Although a significant body of evidence outlines the psychosocial risks for children and their families throughout the cancer journey, there is significant variability in the services offered within the healthcare setting. The Psychosocial Standards of Care Project for Childhood Cancer (PSCPCC) set out to develop and publish standards that would underpin best practice in pediatric psychosocial care to address this critical gap.
The PSCPCC brought together a multidisciplinary group of professionals crossing pediatric psychology, psychiatry and social work to develop evidence- and consensus-based standards for pediatric psychosocial care. This collaborative approach was critical because all disciplines need to be able to relate to the standards and implement them in a variety of healthcare settings and tailor them to their own resources.
With evidence to show psychosocial care contributes to positive quality of life outcomes, the ultimate aim of this initiative is to ensure that all children with cancer and their families have universal access to psychosocial support and intervention.
In 2012, patient advocacy organization Mattie Miracle Cancer Foundation – the impetus for this initiative – sponsored a Congressional briefing and symposium attended by key opinion leaders, parent advocates (parents of current pediatric patients, survivors and bereaved parents) and legislators and survivors to emphasize the need for psychosocial care for children with cancer.
It became clear from this meeting that professional, evidence-based standards would need to be developed if legal and/or government backing for universal psychosocial support for children with cancer and their families were to be obtained.
The PSCPCC completed a systematic review of existing research, guidelines and recommendations – as well as conducting surveys, think-tanks and working groups – to develop a comprehensive and widely accepted set of standards that would guide future best practice.
The 15 standards for pediatric psychosocial care are the result of what the authors believe is the largest comprehensive review of pediatric psychosocial literature ever conducted – including in excess of 1,200 quantitative, qualitative and mixed-method studies – backed by meta-analyses, reviews, consensus reports and recommendations from relevant professional organizations.
This rigorous process led to tangible standards of pediatric psychosocial care regardless of the treatment setting and provided a jump-off point for cancer centers to evaluate and review their own service provision and identify areas where improvements are most needed relevant to their healthcare environment and available resources.
With 11 professional organizations supporting these standards, next steps are to assess the rate of change toward implementation to ensure all pediatric cancer sites provide an acceptable level of evidence based care. Further recommendations to improve guideline implementation and utilization, as well as encourage broader dissemination, are also being developed. New research will be reviewed annually and the guidelines updated as required.
Hints and tips
- Identify the issue and define what is needed to address the challenges at hand.
- Identify and pull together multidisciplinary, motivated, healthcare professionals and stakeholders.
- Rigorously study the evidence and have a plan in place to be able to re-evaluate your findings if required.
- Work collaboratively with people outside of your field, not just those you’re most comfortable in working with.
- Check your end result meets your mission.
To read the Standards for Psychosocial Care for Children With Cancer and Their Families, please click here.