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Improving nutritional status of children with Cerebral palsy: a qualitative study of caregiver experiences and community-based training in Ghana.

ABSTRACT: Background:Cerebral palsy (CP) is the most common childhood disability worldwide, and evidence shows that children with CP are at an increased risk of malnutrition due to feeding difficulties. This qualitative study explores caregiver experiences of feeding before and after a community-based training program in Ghana. Methods:Thirteen caregivers of children with CP, who were severely undernourished, were interviewed at the start of the training program. Eleven of these were interviewed again after a year of monthly group trainings and home visits, which included guidance on feeding. Four additional caregivers were interviewed at end line. Interviews explored caregivers' mealtime experiences, as well as a 24-hr dietary recall and a structured feeding observation checklist. Children's nutritional status was assessed by anthropometry. Results:Caregivers found mealtimes stressful due to time demands, messiness, and the pressure of providing enough quality food. They felt that the training program had helped reduced this stress and dietary recall data suggested some improved dietary quality. However, there was neither improvement nor deterioration in anthropometric status of the children. Conclusion:Group trainings were welcomed by caregivers and notably reduced stress around feeding times. However, future work is needed in order to improve anthropometric outcomes, including, but not limited to, greater focus on nutritional requirements during caregiver training interventions. Therapeutic feeding programs must also be better utilized and need to be better equipped to care for this group of children, including deviating from standard admission and treatment protocols.

SUBMITTER: Donkor CM

PROVIDER: S-EPMC6341142 | biostudies-literature | 2019 Jan

REPOSITORIES: biostudies-literature

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Improving nutritional status of children with Cerebral palsy: a qualitative study of caregiver experiences and community-based training in Ghana.

Donkor Claudia Mary CM Lee Jackie J Lelijveld Natasha N Adams Melanie M Baltussen Marjolein Meande MM Nyante Gifty Gyamah GG Kerac Marko M Polack Sarah S Zuurmond Maria M

Food science & nutrition 20181115 1

<h4>Background</h4>Cerebral palsy (CP) is the most common childhood disability worldwide, and evidence shows that children with CP are at an increased risk of malnutrition due to feeding difficulties. This qualitative study explores caregiver experiences of feeding before and after a community-based training program in Ghana.<h4>Methods</h4>Thirteen caregivers of children with CP, who were severely undernourished, were interviewed at the start of the training program. Eleven of these were interv ...[more]

PMID: 30680157

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Project description:ObjectiveThe objective of this study was to assess the rehabilitation status and factors associated with rehabilitation service utilisation among children with cerebral palsy (CP) in Bangladesh.Materials and methodsThis is a population-based surveillance study conducted among children with CP registered in the Bangladesh CP Register (BCPR), the first population-based register of children with CP aged <18 years (y) in Bangladesh. Children with CP were identified from the community using the key informant method and underwent a detailed neurodevelopmental assessment. Socio-demographic, clinical and rehabilitation status were documented. Unadjusted and adjusted analyses with a 95% confidence interval (CI) were used to identify potential predictors of rehabilitation service uptake.ResultsBetween January 2015 and December 2019, 2852 children with CP were registered in the BCPR (mean (standard deviation, SD) age: 7 y 8 months (mo) (4 y 7 mo), 38.5% female). Of these, 50.2% had received rehabilitation services; physiotherapy was the most common type of service (90.0%). The mean (SD) age at commencement of rehabilitation services was 3 y 10 mo (3 y 1 mo). The odds of not receiving rehabilitation was significantly higher among female children (adjusted odds ratio (aOR) 1.3 [95% CI: 1.0-1.7], children whose mothers were illiterate and primary level completed (aOR 2.1 [95% CI: 1.4-3.1] and aOR 1.5 [95% CI: 1.1-2.1], respectively), fathers were illiterate (aOR 1.9 [95% CI: 1.3-2.8]), had a monthly family income ~US$ 59-118 (aOR: 1.8 [95% CI: 1.2-2.6]), had hearing impairment (aOR: 2.3 [95% CI: 1.5-3.5]) and motor severity (i.e. Gross Motor Function Classification System level III (aOR: 0.6 [95% CI: 0.3-0.9]) and level V (aOR: 0.4 [95% CI: 0.2-0.7])).ConclusionsRehabilitation status was poor among the majority of the children with CP in the BCPR cohort, limiting their opportunities for functional improvement. A community-based rehabilitation model focusing on socio-demographic and clinical characteristics should be a public health priority in Bangladesh.

Project description:There is a need to understand the growth and burden of malnutrition in children with cerebral palsy (CP) in order to design appropriate inclusive nutrition strategies. We compared the nutritional status and four-year longitudinal growth of a population-based cohort of children and adolescents (C&A) with CP (n = 97; 2-17 years; 55/42 M/F), and an age and sex matched group without CP (n = 91; 2-17y; 50/41 M/F) in rural Uganda. The cohorts were assessed in 2015 and 2019 for weight, height, social demographic characteristics, and feeding related factors. Nutritional status was determined using the World Health Organization (WHO) Z-scores. Wilcoxon sign rank and Mann-Whitney tests were used to test within and between group differences. Multivariable linear regression was used to determine predictors of the change in growth. Approximately two thirds (62/97 (64%)) of C&A with CP were malnourished (with <-2SD in any of the WHO Z-scores), especially those with feeding difficulties (OR = 2.65; P = 0.032), and those who needed to be fed (OR = 3.8; P = 0.019). Both the CP and non-CP groups deviated negatively from the WHO reference growth curve for height, with a significantly slower growth in the CP group (median change score of height-for-age Z score (HAZ) between assessments = -0.80(-1.56, 0.31), p<0.01), than the non-CP group (median HAZ change score = -0.27(-0.92,0.34, p = 0.034). There was a statistically significant group difference in the median HAZ change score between the CP and non-CP groups (z = -2.21, p = 0.026). Severity of motor impairment measured by the Gross Motor Function Classification System (GMFCS-level) correlated negatively (r = -1.37,95%CI -2.67, -0.08) with the change in HAZ scores among the CP group. Children and adolescents with severe motor impairments exhibit an increased risk of malnutrition and growth retardation compared to their age matched peers without CP, which underscores the need to develop inclusive community-based nutrition strategies for children with cerebral palsy.

Project description:BackgroundInformal caregivers represent an important and vulnerable part of the society. They can experience negative psychological symptoms, such as depression and anxiety. Internet-based cognitive behavioural therapy (ICBT) is a promising psychological support option that could be effective in reducing informal caregiver burden as well as improving psychological well-being. Qualitative studies are valuable for gaining insights into participant experiences of using ICBT.ObjectiveThe main aim of this study was to explore informal caregiver experiences and hence acceptability and feasibility of the transdiagnostic ICBT program aimed at reducing informal caregiver burden and increasing the quality of life.MethodsFollowing a strategic sampling procedure, 23 informal caregivers were recruited from previous randomized controlled trial for informal caregivers in Lithuania. Participants were interviewed over phone, using semi-structured interview questions. Interviews were analysed using a thematic analysis approach.ResultsFour themes and a total of 10 sub-themes were generated: I A program as a means of change (Convenience and applicability of the format and materials; Ability to focus on own needs; Opportunity for communication), II Suggestions for the program (Including live support; Tailoring materials and format; Providing with more time and resources), III Driving personal and situational forces (Developing acceptance and adjustment over time; Being proactive and/or receiving support) and Hindering situational factors (Deterioration and unpredictability of the care-receivers health; Lacking external support and opportunities for respite).ConclusionsMost of the informal caregivers were found to be satisfied with the program's format and materials as well as the communication with the therapist via a message function in the program. Some suggestions were made regarding implementation of the live support option. Also, suggestions regarding possibility for tailoring the program's content. Lastly, several personal and situational factors were identified as important in affecting informal caregiver well-being. We conclude that ICBT has potential in reducing informal caregiver burden and improving psychological health. Further research trials are warranted for evaluating both, the effectiveness and the feasibility of the program.

Project description:Background:Many children in low and middle income countries (LMIC) are exposed to trauma. Contact with public services are a potential influence on parent-child reactions and coping post-trauma. Little is known about how caregivers perceive these interactions. Methods:The aim of this study was to explore caregivers' experiences of accessing and interacting with public services post-trauma and perceptions of needed improvements to public services in a LMIC context. Qualitative interviews were conducted with 20 female caregivers from a high-risk settlement in South Africa after child trauma exposure. Results:Three themes and seven sub-themes were identified regarding caregivers' perceptions of interactions with public services post-trauma. The key themes identified related to (1) communication and exchanges with law enforcement, (2) consequences of an under-resourced justice system and (3) importance of communication and empathy in the healthcare system. Interactions with police were often positive. However, caregivers explained that police-family communication post-trauma could be improved and may help to lessen caregiver anxiety and concerns for the child's safety post-trauma. Caregivers perceived the judicial system to be under-resourced as contact with the judicial system was often protracted and caused child anxiety and distress. Medical treatment was reportedly rushed, with extensive waiting times and little information provided to caregivers regarding the child's injuries or treatment. Some medical staff were perceived as unsympathetic during the child's treatment which was found to exacerbate caregiver and child distress post-trauma. Conclusions:This study provides insight into caregiver experiences of accessing public services following child trauma exposure in a high-risk LMIC context. Public services were perceived as oversubscribed and under-resourced and negative interactions often influenced caregiver responses and appraisals of child safety. Given the impact of poor interactions with public services on families post-trauma, additional research is needed to investigate feasible improvements to public services in LMIC.

Dataset Information

Improving nutritional status of children with Cerebral palsy: a qualitative study of caregiver experiences and community-based training in Ghana.

Publications

Improving nutritional status of children with Cerebral palsy: a qualitative study of caregiver experiences and community-based training in Ghana.

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