The complex nature of informal care in home-based heart failure management

Alexander M. Clark, Margaret E. Reid, Caroline E. Morrison, Simon Capewell, David L. Murdoch, John J. McMurray

Research output: Contribution to journalJournal Articlepeer-review

81 Citations (Scopus)

Abstract

Title. The complex nature of informal care in home-based heart failure management. Aim. This paper is a report of a study to examine the complexities of informal caregiving for people with chronic heart failure. Background. Little is known of the activities involved and underlying informal care. Heart failure is a common and burdensome condition in which carers play an important management role. Method. Semi-structured interviews were carried out with 30 informal carers nominated by patients with mild-to-moderate heart failure (24 spouses, four children, one sibling and one neighbour). Interviews examined knowledge of heart failure, its effects, reported management practices and concerns, decision making and support. The data were collected in 2001. Findings. The management of heart failure was a shared and ongoing responsibility between the carer and patient. Carers' clinical knowledge of the condition and management was often limited, but they developed extensive knowledge of its personal effects on the patient. Invisible care activities included monitoring signs of symptom exacerbation and energy boundaries against perceived current and future demands and priorities. Visible care activities included medication management, dressing, bathing and help-seeking. Carers responded to patients' capacities, and adopted philosophies that sought to foster independence while facilitating as normal a life for the patient as was possible and safe. Conclusion. Interventions for informal carers around effective chronic heart failure management should address both visible and invisible informal caring. Future research is needed to develop interventions with carers to improve quality of care, reduce costs and improve patient quality of life. More research is needed to explore the complexities of lay caregiving and to explore the invisible dimensions of informal care further.

Original languageEnglish
Pages (from-to)373-383
Number of pages11
JournalJournal of Advanced Nursing
Volume61
Issue number4
DOIs
Publication statusPublished - Feb. 2008

Keywords

  • Chronic heart failure
  • Empirical research report
  • Home care
  • Informal care
  • Interviews
  • Nursing

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