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- Title
Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric patients with rare diseases.
- Authors
Smits, Rosanne M.; Vissers, Eline; te Pas, Rosan; Roebbers, Noor; Feitz, Wout F. J.; van Rooij, Iris A. L. M.; de Blaauw, Ivo; Verhaak, Chris M.
- Abstract
<bold>Background: </bold>Challenges faced by children diagnosed with a rare disease or complex condition and their family members are often characterized by disease-specific complexities, such as a prolonged diagnostic process, an uncertain prognosis, and the absence of curative treatment. The psychological burden of living with a rare disease or complex condition is often understudied and may present overarching concepts that shape the general experience of having been diagnosed with a rare condition. The present study examines common needs from a comprehensive perspective combining relevant aspects from the rare disease literature in a theoretical perspective from pediatric psychology, such as a family-centred, developmental and interdisciplinary approach. An exploratory study was designed among parents from children with a rare disease or complex condition in an Integrated University Children's Hospital in the Netherlands. Semi-structured interviews were conducted with open-ended questions based around the experience of having a child diagnosed with a rare condition, such as the psychosocial impact on the child and it's development, the impact on the family, and how provided care was experienced.<bold>Results: </bold>Twelve interviews were analysed with a thematic content analysis to identify common needs. Eight themes followed from the analysis and uncovered the need for (1) family-focused care, (2) coping with uncertainty, (3) empathic communication, (4) practical support, (5) information, (6) psychological support, (7) interdisciplinary care, and (8) social support.<bold>Conclusions: </bold>The results from our study provide directions for research and health care to support young patients with a rare disease or complex condition and their families. Moreover, our results demonstrated that there are overarching concepts across different rare diseases that may be optimally supported with interdisciplinary care.
- Subjects
SOCIAL support; PSYCHOLOGY of parents; QUALITATIVE research; SYMPTOMS; RESEARCH funding; PSYCHOLOGICAL adaptation
- Publication
Orphanet Journal of Rare Diseases, 2022, Vol 17, Issue 1, p1
- ISSN
1750-1172
- Publication type
journal article
- DOI
10.1186/s13023-022-02305-w