Browsing by Author "Blaauw, Giana Francis"

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    Nutrition-related knowledge, perceptions, and practices of caregivers with galactosaemic infants and children following a therapeutic diet in the United Kingdom
    (Stellenbosch : Stellenbosch University, 2023-03) Blaauw, Giana Francis; van Niekerk, Evette; Dolman-Macleod, Robin Claire; Singini, Isaac; Lombard, Carl; Stellenbosch University. Faculty of Medicine and Health Sciences. Dept. of Global Health. Human Nutrition.
    ENGLISH SUMMARY: Background and purpose: Classical galactosaemia is a rare but life-threatening inherited disorder of carbohydrate metabolism. There is no cure for the disease and the primary treatment is a lifelong therapeutic (galactose-restricted) diet commenced in infancy. Living with this rare disease and adhering to the restrictive diet can be burdensome on patients and their families. Research exploring caregiver considerations related to the dietary management of galactosaemic infants and children is lacking in the available literature. Aim and objectives: The study aimed to determine quantitatively the nutrition-related knowledge, perceptions, and practices of primary caregivers with infants/children following a therapeutic diet for classical galactosaemia in the United Kingdom. The secondary objective was to determine the perceived challenges (or barriers) faced by caregivers whose infants/children follow a galactose-restricted diet in the United Kingdom. Methodology: A descriptive, cross-sectional study with an analytical component was conducted using a novel online questionnaire. The questionnaire underwent expert peer review to establish the content validity, and a two-week pilot study established the face validity of the instrument prior to the final sampling. Volunteer sampling was used by initially emailing the survey link to 98 eligible members of the Galactosaemia Support Group who were primary caregivers of infants/children from birth to 18 years of age diagnosed with classical galactosaemia and residing in the United Kingdom. The Metabolic Support UK charity also advertised the survey link on its official social media platforms and emailed their eligible members as a supplementary recruitment strategy. Data collection took place between April and July 2022. Results: Forty-three caregivers participated in the study and the response rate was 44%. Most caregivers were mothers (84%) and resided in England (79%). The mean (X̅) age of children with galactosaemia was 8.2 years (SD=4.6) and 59% were diagnosed within the second week after birth. Almost all caregivers were considered to have a high level of dietary knowledge (98%) and perceived themselves to have very good (54%) or good (37%) knowledge about the diet. Caregivers’ knowledge scores (X̅=17.9, SD=1.7) were positively correlated with their education level (r=0.383, p=0.013). Many caregivers had high attitudinal scores (65%) of between 31 and 45 points (X̅=32.5, SD=5.5), indicating that most had an overall positive attitude towards the galactosaemia diet. Almost all caregivers perceived themselves as being confident (42%) or very confident (56%) in managing their child’s galactosaemia diet. Most caregivers had a negative perception towards being unable to feed their child breastmilk (49%), and their perception was significantly associated with their intention to feed their child breastmilk before the diagnosis of galactosaemia (p=0.038). Furthermore, 47% of caregivers felt that their children were excluded in social settings because of their adherence to the galactosaemia diet. Concerns about the safety of the child in other social settings were a barrier for 79% of caregivers, followed by social events involving eating out (53%), and the expense of groceries for the galactosaemia diet (53%). Four or more different barriers to adhering to the galactosaemia diet were reported by the majority of caregivers (54%) and there were significant associations (p<0.001) between the age of the galactosaemic child and the number, as well as the type, of barriers faced by caregivers. Conclusion: Caregiver knowledge and self-perceived confidence related to the galactosaemia diet were high; however, negative perceptions about being unable to feed their child breastmilk and their child’s exclusion in social settings due to their adherence to the diet were evident. Clear barriers for caregivers emerged around social settings, specifically related to the safety of their child, as well as the cost of groceries and eating out. Dietary interventions should focus on exploring the negative perceptions and barriers caregivers experience related to the galactosaemia diet and referrals should be made to relevant services for further support to caregivers, where indicated. Future research is warranted to expand upon these findings and further explore caregivers’ lived experiences of overseeing the therapeutic diet for their child which will help to inform and transform clinical practice to better meet the needs of galactosaemic children and their families.