Redefining treatment: how biological mothers manage their children's treatment for perinatally acquired HIV.

Current medical thinking supports early initiation of aggressive approaches to the management of perinatally acquired HIV infection. Biological mothers, however, may not endorse this way of managing their child's condition. For this study, grounded theory methods were used to conduct secondary analysis of eight semi-structured in-depth interviews with parents of children with perinatally acquired HIV. Biological mothers' perspectives on their children's treatment for perinatally acquired HIV infection, the strategies they used to manage their children's treatment and sociocultural influences on mothers' beliefs and actions are explored and described. Creation of a framework that may be useful for future research and recommendations for clinical practice are offered.

The psychosocial issues of children with perinatally acquired HIV disease becoming adolescents: a growing challenge for providers.

Today, providers caring for children who have perinatally acquired HIV disease treat them differently than they did less than a decade ago. As our knowledge of HIV and its treatment have grown, so have we and so have our children. We are seeing the first wave of adolescents with perinatally acquired HIV disease. This increased longevity has given new meaning to past challenges such as treatment regimens, medication adherence, disclosure, and permanency planning previously faced by providers, children, and their families. New challenges, such as adolescent treatment decisions, relationships, intimacy, college, and careers have been added to the list. As a prediatric nurse practitioner having "grown up" with perinatally acquired HIV disease in the last decade, I reflect on past challenges and offer a perspective on those that lie ahead. A multidisciplinary, family-centered support group intervention that was developed at our AIDS Center Program to assist families, older children, adolescents, and providers in facing these challenges is described.

Qualitative research interviews with children and their families.

Regulations about conducting research with children, development of the field of qualitative research, and sophistication of our knowledge about children has prompted increased recognition of children as research subjects are described. Guidelines for how to prepare and conduct qualitative interviews with children and their families are summarized in Table 1. While gathering research data from children and their families presents many challenges, qualitative interview methods are a potentially rich source of data.

Diagnosis disclosure by family caregivers to children who have perinatally acquired HIV disease: when the time comes.

BACKGROUND: Children with perinatally acquired HIV disease (PAHD) can be relatively symptom-free and live to school age and older. These children often confront their caregivers with questions about the illness and complex treatments; however, caregivers may try to avoid disclosing the diagnosis of PAHD to the child. PURPOSE: To generate a substantive theory that describes and explains how family caregivers manage diagnosis disclosure to a child who has PAHD. METHOD: Using grounded theory, a substantive theory was constructed based on the accounts of 18 ethnically diverse families. Eight families had 10 children with PAHD who had been told their diagnosis. Ten families had 10 children with PAHD who had not been told their diagnosis. RESULTS: The basic social psychological problem was identified as caregiver readiness to disclose the diagnosis. When the Time Comes was identified as the central phenomenon linked to the problem of caregiver readiness. Causal conditions, intervening conditions, and strategic responses of caregivers and children were discovered and are inextricably linked to the central phenomenon. CONCLUSIONS: The process by which family caregivers respond to diagnosis disclosure to children with PAHD is based on the perceived self-readiness of the caregiver to disclose the diagnosis and illness-related information to their child.