Sudden informal caregivers: the lived experience of informal caregivers after an unexpected event

Authors

  • Helder Rocha Pereira,

    1. Authors:Helder Rocha Pereira, MEd, PhD Candidate, RN, Assistant Professor, Ponta Delgada Nursing School, University of the Azores, Azores; Maria Antónia Rebelo Botelho, MNSc, PhD, RN, Professor, Lisbon Nursing School and Coordinator of the Nursing Doctoral Program, University of Lisbon, Lisbon, Portugal
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  • Maria Antónia Rebelo Botelho

    1. Authors:Helder Rocha Pereira, MEd, PhD Candidate, RN, Assistant Professor, Ponta Delgada Nursing School, University of the Azores, Azores; Maria Antónia Rebelo Botelho, MNSc, PhD, RN, Professor, Lisbon Nursing School and Coordinator of the Nursing Doctoral Program, University of Lisbon, Lisbon, Portugal
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Helder Rocha Pereira, Assistant Professor, Ponta Delgada Nursing School, University of the Azores, Rua de São Gonçalo, 9504-538 Ponta Delgada, Azores, Portugal. Telephone: +351 296 302 280.
E-mail:hpereira@uac.pt

Abstract

Aim.  The purpose of this qualitative study was to understand the lived experience of individuals taking on the role of informal adult caregivers after an unexpected event involving a relative.

Background.  The literature on the development of the role of informal caregivers widely recognises that protecting and promoting the quality of life of caregivers should be a priority for health professionals. However, knowledge about how individuals develop as sudden caregivers is scarce, with existing knowledge centring mainly on the physical aspects of caregiving. What it means to become a caregiver or to experience role redefinition remains largely unclear.

Design.  Hermeneutic phenomenology provided the framework that guided this study.

Methods.  Unstructured interviews were used for collecting data. We used Van Manen’s approach to analyse data and to reveal themes. Reflexivity and collaborative analysis were used to address rigour.

Results.  From caregivers’ interviews (n = 14), four main themes were identified: losing control over time, feeling alone, failing expectations and taking over someone else’s life.

Conclusions.  The caregiving experience is characterised as a transition process or a period of ongoing focussing and de-focussing. The extent to which caregivers feel connected with others, redefine their personal use of time and feel comfortable with their new responsibilities indicates how they are managing this transition and how well they are achieving balance in their new role, i.e. from feeling ‘exclusively’ a caregiver to being ‘also’ a caregiver.

Relevance to clinical practice.  Facilitating successful transitions is within the scope of the role of professional nurses. Information about the meaning that caregivers attribute to their experience – relationships, options and strategies – is crucial, as it will help nurses to plan, assess and design adequate nursing interventions to support informal caregivers, especially in unexpected situations.

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