Family caregivers provide increasingly complex care at home to family members and friends with cancer. Care that was once provided in the hospital by skilled, highly educated, and often advanced certified oncology nurses is now being provided in the home by family caregivers who are most often not in possession of these skill sets.
With the advancement of therapies and delivery methods (eg, oral therapies, outpatient infusions), cancer care has moved out of the hospital and into the community. Along with this transition has come the increasing role played by support persons in our cancer patients’ lives. These informal caregivers provide a wide range of support that has a direct impact on the patient experience. This support ranges from transportation to and from clinic and therapy visits to middle-of-the-night symptom management (think 2 am nausea and vomiting sessions).
We try to anticipate the symptoms that informal caregivers will need to watch for and address at home. We develop pedagogically and empirically based information materials that are designed to be culturally relevant and at the appropriate reading level. We review these materials with the caregiver and patient, often highlighting or underlining the most important parts. We ask them to repeat back their understanding so that we can assess their grasp of the important concepts and actions to be taken. Finally, we provide written and in some cases electronic resources to them as they leave the office. Essentially, we have taken caregiver and patient education to heart, we have followed all the recommendations, and we are fairly certain that we have “done our job.” So why does this same caregiver call the nurse advise line repeatedly with seemingly the same question over and over? How does this patient show up in the emergency room with intractable nausea and vomiting when they were provided all the prophylactic medications to prevent such an occurrence?
Maybe it is because they are not sleeping! Symptoms are best managed when they are detected early, and swift action is taken to control or lessen the symptom.1 As the symptom continues to progress, increasingly more intervention is needed to bring the symptom back to a manageable level or get it under control. If the symptom progression is not addressed in a timely way, the symptom may no longer respond to the available therapies. For example, if the nausea was noticed at 9 pm and oral antiemetic given, the 2 am nausea and vomiting session may have been avoided. Caregivers do not have the nursing experience that affords them the ability to notice small changes in behaviors that may signal early onset of troubling symptoms. Caregivers are also chronically sleep deprived.
Over the past 20 years, my program of work has focused on gaining a better understanding of and developing interventions to improve the experiences of family caregivers of persons with cancer. The most constant messages I receive are that sleep quality decreases significantly following a cancer diagnosis, and sleep quality (good or bad) colors the experience (bad sleep = bad experiences). These findings are supported both in my work and the work of others; in fact, it has been estimated that approximately 50% of informal caregivers report symptoms of insomnia while providing supportive care to persons with cancer.
Insomnia (difficulty falling asleep, maintaining sleep, waking feeling unrefreshed2) results in chronic sleep deprivation. When the brain is sleep deprived, cognition is impaired. We can’t see clearly, interpret data correctly, and remember what to do and how to do it in response to what we see.3,4 Essentially, no matter how “perfectly” we design and deliver educational materials to patients and caregivers, if they are sleep deprived, they will not be able to retain or utilize that information in the home setting.
As nurse scientists, we assess the environments that our patients and caregivers are living in for risks and benefits. We also assess education levels, sociodemographic factors, sex, and social factors that may influence their cancer trajectory. But if we do not consistently assess their sleep quality, we are overlooking a basic vital sign of how prepared they are to receive information and act upon it. There are valid and reliable, easily accessible, and clinically relevant tools available to assess sleep quality (eg, National Institutes of Health toolbox).5 A number of oncology nurse scientists have consistently reported the contribution of sleep quality to patient outcomes and/or caregiver outcomes; however, there is a lack of data to support the relationships between sleep quality and caregiver and patient ability to learn and apply symptom management education.
A unique contribution of nursing science to the understanding of human experiences is that we holistically evaluate biopsychosocial contributors to those experiences. Sleep is undeniably a contributor to patient and caregiver experiences and must be considered when we are designing any research projects that actively engage the patient and/or caregiver in the process of learning, remembering, and acting to influence their own outcomes.
1. Knoerl R, Hong F, Blonquist T, Berry D. Impact of electronic self-assessment and self-care technology on adherence to clinician recommendations and self-management activity for cancer treatment-related symptoms: secondary analysis of a randomized controlled trial. JMIR Cancer
2. American Academy of Sleep Medicine. International Classification of Sleep Disorders
. 3rd ed. Darien, IL: American Academy of Sleep Medicine; 2014.
3. Guo H, Wei M, Ding W. Changes in cognitive function in patients with primary insomnia. Shanghai Arch Psychiatry
4. Wild CJ, Nichols ES, Battista ME, Stojanoski B, Owen AM. Dissociable effects of self-reported daily sleep duration and high-level cognitive abilities. Sleep
5. National Institutes of Health. PROMIS NIH toolbox website
. Accessed May 7, 2019.