Haven Battles

Disclosure of an HIV diagnosis to children: history, current research, and future directions.

Disclosing the diagnosis of human immunodeficiency virus (HIV) or AIDS to a child is a controversial and emotionally charged issue among both the health care communities and parents and caregivers of these children. This paper provides a systematic review of research on disclosure of pediatric HIV infection. It begins with a brief discussion of disclosure drawing from research on pediatric cancer. Next, we review the available research including patterns of disclosure, factors associated with disclosure and nondisclosure, and the effect of disclosure on psychological health and adherence. A review of published intervention studies is also included. While no consensus on when the diagnosis of HIV should be disclosed to a child or the psychological outcomes associated with disclosure was found, clinical consensus on several issues related to working with families was identified. We apply this literature to clinical practice and suggest avenues and directions for future research.

Allowing Adolescents and Young Adults to Plan Their End-of-Life Care

OBJECTIVE: The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used adult document Five Wishes by adolescents and young adults (AYAs) living with a serious illness. METHODS: Fifty-two participants (age 16–28) living with metastatic or recurrent cancer or HIV infection (acquired at birth or early in life) were presented pages randomly from My Thoughts, My Wishes, My Voice and, Five Wishes, and asked to rank 25 items on several factors, including how likely they would be to complete each statement. Participant opinion on suggested changes in content, design, format, and style was obtained and resulted in development of a new document. RESULTS: AYAs living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would liked to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered. CONCLUSIONS: AYA views of what should be included in an advance care planning guide were incorporated into a new document, Voicing My Choices, that provides youth, families and providers an opportunity to reduce the silence around the dying process by allowing an opportunity to share one’s voice. We provide guidance on how to incorporate this tool into care.

The HIV Experience: Youth Identified Barriers for Transitioning from Pediatric to Adult Care

OBJECTIVE The aim of this study was to explore the experiences of youth living with HIV who transitioned from pediatric to adult care. METHODS Semi-structured telephone interviews were conducted with 59 youth (mean age = 22 years) living with HIV about the transition experience, demographics, and health status. RESULTS Of youth who transitioned to adult care, immune function (CD4) trended downward, 45% found the transition more difficult than anticipated, and 32% could not find emotional support services. Youth identified the need for increased continuity of care, assistance with logistics, improved communication with providers and caregivers, and individualized management of their transition process. CONCLUSION Without adequate preparation, the transition process can be compromised with potentially serious health consequences. Youth living with HIV seek adult providers that can provide developmentally appropriate transition interventions that address loss, disclosure, and sexual behavior along with medical needs.

When children tell their friends they have AIDS: possible consequences for psychological well-being and disease progression.

Objective: Past research has demonstrated that self-disclosure of traumatic or secretive information produces observable health benefits. Self-disclosure has also been linked, albeit less consistently, to improved psychological health. The present study examined the physiological and psychological consequences of children’s self-disclosure of their HIV/AIDS status to friends. Methods: Data were collected twice, one year apart, from 64 caregiver-child dyads in which all of the children were infected with HIV. Dependent variables included the child’s CD4%, self-concept, and level of behavioral problems. Results: Children who had disclosed their HIV+ diagnosis to friends during the 1-year course of the study had a significantly larger increase in CD4% than children who had told their friends before the study or those children who had not yet disclosed their HIV+ diagnosis to friends. This effect remained significant when the child’s age and level of medication (protease inhibitors) were statistically controlled. Self-disclosure to friends did not impact the child’s behavior or self-concept. Conclusions: This is the first study to investigate the effect of self-disclosure in children. The results were consistent with previous studies showing the positive health consequences of self-disclosure in adults, and suggest potentially important implications for professional and familial care givers of HIV/AIDS individuals.

Transition from a Pediatric HIV Intramural Clinical Research Program to Adolescent and Adult Community-Based Care Services

Abstract As treatment options have improved, there has been a significant increase in the life expectancy of HIV-infected children and adolescents. For most adolescents, the time comes when it is appropriate to transition from pediatric care to an adult or community-based provider. In response to a program closure, a transition readiness scale was developed. A total of 39 caregivers of HIV-infected youth (ages 10–18) and 12 youth over the age of 18 years were interviewed at two time points. Barriers associated with transition were identified and addressed between visits. Transition readiness improved and state anxiety decreased significantly from the first time point to the last visit (approximately 7 months later). Not having a home social worker was the most reported concern/need identified. Barriers to transition and interventions utilized to assist with transitioning care are discussed.

STARBRIGHT World: Effects of an Electronic Network on the Social Environment of Children With Life-Threatening Illnesses

STARBRIGHT World (SBW) is a virtual environment designed to link seriously ill children into an interactive online community in which they can play games, learn about their medical condition, or talk with other chronically ill children. This study evaluated the impact of SBW on pain, mood, anger, loneliness, problem behavior, and willingness to return for treatment of children receiving outpatient treatment at the National Institutes of Health (NIH). To test the hypothesis that SBW provides benefit through distraction, a restricted alternating treatments design was utilized to measure anger, pain, and mood. To test the more long-term benefits of SBW, loneliness and problem behavior were measured at baseline and at the end of the study. Willingness to return was measured at each hospital visit made during the study. Process information was also collected during each SBW session (e.g., ease of use, frustration, and general enjoyment of the system). Thirty-two children participating in pediatric clinical trials at the NIH and their caregivers participated in the study. Seventy-eight percent of participants, ages 8 to 19 years, were HIV infected and the remaining 22% had varied, but potentially life-threatening, illnesses. Children reported significantly less loneliness and were significantly more willing to return to the hospital for treatment from baseline to follow-up. They were marginally less worried after using SBW than after using the regular playroom. Parents reported that their children experienced significantly less withdrawn behavior and needed significantly less help with both anxiety and resistance in returning to the hospital for treatment after using SBW. They also reported that SBW helped their children to feel decreases in loneliness and depressed mood, and increases in energetic mood. SBW is a potentially useful tool to improve the hospital experience for seriously ill children, reduce their feelings of loneliness and isolation, and help them to be less socially withdrawn.

ShopTalk: a pilot study of the feasibility and utility of a therapeutic board game for youth living with cancer

PurposeShopTalk is a therapeutic game, created to help youth living with cancer talk about their illness in a non-threatening way. The aim of this study is to learn how the game is being used in clinical settings and to gather information regarding the usefulness of ShopTalk in establishing a therapeutic relationship and in assessing key psychosocial issues in the childs life.MethodsShopTalk was distributed at a social work pediatric oncology conference and to 70 sites. Game holders were asked to complete a survey regarding their clinical experience using ShopTalk.ResultsResponses came from 110 professionals. ShopTalk has been found to be as an effective tool in identifying coping skills and psychological adjustment, as well as issues related to family relationships, depression/sadness, stress, prognosis, peer relationships, and self-esteem. Respondents found ShopTalk useful from diagnosis to end of life. Qualitative feedback suggested therapeutic value along with discomfort with specific questions.ConclusionShopTalk appears to be a beneficial therapeutic tool in building rapport and identifying and discussing difficult issues with medically ill children. Areas for future versions of the game and research exploring patient/therapist outcomes are discussed

Validity, specificity, feasibility and acceptability of a brief pediatric distress thermometer in outpatient clinics

Psychosocial distress is under‐recognized in children with cancer and other serious medical illnesses because of a focus on pressing medical concerns.

A worldview of the professional experiences and training needs of pediatric psycho‐oncologists

Thirty years after the origin of the field of psycho‐oncology, limited data exist about the work practices of professionals providing psychosocial care to children with cancer and their families.

Socio-Environmental Factors Associated With Lone Parenting Chronically Ill Children

This article reports findings from 2 studies assessing the relation between parental perception of “lone” parenting and socioeconomic factors, including low income, perception of child health, and parental emotional distress among parents of chronically ill children. In both studies, parents who considered themselves a lone parent when caring for their ill child had significantly lower incomes and greater distress (i.e., were more likely to score at or above clinical or “case” cutoffs on the Brief Symptom Inventory) than those who considered themselves to be married or partnered. Longitudinal research is needed to determine the impact of lone parenting and low income on parental and child health outcomes over time.