The impact of caring for children with deglutition disorders is poorly understood and tools to measure the unique concerns of these caregivers are lacking. The aims of this investigation were to develop and validate The Feeding/Swallowing Impact Survey (FS-IS) as an instrument designed to measure and improve understanding of caregiver issues. Demographic, economic, and dysphagic data were provided by the primary caregivers of 164 children (median age: 14 months, male: 78, female: 86) presenting for initial outpatient feeding/swallowing evaluations. Caregivers completed the PEDS-QLTM Family Impact Module (PEDS-QLTM FIM) and the FS-IS. A principal component analysis was conducted on the FS-IS to identify appropriate subscales. Concurrent validity was assessed by examining correlations between the FS-IS and PEDS-QLTM FIM. Caring for children with feeding/swallowing problems adversely impacted the Health-Related Quality of Life (HRQoL) of their caregivers. The FS-IS had a strong 3-factor solution to indicate 3 subscales: Daily Activities, Worry, and Feeding Difficulties. All three subscales and total score of the FS-IS correlated with PEDSQL TM FIM. The FS-IS was validated as an instrument that may help clinicians detect specific factors that influence caregiver HRQoL, identify caregivers who might benefit from additional support, and ultimately improve the care of their children with feeding/swallowing disorders.
- Caregiver experiences
- Deglutition disorders
- Health-related quality of life
ASJC Scopus subject areas
- Speech and Hearing