Lori Wiener

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.

The Future of Pediatrics: Mental Health Competencies for Pediatric Primary Care

Pediatric primary care clinicians have unique opportunities and a growing sense of responsibility to prevent and address mental health and substance abuse problems in the medical home. In this report, the American Academy of Pediatrics proposes competencies requisite for providing mental health and substance abuse services in pediatric primary care settings and recommends steps toward achieving them. Achievement of the competencies proposed in this statement is a goal, not a current expectation. It will require innovations in residency training and continuing medical education, as well as a commitment by the individual clinician to pursue, over time, educational strategies suited to his or her learning style and skill level. System enhancements, such as collaborative relationships with mental health specialists and changes in the financing of mental health care, must precede enhancements in clinical practice. For this reason, the proposed competencies begin with knowledge and skills for systems-based practice. The proposed competencies overlap those of mental health specialists in some areas; for example, they include the knowledge and skills to care for children with attention-deficit/hyperactivity disorder, anxiety, depression, and substance abuse and to recognize psychiatric and social emergencies. In other areas, the competencies reflect the uniqueness of the primary care clinicians role: building resilience in all children; promoting healthy lifestyles; preventing or mitigating mental health and substance abuse problems; identifying risk factors and emerging mental health problems in children and their families; and partnering with families, schools, agencies, and mental health specialists to plan assessment and care. Proposed interpersonal and communication skills reflect the primary care clinicians critical role in overcoming barriers (perceived and/or experienced by children and families) to seeking help for mental health and substance abuse concerns.

Dideoxyinosine in children with symptomatic human immunodeficiency virus infection.

Abstract Background. 2′,3′-Dideoxyinosine (ddI) is a dideoxynucleoside with potent activity in vitro against the human immunodeficiency virus (HIV). In initial clinical trials in adults, ddI showed evidence of antiretroviral activity with little hematologic toxicity. Methods. We conducted a phase I–II study in 43 children with symptomatic (CDC class P-2) HIV infection. Of these children, 16 (median age, 10 years) had previously received zidovudine, and 27 (median age, 2.6 years) had not. ddI was administered orally in three divided doses totalling 60, 120, 180, 360, or 540 mg per square meter of body-surface area per day for 24 weeks. Eight of the 43 patients did not complete 24 weeks of ddI: 6 died, 1 was withdrawn because of progressive disease, and the other because of toxicity. Results. After oral administration, ddI was rapidly absorbed, although its bioavailability varied greatly among patients. Pancreatitis developed in two children, one receiving ddI at each of the two highest doses. The median CD...

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.

Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue

Pediatric oncology psychosocial professionals collaborated with an interdisciplinary group of experts and stakeholders and developed evidence‐based standards for pediatric psychosocial care. Given the breadth of research evidence and traditions of clinical care, 15 standards were derived. Each standard is based on a systematic review of relevant literature and used the AGREE II process to evaluate the quality of the evidence. This article describes the methods used to develop the standards and introduces the 15 articles included in this special issue. Established standards help ensure that all children with cancer and their families receive essential psychosocial care. Pediatr Blood Cancer

Cultural and religious considerations in pediatric palliative care.

OBJECTIVE A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. METHOD Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. RESULTS Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care. SIGNIFICANCE OF RESULTS The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.

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.

Treatment late effects in long-term survivors of pediatric sarcoma

To assess health and musculoskeletal function in survivors of pediatric sarcomas.