The feeding and swallowing impact survey (FS-IS):  cross-cultural adaptation for the South African context

Bestenbier, Candice

The feeding and swallowing impact survey (FS-IS): cross-cultural adaptation for the South African context

Master Thesis

2021

Abstract

Background: Feeding and swallowing difficulties (FSD) are found in typically developing children and children with complex medical and developmental conditions. These difficulties may have negative health consequences which can be stressful for caregivers as they are required to provide care for their children in the home environment. The Feeding and Swallowing Impact Survey (FS-IS) is a subjective rating scale used to determine the health-related quality of life (HRQoL) of caregivers of children diagnosed with FSD. However, this scale is not yet available in any of the official South African languages (except for English), and has not yet been culturally or linguistically adapted for the South African context. Research aims: The study aimed to cross culturally adapt and validate the FS-IS for the South African context by 1) describing the content validity of the FS-IS in a South African context; 2) describing the cultural and linguistic appropriateness of the English, isiXhosa and Afrikaans versions of the FS-IS; and 3) describing the experiences caregivers of children have in caring for their child with FSD using the FS-IS, in a pilot study. Methodology: A descriptive exploratory design was used to cross-culturally adapt and pilot the FS-IS, which consists of 3 subsections related to daily activities, worrying and problems with feeding. Five expert speech-language therapist (SLT) participants were identified to review the FS-IS for content validity. The FS-IS was then translated into Afrikaans and isiXhosa using the forward and back translation process. Caregivers (n=15) were identified at feeding clinics to determine the cultural and linguistic appropriateness of the FS-IS in English (n=5), Afrikaans (n=5) and isiXhosa (n=5). Their recommendations were taken into consideration and changes made. The pilot study included caregivers of children with FSD attending feeding clinics at two institutions (n=32) who completed the FS-IS. The participants in the pilot study included parents as primary caregivers (n=28; 88%), grandparents (n=2; 6%), as well as foster parents (n=2; 6%). Thirty-one participants were female with 14 English speaking, 9 isiXhosa and 9 Afrikaans speaking. The caregivers were the primary caregivers of children with a variety of FSD including non-oral feeds, oral feeds with specific modifications and picky or selective eaters. Results: The FS-IS was found to have content validity as experts and caregiver participants judged it to be contextually relevant for the South African context. Caregivers considered the items on the FSIS important, clear and appropriate for speakers of their native language as well as for fellow South African families, with minor changes suggested for the isiXhosa translated version. The tool has high internal consistency (Cronbach's alpha = 0.827) as well as excellent intra and inter-rater reliability (100% agreement). Daily activities that caregiver participants found most difficult included getting help from others (50%, n=16) and leaving their child in the care of others as they are scared to have others feed or take care of their child (62.5%, n=19). The majority of caregiver participants reported concerns related to their child's general health (84%, n=27) and whether they were doing enough to help with their child's FSD (50%, n=16). Few caregivers reported difficulties with feeding, with 87.5% (n=28) reporting no difficulties as a result of the time taken to prepare meals and 72% (n=23) reported no difficulty due to professionals or family having differing opinions about how to feed their child with FSD. Conclusion: The results confirm that the FS-IS is a reliable and valid tool for the identification of caregivers with reduced HRQoL related to caring for their child with FSD in a South African context. The adapted and translated FS-IS can therefore be used to identify caregivers who may need additional support or referral for further management from the multidisciplinary team. The results highlighted the complexity of caring for a child with FSD and the effects of the burden of care on caregivers. Early identification of the HRQoL of caregivers will not only benefit the caregivers but also the child they are caring for as the HRQoL of caregivers impacts on the QoL of the child with FSD.