Carers' experiences of dysphagia in people treated for head and neck cancer: a qualitative study

Nund, Rebecca L., Ward, Elizabeth C., Scarinci, Nerina A., Cartmill, Bena, Kuipers, Pim and Porceddu, Sandro V. (2014) Carers' experiences of dysphagia in people treated for head and neck cancer: a qualitative study. Dysphagia, Online First 4: 1-9. doi:10.1007/s00455-014-9527-8

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Author Nund, Rebecca L.
Ward, Elizabeth C.
Scarinci, Nerina A.
Cartmill, Bena
Kuipers, Pim
Porceddu, Sandro V.
Title Carers' experiences of dysphagia in people treated for head and neck cancer: a qualitative study
Journal name Dysphagia   Check publisher's open access policy
ISSN 0179-051X
Publication date 2014-08-01
Year available 2014
Sub-type Article (original research)
DOI 10.1007/s00455-014-9527-8
Volume Online First
Issue 4
Start page 1
End page 9
Total pages 9
Place of publication New York, NY, United States
Publisher Springer New York
Language eng
Formatted 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.
Keyword Deglutition
Deglutition disorders
Head and neck cancer
Qualitative research
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status UQ
Additional Notes Published online: 21 May 2014

Document type: Journal Article
Sub-type: Article (original research)
Collections: Official 2015 Collection
School of Health and Rehabilitation Sciences Publications
School of Medicine Publications
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Citation counts: TR Web of Science Citation Count  Cited 11 times in Thomson Reuters Web of Science Article | Citations
Scopus Citation Count Cited 12 times in Scopus Article | Citations
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Created: Mon, 26 May 2014, 07:50:53 EST by Dr Nerina Scarinci on behalf of Speech Pathology and Audiology