Financial, opportunity and psychosocial costs of spinal muscular atrophy: an exploratory qualitative analysis of Australian carer perspectives.

ABSTRACT: OBJECTIVES:Spinal muscular atrophy (SMA) has profound implications for patients and families. The aim of the present study was to gain insights into the effects caring for a child with SMA has on the costs incurred by families caring for a child with SMA from carer perspectives to identify gaps in provision of care, inform public policy and cost-effectiveness analyses. DESIGN:Interpretive phenomenological analysis guided the delivery and analysis of semi-structured interviews undertaken to explore the financial, opportunity and psychosocial costs associated with caring for children with SMA. PARTICIPANTS AND SETTING:Parents of children with SMA types II and III from a single Australian paediatric neuromuscular clinic participated in this study. RESULTS:A range of experiences were reported

SUBMITTER: Farrar MA 

PROVIDER: S-EPMC5988080 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature