Fit for Duty: Lessons Learned from Outpatient and Homebound Hematopoietic Cell Transplantation to Prepare Family Caregivers for Home-Based Care.

In the past decade, the demand for home-based care has been amplified by the Coronavirus disease 2019 pandemic. Home-based care has significant benefits for patients, their families, and healthcare systems, but it relies on the often-invisible workforce of family and friend caregivers who shoulder essential health care responsibilities, frequently with inadequate training and support. Hematopoietic cell transplantation (HCT), a potentially curative but intensive treatment for many patients with blood disorders, is being increasingly offered in home-based care settings and necessitates the involvement of family caregivers for significant patient care responsibilities. However, guidelines for supporting and preparing HCT caregivers to effectively care for their loved ones at home have not yet been established. Here, informed by the literature and our collective experience as clinicians and researchers who care for diverse patients with hematologic malignancies undergoing HCT, we provide considerations and recommendations to better support and prepare family caregivers in home-based HCT and, by extension, family caregivers supporting patients with other serious illnesses at home. We suggest tangible ways to screen family caregivers for distress and care delivery challenges, educate and train them to prepare for their caregiving role, and create an infrastructure of support for family caregivers within this emerging care delivery model.

Grandparents of children with cancer: a controlled comparison of perceived family functioning.

PURPOSE: Grandparents can be profoundly emotionally affected when a grandchild is diagnosed with cancer. They also often provide invaluable support for the family (e.g., caring for the sick child and/or siblings). Multigenerational family functioning may therefore change. Limited research has assessed grandparents' perspectives after their grandchild is diagnosed with cancer. In this study, we aimed to (1) assess differences in perceived family functioning among grandparents of a child with cancer and grandparents of healthy children and (2) assess the cancer-specific and demographic factors related to perceived family functioning in grandparents of a grandchild with cancer. PROCEDURE: Grandparents of a child with cancer (n = 89) and grandparents of healthy children (n = 133) completed the general functioning, communication, and problem-solving scales of the Family Assessment Device. We used multilevel models with a random intercept to detect (1) between-group differences and (2) identify factors related to perceived family functioning among grandparents with a grandchild with cancer. RESULTS: Grandparents with a grandchild with cancer reported poorer family functioning than grandparents with healthy grandchildren. Among the grandparents with a grandchild with cancer, impairments in family functioning were correlated with fewer years since diagnosis, providing care to their sick grandchild and/or siblings and living far away from the sick grandchild. CONCLUSIONS: The detrimental impact of childhood cancer likely extends beyond the immediate family members. Including grandparents in interventions-beginning at diagnosis-to reduce distress and increase cohesion for families of a child with cancer is warranted, particularly for grandparents who provide care to their sick grandchild or siblings.

The perceived influence of childhood cancer on the parents' relationship.

OBJECTIVE: When a child is diagnosed with cancer, parents are faced with many practical and emotional challenges that can significantly affect their relationship. This study explores how having a child with cancer affects the quality of the parents' relationship, categorizes time points and events during the child's treatment when the relationship becomes most stressed and/or strengthened, identifies factors that help couples remain emotionally engaged throughout their child's cancer treatment, and assesses parental interest in a counseling intervention. METHODS: This is a cross-sectional, multicenter study conducted via a semistructured self-administered questionnaire that included the Revised Dyadic Adjustment Scale. RESULTS: One hundred ninety-two parents of children diagnosed between the ages of 1 and 21 participated. Forty percent felt their relationship moved in a negative direction. Diagnosis and relapse of disease were cited as the most individually stressful time points in the disease trajectory, with hospitalizations and relapse being most stressful on the relationship. Participants felt most emotionally connected at diagnosis and least emotionally connected at the start and end of treatment. The majority of couples indicated interest in counseling to address ways to support their relationship. Soon after diagnosis and during treatment was reported as the preferred time to offer these interventions. CONCLUSION: This study identified specific events and parent behaviors that strain the couples' relationship during the childhood cancer trajectory. This information can inform the development of a couple's intervention. Prospective research is needed to better understand how childhood cancer affects caregivers' partnerships through survivorship and beyond.

Brief report: fathering a child living with HIV/AIDS: psychosocial adjustment and parenting stress.

OBJECTIVE: To examine the psychosocial stressors experienced by fathers of children diagnosed with HIV/AIDS. METHODS: Thirty-one fathers whose children (ages 6 to 19) were participating in pediatric HIV clinical trials completed self-report measures of parenting stress, psychological distress, and need for psychosocial services. RESULTS: Over half of this sample experienced significantly elevated levels of both parenting stress and psychological distress compared to standardized norms. Ninety-seven percent of these men reported the need for services including gender-specific support groups, assistance with discipline, disease management, and assistance with planning for the future. CONCLUSIONS: Elevated levels of parenting stress and psychological distress in fathers of children living with HIV suggest the need for additional psychological intervention in this population.

Public disclosure of a child's HIV infection: impact on children and families.

As an increasing number of children infected with HIV live to older ages, the question of disclosure of the diagnosis (to the child and to others) becomes more crucial. Disclosure of a child's HIV diagnosis is a controversial and emotionally laden issue. One reason that families avoid disclosure is their fear of the negative impact on the child and family that the stigma associated with AIDS can bring. At the other end of the spectrum, are those families that choose to publicly disclose an HIV diagnosis. There are a number of reasons that a family may choose to go public with their child's diagnosis, although this has never been systematically assessed. The dearth of literature and research regarding the emotional impact of public life on a child as well as the interest of a number of non-public HIV-infected children to "go public" served as an impetus to conduct a study that directly examined the impact public disclosure has on the HIV-infected child and family. Specifically, findings pertaining to the decision making process, the impact public disclosure has had on the child's family, and the child's sense of self-worth at the time of the study and then again 4 years later are reviewed. Findings and implications for future research as well as interventions and strategies aimed at counseling families considering "going public" and helping to normalize the public child's life are discussed.

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.

Factors associated with parents' decision to disclose their HIV diagnosis to their children.

Parents report that trying to decide whether or not to disclose their HIV diagnosis to their children is as emotionally charged as learning of the diagnosis itself. As part of a larger study, interviews were conducted with 17 parent-child dyads recruited from patients being treated at the National Cancer Institute to understand the factors that affect the process of disclosure of a parent's HIV diagnosis and its consequences. Parents and HIV-infected children were also interviewed and were administered several standardized measures for collecting information on parental depression, family environment, and social support satisfaction. The factors associated with a parent's decision to disclose his or her diagnosis to the children, and implications for clinical practice and future research, are discussed.

Factors associated with disclosure of diagnosis to children with HIV/AIDS.

Disclosure of the diagnosis of human immunodeficiency virus (HIV) infection or acquired immunodeficiency syndrome (AIDS) to a child is a controversial and emotionally laden issue. To understand the factors that affect the process of disclosure and its consequences, we studied 99 parent-child dyads recruited from patients being treated at the National Cancer Institute (NCI). Parents and HIV-infected children were interviewed and administered several standardized measures. Parental depression, family environment, social support satisfaction, socioeconomic status, child and parent gender, child's age, parental HIV serostatus, and disease severity were used to predict disclosure status. Results indicate that the majority of caregivers do disclose the diagnosis to the child, usually with no ill effects, and that age is the most significant predictor of whether or not a child has been told. The Centers for Disease Control and Prevention currently estimate that there are over 6611 children with AIDS (under age 13), and 2184 adolescents with AIDS (ages 13-19) in America. As an increasing number of children who are born infected with HIV live to older ages, the question of when and how to talk with them about their illness becomes more crucial. In addition to the growing number of children infected with HIV, there are many thousands of children profoundly affected by the impact of this disease on a close family member--a mother, father, sibling, or other relative in the kinship network. Yet, the initial reaction most adults have upon learning of their own, or of a family member's, HIV diagnosis is that the diagnosis must be kept a closely guarded secret. One reason frequently cited by parents and family members is their fear that the stigma of AIDS will have a negative impact on their children and their families. Disclosure of an HIV diagnosis to a child is a controversial and emotionally laden issue in the pediatric health-care community as well. However, no systematic research has studied the issues that surround disclosure of an HIV diagnosis to the patient and the factors that predict disclosure.

The HIV-infected child: parental responses and psychosocial implications.

Four dimensions of psychological adaptation of 101 parents of HIV-infected children were examined. Heightened anxiety, depression, and anticipatory grief were associated with child's age at diagnosis, parent's HIV status, and parent's relationship to the child. Parents at higher risk for psychological distress were identified, and an optimum time point for intervention is suggested.

Tomorrow's survivors: siblings of human immunodeficiency virus-infected children.

There has been no empirical research on the psychologic effects on siblings of children afflicted with human immunodeficiency virus (HIV). This article therefore draws from existing sources: the literature of siblings of children with other chronic illnesses and the clinical experiences of those working with HIV-infected children and their siblings. Topics covered include secrecy and communication within the family, the parent-child relationship, the sibling relationship, school issues, the impact of parental mourning on siblings, the sibling's mourning, and recommendations for future research. The goals of this review are to alert researchers to issues that need to be addressed, and to inform the development of interventions for siblings.

The development of a Q-sort behavioral rating procedure for pediatric HIV patients.

Developed a Q-sort procedure to assess social, emotional, and motivational behavior associated with central nervous system disease among 180 HIV-infected pediatric patients. These ratings were factor analyzed and scales were derived based on the factor structure. Younger (M age = 1.03 years) patients with HIV-associated encephalopathy were rated as more apathetic and nonsocial in their behavior than nonencephalopathic younger patients. Older (M age = 7.8 years) encephalopathic patients had significantly higher scores on scales measuring depression, autism, and irritability compared to nonencephalopathic patients from this age group. A subgroup (26 patients) showed a significant decrease in these elevated scores after a 6-month course of AZT.

Pneumocystis carinii pneumonia (PCP) and your child: a parent information booklet.

A parent education booklet describing Pneumocystis carinii pneumonia (PCP) was prepared by the Pediatric Branch of the National Cancer Institute. In addition to information about prophylaxis and treatment of PCP, the booklet discusses overall care of children infected with human immunodeficiency virus.

Social workers' comfort in providing services to AIDS patients.

With the steadily increasing number of people infected with the human immunodeficiency virus, social workers are being called on to play a key role in meeting the complex psychosocial needs of infected individuals and their significant others. To understand more about social workers' levels of comfort in providing services to individuals with acquired immune deficiency syndrome (AIDS) and their family and friends, a survey of social workers in 12 hospital centers was carried out. The majority of social workers were found to be compassionate and sensitive to the needs of this patient population. Several factors were found to be associated with comfort, including various background characteristics, knowledge about the disease, homophobia, negative moral attitudes toward people with AIDS, and the reactions of family and friends. In this article, the authors review these findings and discuss their implications for social work education and practice.