Integrating the patient and caregiver voice in the context of pediatric, adolescent, and young adult care: A family-centered approach

Abstract

Family-centered care (FCC) is defined as an approach to care coordination founded in collaborative partnerships between healthcare providers, patients and their family caregivers. Amid the enthusiasm for FCC in the pediatric setting, opportunities have been identified to operationalize the engagement of pediatric, adolescent and young adult patients and their caregivers into decision making that translates not only to their healthcare, but also to the context in which care is provided, as well as the research informing their care. At a National Cancer Institute-designated comprehensive cancer center, the Children's Cancer Hospital was instrumental in designing and implementing patient and family engagement councils to inform institutional policies, guidelines, environment of care and research. The councils include: he Family Advisory Council, the Supportive Care Council, the Young Adult Advisory Council, and the Patient Advisory Council for Teens (imPACT). The development and outcomes of these councils is presented as an exemplar for patient and family engagement that translates to tangible healthcare delivery initiatives.

Parental Engagement in Identifying Information Needs After Newborn Screening for Families of Infants with Suspected Athymia

“…Patient and Public Involvement and Engagement (PPIE) activity, including family involvement in paediatrics, is increasingly recognised in practice, policy and research as a fundamental requirement when setting priorities and designing services to improve patient care [ 65 – 68 ]. It provides opportunities for collaborative working, increasing patient choice and shared decision making [ 66 , 67 , 69 ], but even when clinical innovation is manifest and patient advocacy groups are active, there is disparity in the implementation of PPIE activities, most being delivered in research [ 67 , 70 , 71 ]. Across the field of NBS, PPIE work has exposed challenges for clinicians in patient and family counselling on rare diseases outside of specific specialist services, which can contribute to compromising patient and family journeys, with parents on occasion reporting the diagnostic period following NBS a lasting traumatic experience [ 72 , 73 ].…”

“…Currently no dedicated advocacy group exists for congenital athymia, however given this growing cohort, the development of an official support and advisory council could be considered in partnership with medical institutions and parent advocates. Such networks have been shown to be successful in similar instances [ 69 , 76 ].…”

Journey Mapping to Improve Patient-Family Experience and Teamwork: Applying a Systems Thinking Tool to a Pediatric Ambulatory Clinic

“…There is a commitment to communicating in ways that children can understand, to create a welcoming environment, and to develop meaningful partnerships with children, families, and one another 7,8. Family Advisory Councils and Patient and Family Advisory Councils have been longstanding structures in pediatrics to engage patients, especially adolescents, and families as partners in improvement 9. Family engagement also improves patient safety for children, especially those with medical complexity, with increased identification of medical errors 10.…”

“…7,8 Family Advisory Councils and Patient and Family Advisory Councils have been longstanding structures in pediatrics to engage patients, especially adolescents, and families as partners in improvement. 9 Family engagement also improves patient safety for children, especially those with medical complexity, with increased identification of medical errors. 10 Journey mapping aligns with the pediatric approach of empathizing and improving the patient and family experience.…”