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.

Background Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing. Methods A qualitative longitudinal study was conducted to investigate the impact of a training programme, “getting to know cerebral palsy,” with caregivers on their wellbeing. Eighteen caregivers, from four districts, were interviewed up to three times over 14 months, to assess impact and the reasons for any changes. Results Low levels of knowledge, high levels of stigma, physical and emotional exhaustion, and often difficult family relationships with social exclusion of the child and caregiver were common themes at the outset. Caregivers struggled to combine their caring and economic activities. This was exacerbated by the common absence of the father. Two months after completion of the training, their reported wellbeing had improved. The reasons for this were an improved understanding about their child's condition, positive attitudinal change towards their child, feelings of hope, and through the group support, a profound realisation that they are “not on their own.” While relationships within the family remained complex in many cases, the support group offered an important and alternative social support network. Conclusions This study illustrates the many benefits of a relatively simple caregiver intervention, which has the potential to offer a mechanism to provide sustainable social support for caregivers and children with cerebral palsy. Any future programme needs to also address more structural issues, including stigma and discrimination, and strengthen approaches to family engagement.

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.

Aim This study aims to explore the experiences of carers of children with cerebral palsy living in rural areas of Ghana who have received no rehabilitation services. Background Cerebral palsy is the most common chronic disability from childhood, which needs lifelong rehabilitation. Most of the population living in rural communities in Ghana have virtually no form of rehabilitation services for their chronic disabling conditions. Caring for children with disability are known to be challenging especially when coupled with environmental challenges in rural communities. Results Purposive and snowball techniques were used to recruit 12 carers, age 22 to 68 years, of children with cerebral palsy aged 7 to 15 years. Two main themes, developing personal beliefs to support the caregiving role and the demands that shape the experience of caring, emerged from six subthemes and 25 theme clusters of the narratives of the carers. The essential structure of the phenomenon demonstrated the complex interaction of personal and environmental factors in harmony with the actual demands to influence the experiences of participants positively or negatively. Positively, carers achieved coping, committed to caring, hoped for the future, and accepted the condition. However, negatively, carers described the triggering factors of feeling of despair and sorrow as frustration and lack of understanding of the condition, felt stigmatized, and perceived the child was going through pain and suffering. Conclusions Carers derived strength from their religious and spiritual beliefs to balance the demands of caregiving. Findings could be used as basis for developing interventions to support carers and inform new strategies for rehabilitation service and sensitization of community members about inclusion of children with disabilities.