In managing allogeneic hematopoietic stem cell transplantation (allo-HSCT), clinical outcomes, as well as psychosocial aspects can prove beneficial in improving care delivery. Researchers of a study published in European Journal of Cancer Care sought to better determine the psychosocial impact of the procedure.
Reviewing qualitative studies addressing this impact, researchers have identified a wide range of stressors and various coping mechanisms associated with allo-HSCT that they say shed a light on the social meaning of stressors following the procedure and coping strategies used to re-adjust.
The data from 20 interviews with allo-HSCT survivors revealed 72 stressors across 7 categories:
- Symptoms after transplantation: Nearly all symptoms were not fatal, although patients reported chronic discomfort and irritation. For example, 11 patients experienced dry mouth and discomfort from furred tongue as a result of decreased survivor.
- Limitations in daily life: According to the researchers, all interviewed patients experienced some limitations in their daily lives, which most patients were ready to accept because they had the opportunity to learn about them. Most limitations were physical, including muscle weakness or fatigue.
- Appearance changes: Some of the interviewed patients reported not leaving their home because they did not want their appearance changes to be seen by others, and some reported feeling no empathy from other people, including family or close friends. Reported stressors included cracked nails and face swelling.
- Relationship anxieties: Interviewees also reported struggles with interpersonal relationships; for example, some reported that their family did not treat them as a survivor of rigorous therapy. Some also reported feeling guilty about being a burden on their families and having friends not being able to relate to their distress,
- Work impairment and financial issues: The researcher also detailed anecdotes from patients who lost their jobs because of their disease or its sequelae, and even if patients could keep their job, they experienced role changes or loss of confidence. Patients who had to find a new job following allo-HSCT claimed job interviews to be one of the hardest situations they experienced following the procedure.
- Uncertainty: This category of stressors included 2 kinds—not being able to adequately foresee the future and the uncertainty coming from day-to-day activities, such as fear of infection. One participant stated, “I was afraid that I would die if the disease recurred.” Patients also reported stress over not being able to predict complications or re-hospitalizations, as well as stress over not being able to plan for the future.
- Disappointed expectations: Interviewed patients indicated that although they tried to control their feelings, it was difficult when circumstances were challenging, and those who had more positive outlooks prior to treatment faced more disappoint when their expectations were not met.
In addition to a broad array of stressors the interviews also revealed coping mechanisms used by patients included direct efforts to manage problems, such as using a wig or hat for hair loss and avoiding unsafe situations; adaptive attitudes, such as accepting the state of side effects; and seeking and relying on social support.
“The findings of this study have clinical implications for the design and implementation of effective interventions for all-HSCT survivors,” conclude researchers. “Which can improve the quality of care delivered to this group and enhance post-treatment quality of life and adjustment.”
Kusaka K, Unoguchi H, Nakahara R, et al. Stress and coping strategies among allogeneic haematopoietic stem cell transplantation survivors: a qualitative study. Eur J Cancer Care. Published online September 5, 2020. doi:10.1111/ecc.13307