Kristin A. Long

Psychosocial adjustment of siblings of children with cancer: a systematic review.

Objectives: To promote a broader understanding of the psychosocial impact of childhood cancer on siblings, a systematic review was undertaken. Directions for future research are proposed and clinical strategies are suggested for addressing the needs of these children.

Family Adjustment to Childhood Cancer: A Systematic Review

This systematic review integrates qualitative and quantitative research findings regarding family changes in the context of childhood cancer. Twenty-eight quantitative, 42 qualitative, and one mixed-method studies were reviewed. Included studies focused on family functioning, marital quality, and/or parenting in the context of pediatric cancer, were written in English, and were published between 1996 and 2009. Overall, qualitative findings show that families alter roles, responsibilities, and day-to-day functioning to accommodate the needs of children with cancer. Although some degree of family reorganization is normative, the extent and impact of these changes varies. Quantitative work shows that mean levels of family functioning (e.g., cohesion, flexibility) are similar between families facing cancer and normative or comparison samples. However, families follow different trajectories of improvement, decline, or stability in family closeness and marital quality. Parenting has received limited quantitative research attention, but qualitative work suggests that parents perceive deeper bonds with ill children and may spoil or overprotect them. Conclusions support future work examining the influence of family-level variables on the adjustment of individual family members.

Cumulative family risk predicts sibling adjustment to childhood cancer

Prolonged, intensive treatment regimens often disrupt families of children with cancer. Siblings are at increased risk for distress, but factors underlying this risk have received limited empirical attention. In this study, the authors examined associations between the family context and sibling distress.

Supporting Siblings as a Standard of Care in Pediatric Oncology

In this study, evidence is provided for supporting siblings as a standard of care in pediatric oncology. Using Medline, PsycInfo, and CINAHL, a systematic search of articles published over the past two decades about siblings of children with cancer was conducted. A total of 125 articles, which were primarily descriptive studies, were evaluated by the four investigators using Grading of Recommendations Assessment, Development, and Evaluation (GRADE) criteria. There is moderate‐quality evidence, as well as support from community stakeholders, to justify a strong recommendation that siblings of children with cancer should be provided with psychosocial services and that parents and professionals are advised about how to meet siblings’ needs.

Preliminary Evidence for the Feasibility of a Stress Management Intervention for 7- to 12-Year-Olds with Asthma

Objective. Evidence supports a bidirectional relationship between stress and asthma exacerbations in children, suggesting that interventions to reduce stress may improve both psychosocial quality of life and disease course. Here, we examine the feasibility of a stress management intervention for 7- to 12-year-olds with asthma. Methods. Two trials were conducted. Cohort 1 (n = 11) was recruited from the community and attended intervention sessions at an urban university. Cohort 2 (n = 7) was school based and recruited from an African American charter school. Six individual intervention sessions focused on psychoeducation about asthma, stress, and emotions; problem-solving and coping skills training; and relaxation training paired with physiological feedback. Pre- and post-intervention stress, mood, and lung function data were collected. Satisfaction surveys were administered after intervention completion. Results. The intervention was rated as highly acceptable by participating families. Feasibility was much stronger for the school-based than the university-based recruitment mechanism. Initial efficacy data suggest that both cohorts showed pre- to post-intervention improvements in lung function, perceived stress, and depressed mood. Conclusion. Findings provide evidence for the feasibility of offering asthma-related stress management training in a school setting. Initial findings offer support for future, large-scale efficacy studies.

Brief report: A Pilot Study of a Web-based Resource for Families of Children with Cancer

OBJECTIVE To develop a Web-based resource for families of children newly diagnosed with cancer and examine the viability of this modality of providing support. METHODS Twenty-one children (8-17 years) newly diagnosed with cancer and their families were enrolled. Quantitative data on Web site utilization and frequency of accessing specific sections and qualitative data on participant satisfaction are reported. RESULTS Twenty-one families comprising 51 participants (children with cancer, parents, and siblings) had access to the Web site. Utilization was lower than anticipated, with members of only nine families accessing the site. The majority of these hits were on peer discussion groups. CONCLUSION Further research is warranted to examine whether the Internet is a viable method of delivering support to families affected by childhood cancer. The current pattern of results suggests that the timing of its introduction and the method used to train families may affect utilization.

Creating a Tenuous Balance Siblings’ Experience of a Brother’s or Sister’s Childhood Cancer Diagnosis

More than 14,000 children are diagnosed with cancer in the United States each year. Prolonged, intensive treatment protocols disrupt the entire family, including siblings. Here, we employed grounded theory methodology to examine the experiences of 30 nonbereaved adolescent siblings of children receiving cancer treatment. The central organizing theme of the emergent data is “creating a tenuous balance.” Contributing themes include (a) knowing something is seriously wrong, (b) figuring out the meaning of cancer, (c) adapting to changes in personal and family life, and (d) handling emotional reactions to cancer. Overall, findings suggest an ongoing, active process by which siblings notice and adapt to the many unexpected and taxing aspects of their brother’s or sister’s cancer diagnosis and treatment, including shifts in how the family system operates. Findings highlight the important role of siblings in family-centered cancer care. Future, larger scale research should develop targeted interventions for these siblings.

A Pilot Trial of a Stress Management Intervention for Primary Caregivers of Children Newly Diagnosed With Cancer: Preliminary Evidence That Perceived Social Support Moderates the Psychosocial Benefit of Intervention

OBJECTIVES (1) To examine the acceptability and feasibility of a stress management intervention for caregivers of children recently diagnosed with cancer. (2) To explore whether caregivers with lower baseline perceived social support derive greater benefit from the intervention than those with higher perceived support. METHODS 45 primary caregivers were randomly assigned to intervention or standard care. Of these, 37 completed measures of social support, depression, anxiety, and perceived stress at both pre-intervention (T1; mean = 24 days post-diagnosis) and post-intervention time points (T2; mean = 165 days post-diagnosis). RESULTS Enrollment, retention, and satisfaction data support feasibility and acceptability of the intervention. There was no overall significant impact of participation in the intervention on levels of distress at T2. However, T1 social support moderated intervention response, with caregivers who perceived lower T1 support showing greater psychological benefit from the intervention. CONCLUSIONS Primary caregivers with lower levels of perceived social support may benefit from preemptive stress management intervention.

The Role of Contextual Threat in Predicting Self-Reported Distress among Siblings of Children with Cancer

Each year, 14,000 children are diagnosed with cancer in the United States. Prolonged, intensive treatment regimens disrupt the entire family system, but effects on siblings are poorly understood. In this preliminary investigation, we employed a risk and resistance framework to study adjustment among 30 siblings (aged 10–17) of children undergoing cancer treatment. We examined whether or not objective stress associated with the cancer experience (contextual threat) predicted sibling distress and explored demographic and disease-related predictors of sibling adjustment. Contextual threat was positively associated with sibling-reported distress, independent of sibling age, gender, birth order relative to the child with cancer, and cancer treatment intensity. From among the demographic and disease-related factors, only younger birth order relative to the child with cancer was independently associated with sibling distress. These results suggest that a subset of siblings may be at increased risk for elevated distress in the face of their brother’s or sister’s illness.

Child‐rearing in the context of childhood cancer: Perspectives of parents and professionals

Elevated distress has been well documented among parents of children with cancer. Family systems theories suggest that cancer‐related stressors and parental distress have the potential to affect child‐rearing practices, but this topic has received limited empirical attention. The present work examined self‐reported child‐rearing practices among mothers and fathers of children with cancer and matched comparisons.