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Supportive Care in Cancer

, Volume 20, Issue 6, pp 1175–1181 | Cite as

Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study

  • Anna Ugalde
  • Meinir Krishnasamy
  • Penelope Schofield
Original Article

Abstract

Purpose

Family caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.

Methods

A symbolic interactionist framework guided the in-depth individual interviews and grounded theory methodology was used to analyse the data. A total of 17 interviews were conducted: 13 with active caregivers and 4 with bereaved caregivers.

Results

Three dominant codes are presented. Caregivers lacked role recognition, as they struggled to recognise their role existed, even though they took on extensive and challenging tasks. Caregivers reported substantial loss or changes to their self-identity: with some caregivers reporting not being able to stop thinking about caregiving and others having difficulty answering questions about themselves. Caregivers also demonstrated difficulty in taking a break: active caregivers did not consider taking a break, whereas bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.

Conclusions

Caregiving is complex and extensive. People who care for those with advanced cancer are in need of intervention to provide support and assistance to them in their role. However, this needs to be structured with consideration for how caregivers view their role.

Keywords

Caregiving Advanced cancer Family carers Informal care Interviews 

Notes

Acknowledgements

Anna Ugalde is supported by a National Health and Medical Research Council PhD Scholarship and Associate Professor Penelope Schofield is supported by a National Health and Medical Research Council Career Development Fellowship.

Disclosures

None.

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Copyright information

© Springer-Verlag 2011

Authors and Affiliations

  • Anna Ugalde
    • 1
    • 2
  • Meinir Krishnasamy
    • 1
    • 2
  • Penelope Schofield
    • 1
    • 2
  1. 1.Department of Nursing and Supportive Care ResearchPeter MacCallum Cancer CentreMelbourneAustralia
  2. 2.School of Health SciencesThe University of MelbourneParkvilleAustralia

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