Fear of Recurrence: It's Not Just for Patients

I found Dr. Laurel Northouse’s Mara Flaherty Lecture at this past spring’s 2012 Oncology Nursing Society Congress extremely enlightening. It was one of the highlights of Congress, and something that I shared with the nursing staff I work with upon my return.

One of the main things I was struck by was Northouse’s mention that the fear of cancer recurrence is not only prevalent in family caregivers during survivorship, but may even be more pronounced than the patient’s fear.¹

The key to understanding the plight of family caregivers is the recognition of interdependence between patients and their loved ones: The emotional distress of the patient and spouse are intertwined.

Dr. Northouse even referred to caregivers as "co-sufferers" in the cancer experience. She encouraged us to consider patients and their family caregivers as a dyadic unit of care, rather than isolated recipients of care.

An evolving profile of research has documented subsets of caregivers who report more emotional distress than their loved ones facing cancer. Research done by Mellon, Northouse and Weiss² noted family caregivers have a higher fear of recurrence than patients. The researchers postulated that this was related to a more distant relationship with the cancer care team, and having fewer opportunities to get questions answered and associated fears addressed.

Recognition of risk factors for this occurrence of caregiver distress could help nurses identify those in need of support early.

Interventions that address family emotional distress during survivorship require extensive investigation. But, there are some possibilities to employ in the present. Consider the following:

• Family caregivers can be screened with the distress thermometer to identify their greatest challenges and concerns


• Northouse¹ suggests five questions that form the basis of a caregiver assessment, which could be part of an office practice inventory. They include:
  1. How much emotional strain are you experiencing as you provide care?
  2. What are you doing to take care of yourself?
  3. What helps you to manage stress?
  4. How is this affecting you?
  5. What information or help do you need?
  
  
• Local ONS chapters can develop family education sessions that target care at home, co-taught by oncology nurse colleagues and rotated throughout a geographic locale


• Community-focused resource guides can be developed that depict available programs and types of existing aid appropriate to the care of the patient in the home setting

Extended cancer survivorship is often characterized by feelings of pronounced isolation and worry. This is true for caregivers as well as the loved one with a history of cancer. Do you believe you have a role with family caregivers? What creative interventions have you heard about or developed to help families with this new transition, following active treatment for cancer? What do you think would help?

• Northouse L.L. (2012). Helping patients and their family caregivers cope with cancer. Oncology Nursing Forum, 39(5): 500-506.
• Mellon S., Northouse L.L. & Weiss L.K. (2006). A population-based study of the quality of life of cancer survivors and their family caregivers. Cancer Nursing, 29(2): 120-131.