Forgotten Survivor Majority: Family Caregivers

The knowledge and scientific base concerning cancer survivors has steadily increased over the past decade, but what lags far behind is our understanding of the lived experiences of secondary cancer survivors -- family caregivers.

Obviously, relatives and close friends did not experience the crisis of cancer firsthand. However, they must respond to, struggle with, and integrate into their lives the turmoil that cancer creates. Their role also involves learning new skills in providing complex nursing care outside the institutional setting. These skills include assessment and monitoring, hands-on interventions, problem-solving, mobilizing resources, and providing emotional support to the patient and the extended family.

It is virtually impossible to estimate the number of American family cancer survivors, in large part because the term "family" is often very loosely defined. It may include spouses, children, siblings, grandchildren, nieces, nephews, cousins, neighbors, lifelong friends, work colleagues, and many others. Most likely, more than 4 million Americans provide some degree of support to a family member undergoing active treatment for cancer annually.¹ Countless loved ones offer some modicum of physical, emotional, social, and spiritual support to long-term cancer survivors. Hence, our knowledge of the masses of family cargivers within the cancer survivor experience is extremely limited.² Kim and colleagues³ recently published their investigation of more than 1,200 family caregivers five years following their loved one's initial diagnosis with cancer. A brief synopsis of key findings included the following:

• One out of seven family members studied assumed caregiving responsibilities for many years following the initial phase of cancer survivorship.
• Older caregivers reported better psychosocial adjustment but poorer physical health compared with younger caregivers.
• Caregiving was portrayed as an intense and, at times, overwhelming stressor; themes of isolation, lack of education, and anxiety prevailed.
• The majority of literature focuses on spousal caregiving to the exclusion of elderly parents, siblings, and middle-aged adult children who provide caregiving support.

These findings are probably not surprising to many of you. We hear about and observe the dilemmas caregivers face daily in our practices, and we advocate for them. The demands of protracted caregiving over decades can have innumerable consequences on families as they relate to emotional, social, and economic sequelae. Wives may be particularly burdened by long-term caregiving, which in turn can influence their employment status.⁴ Relocation may be required, and a drain on family finances may also ensue.⁵ These sequelae only reinforce what we already know. Cancer has problems knowing its boundaries. It is indeed a family disease.

So what's an oncology nurse to do? You say to yourself, "I'm really limited. I don't have a PhD, and I can't be a principle investigator on a major research initiative to study this significant problem." Well, there are some interventions that you can consider.

• Integrate into your patient follow-up (i.e., six-month, one-year, two-year) assessment criteria a question for family members about what concerns them the most. Address that concern as you would for the patient/survivor.
• Mobilize resources in your community. Inquire with colleagues who might be interested in starting a Family Survivorship Support Group.
• Plan and pilot a Family Caregiving Educational Series (three to four sessions) to assist families coping with the immediate phase of survivorship after the cessation of active treatment. Base the topics on feedback discerned from a family caregiver focus group.

As an oncology nurse, taking just one step to address family issues during survivorship makes a huge difference. Making no connection only reinforces the norm of inattention, alienation, and underrecognition of the huge contribution that family caregiving provides in cancer care. They need all the help we can give them.