The impact of dysphagia on carers of people with head and neck cancer: development and preliminary validation of the significant other scale for eating in head and neck cancer (SOSE-H&N)

PURPOSE: This study aimed to develop a tool to measure the impact of dysphagia on carers of people with head and neck cancer (HNC) and conduct preliminary psychometric testing. MATERIALS AND METHODS: The Significant Other Scale for Eating in Head and Neck Cancer (SOSE-H&N) was developed using a mixed-methods, exploratory-sequential approach. Initial item development was based on thematic analysis of qualitative interviews with 24 carers. The SOSE-H&N was then presented to a sample of five carers and 11 clinicians for preliminary validity testing and item reduction. Psychometric analysis was conducted based on the responses of 63 carers, to evaluate the reliability and validity of the tool. RESULT: Four themes, 16 categories, and 34 sub-categories described the impact of dysphagia on carers. These themes, categories, and sub-categories were operationalised into a 55-item instrument that was subsequently reduced to 26 items. Preliminary psychometric testing demonstrated face validity and good internal consistency. Principal component analysis confirmed the construct validity, identified four potential sub-scales, and identified two items for removal. CONCLUSION: The SOSE-H&N is a self-administered instrument with preliminary evidence of validity and reliability. The SOSE-H&N could potentially serve as a means of identifying carers of people with dysphagia who require additional support, though further testing is needed.