Caregiving for a person with cancer, while they go through chemotherapy and radiation, presents numerous challenges. However, when a person with cancer is given the treatment option of stem cell transplant, caregiving becomes more complex and challenging. Stem cell transplants impact not only the person with cancer but their loved ones as well, who are required to be more involved throughout the transplant process.
Perhaps no practice on the medical team knows more than nurses that the treatment and recovery are complex and put extreme social strain on patients and caregivers. About 20-30% of people with cancer will relapse after a stem cell transplant. In addition, 30% of people with cancer will have lingering treatment-related complications such as Graft vs. Host Disease.1
Due to the significant morbidity and mortality, caregivers experience high-stress levels related to the physical and emotional care that the person with cancer needs before, during and after the transplant procedure. Similarly, most caregivers are new at caregiving through a complex treatment such as a stem cell transplant. This may leave caregivers unprepared for the toll it takes on them emotionally and physically. 3
Additionally, caregivers may feel responsible for the outcome of the transplant. Studies show how well the person with cancer does in the treatment determines how the caregiver will respond to being a caregiver. If the transplant recipient has complications and side effects that are not able to be managed, caregivers may feel especially strained which can lead to an increase of frustration, anxiety, and depression.2
The caregiver’s new role can make them feel as if their whole world has been turned upside down. For example, instead of working full time at home or a job, caregivers are now required to spend long periods of time with their loved one, assisting them at doctor appointments, preparing food and helping to manage side effects of the transplant process. Most caregivers have other responsibilities as well such as helping care for other family members. Although caregivers are willing to help their loved ones and are willing to be involved, it’s a lifestyle change that can be overwhelming and unfamiliar.3
With the increased amount of stress, caregivers sometimes become hesitant to seek help for themselves, feeling they do not want to distract the medical team from the needs of the patient. Many hospitals use the Hospital Anxiety and Depression Scale (HADS) to measure the patient’s psychological stress, which is effective in detecting depression, anxiety, and distress. However, there is no testing to screen distress in caregivers. Findings suggest that distress can increase when there are practical or unexpected problems throughout the journey of a stem cell transplant. Currently, the experience of the patient is routinely assessed, but there is no formal approach at this time to address concerns of caregivers, physically or emotionally. 4
Some concerns caregivers have include managing their own emotional and physical stress, finding time for themselves and balancing work and family responsibilities. Many caregivers are responsible for juggling multiple roles all at once as their loved one begins a transplant. For example, a female may become a caregiver, spouse, and mother. 3
Because of the intimate nature of transplants, nurses meet families through the treatment process and are in a perfect position to recognize the multiple stressors playing out on caregivers. For example, federally mandated Family and Medical Leave (FMLA) covers only 12 weeks of unpaid leave, and transplant patients can take up to a year or longer to recover from the procedure.
Even with 12 weeks of protected leave, caregivers often need many more weeks to continue to care for their loved ones. 5
Nurses can refer caregivers to other team members such as social workers, patient navigators, behavioral health and billing specialists for help locating financial resources throughout the transplant and recovery process.
It is important for nurses to recognize the needs of caregivers during and post-treatment because, without support, many caregivers may burn out, which can lead to their own health problems, and put the health of the person with cancer at risk. Reminding caregivers of the many and diverse professionals in the medical team and their roles who can help them with issues such as dividing caregiving responsibilities using an app like My Cancer Circle
, finding resources and getting emotional support from organizations such as CancerCare https://www.cancercare.org/
, locating financial and medical supply resources and other issues as they arise.
As medical providers, nurses are first-hand witnesses to the struggles of caregiving. Most importantly, checking in with caregivers to get a better sense of how they are doing can be one of the most helpful interventions. Caregivers play a critical role in the transplant process and, even more importantly, in the patient’s life and recovery.
- Eldredge DH, Nail LM, Maziarz RT, et al. Explaining family caregiver role strain following autologous blood and marrow transplantation. J Psychosoc Oncol 2006;24:53-74
- . Gaston-Johansson F, Lachica EM, Fall-Dickson JM, et al.Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncol Nurs Forum2004;31:1161-1169
- Cooke, L., Gemmill, R., Kravits, K., & Grant, M. (2009). Psychological Issues of Stem Cell Transplant. Seminars in Oncology Nursing, 25(2), 139–150. doi: 10.1016/j.soncn.2009.0008
- Bevans, M., Wehrlen, L., Prachenko, O., Soeken, K., Zabora, J., & Wallen, G. R. (2011). Distress screening in allogeneic hematopoietic stem cell (HSCT) caregivers and patients. Psycho-Oncology, 20(6), 615–622. doi: 10.1002/pon.1906
- Family and Medical Leave (FMLA). (n.d.). Retrieved October 10, 2019, from https://www.dol.gov/general/topic/benefits-leave/fmla.