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Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD

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  • Dorthe Gaby Bove
  • Ann‐Britt Zakrisson
  • Julie Midtgaard
  • Kirsten Lomborg
  • Dorthe Overgaard

Abstract

Aims and objectives To explore how spouses of patients with severe chronic obstructive pulmonary disease experience their role as informal caregiver. Background Informal caregiver spouses are of pivotal importance in the way that patients with chronic obstructive pulmonary disease cope with their daily life, including their opportunity to stay at home and avoid hospitalisations in the last stages of the disease. However, caregiving is associated with increased morbidity and mortality among caregivers. Further understanding of the role as an informal caregiver spouse of patients with severe chronic obstructive pulmonary disease is needed to develop supportive interventions aimed at reducing the caregiver burden. Design The study had a qualitative exploratory design. The data collection and analysis were based on framework method. Framework method is a thematic methodology and consists of five key stages: familiarisation, identifying a thematic framework, indexing, charting and mapping & interpretation. Methods Three focus groups were conducted in November 2013 with 22 spouses of patients with severe chronic obstructive pulmonary disease. Results Undefined and unpredictable responsibility was found to be the overarching theme describing the informal caregiver role. Underlying themes were: being constantly in a state of alertness, social life modified, maintaining normality, ambivalence in the relationship and a willingness to be involved. Conclusions The informal caregiver spouses experienced ambiguity about expectations from their private and the health professionals’ surroundings. The informal caregiver spouses wanted to provide meaningful care for their partners, but sought knowledge and support from the health professionals. Relevance to clinical practice We recommend that nurses take on the responsibility for including the informal caregiver spouses in those aspects of decision‐making that involve the common life of the patients and their spouses.

Suggested Citation

  • Dorthe Gaby Bove & Ann‐Britt Zakrisson & Julie Midtgaard & Kirsten Lomborg & Dorthe Overgaard, 2016. "Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD," Journal of Clinical Nursing, John Wiley & Sons, vol. 25(3-4), pages 483-493, February.
    • Handle: RePEc:wly:jocnur:v:25:y:2016:i:3-4:p:483-493
    DOI: 10.1111/jocn.13076
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    References listed on IDEAS

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    1. Daniela Figueiredo & Raquel Gabriel & Cristina Jácome & Alda Marques, 2014. "Caring for people with early and advanced chronic obstructive pulmonary disease: how do family carers cope?," Journal of Clinical Nursing, John Wiley & Sons, vol. 23(1-2), pages 211-220, January.
    2. Marie-Anne Durand & Lewis Carpenter & Hayley Dolan & Paulina Bravo & Mala Mann & Frances Bunn & Glyn Elwyn, 2014. "Do Interventions Designed to Support Shared Decision-Making Reduce Health Inequalities? A Systematic Review and Meta-Analysis," PLOS ONE, Public Library of Science, vol. 9(4), pages 1-13, April.
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    1. Ingrid Charlotte Andersen & Thora Grothe Thomsen & Poul Bruun & Uffe Bødtger & Lise Hounsgaard, 2017. "Patients' and their family members' experiences of participation in care following an acute exacerbation in chronic obstructive pulmonary disease: A phenomenological‐hermeneutic study," Journal of Clinical Nursing, John Wiley & Sons, vol. 26(23-24), pages 4877-4889, December.
    2. Jose Manuel Tinoco-Camarena & Montserrat Puig-Llobet & María Teresa Lluch-Canut & Juan Roldan-Merino & Mari Carmen Moreno-Arroyo & Antonio Moreno-Poyato & Judith Balaguer-Sancho & Zaida Agüera & Maria, 2022. "Effectiveness of the Online “Dialogue Circles” Nursing Intervention to Increase Positive Mental Health and Reduce the Burden of Caregivers of Patients with Complex Chronic Conditions. Randomized Clini," IJERPH, MDPI, vol. 20(1), pages 1-13, December.
    3. Flaminia Reale & Federica Segato & Daniela Tartaglini & Cristina Masella, 2020. "Action Research as a Method to Find Solutions for the Burden of Caregiving at Hospital Discharge," Systemic Practice and Action Research, Springer, vol. 33(2), pages 167-185, April.

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