Psychosocial standards of care for children with cancer and their families: A national survey of pediatric oncology social workers

Abstract

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.

Gender‐specific differences in parental health‐related quality of life in childhood cancer

“…Regarding the strong predictive effect of distress and other psychosocial variables on negative HRQoL outcomes, it is important to systematically perform psychosocial screening in clinical practice and provide interventions to families. This has been stressed in the standards of care for parents, but a recent study has shown that systematic screening for parental needs is still lacking in many hospitals . A recent study from our group showed that early screening with the Psychosocial Assessment Tool (PAT) resulted in lower distress later in the treatment trajectory, which underscores the benefits of this monitoring In our study, time since diagnosis was not of major importance in predicting parental HRQoL.…”

“…This has been stressed in the standards of care for parents, 46 but a recent study has shown that systematic screening for parental needs is still lacking in many hospitals. 47 apy and an exercise-based intervention. 51,52 In the future, attention should be given to the specific needs of fathers, especially in helping them to improve their social network.…”

Feasibility of systematic poverty screening in a pediatric oncology referral center

“…These psychosocial standards were publicly endorsed by a majority of pediatric oncology national organizations, including the Children's Oncology Group, the American Society of Pediatric Hematology/Oncology, the American Psychosocial Oncology Society, the Association of Pediatric Oncology Social Workers, and the Association of Pediatric Hematology/Oncology Nurses, among others. In the intervening 3 years, studies investigating the implementation of these standards of care found that over 40% of centers report nonadherence to systematic assessment of family financial burden . These studies concluded that there is a need for more evidence‐based approaches to inform the feasibility of practically implementing systematic poverty screening across a wide range of pediatric oncology practices.…”

Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment

“…However, children with cancer experience significant psychological distress during their treatments and beyond, with more than half of children reporting anxiety and depression during the early days after diagnosis . In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families . However, these standards are not routinely integrated across institutions and significant gaps exist in the implementation of the standards.…”

“…31 In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. 32,33 However, these standards are not routinely integrated across institutions and significant gaps exist in the implementation of the standards. Psychological distress remains underappreciated and underreported by clinicians; thus, this domain exemplifies the need for robust child self-report measures.…”