Editor’s note: One of a series of articles on managing cancer-related symptoms from the Oncology Nursing Society.
More than 1.5 million new cases of cancer will be diagnosed this year (American Cancer Institute, 2010). Many of those patients, in addition to the millions previously diagnosed, require at least some care from an informal caregiver—a family member or friend who is not paid and provides physical, emotional, financial, or other support. The value of this uncompensated care has been estimated at more than $300 billion (Arno, 2006). And that figure promises to grow as treatment advances shift care to the outpatient and home settings (Ferrall, 2006).
Strain and burden are common among informal caregivers and can lead to poor physical and mental health (Goode, Haley, Roth, & Ford, 1998). Because nurses spend so much time with patients and their loved ones, they are well positioned to notice signs among caregivers and intervene. But how do nurses determine who is suffering from caregiver strain and burden?
Assessing caregiver strain and burden is the first step toward alleviating it. A team assembled by the Oncology Nursing Society (ONS) sought tools that measured several aspects of burden, were reliable and valid in oncology populations, were obtained and scored easily, and were brief to avoid additional burden on caregivers. Honea, Sherwood, and Belansky (2009) recommended three tools: the Caregiver Strain Index (Robinson, 1983), the Zarit Burden Inventory (Zarit, Reever, & Bach-Peterson, 1980), and the Caregiver Reaction Assessment (Given et al., 1992; Stommel, Wang, Given, & Given, 1992).
The same ONS team then examined the literature to find ways to help strained and burdened caregivers.
To promote nursing practice that is based on evidence, ONS launched the Putting Evidence Into Practice (PEP) program in 2005. ONS PEP teams consisting of advanced practice nurses, staff nurses, and a nurse scientist were charged with reviewing the literature to determine what treatments and interventions are proven to alleviate many cancer-related problems that are sensitive to nursing interventions. Each team classified interventions under the following categories: recommended for practice, likely to be effective, benefits balanced with harms, effectiveness not established, effectiveness unlikely, and not recommended for practice (Gobel & Tipton, 2009). Interventions recommended for practice were those for which effectiveness was demonstrated by strong evidence from rigorous studies, meta-analysis, or systematic reviews, and for which any expectation of harm was small compared to benefits (Eaton & Tipton, 2009).
The PEP team that studied caregiver strain and burden did an extensive literature search but yielded no published guidelines and few established interventions, despite the prevalence of informal caregiving. Clearly, research is needed. However, based on the existing evidence, the team recommended one strategy—cognitive behavioral interventions—and cited other methods as likely to be effective (Honea et al., 2009).
Recommended for practice: Cognitive behavioral interventions
Cognitive behavioral interventions, which aim to change caregivers’ perceptions of their ability to control a situation, were demonstrated to be effective in oncology populations (Sorenson, Pinquart, & Duberstein, 2002). The goal of cognitive behavioral therapy is to teach caregivers to monitor themselves for personal distress and employ strategies to manage it. Nurses can challenge negative assumptions or thoughts; help caregivers develop problem-solving skills; focus them on managing their time and their emotional reactions; and encourage them to participate in pleasant activities and positive experiences.
Likely to be effective
Some of the studies were conducted in other healthcare populations, such as caregivers of patients with dementia; therefore, the ONS PEP team classified those interventions as likely to be effective in cancer populations.
- Psychoeducational interventions: Individuals or groups partake in structured programs that cover the disease process, information about resources and services, or training about the disease and treatment.
- Psychotherapy interventions: A trained professional works with the caregiver toward the same goals as cognitive behavioral therapy.
- Supportive interventions: Individuals or groups build rapport and discuss feelings, problems, and successes in caregiving.
- Multicomponent interventions: Combining interventions may be more effective than single interventions because they use several techniques and address a variety of needs. Multicomponent interventions may be more effective with older caregivers, those helping older patients, female caregivers, those who report a greater burden, and individuals as opposed to groups (Sorenson et al., 2004).
Call for action
Despite the challenges faced by so many informal caregivers, an extensive review unearthed few studies of interventions for this population. In addition to assessing strain and burden in patients’ loved ones and then intervening with the strategies outlined in this article, nurses should continue to explore and test ways to help them.
Keightley Amen is a staff editor on the Publishing Team at the Oncology Nursing Society.
Caregiver Strain and Burden Rapid Resource
How should nurses assess caregiver strain and burden?
The Oncology Nursing Society Putting Evidence Into Practice team that studied caregiver strain and burden recommended the following measurement tools.
- Caregiver Strain Index (Robinson, 1983)
- Zarit Burden Inventory (Zarit, Reever, & Bach-Peterson, 1980)
- Caregiver Reaction Assessment (Given et al., 1992; Stommel et al., 1992)
What can nurses do to assist family caregivers of people with cancer to reduce strain and burden?
Recommended for practice: Cognitive behavioral interventions
Likely to be effective: Psychoeducational interventions, psychotherapy interventions, supportive interventions, and multicomponent interventions
Effectiveness not established: Discussing psychosocial issues, identifying available resources and discussing coordination of services, massage, respite or adult day care, teaching caregiver self-care, teaching pain management, and teaching symptom management
Effectiveness unlikely: Interventions directed at improving care recipient competence
Note. For more information about the ONS PEP program, visit www.ons.org/Research/PEP or refer to the new ONS book Putting Evidence Into Practice: Improving Oncology Patient Outcomes (Eaton & Tipton, 2009).
American Cancer Society. (2010). Cancer facts and figures 2010. Retrieved from http://www.cancer.org/acs/groups/content/@nho/documents/document/acspc-024113.pdf
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