Nutritional status as predictors for quality of life among caregivers of children with severe cerebral palsy.

Background: Individuals with severe cerebral palsy (CP) often experience various health issues, including feeding difficulties, which can adversely affect their nutritional status and caregivers' quality of life, e.g., more time spent for feeding rather than own selfcare. This study aimed to determine the prevalence of poor nutritional status among individuals with severe CP and explore its role as predictors for caregivers' quality of life. Methods: This cross-sectional study was conducted in a government hospital (Cheras Rehabilitation Hospital), Community-Based Rehabilitation (CBR) Program, and Spastic Centre [non-profit organization (NGO)] in Klang Valley, Malaysia. Seventy-one participants with Gross Motor Function Classification System (GMFCS) level IV and V were recruited. Sociodemographic data, health-associated data, and anthropometric data were collected. Caregivers' quality of life was assessed using the Pediatric Quality of Life Inventory (PedsQL) CP module version 3.0 which included domains such as Movement and Balance, Eating Activities, and School Activities. Results: Most participants were males (60.6%), with 61 classified as level IV in the GMFCS classification. According to the Eating and Drinking Ability Classification System (EDACS), 59 children were at level IV. In total, 40.8% were underweight according to CP growth chart and 49.3% had mid-upper arm circumference (MUAC) readings below the 5th percentile. The lowest scores in the PedsQL CP module version 3.0 were observed in the Daily Activities (5.34±10.87), and School Activities domains (8.15±18.65). Sociodemographic and anthropometric data, including body mass index (BMI)-for-age, MUAC, body fat, triceps, and subscapular skinfold measurement, were predictors for the School Activities domain [F (11, 44)=3.981, P<0.005, R2=0.499]. Conclusions: Poor nutritional status in individuals with severe CP has been shown to negatively impact caregivers' quality of life. Therefore, a multidisciplinary approach involving nutritional intervention is essential to improve dietary provision and the nutritional status of children with CP.

A Review of Food Texture Modification among Individuals with Cerebral Palsy: The Challenges among Cerebral Palsy Families.

Individuals with cerebral palsy (CP) frequently present with multiple feeding problems, which may require food texture modification to ensure safe feeding. This review aims to explore the challenges individuals with CP and their caregiver's face and recommend modified food textures to ensure safety and improve the quality of life and nutritional status. A systematic search was carried out through four databases (i.e., EBSCO (Medline), PubMed, Science Direct, and Web of Science) between January 2011 and May 2022. Out of 86 articles retrieved, seven were selected based on keywords and seven other studies through manual search-five cross-sectional studies, two qualitative studies, one correlational study, one mixed method study, one case-control study, two sections of books, and two educational materials. The findings suggest that preparation and intake of food with modified texture play a necessary role in the safety of swallowing in addition to physical, social, and environmental aspects. Safety was found to be the crucial part of the food texture modification provision besides considering the stress of the caregivers and the nutritional status of individuals with CP. Currently, there are no standard guidelines available pertaining to food texture modification. This led to uncertainties in the dietary provision among caregivers, which may lead to undernourishment. Hence, standard guidelines relating to food texture modification that focuses on food preparation and menus with calorie and nutrient information are timely to be developed.

The Economic Burden and Determinant Factors of Parents/Caregivers of Children with Cerebral Palsy in Malaysia: A Mixed Methods Study.

The economic burden is a major concern for parents/caregivers of children with cerebral palsy (CP). This study used the sequential explanatory mixed-method approach to explorethe economic burden on parents/caregivers with a CP child in Malaysia and the factors associated with the economic burden. The study period spanned April 2020 and December 2020. A total of 106 questionnaire respondents were selected for the quantitative part, and 15 were interviewed to obtain qualitative input. A retrospective costing analysis was conducted based on the cost data obtained from the questionnaire. The majority of the children were GrossMotor Function Classification System (GMFCS) Level 5 (71%), quadriplegic (63%), and aged >4 years (90%). The estimated annual median total economic burden on the parents/caregivers per child in 2020 was RM52,540.00 (~USD12,515.03), with indirect cost being the greatest cost (RM28,800.00, ~USD6860.16), followed by developmental cost (RM16,200.00, ~USD3858.84), direct healthcare cost (RM4540.00, ~USD1081.43) and direct non-healthcare cost (RM3000.00, ~USD714.60). The annual household income was identified as a significant determinant factor (p=0.019, 95% CI: 0.04, 0.40) of the economic burden. The participants' responses during the in-depth interview in the qualitative part of the study supported the premise that socioeconomic factors play a substantial role in determining the total economic burden. Our findings may aid local policymakers when planning the greater provision of support to the affected families in the future, especially for the parents/caregivers of children with CP, who are facing socioeconomic challenges.