Parent-Child Communication and Reproductive Considerations in Families with Genetic Cancer Predisposition Syndromes: A Systematic Review.

Background: Uptake of genetic testing for heritable conditions is increasingly common. In families with known autosomal dominant genetic cancer predisposition syndromes (CPS), testing youth may reduce uncertainty and provide guidance for future lifestyle, medical, and family building considerations. The goals of this systematic review were to examine: (1) how parents and their children, adolescents, and young adults (CAYAs) communicate and make decisions regarding testing for CPS and (2) how they communicate and make decisions about reproductive health/family building in the context of risk for CPS. Methods: Searches of MEDLINE/Pubmed, CINAHL, Web of Science, and PsycINFO yielded 4161 articles since January 1, 2000, which contained terms related to youth, pediatrics, decision-making, genetic cancer predispositions, communication, and family building. Results: Articles retained (N = 15) included five qualitative, six quantitative, and four mixed-method designs. Parents generally agreed testing results should be disclosed to CAYAs at risk or affected by genetic conditions in a developmentally appropriate manner. Older child age and child desire for information were associated with disclosure. Greater knowledge about risk prompted adolescents and young adults to consider the potential impact on future relationships and family building. Conclusions: Most parents believed it was their responsibility to inform their CAYAs about genetic testing results, particularly to optimize engagement in recommended preventative screening/lifestyle behaviors. Disclosing test results may be challenging due to concerns such as young age, developmental appropriateness, and emotional burden. Additional research is needed on how CPS risk affects CAYAs' decisions about reproductive health and family building over time.

Demographic, medical, and psychosocial predictors of benefit finding among caregivers of childhood cancer survivors.

BACKGROUND: There is a growing body of literature examining benefit finding, or finding positive outcomes in the face of adversity, among both adults and children with chronic conditions, and to some degree among caregivers. This study examined demographic, medical, and psychosocial predictors of greater benefit finding specifically among caregivers of childhood cancer survivors. METHODS: Caregivers of children who had completed treatment for cancer (n = 83) completed measures assessing child and caregiver demographic information and caregiver coping (active, acceptance, emotion-focused, and avoidant), optimism, social support, caregiving burden, posttraumatic stress symptoms, illness impact (how much caregivers feel impacted by their child's illness in various domains), and benefit finding (positive outcomes). RESULT: Regression analyses indicated that positive spiritual coping, optimism, and illness impact uniquely predicted overall benefit finding for caregivers of childhood cancer survivors. CONCLUSION: Results point to adaptive tendencies that are associated with finding benefits when caring for a childhood cancer survivor and suggest potential avenues for intervention among this population. Copyright © 2015 John Wiley & Sons, Ltd.

Benefit Finding and Quality of Life in Caregivers of Childhood Cancer Survivors: The Moderating Roles of Demographic and Psychosocial Factors.

BACKGROUND: Benefit finding, or finding positive outcomes in the face of adversity, may play a role in predicting quality of life (QoL) among caregivers, but mixed results suggest that other factors may moderate this relationship. OBJECTIVE: This study examined demographic and psychosocial moderators of the association between benefit finding and QoL among caregivers of childhood cancer survivors. METHODS: Caregivers of childhood cancer survivors (n = 83) completed measures of benefit finding, QoL, coping, optimism, social support, caregiving demand, posttraumatic stress, and demographics. RESULTS: The relationship between benefit finding and QoL was moderated by caregiver age, marital status, socioeconomic status, geographic location, acceptance and emotion-focused coping, optimism, caregiving demand, and posttraumatic stress. Benefit finding was more strongly related to QoL among caregivers with fewer demographic/psychosocial resources. CONCLUSIONS: Results suggest that finding benefits in the cancer experience may have a greater positive impact for caregivers with relatively fewer demographic and psychosocial resources and may have less of an impact for caregivers with relatively greater resources. Findings further point to the complex nature of QoL among caregivers of childhood cancer survivors. IMPLICATIONS FOR PRACTICE: Results may aid clinicians in identifying caregivers at particular risk for low QoL. They may be counseled to find benefits in their experience or provided with resources to strengthen other factors that impact QoL.

Barriers to the Use of Psychosocial Support Services Among Adolescent and Young Adult Survivors of Pediatric Cancer.

Purpose: Adolescent and young adult (AYA) survivors of pediatric cancer commonly report both functional and emotional difficulties, yet many of their mental health needs are not met. Given the unique needs of these survivors, this study examined barriers to psychosocial support service utilization in this population, including accessibility, personal preferences, and practical barriers such as insurance and transportation. Methods: Thirty-six adolescent and young adult survivors of pediatric cancer (aged 15-29) with mental health difficulties (i.e., anxiety or depression) completed surveys assessing access and utilization of services and barriers to utilization. Services assessed included the use of mental health professionals, a pastor or someone in a place of worship, and support groups. Results: Half of the participants utilized a mental health professional, but other forms of support were used less frequently. Utilization of services was related to insurance status and use of prescription medication. Greater time since completion of treatment was a barrier to utilizing psychosocial support services. Conclusion: Use of psychosocial support services is linked closely with use of other healthcare services, including taking prescription medication for mood difficulties. Results have implications for how primary care and oncology providers address barriers to these services among AYA survivors of pediatric cancer.