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.

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.

Background Children with cerebral palsy (CP) are vulnerable to recurrent respiratory tract infections (RTIs), contributing to morbidity and repeated hospital admissions. Parents and primary caregivers play a central role in prevention, early recognition, and home management; however, Malaysia-specific validated tools to assess parental knowledge, attitudes, and practices (KAP) regarding RTIs in CP are limited. Developing and preliminarily validating a KAP questionnaire is essential for assessing parental self-healthcare related to RTIs among children with CP in Malaysia. Methodology A methodological study was conducted to develop and preliminarily validate a KAP questionnaire assessing parental self-healthcare related to RTIs among children with CP. Questionnaire items were developed based on a literature review and the KAP framework. Content validity was assessed by a panel of six experts using the Content Validity Index (CVI). Pilot testing was conducted among 33 parents of children with neurodevelopmental disabilities to evaluate item clarity, feasibility, and internal consistency reliability.