Caregivers' nutrition‐related knowledge, perceptions, practices and barriers regarding the therapeutic diet for classical galactosaemia
Background Classical 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 i...
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| Published in: | Journal of human nutrition and dietetics Vol. 36; no. 4; pp. 1179 - 1192 |
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| Main Authors: | , , |
| Format: | Journal Article |
| Language: | English |
| Published: |
England
Blackwell Publishing Ltd
01-08-2023
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| Subjects: | |
| Online Access: | Get full text |
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| Summary: | Background
Classical 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.
Aim
This study aims to determine the nutrition‐related knowledge, perceptions, practices, and barriers of caregivers related to the therapeutic diet for classical galactosaemia.
Methods
An 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 Conclusion
Of those who participated, 98% had high levels of dietary knowledge. Caregivers' knowledge scores (x¯ $\bar{{\rm{x}}}$ = 17.9, standard deviation [SD] = 1.7) were positively correlated with educational level (r = 0.383, p = 0.013). High attitudinal scores (x¯ $\bar{{\rm{x}}}$ = 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.
This study demonstrates the importance of caregiver considerations where restrictive therapeutic diets are required for children with inherited metabolic diseases. Caregivers had high levels of knowledge and self‐perceived confidence with overseeing the diet for their child with galactosaemia; however, negative perceptions related to breast milk provision and social exclusion were evident. Dietary interventions should focus on exploring negative perceptions and unique barriers faced by caregivers, alongside offering access to psychological support.
Highlights
Following the therapeutic diet for galactosaemia can be arduous for patients and caregivers.
Breast milk is contraindicated in infants with classical galactosaemia.
Caregivers' negative perceptions and barriers to compliance with the diet should be routinely explored.
Exclusion and safety of their child in social settings are major barriers for caregivers.
A multidisciplinary treatment approach involving psychological support is warranted. |
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| Bibliography: | ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23 |
| ISSN: | 0952-3871 1365-277X |
| DOI: | 10.1111/jhn.13144 |