Needs and experiences of family caregivers during marrow transplantation

To determine the information needs of family members of people undergoing marrow transplantation as well as their actions to meet those needs.

Descriptive, cross-sectional, qualitative design.

Marrow transplant units in the Pacific Northwestern United States.

19 adult family members of people who had undergone marrow transplants.

Researchers conducted four focus group interviews. Three served as data generation interviews, and the fourth served as the validation interview. A transcriptionist recorded the subjects' responses, which then were analyzed using constant comparative techniques.

Themes emerged from the data in five categories: (a) Preparing for Caregiving (seeking and acquiring health care, obtaining information and materials, and evaluating the validity of information), (b) Managing the Care (providing physical care, protecting, maintaining the patient's connection with life, and advocating), (c) Facing Challenges (personal and interpersonal stress, communication barriers with healthcare professionals, and healthcare system barriers), (d) Developing Supportive Strategies (community resources, personal and self-care resources, and healthcare system facilitators), and (e) Discovering Unanticipated Rewards and Benefits (personal growth and family cohesion).

Family members, as well as patients undergoing marrow transplant, experience a unique set of information needs and demands as a result of this experience. However, these demands can be mitigated by actions that provide appropriate education strategies and foster a sense of caring and a nurturing way of interacting among the family, healthcare professionals, and the healthcare system.

Healthcare professionals need to acknowledge the caregiving role and actively involve and support the family caregiver throughout the transplant experience.