Adaptation and Feasibility of the interRAI Family Carer NeedsAssessment in a Pediatric Setting

摘要

Family carers of children with serious illness contribute many hours of medicalcare in addition to usual daily care. Assessing the needs and supports of familycarers is not routine practice. This study is the first to utilize the interRAIFamily Carer Needs Assessment in carers of children, seeking to evaluate andimprove its ability to capture their needs. This is a prospective pilot study offamily carers of children with serious illness receiving care at a pediatrichospice. Thirty carers completed the self-assessment form. Additional feedbackwas sought inquiring about the appropriateness of questions and missinginformation relevant to the pediatric setting. All participants reported theassessment captured important information across multiple domains. Additionalquestions surrounding extra costs, home and school supports, as well as directimpacts of caregiving activities on pain and relationships were identified asimportant adaptations. The most common unmet needs in carers and care recipientswere episodic relief from caregiving (n=17) and housing adaptation (n=17),respectively. Overall, a comprehensive assessment form is feasible inidentifying the diverse needs of family carers of children. Future researchshould focus on using pediatric specific interRAI tools to guide improvements inpolicy and practice that can address unmet needs.