Capability wellbeing of parents caring for children with rare diseases: a national cross-sectional study.

ABSTRACT:

Background

Rare diseases impose significant burden on families, particularly parents, of affected children, involving intensive caregiving, financial hardship, and social isolation. However, there is a scarcity of research exploring the broader dimensions of parental wellbeing, such as enjoyment and achievement. This study aims to assess the capability wellbeing among parents caring for children with rare diseases and to identify the contributing factors of parental wellbeing.

Methods

A nationwide cross-sectional survey was conducted on 10,207 parents of children diagnosed with 28 different rare diseases in China in 2019-2020. The survey collected disease-related factors of the children and socio-demographic and psychosocial factors of parents. The capability wellbeing of pa

SUBMITTER: Yu J 

PROVIDER: S-EPMC12664264 | biostudies-literature | 2025 Nov

REPOSITORIES: biostudies-literature