into degrees of disclosure, ranging from deceptive explanations, to full disclosure. A questionnaire about reasons for the degree of disclosure was completed, along with the SIBS (Spiritual Involvement and Belief Scale), and followed by some demographic questions.
The results showed that 48% of the caregivers fully disclosed to their child, and 54% gave minimal information. However, 82% of the children were told their diagnosis by adolescence. Only age and illness perception were significantly correlated with disclosure. Main reasons for full disclosure were: (1) child had the right to know and (2) caregiver's desire to establish a trusting relationship with their child. Common reasons for partial disclosure were (1) child was too young, and (2) fear the child would tell others, thus, risking ostracism.
Because HIV infected children are now living into late adolescence, most caregivers find it difficult to keep the diagnosis from them, because of the risk of the teen's transmitting the virus to others. Social workers need to validate the caregivers' reasons to postpone disclosure and adopt a strength-based approach in helping them with the challenging process of telling their children the diagnosis of HIV.
|School:||Adelphi University, School of Social Work|
|School Location:||United States -- New York|
|Source:||DAI-A 69/03, Dissertation Abstracts International|
|Keywords:||Caregivers, Children, Disclosure, HIV, Pediatric HIV, Psychosocial HIV|
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