Article previously published in the Cutaneous Lymphoma Foundation's Forum 2017 Issue 2 newsletter.
Assisting in the care of a person diagnosed with a chronic illness presents many challenges. It is increasingly required in today’s health care system where rising health care costs put more and more responsibility on the family to provide care for loved ones. Caregiving can impact a family’s quality of life, both financially and physically, increasing the risk for fatigue, stress, anxiety, depression, insomnia, and physical illness1. Caregiving demands often conflict with other family and work responsibilities, resulting in lost work time and income, decreased productivity, and exponentially increased stress.
As a nurse, I have had the extreme privilege of caring for patients with cutaneous lymphoma over the past 30 years. During this time, sitting alongside my patients and hearing their stories, struggles, victories, and worries, I have also learned much from the caregivers who share in this experience. These caregivers are the evidence that the disease doesn’t just affect the patient, it affects the entire family. I have personally witnessed the difficulty experienced by some caregivers who were wearing out right before my eyes as they cared for an ill loved one with multiple skin care and treatment needs that also required many trips to physician offices and treatment centers. It became evident that the experiences of the caregiver and their ability to keep pace with care demands impacted outcomes for the patient. As the caregiver started to wear out, or even became ill themselves, the care of the patient at home became compromised. This scenario begged the questions:
- Are we, as health care providers, doing enough to support the caregiver, given that their success (or lack of it) could ultimately influence successful outcomes for the patient?
- Were the stressors experienced by caregivers of cutaneous lymphoma patients, especially related to skin symptoms, unique to this group of caregivers?
- How does disease burden of the patient impact the caregiver?
- Do caregivers feel that the health care provider is doing enough to address their needs?
Based upon these questions, and experience at the University of Pittsburgh Medical Center (UPMC), we decided to do a pilot study to look at the characteristics of the caregiver group (demographics), the caregiver burden and quality of life impact experienced by caregivers of patients with cutaneous lymphoma. We were particularly interested to know if caregiver burden differed depending on the severity of the loved one’s disease.
The decision to perform the study was influenced, in part, by the lack of research related to caregiver burden and quality of life impact on cutaneous lymphoma caregivers2. This study was conducted at UPMC by Sue McCann, MSN, RN, DNC; Jill Huwe, MSN, RN: Betsy Astley, BSN, RN; and Cindy Lipner, BSN, RN, all nurses caring for this group of patients, and Oleg Akilov, MD, PhD, the physician director of the cutaneous lymphoma program.
Forty-two caregivers participated in the study, which involved the completion of three anonymous questionnaires: Demographics of the caregiver, the Caregiver Quality of Life - Cancer, and the Zarit Burden Interview. These tools assessed 1) characteristics of the caregiver (age, gender, relationship to patient, and years caring for the patient, along with more in-depth information about the disease stage and its symptoms experienced by their loved one, 2) overall well-being, and 3) personal and role strain. While this was a very small sample of caregivers who were caring for a range of reported disease burden, there were trends in the analysis of data that indicated a relationship exists between the patient’s disease severity and its impact on the quality of life experienced by the caregiver.
Plans for future research with a much larger sample size are underway, as it is an important area of study. It is necessary to more fully understand the quality of life impact on caregivers of patients with cutaneous lymphomas. From this knowledge, we hope to define how to better provide appropriate and relevant support to caregivers of cutaneous lymphoma patients, as it is vital to achieving successful outcomes for the patient. It is a win-win situation.
In the meantime, if you find yourself in a caregiving role and are feeling its potentially difficult and challenging effects, there are some things you can do to lessen some of the stress or strain you may be sensing.
- Take time out of every day to do something good for you. Try to put recreation and exercise in your daily schedule and prioritize it. Taking a walk, doing yoga, and meditation/visualization are great stress busters.
- Find an empathetic ear in a friend or relative, spiritual advisor, support group, or trusted health care provider.
- Get back to, or develop, a hobby that helps to relieve stress.
- Keep a close watch on your own physical and mental health status; don’t let feelings of sadness, important appointments or physician recommendations go by the wayside.
- Make sure you are eating properly: avoid skipping meals or consuming non-nutritious foods routinely
- Don’t be afraid to ask for or accept help. If someone offers help—TAKE IT! If you need help—ASK FOR IT!
1 Ohman, M. & Soderberg. S. (2004). The experiences of close relatives living with a person with serious chronic illness. Qualitative Health Research, 396-410
2 Beynon, T. R. (2014). What are the supportive and palliative care needs of patients with cutaneous t-cell lymphoma and their caregivers? A systematic review of the evidence. British Journal of Dermatology, 599-608.