Exploring and developing resources for families of children with a life-limiting illness

Abstract

Nothing can prepare a person to care for a child with a life-limiting illness. Children are not supposed to die before their caregivers. Caregivers sometimes are left alone to figure out how to navigate through their children’s illnesses. The health care professionals around them may lack the knowledge and experience to support them. The resources available to families of children with a life-limiting illness are scarce and scattered. Often health care professionals do not have access to information to provide support to these families. The purpose of this research study was to explore what resources are available for families and develop a resource booklet for health care professionals to use to support the families of children under the age of 18 years with life-limiting illnesses. A qualitative research study with open-ended interviews was conducted with eight health care professionals. The interviews were both face-to-face and by telephone. The intention was to gather information that would be utilized to develop a resource booklet. The findings suggest that there is a lack of resources available for health care professionals who provide support for families of children with a life-limiting illness. The research also showed that health care professionals would utilize a resource booklet if available. Health care professionals, families and children with a life-limiting illness are impacted by the lack of resources and would potentially benefit from a resource booklet.