Table 3 Challenges expressed by home- and community-based care workers and the key messages developed to address these challenges
Challenges | Key message |
|---|---|
Caregivers often lose hope because they feel that their actions may be futile. | Giving a little means a lot: showing the caregiver that the things that she* does to care for the sick child are important, no matter how big or small |
Caregivers are often stressed/burnt out. | Be kind to yourself: reminding the caregiver to look after herself so that she can better take care of the child |
Many caregivers have to deal with poverty, geographical isolation, being unsure of what actions to take e.g. if you suspect that a child is being abused. | Ask for help: reminding caregivers that there are networks of support available to them and that they should seek help; mapping out networks of support with caregivers |
Children often experience stigmatization, abandonment, discomfort and pain, neglect and abuse; caregivers may not know how to respond. | Listen to the child: helping caregivers understand how to listen to the child’s wants and needs, even if they are not expressed verbally |
Offer comfort to a distressed child: teach and support caregivers to give comfort to a sick child | |
Children may experience a range of common health problems that caregivers have to manage. These situations may be exacerbated by a lack of resources. | Prevent and treat: empowering and supporting the caregiver to be able to recognize the signs, then prevent and treat common problems that may arise |
In many cases caregivers demonstrate an overreliance on the home- or community-based care worker. Professional boundaries may be blurred when this overreliance persists. | Empower: empowering the child as well as his/her caregivers and family members to find workable solutions to their problems |
In many families children are not included in discussions about their health. Family members also express uncertainty about the future. | Prepare the child and the family: supporting the caregiver and the family to discuss the issue of sickness and death with a child in a manner that they are comfortable with, and preparing family members for what lies ahead |
Often there are cultural clashes around issues of death and dying. | Remember: supporting the caregiver and family members to deal with the child’s death in culturally-appropriate ways and to remember the child |