SOS for Dysphagia Questionnaire
Research type
Research Study
Full title
The development and validation of the Significant Other Scale for Dysphagia in Head and Neck Cancer (SOS-DYSPHAIGA H&N)
IRAS ID
235210
Contact name
Joanne Patterson
Contact email
Sponsor organisation
City Hospitals Sunderland
Duration of Study in the UK
0 years, 6 months, 31 days
Research summary
Research has previously documented distress and reduced quality of life in carers of people with swallowing difficulties both before and following treatment for head and neck cancer (HNC). Recent qualitative studies have noted that carers of people with HNC consistently report negative effects on their everyday lives as a result of swallowing difficulties particularly in relation to: managing modified diets/fluids, and providing appropriate meals; negative influences on family dynamics and social activities; and emotional impacts of loss of function. In order to cope with and adjust to their partner’s swallowing difficulties, carers described a number of strategies they had adopted. These adjustments were made (largely) without the support of health professionals. Carers’ psychological health and coping abilities should be an important consideration for health professionals, given that direct associations have been found between carers’ psychological health and patient outcomes.
There are currently no instruments available to identify and measure the impact of swallowing difficulties following HNC on the carer. The development of an instrument will help to identify those requiring more targeted support and assist in the evaluation of new interventions for this population. Therefore the aim of the current study is to further develop and validate a questionnaire to measure third-party disability experienced by carers of people with swallowing difficulties following HNC. Carers will be recruited from Brisbane and Sunderland for a one-off assessment taking no longer than 45 minutes. They will be asked to complete a prototype carer swallowing questionnaire and two other health and quality of life questionnaires.REC name
South West - Frenchay Research Ethics Committee
REC reference
19/SW/0026
Date of REC Opinion
12 Mar 2019
REC opinion
Further Information Favourable Opinion