Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases

Abstract

Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent’s understanding of their child’s illness, goals of care, and what mattered most to their child from the parent’s perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease.

Goals of Care Among Parents of Children Receiving Palliative Care

“…Third, across months and years of received palliative care, maintaining the child’s health continued to be important to parents. The few studies that have examined parents’ goals at different times have been retrospective or 1-time cross-sectional studies with qualitative data (eg, in 1 study visit, parents were asked to recall and report on goals at multiple time points in the past) . Lastly, we found that parents who differentiated the GOCs by importance scores had more stable goal priorities over time, an issue which, to out knowledge, has not been examined before.…”

Model Family Centered Care in Children With Diabetes Melitus : A Philosophical Perspective

“…Giving authority to the family means opening the way for the family to know the strength, ability of the family in caring for children. (Fratantoni et al, 2022)…”

“…Giving authority to the family means opening the way for the family to know the strength, ability of the family in caring for children. (Fratantoni et al, 2022) Philosophically, the involvement of parents and children in their own care is very important. This does not mean simply asking them what they think or talk about with parents and not for children (of course, this is age related).…”

Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease

“…The question of whether or not pediatric advance care planning (pACP) matters to the parents of children with rare diseases, particularly for those children who are unable to participate in decision making, is only beginning to be explored. Fratantoni and colleagues beta tested a pACP intervention with six families [ 10 ]. Their article describes a qualitative analysis of structured interviews examining what parents thought mattered most to their child and what they would want their doctor to know.…”