Caregiving experiences of caregivers of children with rare diseases: A qualitative meta-synthesis

Abstract

Problem: Most rare diseases occur in childhood and are difficult to diagnose and treat. The caregivers are faced with the challenge of providing care to the children afflicted with these rare diseases, resulting in a significant burden of care and an altered family dynamic.

Eligibility criteria: A meta-synthesis review was conducted to explore the caregivers' experience of children with rare diseases using eight electronic databases PubMed, Web of Science, the Cochrane Library, EMBASE, VIP database, Wan Fang, Chinese BioMedical Literature Database, and China National Knowledge Infrastructure from each database's inception to October 5, 2023.

Sample: 4207 records were identified and 20 eligible studies were included.

Results: Three themes emerged: (1) Life is changed by "rare"; (2) many unmet needs; (3) Strive to adapt and grow.

Conclusions: Caregivers of children with rare diseases are full of stress and challenges in the process of caring for them, and their lives have changed greatly due to "rare". Appropriate measures need to be taken to reduce the burden on caregivers.

Implications: According to the findings, both the medical and health systems, as well as society, should pay attention to the care load and unmet requirements of carers of children with rare diseases, and offer them with practical supportive services. Finally, it can improve the quality of life for caregivers and families of children with rare diseases, as well as stimulate the development of rare diseases.

Keywords: Caregiver; Children; Experience; Qualitative meta-synthesis; Rare diseases.