Informal Caregiving for a Loved One With Cancer
Over two decades, I experienced cancer as both a daughter and a wife. Despite my oncology nursing expertise, I found myself overwhelmed with the responsibilities of caregiving.
In recent years, there has been increasing attention to the pivotal role of family members caring for a loved one with cancer.1 These lay providers render an extraordinary amount of support outside of the formal healthcare setting. They may be spouses, adult children, siblings, partners, or friends.
Before nursing school, I had no personal experience with cancer. Yet in 1970, I was drawn to this new specialty in part because I felt there were dual competencies required to be a proficient oncology nurse. You had to be knowledgeable about the physiological aspects of the disease and its therapies, and you also had to excel in providing the emotional support required by patients and their families. Family caregiver issues have always been on my radar. Despite this sensitivity over time, when cancer entered my life, I became acutely aware of how much we expected of lay caregivers in the absence of formal training and ongoing support.
Over two decades, I experienced cancer as both a daughter and a wife. Despite my oncology nursing expertise, I found myself overwhelmed with the responsibilities of caregiving. It became a second full-time job to communicate, explain, advocate, and care for my loved ones while simultaneously working. Additionally, I assumed the role of information broker for the rest of my family. I got confused with instructions about how to change medications, forgot parts of discussions with the doctors, said “I’m doing OK” in response to offers to help, and found that fatigue became my new best friend. Nowhere in this landscape of caregiving was there any bit of recognition that if I didn’t take care of myself, I wouldn’t be able to care for my loved ones.
This concept of caregiver burden has been defined as the emotional, social, and financial strain of caregiving.2 I would add that the physical toll on caregivers is also an issue. The functional aspects of caregiving often require turning, moving, lifting, and assisting with mobility of the loved one with the disease. There is also increasing evidence that caregivers’ health may also be at risk due to their focus on their ill loved one’s status and omission of their own health concerns. Because of our reliance on family caregivers to provide the majority of patient care outside of the acute care setting, it is important that professional caregivers have knowledge of what constitutes their stress.
A recent article by British colleagues reported on the thematic analysis of a new tool called “Measure Yourself Concerns and Well-Being” for informal caregivers of people with cancer.3 Results revealed that major concerns were divided into two major categories: caregivers concerns for self, and concerns about the caregiver-patient with cancer dyad. Self-concerns focused on psychological and physical worries inclusive of changes in the caregivers’ identity, their ability to provide necessary care, and their ability to cope with the scope of emotional responses they experienced. The dyadic care concerns focused on practical issues (i.e., addressing nutritional needs, managing finances) to managing end-of-life issues (i.e., existential concerns such as the suffering) and the interpersonal relationship with the ill loved one in a state of transition.
This tool offers the possibility of collecting systematic data collection as to the prominence of individual concerns germane to family caregivers. Such inquiry needs to prevail over time as needs fluctuate and are related to their loved one’s condition.
Informal caregivers experience a broad spectrum of concerns about themselves and those they care for. They range from practical sources to existential ones (i.e., being alone, the nature of suffering). An ongoing systematic appreciation of issues is important to sensitize professional caregivers to the broad scope of variables that impact caregivers’ ability to provide care to their loved one. Using the Distress Thermometer routinely with family caregivers, is one strategy to identify their anguish and needs for help.4
1. Kim Y, Kashy DA, Spillers RL, Evans TV. Needs assessment of family caregivers of cancer survivors: Three cohorts comparison. Psycho-Oncol. 2010. 19(6): 573-582.
2. Stenberg U, Ruland CM, Miaskowski C. Review of the literature on the effects of caring for a patient with cancer. Psycho Oncol. 2010. 19(10): 1013-1025.
3. Jolliffe R, Collaco N, Seers H, Farrell C, Sawkins MJ, Polley MJ. Development of ‘Measure Yourself Concern and Wellbeing’ for informal caregivers of people with cancer — A multicentered study. Supp Care Oncol. 2019. 27: 1901-1909.
4. Zwahlen D, Hagenbuch N, Carley MI et al. Screening cancer patients’ families with the Distress Thermometer (DT): A validation study. Psycho-Oncol. 2008. 17(10): 959-966.