Exploring the Barriers and Motivators to Dietary Adherence among Caregivers of Children with Disorders of Amino Acid Metabolism (AAMDs): A Qualitative Study

Abstract

Dietary intervention is generally accepted as the mainstay of treatment for patients with disorders of amino acid metabolism (AAMDs). However, dietary adherence to a low-protein diet is always reported as a common challenge among these patients. This study explored the perception of barriers and motivators to dietary adherence among caregivers of AAMD patients in Malaysia. Twenty caregivers of children with AAMDs receiving ongoing treatment at the genetic clinic participated in an online focus group discussion from November to December 2021. Findings showed a total of five interrelated main themes identified from focus group discussion (FGD) exploring parents’ experiences related to the management of their child’s daily diet. The barriers to dietary adherence were burden of dietary treatment, diet and dietary behavior, parenting challenges, limited knowledge related to dietary treatment, and challenges in healthcare system delivery. Key factors facilitating good dietary adherence include good knowledge of dietary treatment, parental coping strategies, social coping, and dietary behavior. In conclusion, despite the existence of several barriers to the implementation of dietary treatment, caregivers managed to use a wide range of coping strategies to overcome some, if not all, of the challenges. The important next step is to develop, in conjunction with multidisciplinary healthcare professionals, feasible implementation strategies that could address these barriers and at the same time improve the quality of life of caregivers.

Dietary Adherence in Children with Amino Acid Metabolism Disorders and its Impact on Caregivers’ Quality of Life

“…Nevertheless, this discrepancy might be attributed to the fact that medical visits and medical food are fully reimbursed by the Ministry of Health in Malaysia. Among the barriers to dietary adherence are burden of dietary treatment, diet and dietary behavior, parenting challenges, limited knowledge related to dietary treatment, and challenges in healthcare system delivery (Lim et al 2022). Our study supports the hypothesis that increase in dietary adherence leads to a lower QoL.…”

“…However, the strict adherence of lifelong dietary and medical treatment for pediatric patients with AAMDs imposes a considerable burden for caregivers, requiring exclusive dedication that could also potentially compromise their well-being (Lim et al 2022;Zeltner et al 2019;Martianto et al 2011). Research demonstrates that adhering to these specialized diets can contribute to higher perceived stress and a lower Quality of Life (QoL) among the caregivers (Fabre et al 2013).…”

Behind Protein Synthesis: Amino Acids—Metabokine Regulators of Both Systemic and Cellular Metabolism

“…The clinical management of children with disorders of AA metabolism has also been studied and discussed in this Special Issue. The paper by Lim et al provides important suggestions for the implementation of feasible and effective strategies to improve and motivate dietary adherence of prescribed diets among both patients and care-givers [13].…”