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

Abstract

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.

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

“…AXIS scores ranged between 13 and 20 (maximum score). Two studies scored less than 15, whereas five studies received the maximum score . Mean score was 17.2 (SD 1.7).…”

“…Most of the included studies showed minor methodological shortcomings, according to the STROBE or AXIS scores. Only two of 42 studies were awarded the maximum STROBE score of 4, meeting all criteria for study quality, whereas five studies achieved the maximum AXIS score of 20 . All other studies presented with minor methodological issues.…”

The experience of carers of children with cerebral palsy living in rural areas of Ghana who have received no rehabilitation services: A qualitative study

“…It is estimated that worldwide there are between 2 and 3 children per 1,000 born with CP (Pousada et al, ); however, it is not known how many children live with CP in rural areas (Zuurmond et al, ). This study is the first to explore the experience of caregivers in rural areas in Ghana whose children with CP have not received rehabilitation services.…”

“…After the conclusion of our study, we offered this opportunity to the participants and subsequently they all participated in the programme. The programme has been evaluated (Zuurmond et al, ) with positive results and may serve as a model for other African countries. This evaluative research involved collaboration between community and university researchers and provides contextualized evidence for this type of educational initiative.…”

“…CHNs offer public health outreach, clinical services, and serve as the first point of contact and referrals. However, the services do not include rehabilitation, and there is a clear need for interventions for childhood disabilities (Nyonator, Awoonor‐Williams, Phillips, Jones, & Miller, ; Zuurmond et al, ). In addition, in Ghana, there is a shortage of health professionals particularly in rehabilitation and rural communities face other challenges, for example, no provision of potable water, no electricity, and no access to a good road network (Ghana Statistical Service, ).…”