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Distress in long‐term head and neck cancer carers: a qualitative study of carers' perspectives

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Listed:
  • Myles Balfe
  • Rebecca Maguire
  • Paul Hanly
  • Phyllis Butow
  • Eleanor O'Sullivan
  • Aileen Timmons
  • Rachael Gooberman‐Hill
  • Linda Sharp

Abstract

Aims and objectives To identify and describe the triggers of emotional distress among long‐term caregivers (more than 1 year postdiagnosis) of people with head and neck cancer. Background Limited research has been conducted on the factors that cause head and neck cancer caregivers to become distressed. Design Qualitative cross‐sectional. Methods In‐depth semi‐structured interviews. Interviews were conducted via telephone. The study setting was the Republic of Ireland. Results Interviews were conducted with 31 long‐term caregivers (mean time since diagnosis 5·7 years, SD 2·9 years). Head and neck cancer caregivers experienced significant distress. Six key triggers of emotional distress were identified: understandings and fears of illness, lifestyle restrictions and competing demands, facial disfigurement, financial problems, comorbid health problems and witnessing suffering. Cutting across all of these individual causes of distress was a strong feeling of loss caused by head and neck cancer. Conclusions Some head and neck cancer caregivers became considerably distressed by their caring role. Although distress appears to decline with time for many caregivers, some continue to be distressed for years following the patient's diagnosis. It would be useful for future research to explicitly investigate caregivers' experiences of loss. Relevance to clinical practice Health professionals may be able to reduce distress in this group if they can help caregivers to access resources that can be used to buffer financial problems. Health professionals may also be able to reduce distress if they can work with caregivers to help them to obtain something of personal value or significance from their experience of loss and suffering.

Suggested Citation

  • Myles Balfe & Rebecca Maguire & Paul Hanly & Phyllis Butow & Eleanor O'Sullivan & Aileen Timmons & Rachael Gooberman‐Hill & Linda Sharp, 2016. "Distress in long‐term head and neck cancer carers: a qualitative study of carers' perspectives," Journal of Clinical Nursing, John Wiley & Sons, vol. 25(15-16), pages 2317-2327, August.
    • Handle: RePEc:wly:jocnur:v:25:y:2016:i:15-16:p:2317-2327
    DOI: 10.1111/jocn.13242
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    References listed on IDEAS

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    1. Aileen Timmons & Rachael Gooberman-Hill & Linda Sharp, 2013. ""It's at a Time in Your Life When You Are Most Vulnerable": A Qualitative Exploration of the Financial Impact of a Cancer Diagnosis and Implications for Financial Protection in Health," PLOS ONE, Public Library of Science, vol. 8(11), pages 1-1, November.
    2. Alison Pearce & Paul Hanly & Aileen Timmons & Paul Walsh & Ciaran O’Neill & Eleanor O’Sullivan & Rachael Gooberman-Hill & Audrey Thomas & Pamela Gallagher & Linda Sharp, 2015. "Productivity Losses Associated with Head and Neck Cancer Using the Human Capital and Friction Cost Approaches," Applied Health Economics and Health Policy, Springer, vol. 13(4), pages 359-367, August.
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