Impact of Children's Feeding/Swallowing Problems: Validation of a New Caregiver Instrument

被引：80

作者：

Lefton-Greif, Maureen A. ^{[1
,2
,3
]}

Okelo, Sande O. ^{[4
]}

Wright, Jennifer M. ^{[1
]}

Collaco, Joseph M. ^{[1
]}

McGrath-Morrow, Sharon A. ^{[1
]}

Eakin, Michelle N. ^{[5
]}

机构：

[1] Johns Hopkins Univ, Sch Med, Dept Pediat, Baltimore, MD 21287 USA

[2] Johns Hopkins Univ, Sch Med, Dept Otolaryngol Head & Neck Surg, Baltimore, MD 21287 USA

[3] Johns Hopkins Univ, Sch Med, Dept Phys Med & Rehabil, Baltimore, MD 21287 USA

[4] Univ Calif Los Angeles, David Geffen Sch Med, Mattel Childrens Hosp UCLA, Dept Pediat, Los Angeles, CA 90095 USA

[5] Johns Hopkins Adherence Res Ctr, Div Pulm & Crit Care Med, Baltimore, MD 21224 USA

来源：

DYSPHAGIA | 2014年 / 29卷 / 06期

基金：

美国国家卫生研究院;

关键词：

Deglutition; Deglutition disorders; Dysphagia; Child; Pediatric; Health-related quality of life; Caregiver experiences; QUALITY-OF-LIFE; HEALTH-RELATED QUALITY; PEDIATRIC FEEDING DISORDERS; CEREBRAL-PALSY; DYSPHAGIA; CARE; SURVIVORS; INFANTS; RISK;

D O I：

10.1007/s00455-014-9560-7

中图分类号：

R76 [耳鼻咽喉科学];

学科分类号：

100213 ;

摘要：

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-QL (TM) Family Impact Module (PEDS-QL (TM) 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-QL (TM) 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 PEDS-QL (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.

引用

页码：671 / 677

页数：7

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