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Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers' and professionals' experiences in Swedish hospitals.
- Source :
-
BMJ open [BMJ Open] 2019 Aug 10; Vol. 9 (8), pp. e028720. Date of Electronic Publication: 2019 Aug 10. - Publication Year :
- 2019
-
Abstract
- Objectives: Informal caregivers of patients with chronic obstructive pulmonary disease (COPD) experience a heavy caregiver burden, but few studies have explored what support they need. The aim of this study was to describe perceptions of healthcare support to informal caregivers, both from the family caregiver's and the staff's perspective.<br />Design: A qualitative interview study involving semi-structured interviews and analysed with content analysis.<br />Participants: In total, 54 participated: 36 informal caregivers of patients with severe (stage 3-4) COPD and 17 healthcare staff.<br />Results: Two main themes emerged from the analysis: (1) Ambiguity impedes provision of support. Both caregivers and staff experienced ambiguity. The informal caregivers needed emotional, practical and informational support but talked about unclear expectations, while the staff described an uncertainty about their duties regarding the families. There were no routines to unburden the families. Moreover, language and cultural barriers hampered their efforts. (2) Knowledgeable and perceptive communication is key to support. Both caregivers and staff described positive experiences of dialogue. The dialogue may facilitate means to caregiver support and was a support in itself.<br />Conclusions: Our findings suggest that strategies and routines for caregiver support, including communication skills among the staff, should be developed, to move toward the family perspective advocated in palliative- and nursing family care.<br />Competing Interests: Competing interests: None declared.<br /> (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
- Subjects :
- Adult
Adult Children
Aged
Aged, 80 and over
Allied Health Personnel
Female
Health Services Needs and Demand
Hospitals
Humans
Male
Middle Aged
Needs Assessment
Nurses
Physicians
Qualitative Research
Severity of Illness Index
Spouses
Sweden
Attitude of Health Personnel
Burnout, Psychological
Caregivers
Communication
Professional-Family Relations
Pulmonary Disease, Chronic Obstructive nursing
Subjects
Details
- Language :
- English
- ISSN :
- 2044-6055
- Volume :
- 9
- Issue :
- 8
- Database :
- MEDLINE
- Journal :
- BMJ open
- Publication Type :
- Academic Journal
- Accession number :
- 31401598
- Full Text :
- https://doi.org/10.1136/bmjopen-2018-028720