Dysphagia

, Volume 29, Issue 4, pp 450–458

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

  • Rebecca L. Nund
  • Elizabeth C. Ward
  • Nerina A. Scarinci
  • Bena Cartmill
  • Pim Kuipers
  • Sandro V. Porceddu
Original Article

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.

Keywords

Deglutition Deglutition disorders Head and neck cancer Carers Qualitative research 

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Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Rebecca L. Nund
    • 1
    • 2
  • Elizabeth C. Ward
    • 2
    • 3
  • Nerina A. Scarinci
    • 1
  • Bena Cartmill
    • 2
    • 4
  • Pim Kuipers
    • 2
    • 5
  • Sandro V. Porceddu
    • 6
    • 7
  1. 1.Division of Speech Pathology, School of Health and Rehabilitation SciencesThe University of QueenslandBrisbaneAustralia
  2. 2.Centre for Functioning and Health Research, Metro South Health Services DistrictQueensland HealthBuranda, BrisbaneAustralia
  3. 3.School of Health and Rehabilitation SciencesThe University of QueenslandBrisbaneAustralia
  4. 4.Speech Pathology DepartmentPrincess Alexandra HospitalWoolloongabba, BrisbaneAustralia
  5. 5.Population and Social Health Research Program, Griffith Health InstituteGriffith UniversityLoganAustralia
  6. 6.School of MedicineThe University of QueenslandHerston, BrisbaneAustralia
  7. 7.Radiation Oncology DepartmentPrincess Alexandra HospitalWoolloongabba, BrisbaneAustralia

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