Family Members of Patients with Burns : Experiences of a Distressful Episode

Abstract: A severe burn is a trauma associated with long lasting consequences, not only for the survivor but also for the family. Although it is recognized that family members are central in providing social support for the patients, previous research has not focused extensively on this group. The aims of this thesis were to increase knowledge about psychological symptoms and health-related quality of life (HRQoL) in family members of patients with burns, as well as to explore their experiences of burn care and rehabilitation. The research questions were approached using quantitative and qualitative methods.The results showed that most family members demonstrate normal to mild levels of psychological symptoms, while one third demonstrate moderate to severe symptoms during care. The symptoms decreased over time and could be predicted to a certain degree by early symptoms.Further, family members’ report of HRQoL is similar to that of the general population. An improvement is seen over time and HRQoL could be predicted in part by earlier life events and psychological symptoms.Family members’ experiences were explored in an interview study. Qualitative content analysis revealed that the time in hospital is stressful, although there were experiences of a positive character.  Family members might benefit from being cared for in a more individualized way. The communication between health care providers and the family members could be improved.Finally, a qualitative content analysis revealed that family members’ experiences and views concerning support is highly individual. There were experiences of sufficient support as well as lack of professional support. Treatment of family members should be modified according to personal circumstances, and it is important to actively include family members in the care process, both before and after discharge.In summary, being a family member of a burn survivor is a distressful experience, not only during care but in many cases also after discharge. The treatment of family members within burn care should be individualized. Some persons are more vulnerable than others and it might be possible to identify those in need of support while care is still ongoing.