Family perspectives of XXXX .

@entity43 @entity1 @entity148
PURPOSE: This qualitative study explored quality of life (QOL) in family caregivers of @entity43 @entity1 to better define their needs for support. DESCRIPTION OF STUDY: One thousand one hundred pieces of correspondence written by family caregivers of @entity43 @entity1 were contributed to the City of Hope investigators by the founder and editor of Conversations!: The International Newsletter for Those Fighting @entity43 . The investigators analyzed meaningful comments in the letters using content analysis methods. RESULTS: Comments by family caregivers reflected little concern for their own physical well-being and, instead, focused on the psychological, social, and spiritual aspects of their experiences. Correspondence on the psychological effects of caregiving demonstrated poor QOL stemming from feelings of lack of control and helplessness. Social data showed that family caregivers lacked support, were given to feelings of isolation, and experienced considerable @entity148 regarding the genetic nature of the disease. Spiritual well-being was particularly important to caregivers, as they drew strength from their faith and were able to find positive meaning in their experiences. CLINICAL IMPLICATIONS: The study findings revealed that caregivers require additional support from the healthcare community, especially to address disease-specific needs in @entity1 with @entity43 . The correspondence demonstrates a need in family caregivers to connect with others fighting the same disease. This study also identifies the need for support for at-risk @entity1 , as well as a continuing need for palliative-care services.
