title: The experience of spouses as informal caregivers for recipients of hematopoietic stem cell transplants.
abstract: Spouses often are the primary caregiver for the hematopoietic stem cell transplant (HSCT) recipients and participate in the transplant recipients' care throughout the HSCT trajectory. The purpose of this qualitative study was to explore and describe the experiences of spouses of HSCT recipients during the acute phase of the transplant trajectory. The participants were spousal caregivers (8 wives and 3 husbands) of transplant recipients. Each participant was interviewed 1 to 6 times. Data were analyzed using Spradley's domain analysis. As couples entered the transplant experience, spouses described a sense of dislocation from normal life. They were now riding a rollercoaster in the dark as they lived the uncertainty of this risky therapy. Spouses structured the uncertainty with rituals, formed a positive perspective, and envisioned the future. They described a caregiving role but also needed to balance "me and my world" with "us and our world."
authors.affiliation: College of Nursing, University of Nebraska Medical Center, Omaha,. NE 68198-5330, USA. mwilson@unmc.edu
authors.forename: Margaret E
authors.initials: ME
authors.lastname: Wilson
authors.forename: June
authors.initials: J
authors.lastname: Eilers
authors.forename: Judith A
authors.initials: JA
authors.lastname: Heermann
authors.forename: Rita
authors.initials: R
authors.lastname: Million
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data; D002562:Ceremonial Behavior; D017281:Cost of Illness; D005239:Fear; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000009:adverse effects / Q000523:psychology; D006801:Humans; D008297:Male; D008875:Middle Aged; D015146:Midwestern United States; D008960:Models, Psychological; D009013:Morale; D015404:Nursing Methodology Research; D036301:Qualitative Research; D012380:Role; D018454:Spouses / Q000523:psychology* / Q000706:statistics & numerical data; D013315:Stress, Psychological / Q000523:psychology; D011795:Surveys and Questionnaires; D035501:Uncertainty