Experiences and the psychosocial situation of parental caregivers of children with spinal muscular atrophy against the background of new treatment options: a qualitative interview study
Although new treatment options for SMA showed observable effects for most parents, the main caregiver burden and reported symptoms were attributable to the overburdening care tasks. To unburden families, more screening for unmet needs, family-centered help services, professional caregivers, childcare, and sufficient financial support are needed.
Authors
- Corinna Bergelt (ORCID: https://orcid.org/0000-0003-1413-1872)
- Maja Brandt (ORCID: https://orcid.org/0000-0003-0981-7933)
- Jonas Denecke (ORCID: https://orcid.org/0000-0002-8228-4013)
- Jessika Johannsen (ORCID: https://orcid.org/0000-0002-2095-3891)
- Laura Inhestern (ORCID: https://orcid.org/0000-0003-2513-7954)
- Joenna Driemeyer
Institutions
- Universität Hamburg (DE)
- Universitätsmedizin Greifswald (DE)
- University Medical Center Hamburg-Eppendorf (DE)
Publication Details
- Journal
- BMC Psychology
- Published
- 2024-10-17
- DOI
- https://doi.org/10.1186/s40359-024-02070-4
- Citations
- 4
- Primary Topic
- Neurogenetic and Muscular Disorders Research
- Type
- article
- Field-Weighted Citation Impact
- 1.75