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Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer

Rebecca L Nund, Nerina A Scarinci, Bena Cartmill, Elizabeth C Ward, Pim Kuipers, Sandro V Porceddu
Disability and Rehabilitation 2016, 38 (5): 462-71

PURPOSE: Third-party disability pertains to the consequences of a person's impairment which impacts on the functioning and ability of their family members or significant others. With the emergence of research demonstrating the pervasive effects of dysphagia following head and neck cancer (HNC) on the carer, the aim of this study was to identify the International Classification of Functioning, Disability and Health (ICF) domains and categories that describe the third-party disability of carers of people with dysphagia following HNC.

METHOD: Twelve carers of people with dysphagia following HNC participated in individual semi-structured, in-depth interviews. Categories and sub-categories identified from the qualitative analysis were mapped to the ICF using the established linking rules.

RESULTS: The majority of the categories and sub-categories from the qualitative analysis were successfully linked to the ICF with most linking to the Activities and Participation component. A number of contextual factors were also identified as impacting on the functioning of carers.

CONCLUSIONS: The ICF can be successfully used to describe the third-party disability in carers of people with dysphagia following HNC management. This information could be used by clinicians, researchers and policy makers to help establish evidence-based guidelines that include carers in the assessment and management of dysphagia associated with HNC.

IMPLICATIONS FOR REHABILITATION: Clinical levels of distress and reduced quality of life have been associated with caring for a person with dysphagia following head and neck cancer. The flow-on effects of dysphagia experienced by a carer or close family member can be understood as a third-party disability, which impacts on their functioning, activities and participation in the context of the environment and personal factors. Using the ICF to describe the indirect effects of dysphagia on the carer may help to guide the assessment and support of this population, and advocate for the inclusion of the concerns of the carer in dysphagia management.


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