Research regarding siblings of children with cancer continues to be methodologically limited. The conclusions of qualitative and quantitative studies differ considerably. We propose a research agenda to propel this field forward including greater attention to alterations in normative development (as opposed to psychiatric conditions), development of more appropriate quantitative measures, examination of potential moderators of adaptation, and use of prospective longitudinal designs. Siblings of children with cancer are a psychosocially at-risk group and should be provided with appropriate supportive services.

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.

Despite methodological limitations, research indicates a strong need for sibling support. Clinical recommendations include identifying at-risk siblings and developing interventions to facilitate family communication and increase siblings' social support, cancer-related knowledge, and treatment involvement. Future longitudinal studies focusing on mechanisms and moderators of siblings' adjustment would inform timing and targets of psychosocial care.

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. Pediatr Blood Cancer 2015;62:S750-S804. C 2015 Wiley Periodicals, Inc.Key words: adjustment; cancer; intervention; pediatric; sibling INTRODUCTIONSiblings are exposed to significant stress when a child is diagnosed with cancer. Concern about the ill child, disruptions in family roles and routines, decreased contact with family members, and additional demands for caregiving or other responsibilities in the home are common. [1,2] In some cases, siblings are also called upon to serve as a donor for stem cell transplant, which can introduce other ethical and psychosocial concerns. [3] Taken together, these unique challenges leave siblings of children with cancer at risk for acute and long-term psychosocial difficulties. However, there are no current evidence-based standards for the supportive care of siblings of children with cancer.Although severe psychopathology is rare, several reviews suggest that some siblings exhibit symptoms of anxiety, depression, posttraumatic stress; lower quality of life and healthcare utilization; and disruption to academic and social functioning. [1,2,4,5] Most difficulties improve over the first year after diagnosis, but they may resurface or worsen with declines in the ill child's health or death.[6] Siblings can also demonstrate resilient outcomes, such as posttraumatic growth. [4,7] This variability in adjustment underscores the need for accurate screening to identify risk and protective factors and to provide appropriate services for siblings vulnerable to difficulties. Unfortunately, siblings have unmet needs and psychosocial support may be limited. [8,9] Further, in a large survey of professionals from three pediatric oncology organizations, only 25% reported that they provide psychosocial services to siblings.[10] Thus, it is critically important to establish evidence-based standards of care for siblings of children with cancer in efforts to encourage the provision of more consistent and comprehensive services for this population. METHODSThis review was performed as a part of the collaborative effort, Standards for Psychosocial Care of Children with Cancer and Their Families. A full description of the methods used to develop each standard is in the introduction to this special issue.[11] The literature search for this standard used three ...

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Introduction Research focusing on the long-term sequelae of diagnosis and treatment for childhood cancer suggests that although the majority of survivors are not at increased risk for psychopathology, many experience persistent problems in other domains that greatly affect quality of life (QoL). One such domain is social functioning. To date, little is known about the impact of childhood cancer on social functioning and related QoL during emerging adulthood, the developmental period that spans the late teens and early twenties and is characterized, in part, by explorations in love and romantic relationships. Aim To document emerging adult survivors’ perceptions of their romantic relationships through a descriptive qualitative study. Main Outcome Measures Recurrent themes from interviews were extracted via qualitative content-based analysis. Methods Eighteen female survivors of childhood cancer, ages 18–25, participated in a phone interview focused on past and present romantic partnerships. Results Themes from coded transcripts included redefined life priorities and perspective, concerns with disclosure of cancer history and emotions, negative body image as a result of illness and treatment side effects, and worries about fertility and health of future children. Survivors related these concerns to their histories of childhood cancer and discussed the impact on the development and maintenance of romantic relationships. Conclusions Overall, survivors reported a number of relationship concerns that have the potential to interfere with their ability to move toward emotional and physical intimacy in relationships, a key task of emerging adulthood. These findings suggest a number of testable hypotheses for future research, have the potential to inform the construction of new measures that more accurately evaluate social functioning of childhood cancer survivors, and emphasize the importance of ongoing assessment by health care providers of developmentally salient issues like love/romance.

Primary caregivers with lower levels of perceived social support may benefit from preemptive stress management intervention.

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.