Knowledge, Motivation, Problems and Caring Needs among Caregivers of Children with Cerebral Palsy: An Embedded Mixed–method Study
Keywords:
cerebral palsy, child, caregivers burdenAbstract
This embedded mixed-method study aimed to investigate the knowledge, motivation, problems, and caring needs of the caregivers of children with cerebral palsy. The participants were 29 caregivers of children with cerebral palsy receiving treatment at a super-tertiary hospital. The research instruments included questionnaires on personal information, the knowledge, motivation, perception, and health status of caregivers, caregivers' satisfaction with caring activities and practice, the health status of children with cerebral palsy, and open-ended questions related to caring for children with cerebral palsy. The validity and reliability of the instruments were found to be 0.67-1.00 and 0.78-0.81, respectively. Quantitative data were analyzed using descriptive statistics. Content analysis was employed and the arising themes were explored to shed light on quantitative data.
The findings revealed that the caregivers had the least knowledge in caring for children's activities of daily living, especially regarding mucus clearance and the causes of illnesses. Their motivation to care for the children was at a high level. Their perception of the equipment, tools, and budget requirement for care was high. They also had a high level of perception that the children's illness can cause problems with their physical and mental quality of life. The caring activities for the children that were only sometimes practiced included having children drink at least 6-8 glasses of clean water per day, training children to defecate, forgetting to give the children medicines, not taking the children to see the doctor before the appointment when having complications from their medicines. The satisfaction with the outcomes of care regarding developmental progress was moderate. However, the caregivers' satisfaction in caring for children was high. The results of the in-depth interviews could be categorized into four themes: problems in caring for children with cerebral palsy, expectations and caring needs of children with cerebral palsy, factors supporting care, and guidelines for caring for children with cerebral palsy in the future. Therefore, nurses can use the results of this study to develop standards of care for children with cerebral palsy and help to meet the needs of children with cerebral palsy and their caregivers.
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