Integrative Literature Review on the Lived Experiences of Parents of Children with a Rare Disease
Assunta Guillari, Keti Ballfusha, Chiara Palazzo, Maurizio Di Martino, Vincenza Giordano · 2026
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Description
Assunta Guillari and colleagues synthesize in a 2026 integrative review what research says about the lived experience of parents raising a child with a rare disease. Parents carry most of the care, yet studies of their experience are scattered across many fields and journals.
Following established review methods, the authors gathered 22 studies of mixed designs and grouped the findings into three themes. The diagnostic journey brought prolonged uncertainty and fragmented care. Caregiving burden spread across emotional, social, economic, and physical domains, with differences between mothers and fathers. Parents also adapted over time, building skills and finding meaning. The review urges family-centered care and sustained psychosocial support.
Catalog record
| CREATOR | Assunta Guillari, Keti Ballfusha, Chiara Palazzo, Maurizio Di Martino, Vincenza Giordano |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 90 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |