Abstract
Parents and primary caregivers are the most important providers of support and care for their children. Families with children with chronic or life-threatening medical conditions face many challenges that the average family does not. The purpose of this research project was to discover what the effects of having a child with a chronic or severe illness are on the family system. This was done by finding out what has been the most helpful to the family and each of its members during the time since the child has been diagnosed and by finding out what has been challenging to the family throughout their experience. The purpose was also to find out how professionals, specifically social workers, can be of more service to these families. This study used a qualitative research design to gather data from 5 caregivers of 5 children with different chronic or life threatening medical conditions, using in depth interviews. Many common themes were found across diagnoses. As compared to the current literature, many similarities and some differences were found pertaining to the parents, to the ill child, and to the child’s siblings. As an example, the most common negative impacts or challenges on the parents that were reported in this study were handling the initial diagnosis, seeing the child suffer, having fear of harming the child more, juggling work and treatment, lack of understanding and social support from relatives and friends, a negative impact on marriage, handling insurance and finances, and having to repeat their stories over and over. Other notable findings included negative impacts on other family members, helpful coping strategies for family members, and themes for social workers. These findings, along with others, have many implications for clinical social work within and outside of the medical field.