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Carers’ Experiences of Dysphagia in People Treated for Head and Neck Cancer: A Qualitative Study

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Abstract

The implication of dysphagia for people treated nonsurgically for head and neck cancer (HNC) and its detrimental effects on functioning and quality of life has been well documented. To date, however, there has been a paucity of research on the effects of dysphagia following HNC on carers, independent of the consequences of a gastrostomy. The objective of this qualitative study was to report on the experiences of carers of people with dysphagia (non-gastrostomy dependent) following nonsurgical treatment for HNC and to identify the support needs of this group. A purposive, maximum-variation sampling technique was adopted to recruit 12 carers of people treated curatively for HNC since 2007. Each participated in an in-depth interview, detailing their experience of caring for someone with dysphagia and the associated impact on their life. Thematic analysis was adopted to search the transcripts for key phases and themes that emerged from the discussions. Analysis of the transcripts revealed four themes: (1) dysphagia disrupts daily life, (2) carers make adjustments to adapt to their partner’s dysphagia, (3) the disconnect between carers’ expectations and the reality of dysphagia, and (4) experiences of dysphagia-related services and informal supports. Carers generally felt ill-prepared for their role in dysphagia management. The qualitative methodology successfully described the impact of dysphagia on the everyday lives of carers, particularly in regard to meal preparation, social events, and family lifestyle. Clinicians should provide adequate and timely training and support to carers and view carers as copartners in dysphagia management.

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Conflict of interest

The authors have no conflict of interest to disclose.

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Authors and Affiliations

  1. Division of Speech Pathology, School of Health and Rehabilitation Sciences, The University of Queensland, St Lucia, Brisbane, QLD, 4072, Australia

    Rebecca L. Nund & Nerina A. Scarinci

  2. Centre for Functioning and Health Research, Metro South Health Services District, Queensland Health, Level 3, Centro Buranda, Ipswich Rd., Buranda, Brisbane, QLD, 4102, Australia

    Rebecca L. Nund, Elizabeth C. Ward, Bena Cartmill & Pim Kuipers

  3. School of Health and Rehabilitation Sciences, The University of Queensland, St Lucia, Brisbane, QLD, 4072, Australia

    Elizabeth C. Ward

  4. Speech Pathology Department, Princess Alexandra Hospital, Ipswich Rd., Woolloongabba, Brisbane, QLD, 4102, Australia

    Bena Cartmill

  5. Population and Social Health Research Program, Griffith Health Institute, Griffith University, Logan, QLD, 4131, Australia

    Pim Kuipers

  6. School of Medicine, The University of Queensland, Herston, Brisbane, QLD, 4006, Australia

    Sandro V. Porceddu

  7. Radiation Oncology Department, Princess Alexandra Hospital, Ipswich Rd., Woolloongabba, Brisbane, QLD, 4102, Australia

    Sandro V. Porceddu

Authors
  1. Rebecca L. Nund
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  2. Elizabeth C. Ward
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  3. Nerina A. Scarinci
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  4. Bena Cartmill
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  5. Pim Kuipers
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  6. Sandro V. Porceddu
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Correspondence to Rebecca L. Nund.

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Nund, R.L., Ward, E.C., Scarinci, N.A. et al. Carers’ Experiences of Dysphagia in People Treated for Head and Neck Cancer: A Qualitative Study. Dysphagia 29, 450–458 (2014). https://doi.org/10.1007/s00455-014-9527-8

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  • DOI: https://doi.org/10.1007/s00455-014-9527-8

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