Loneliness in Transplant Caregivers: Exploration of Related Factors

Serving as a caregiver for someone undergoing intense cancer treatments, such as allogeneic transplantation, has benefits but also carries unavoidable psychological and emotional effects, which may include loneliness. Loneliness is defined as feeling isolated or alone when one desires connections with others. Cross-sectional data were drawn from hematopoietic stem cell transplant (HSCT) caregivers (CG) (n=21) and matched (age, gender, race/ethnicity) non-caregiver controls (MC) (n=20) to examine their level of loneliness and related factors. Methods: Adult HSCT CGs literate in English/Spanish, pre-HSCT, completed the Health Promoting Lifestyle Profile-II, General Self Efficacy scale, PROMIS short forms and UCLA Loneliness scale. Results: CGs were primarily female (66.7%), 50.8 years old (+ 11.9) and spouse of the HSCT recipient (52.4%). Thirteen (61.9%) were sole CGs while 38.1% were members of a CG ‘network’. Adult patients were preparing for a reduced intensity (61.9%), peripheral blood (95.2%) related donor (85.7%) HSCT for lymphoma (28.6%) or leukemia (33.3%). CG loneliness scores were significantly higher (p=0.022) than MCs (20.86 + 5.7 vs. 17.0 + 4.6), with male CGs significantly higher than male MCs. Sole male CGs who were spouses reported highest loneliness scores. Loneliness was significantly related (p<0.05) to interpersonal relations, spiritual growth and self-efficacy, suggesting CGs with well-established relationships, spiritual connections and confidence in their caregiving abilities were less lonely. Conclusion: Confidence as a CG is critical for HSCT patient recovery but also CG well-being. Assessing loneliness in HSCT CGs may be of value especially in groups at risk for loneliness. Future research should explore interventions that modify health behaviors such as developing relationships and enhancing self-efficacy in CGs and HSCT recipients.

Acknowledgement

This research was supported by the Intramural Research Program of the NIH, Clinical Center, Nursing Research & Translational Science of the Nursing & Patient Care Service.