Family financial hardship has emerged as a burden of pediatric cancer treatment with negative implications for family well‐being. As part of an extensive project to create evidence‐based standards for the psychosocial care of children with cancer, we performed a literature review of pediatric cancer‐associated financial hardship utilizing six databases, and identified 24 publications for incorporation into this review. Financial hardship during childhood cancer was found to affect a significant proportion of the population and to negatively impact family well‐being. Existing literature supports a strong recommendation for assessment of financial hardship as a component of comprehensive psychosocial care in pediatric oncology. Pediatr Blood Cancer © 2015 Wiley Periodicals, Inc.

Hematopoietic cell transplantation (HCT) is an important curative treatment for children with high-risk hematologic malignancies and solid tumors, and increasingly, non-malignant diseases. Given improvements in care, there is a growing number of long-term survivors of pediatric HCT. Compared with non-transplanted childhood cancer survivors, HCT survivors have been shown to have a substantially increased burden of serious chronic conditions and impairments involving virtually every organ system and overall quality of life. This likely reflects the joint contributions of pre-transplant treatment exposures and organ dysfunction, the transplant conditioning regimen, and any post-transplant graft versus host disease (GVHD). In response, the Children’s Oncology Group (COG) has created Long-Term Follow-Up Guidelines (www.survivorshipguidelines.org) for survivors of childhood, adolescent, and young adult cancer, including those treated with HCT. Guidelines taskforces, consisting of HCT specialists, other pediatric oncologists, radiation oncologists, organ-specific subspecialists, nurses, social workers, other healthcare professionals, and patient advocates have systematically reviewed the literature with regards to late effects after childhood cancer and HCT since 2002, with the most recent review completed in 2013. For the most recent review cycle, over 800 articles from the medical literature relevant to childhood cancer and HCT survivorship were reviewed, including 586 original research articles. Provided here-in is an organ system-based overview that emphasizes the most relevant COG recommendations (with accompanying evidence grade) for the long-term follow-up care of childhood HCT survivors (regardless of current age) based on a rigorous review of the available evidence. These recommendations cover both autologous and allogeneic HCT survivors, those transplanted for non-malignant diseases, and those with a history of chronic GVHD.

Some themes differentiated sibling donors of successful and unsuccessful transplants, while others were common to both groups. All emergent themes reinforced the importance of providing sibling donors with developmentally appropriate, accurate information and long-term psychological support.

In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. This paper presents data from a national survey of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families. In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care. Both closed and open-ended questions were included. Social work participants reported that psychosocial support is being provided at most cancer centers surveyed, primarily by social workers and child life specialists, addressing adaptation to the cancer diagnosis, treatment, and transitions into survivorship or end-of-life care and bereavement. While social workers reported offering comprehensive services throughout the cancer trajectory, many of the 2015 Standards are not being systematically implemented. Areas for improvement include funding for psychosocial support staff and programs, incorporation of standardized assessment measures, assessment for financial burden throughout treatment and beyond, consistent access to psychology and psychiatry, integrated care for parents and siblings, and more inclusion of palliative care services from time of diagnosis.

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, multi-center study conducted via a semi-structured self-administered questionnaire that included The Revised Dyadic Adjustment Scale. Results 192 parents of children diagnosed between the ages of 1–21 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.

BACKGROUND AND OBJECTIVES: In 2010, the Bioethics Committee of the American Academy of Pediatrics issued recommendations that pediatric hematopoietic stem cell donors should have an independent advocate. Formulating appropriate guidelines is hindered by the lack of prospective empirical evidence from families about the experience of siblings during typing and donation. Our aim was to provide these data. METHODS: Families with a child scheduled to undergo hematopoietic stem cell transplant were recruited. All family members, including children aged 9 to 22 years, were eligible. Qualitative interviews were conducted within 3 time periods: pretransplant, 6 to 8, and 9 to 11 months posttransplant. Quantitative scales assessing decision satisfaction and regret were administered at time 2. RESULTS: Thirty-three families were interviewed. Of the 119 family members, 76% perceived there was no choice in the decision to HLA-type siblings; 77% perceived no choice in sibling donation; 86% had no concerns about typing other than needle sticks; and 64% had no concerns about donation. Common concerns raised were dislike of needle sticks (19%), stress before typing results (14%), and fear of donation (15%). Posttransplantation, 33% of donors wished they had been given more information; 56% of donors stated they benefited from donation. Only 1 donor expressed regret posttransplant. CONCLUSIONS: Most family members did not view sibling typing and donation as a choice, were positive about the experience, and did not express regrets. We recommend education for all siblings before typing, comprehensive education for the donor by a health care provider pretransplant, and systematic donor follow-up after transplantation.

Fifteen evidence‐based Standards of psychosocial care for children with cancer and their families have been established. Despite the importance of implementing the standards, significant barriers and challenges exist. In order to overcome barriers to implementation and assess the level of current psychosocial care, a model of evaluating psychosocial care (Matrix) and a set of pathways toward achieving optimal care (Guidelines) were developed. This special report describes the process involved in the creation of standard templates and development of content based on rigorous reviews from multidisciplinary psychosocial experts, focus groups, and multiple revisions based on further expert review. The resulting Matrix and Guidelines are included as Supplemental Information.

Learning Objectives: After completing this course, the reader will be able to: When the alternative to medical treatment is likely death, ask parents and children whether they agree to the medical plan rather than suggesting they are sharing in “a decision.” Use the model of shared decision in appropriate settings, that is, those in which a bona fide choice exists. This article is available for continuing medical education credit at http://CME.TheOncologist.com Introduction. Shared decision‐making between health care professionals, patients, parents, and guardians is widely recommended today. However, it is unclear what happens when collaborative language is used by physicians in clinical situations for which patients and parents/guardians believe there is no decision to be made. Methods. We conducted a qualitative study of decision‐making for pediatric allogeneic blood and marrow transplantation by interviewing patients, parents, grandparents, donor siblings, and nondonor children after the decision to proceed to transplant but before the transplantation. Each interview was audio recorded, transcribed, and coded for major themes. Results. In total, 107 members of 30 families at four sites were interviewed, including 15 patients, 22 mothers, 2 stepmothers, 1 grandmother, 19 fathers, 3 stepfathers, 1 grandfather, 13 sibling donors, and 31 nondonor children (siblings, half‐siblings, and cousins). In all, 81% of parents/guardians, 73% of patients, 31% of donors, and 29% of other children reported there was no decision to be made. Almost all (88%) parents/guardians indicated that the physician's recommendation was a large determinant in their agreement to go forward with the transplantation. All parents/guardians reported that “agreeing to a plan” was a better description of what their consent entailed. Conclusions. To be respectful of patients and parents/guardians, we suggest that “agreeing to a plan” may be a better description for what parents/guardians must consider when the alternative to a transplantation is likely death. In this clinical context, the shared decision‐making model with a focus on “a decision to be made” may be misleading.