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.
Results. The prevalence of malnutrition was very high: 65% of children aged <5 years were categorised as underweight, 54% as stunted and 58% as wasted. Reported difficulties with child's feeding were common and 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). No association between caregiver quality of life and nutritional status was evident.Interpretation: There is a need for appropriate, accessible caregiver training and support around feeding practises of their children with cerebral palsy, to improve child nutritional status and caregiver well-being.
A child’s development is embedded within a complex system of relationships. Among the many relationships that influence children’s growth and development, perhaps the most influential is the one that exists between parent and child. Recognition of the critical importance of early parent-child relationship quality for children’s socioemotional, cognitive, neurobiological, and health outcomes has contributed to a shift in efforts to identify relational determinants of child outcomes. Recent efforts to extend models of relational health to the field of child development highlight the role that parent, child, and contextual factors play in supporting the development and maintenance of healthy parent-child relationships. This review presents a parent-child relational health perspective on development, with an emphasis on socioemotional outcomes in early childhood, along with brief attention to obesity and eating behavior as a relationally informed health outcome. Also emphasized here is the parent–health care provider relationship as a context for supporting healthy outcomes within families as well as screening and intervention efforts to support optimal relational health within families, with the goal of improving mental and physical health within our communities.
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