Families and heart transplantation: reversing the trajectory of end stage heart disease.

UNLABELLED Family caregiving is central in the heart transplant (HT) process. METHOD Using a constructivist grounded theory approach, study data were collected from 12 health professionals and 15 families in which one member was a HT recipient throughout three phases of the HT process. FINDINGS Our interpretations suggest that family caregiving contributes to "reversing the downward trajectory" of end stage heart disease. This impacts the health of caregivers and disrupted family life. In some families, this caregiving work contributed to a smooth and uncomplicated recovery, while for others caregiving work was demanding and prolonged, or their loved one succumbed. Families reported that access to system-level supports for family caregiving varied. CONCLUSION Family caregiving is an important factor in a successful recovery from HT. To ensure effective family caregiving, support should be available to family members in this role across all stages of the HT process.