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.