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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
  1. Susann Strang1,2,
  2. Josefin Fährn1,2,
  3. Peter Strang3,
  4. Agneta Ronstad1,
  5. Louise Danielsson1,4
  1. 1 Research and development department, Angered Hospital, Angered, Sweden
  2. 2 Sahlgrenska Academy, University of Gothenburg Institute of Health and Care Sciences, Goteborg, Sweden
  3. 3 Stockholms Sjukhems FoUU, Karolinska Institutet, Stockholm, Sweden
  4. 4 Health and Rehabilitation, University of Gothenburg Institute of Neuroscience and Physiology, Goteborg, Sweden
  1. Correspondence to Dr Susann Strang; susann.strang{at}gu.se

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.

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.

  • quality in healthcare
  • palliative care
  • primary care
  • qualitative research

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors The project was designed and developed by SS and PS. Data were collected by JF, SS and AR. SS, JF, LD and PS performed data analysis. SS, PS and LD contributed to the drafting and revising of the manuscript. All authors approved the final version of the manuscript for publication.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval Ethical approval was obtained from the Regional Ethics Committee in Gothenburg, Sweden (Dnr: 645–16).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon reasonable request.

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