The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury.
Journal
Spinal cord
ISSN: 1476-5624
Titre abrégé: Spinal Cord
Pays: England
ID NLM: 9609749
Informations de publication
Date de publication:
May 2021
May 2021
Historique:
received:
06
07
2020
accepted:
24
02
2021
revised:
23
02
2021
pubmed:
21
3
2021
medline:
16
10
2021
entrez:
20
3
2021
Statut:
ppublish
Résumé
Qualitative exploratory study. To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Caregivers of people with SCI living in the community in Switzerland. Data were collected through semi-structured interviews. Thematic analysis was performed. The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.
Identifiants
pubmed: 33742117
doi: 10.1038/s41393-021-00618-4
pii: 10.1038/s41393-021-00618-4
pmc: PMC8110474
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
493-503Subventions
Organisme : Schweizerischer Nationalfonds zur Förderung der Wissenschaftlichen Forschung (Swiss National Science Foundation)
ID : 160158
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