Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life

Polack, Sarah; Adams, M. S.; O’Banion, David; Baltussen, Marjolein; Asante, Sandra; Kerac, Marko; Gladstone, Melissa; Zuurmond, Maria

doi:10.1111/dmcn.13797

Cited by 61 publications

(72 citation statements)

References 36 publications

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“…Some aspects of mealtimes and feeding their child were improved. Other studies have similarly highlighted the particular challenges of feeding for children with disabilities, including children with cerebral palsy [30, 47–50], and our baseline study showed feeding difficulties were also strongly associated with poorer caregiver QoL and child malnutrition [51]. Yet few studies have evaluated interventions aimed at improving nutritional outcomes for these children in low resource settings: we only found one study in Bangladesh study demonstrated improvements in nutritional outcomes through parental support and training, exclusively focussed on a feeding intervention [30].…”

Section: Discussionmentioning

confidence: 63%

Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana

et al. 2018

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BackgroundIn low and middle-income settings, where access to support and rehabilitation services for children with disabilities are often lacking, the evidence base for community initiatives is limited. This study aimed to explore the impact of a community-based training programme for caregivers of children with cerebral palsy in Ghana.MethodsA pre and post evaluation of an 11-month participatory training programme (“Getting to Know Cerebral Palsy”) offered through a parent group model, was conducted. Eight community groups, consisting of a total of 75 caregivers and their children with cerebral palsy (aged 18 months-12 years), were enrolled from 8 districts across Ghana. Caregivers were interviewed at baseline, and again at 2 months after the completion of the programme, to assess: quality of life (PedsQL™ Family Impact Module); knowledge about their child’s condition; child health indicators; feeding practices. Severity of cerebral palsy, reported illness, and anthropometric measurements were also assessed.ResultsOf the child-caregiver pairs, 64 (84%) were included in final analysis. There were significant improvements in caregiver quality of life score (QoL) (median total QoL 12.5 at baseline to 51.4 at endline, P<0.001). Caregivers reported significant improvements in knowledge and confidence in caring for their child (p<0.001), in some aspects of child feeding practices (p<0.001) and in their child’s physical and emotional heath (p< 0.001). Actual frequency of reported serious illness over 12-months remained high (67%) among children, however, a small reduction in recent illness episodes (past 2 weeks) was seen (64% to 50% p < 0.05). Malnutrition was common at both time points; 63% and 65% of children were classified as underweight at baseline and endline respectively (p = 0.5).ConclusionChildren with cerebral palsy have complex care and support needs which in low and middle-income settings need to be met by their family. This study demonstrates that a participatory training, delivered through the establishment of a local support group, with an emphasis on caregiver empowerment, resulted in improved caregiver QoL. Despite less effect on effect on child health and no clear effect on nutritional status, this alone is an important outcome. Whilst further development of these programmes would be helpful, and is underway, there is clear need for wider scale-up of an intervention which provides support to families.

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Section: Discussionmentioning

confidence: 63%

Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana

et al. 2018

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“…Community implementers need to be better equipped with the knowledge to assess and refer children with CP. There may be an argument for blanket referral of all children with CP to nutrition services (Polack et al., ). These services need to be aware that deviation from standard protocols will likely be required when managing these cases, such as recognizing that children with CP may need to consume RUTF that has been modified in its consistency or to be provided with non‐peanut‐based RUTFs, which are less harmful to the lungs, if aspirated (Adams, ).…”

Section: Discussionmentioning

confidence: 99%

“…This qualitative study was nested within a larger before/after study seeking to evaluate the impact of the community‐based parent CP training program: GTKCP. Findings from this wider evaluation are published separately (Polack et al., ; Zuurmond et al., ). This qualitative study used semistructured interviews with primary caregivers of children with CP, both prior to (“baseline”) and after 12 months of implementing the training manual (“end line”).…”

Section: Methodsmentioning

confidence: 99%

“…Prior to implementation of the training, a baseline survey found that the prevalence of malnutrition was very high: 65% of children aged <5 years were categorized as underweight, 54% as stunted, and 58% as wasted. Reported difficulties with the child's feeding were common, and this was associated with the child being underweight (Odds Ratio 10.7 95% CI 2.3–49.6) and poorer caregiver quality of life ( p < 0.001) (Polack et al., ; Zuurmond et al., ).…”

Section: Introductionmentioning

confidence: 99%

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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

Lee

Lelijveld

et al. 2018

Food Science & Nutrition

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BackgroundCerebral 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.MethodsThirteen 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.ResultsCaregivers 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.ConclusionGroup 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.

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“…The 42 studies included an estimated total of 23 169 participants. The number of participants per study ranged from 30 to 14 806, with a median participant number of 120 (interquartile range [IQR] 55-186): 30≤n<50 (n=8 studies); 29,[33][34][35][36][37][38]49 n<100 (n=10 studies); 39,[42][43][44]47,48,50,63,64,69 n<200 (n=14 studies); [30][31][32]40,41,46,[51][52][53]61,62,65,67 n<500…”

Section: Participantsmentioning

confidence: 99%

Prevalence of drooling, swallowing, and feeding problems in cerebral palsy across the lifespan: a systematic review and meta‐analyses

Speyer

Cordier

Kim

et al. 2019

Develop Med Child Neuro

107

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Aim To determine the prevalence of drooling, swallowing, and feeding problems in persons with cerebral palsy (CP) across the lifespan. Method A systematic review was conducted using five different databases (AMED, CINAHL, Embase, MEDLINE, and PubMed). The selection process was completed by two independent researchers and the methodological quality of included studies was assessed using the STROBE and AXIS guidelines. Meta‐analyses were conducted to determine pooled prevalence estimates of drooling, swallowing, and feeding problems with stratified group analyses by type of assessment and Gross Motor Function Classification System level. Results A total of 42 studies were included. Substantial variations in selected outcome measures and variables were observed, and data on adults were limited. Pooled prevalence estimates determined by meta‐analyses were as high as 44.0% (95% confidence interval [CI] 35.6–52.7) for drooling, 50.4% (95% CI 36.0–64.8) for swallowing problems, and 53.5% (95% CI 40.7–65.9) for feeding problems. Group analyses for type of assessments were non‐significant; however, more severely impaired functioning in CP was associated with concomitant problems of increased drooling, swallowing, and feeding. Interpretation Drooling, swallowing, and feeding problems are very common in people with CP. Consequently, they experience increased risks of malnutrition and dehydration, aspiration pneumonia, and poor quality of life. What this paper adds Drooling, swallowing, and feeding problems are very common in persons with cerebral palsy (CP). The prevalence of drooling, swallowing, and feeding problems is 44.0%, 50.4%, and 53.5% respectively. There are limited data on the prevalence of drooling, swallowing, and feeding problems in adults. Higher Gross Motor Function Classification System levels are associated with higher prevalence of drooling, swallowing, and feeding problems. There is increased risk for malnutrition, dehydration, aspiration pneumonia, and poor quality of life in CP.

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Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life

Cited by 61 publications

References 36 publications

Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana

Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana

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

Prevalence of drooling, swallowing, and feeding problems in cerebral palsy across the lifespan: a systematic review and meta‐analyses

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