Home > RNJ > 2009 > July/August > Guest Editorial: Family Caregivers Are Unseen Patients

Guest Editorial: Family Caregivers Are Unseen Patients
Linda Pierce, PhD CNS RN CRRN FAHA, Guest Editor

As a caregiver and rehabilitation nurse, I have long been interested in families who are involved in caring processes. The next decades will see increased rates of care-dependent people across the age spectrum. There are estimates that 21% of the American population provides unpaid care to family and friends age 18 and older (National Alliance for Caregiving and American Association of Retired Persons, 2004). Families (spouses, parents, children, or other relatives), with the advice from interdisciplinary professionals like nurses, physicians, social workers, dietitians, and pharmacists, are the main informal caring team for individuals in need of help because they are ill, frail, or have a disability. These family members are the caregivers who provide personal care for reasons of love or duty (Pierce & Lutz, 2009). This translates into more than 44 million unpaid family caregivers in the United States alone (Pandya, 2005). The duration of this caregiving can last from a few months to years (American Society on Aging, 2003). The care that these caregivers provide is valued at approximately $306 billion annually (Centers for Disease Control and Prevention and the Kimberly-Clark Corporation, 2008). Most family caregivers are ill-prepared for this role and receive little or no support; they become the unseen patients.

This issue of Rehabilitation Nursing examines the experience of caregivers across the rehabilitation continuum from mothers of children with learning disability to family caregivers of people with chronic conditions such as stroke or dementia. Kermanshahi and colleagues explore the lived experience of mothers caring for their children with learning disability. These researchers found there was a need for focused and customized support.

Family caregivers are themselves at risk for health concerns. Higher levels of stress, anxiety, depression, and other mental health effects are common among individuals who provide care (Family Caregiver Alliance, 2009). However, there also has long been evidence of the positive effects of caring on caregivers, such as coparticipation in life activities, which benefits both caregiver and care recipient (Beach, 1997; Buber, 1965; Pierce, Steiner, Govoni, Thompson, & Friedemann, 2007; Watson, 1988).

In this issue, Ostwald, Godwin, and Cron find that the reciprocal relationship between the couple (stroke survivor and spousal caregiver) was the only variable that was a significant predictor of life satisfaction. Choi-Kwon and colleagues discuss the burden informal stroke caregivers endure from a cultural perspective, while Lewis and associates describe a stress-busting program for family caregivers. In addition, Kautz and Van Horn demonstrate how promoting family integrity and hope are intertwined when confronting a newly disabled adolescent or adult.

Readers of these articles can use this information to focus their attention on family caregivers and to design and provide new education and support interventions to help them learn about their care-provider role. Interventions also provide a way to investigate determinants of caregiving. For instance, future research studies may predict that a new intervention will not have a significant effect on distress unless it changes the person’s coping ability. Research initiatives such as these provide the evidence base for practice and uphold the goals described in the Association of Rehabilitation Nurses’ strategic plan (see www.rehabnurse.org/about/vision.html).

However, there remains much to be done in providing assistance to these family caregivers. Oftentimes, caregivers’ needs along with their ability to perform self-care are overlooked for the more immediate concerns of their care recipients. Caregivers must be seen and cared for by professionals. The following are eight general tips to help family caregivers.

1. Develop a needs list. Caregiving is made up of individual tasks; some tasks are more important than others. Caregivers can use this list to decide how to divide the tasks between family and friends and paid healthcare professionals.

2. Think teamwork. Caregivers work on a team with the care recipient in the central role. Other members of the team (family members, friends, and healthcare professionals) bring different skills and strengths, and all work toward a common goal with the caregiver directing the team.

3. Use open communication. One of caregivers’ biggest challenges is to keep open channels of communication with the person for whom they care. Caregivers need to assure care recipients that they will retain decision-making power and be a central part of all discussions or decisions to the best of their ability.

4. Be proactive. Caregivers need to focus on what needs to be done, plan carefully, and look ahead as much as possible to prevent crises.

5. Be a problem solver. Caregivers need to look for creative options that work; quickly identify the issue, find out what needs to happen, commit to the task, and ask for help from others, if needed.

6. Keep a positive attitude. Caregivers make choices. Encourage them to choose to be upbeat and use members of the team to help cope with difficult matters.

7. Know yourself. Caregivers need to recognize their strengths and weaknesses. Knowledge of self will help set boundaries and give confidence to know when to seek help. Remind caregivers to take time for themselves. 8. Gather information about community services. Assistance may come in many forms, from paid home care or home-delivered meals to help from family members and friends with everyday activities, such as transportation needs, house cleaning, or sitter services.

Remembering and integrating these tips when working with family caregivers can help them successfully meet the caring challenge. Although providing care may be difficult for these family members, caregiving may also enrich the lives of all involved.

Best wishes in caring for our unseen patients: the family caregivers.


American Society on Aging. (2003). A profile of informal caregivers. Retrieved March 12, 2009, from www.eldercare.com/modules.php?op=modload&name=CG_Resources&file=article&sid=861.

Beach, D. (1997). Family caregiving: The positive impact on adolescent relationships. The Gerontologist, 37(2), 233–238.

Buber, M. (1965). Between man and man. New York: MacMillan.

Centers for Disease Control and Prevention and the Kimberly-Clark Corporation. (2008). Assuring healthy caregiver, a public health approach to translating research into practice: The RE-AIM framework. Neenah, WI: Kimberly-Clark Corporation. Retrieved March 12, 2009, from www.cdc.gov/Aging/caregiving/index.htm.

Family Caregiver Alliance. (2009). Caregiver health. Retrieved March 12, 2009, from www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1822.

National Alliance for Caregiving and American Association of Retired Persons. (2004). Caregiving in the U.S. Retrieved April 9, 2009, from www.caregiving.org/data/04finalreport.pdf.

Pandya, S. (2005). Caregiving in the United States. Retrieved March 12, 2009, from http://assets.aarp.org/rgcenter/il/fs111_caregiving.pdf.

Pierce, L., & Lutz, B. (2009). Family caregiving. In P. Larsen & I. Lubkin (Eds.), Chronic illness: Impact and interventions (7th ed.). Sudbury, Massachusetts: Jones and Bartlett.

Pierce, L., Steiner, V., Govoni, A., Thompson, T., & Friedemann, M. (2007). Two sides to the caregiving story. Topics in Stroke Rehabilitation, 14(2), 13–20.

Watson, J. (1988). Nursing: Human science and human care. Norwalk, CT: Appleton-Century-Crofts.