Caregivers' nutrition‐related knowledge, perceptions, practices and barriers regarding the therapeutic diet for classical galactosaemia

Abstract

AbstractBackgroundClassical galactosaemia is a life‐threatening disorder of carbohydrate metabolism, and the primary treatment is a lifelong galactose‐restricted diet commenced in infancy. Adherence to restrictive diets can be burdensome for patients and their families; however, little is known about the impact on caregivers.AimThis study aims to determine the nutrition‐related knowledge, perceptions, practices, and barriers of caregivers related to the therapeutic diet for classical galactosaemia.MethodsAn online survey was conducted among 98 eligible members of the Galactosaemia Support Group using a novel questionnaire. Descriptive and inferential analyses were performed using Microsoft Excel 2021 and Stata/MP (version 17.0), respectively. Forty‐three caregivers participated in the study.Results and ConclusionOf those who participated, 98% had high levels of dietary knowledge. Caregivers' knowledge scores ( = 17.9, standard deviation [SD] = 1.7) were positively correlated with educational level (r = 0.383, p = 0.013). High attitudinal scores ( = 32.5, SD = 5.5) obtained by most caregivers (65%) revealed an overall positive attitude towards the galactosaemia diet. Negative perceptions of being unable to feed their child breast milk (49%) were apparent, and this perception was positively correlated with caregivers' intention to feed their child breast milk (r = 0.450, p = 0.003). Caregivers' concerns about the safety of their child in social settings (79%) and feeling that their child was excluded in social settings (49%) were clear barriers. A multidisciplinary approach to galactosaemia management is warranted, with healthcare interventions focusing on addressing caregivers' negative perceptions and barriers related to the diet to enable tailored support and facilitate lifelong compliance.