Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitals
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...
Saved in:
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMJ Publishing Group
2019-08-01
|
| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/9/8/e028720.full |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1846157465722290176 |
|---|---|
| author | Susann Strang Josefin Fährn Peter Strang Agneta Ronstad Louise Danielsson |
| author_facet | Susann Strang Josefin Fährn Peter Strang Agneta Ronstad Louise Danielsson |
| author_sort | Susann Strang |
| collection | DOAJ |
| description | 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.Design A qualitative interview study involving semi-structured interviews and analysed with content analysis.Participants In total, 54 participated: 36 informal caregivers of patients with severe (stage 3–4) COPD and 17 healthcare staff.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.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. |
| format | Article |
| id | doaj-art-a4ee7e21334c4cde91a593716ea44179 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2019-08-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-a4ee7e21334c4cde91a593716ea441792024-11-25T10:45:09ZengBMJ Publishing GroupBMJ Open2044-60552019-08-019810.1136/bmjopen-2018-028720Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitalsSusann Strang0Josefin Fährn1Peter Strang2Agneta Ronstad3Louise Danielsson41 Research and development department, Angered Hospital, Angered, Sweden1 Research and development department, Angered Hospital, Angered, Sweden3 Stockholms Sjukhems FoUU, Karolinska Institutet, Stockholm, Sweden1 Research and development department, Angered Hospital, Angered, Sweden1 Research and development department, Angered Hospital, Angered, SwedenObjectives 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.Design A qualitative interview study involving semi-structured interviews and analysed with content analysis.Participants In total, 54 participated: 36 informal caregivers of patients with severe (stage 3–4) COPD and 17 healthcare staff.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.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.https://bmjopen.bmj.com/content/9/8/e028720.full |
| spellingShingle | Susann Strang Josefin Fährn Peter Strang Agneta Ronstad Louise Danielsson Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitals BMJ Open |
| title | Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitals |
| title_full | Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitals |
| title_fullStr | Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitals |
| title_full_unstemmed | Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitals |
| title_short | Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitals |
| title_sort | support to informal caregivers of patients with severe chronic obstructive pulmonary disease a qualitative study of caregivers and professionals experiences in swedish hospitals |
| url | https://bmjopen.bmj.com/content/9/8/e028720.full |
| work_keys_str_mv | AT susannstrang supporttoinformalcaregiversofpatientswithseverechronicobstructivepulmonarydiseaseaqualitativestudyofcaregiversandprofessionalsexperiencesinswedishhospitals AT josefinfahrn supporttoinformalcaregiversofpatientswithseverechronicobstructivepulmonarydiseaseaqualitativestudyofcaregiversandprofessionalsexperiencesinswedishhospitals AT peterstrang supporttoinformalcaregiversofpatientswithseverechronicobstructivepulmonarydiseaseaqualitativestudyofcaregiversandprofessionalsexperiencesinswedishhospitals AT agnetaronstad supporttoinformalcaregiversofpatientswithseverechronicobstructivepulmonarydiseaseaqualitativestudyofcaregiversandprofessionalsexperiencesinswedishhospitals AT louisedanielsson supporttoinformalcaregiversofpatientswithseverechronicobstructivepulmonarydiseaseaqualitativestudyofcaregiversandprofessionalsexperiencesinswedishhospitals |