Unmet Needs of Family Caregivers: An Action Agenda

7/27/2015, Deborah A. Boyle, RN, MSN, AOCNS, FAAN, the onc.org

Lay family caregivers assume responsibility for an extensive array of unfamiliar and uncompensated caregiving tasks which last for months and even years. These responsibilities can be emotionally, physically, socially, and financially draining, such that the caregivers’ own physical and mental health may become compromised. A recent Danish study of nearly 600 caregivers’ perceptions of unmet needs by cancer care professionals revealed three important themes that deserve enumeration.¹

One half of those surveyed stated that the healthcare professionals only sometimes, rarely, or never demonstrated interest in how the caregivers were feeling emotionally. Approximately 40% were dissatisfied with the amount of time spent on educating them about their loved one’s cancer and what they needed to be aware of in their caregiving tasks at home, such as side effect management, problem solving, and what to expect, in terms of psychological reactions. One third of the sample felt that they were not optimally involved in the patient's care.

In looking at subsets of caregivers, siblings, and adult children of adult patients, reported higher levels of unmet needs and difficulties interacting with the team as did younger caregivers overall and caregivers of younger patients. Primary caregivers of patients with head and neck and gynecological malignancies were in need of more assistance from the team than other groups. Separated, divorced, single, and widowed caregivers had the greatest need to have contact with other caregivers, and those caring for loved ones with stage 4 disease voiced feeling most deprived of hope from the cancer care team.

The results of this study validated what I have seen time after time in family caregivers over my 4 decades of cancer nursing practice. Caregivers are reticent to ask for help for themselves, but they are in significant need of it. This involves emotional support, communication of our empathy for them, and providing more and repeated information than we currently give. There are some practical steps we can take to address these unmet needs.

As much as we assess symptom needs of the patient individually and over time, we should periodically inquire, “How are you doing?” with primary caregivers. We can ask, “What didn’t you understand about what the physician just told you?” By stating the comment this way, it implies that some added teaching is expected. And also, just because we tell them once, it doesn’t mean they "got it."

Offer to tape the advice you are giving on their iPhone so they can hear it again when they are at home and their children can hear the instructions as well. Use graphics and diagrams whenever possible to reinforce the spoken work. We need to validate how well the caregiver is performing in their new role. Comments such as, “Yes, it was good that you called the office before the weekend, otherwise, we wouldn’t have known that the new pain medication wasn’t working.”

Results of studies like the aforementioned give us some concrete ideas of how we can improve our interactions with lay caregivers. As we embrace them as caregiving partners, their support needs will most certainly become apparent with greater clarity.

References:

1. Lund L, Ross L, Petersen MA, Groenvold M. (2015). The interaction between informal cancer caregivers and health care professionals: a survey of caregivers’ experiences of problems and unmet needs. Supportive Care Cancer, Jun; 23(6):1719-33.

To learn more, or to read the original article, please go here.