Assessment of Caregiver Burden in Families of Persons With Multiple Sclerosis

Marijean Buhse, PhD RN NP-C


J Neurosci Nurs. 2008;40(1):25-31. 

In This Article

Assessment of Caregiver Burden

Caregivers have been described as hidden patients (Andolsek et al., 1988) and often bear an enormous emotional burden for their work. Although many enjoy a profound sense of privilege and derive deep satisfaction in this role, sadness, guilt, anger, resentment, and a sense of inadequacy are also common reactions (Rabow, Hauser, & Adams, 2004). Financial strain, disease uncertainty, disrupted usual activities, and continuous caregiving contribute to significant mental health illnesses, including anxiety and depression. A number of studies document that as many as half of all caregivers experience clinical depression, with 61% of intense family caregivers (those providing at least 21 hours of care per week) experiencing depression (Haley, LaMonde, Han, Narramore, & Schonwetter, 2001; Pochard et al., 2001; Rabow et al.). Wives who are caregivers seem to be more likely to experience depression than caregiver husbands (Cannuscio et al., 2002). Because of the hidden nature of emotional strain of caring for individuals with MS, assessing caregiver burden in families of patients with MS is of primary importance.

Early recognition of caregiver burden by healthcare providers is important in determining appropriate interventions. The risk and degree of caregiver burden can be assessed by interview and formally developed tools. Listening to the patient and caregiver and noticing changes in behavior of the caregiver can help identify those who are under significant burden or at risk for burden (Kasuya et al., 2000). One example of a brief and reliable instrument for assessing caregiver burden is the Burden Interview (Zarit et al., 1980). The Burden Interview consists of a 21-item Likert-type scale questionnaire, which takes about 10 minutes to complete, and measures the extent to which the caregivers perceive their emotional, physical, social, and financial status as a result of caring for the patient. Although the tool was not developed to be used in a clinical situation, it does give the provider a good idea of the extent of burden for a caregiver (Fig 1).

Burden Interview

Assessment of caregiver burden should begin by asking the patient's permission for the provider to speak to the caregiver. To make sure the caregiver feels comfortable enough to answer honestly, the discussion should be private, without the patient in attendance. Ask questions to detect the areas that concern the caregiver the most. Simple, nonjudgmental questions are best, such as, "What is your biggest concern about caring for your spouse?" and "Is there one thing that is the most difficult for you to do when caring for your spouse?" Caregivers may not initially talk about the financial issues that result from missed workdays and added expenses, so it is important to ask about them. Also, inquire about the social support network of the caregiver, such as family and friends, because social isolation has been associated with increased burden. Monitor caregivers for signs and symptoms of depression. Ask whether the caregiver has any physical or emotional limitations that might affect his or her ability to perform caregiving duties because caregivers may neglect their own physical health to provide for their loved ones (Kasuya et al., 2000). Finally, find out what the caregiver does to relieve stress and tension to determine their coping strategies.

One of the most common themes in studies of caregiver burden in MS is the caregiver's lack of knowledge (Courts et al., 2005; Gulick, 1996). Caregivers need the knowledge and skills pertinent to the care they are providing their loved ones. By educating the caregivers about managing common symptoms, relapses, medication use and side-effect management, upcoming research, proper techniques, and resources available, nurses can help caregivers enhance the care they provide and increase their feelings of competence and satisfaction (Kasuya et al., 2000). See Figure 2 for informational resources.

Caregiver Resources

Caregivers are at risk for developing stress because of their caregiving responsibilities. They may need support and assistance in providing physical care and become increasingly stressed without it (O'Brien, 1993). Nurses must be attentive to signs of increasing stress and should ask questions such as, "Do you feel that you are currently under a lot of stress?" and "What is the most stressful for you?" Helping the caregiver cope with increasing stress is essential to his or her health. Strategies for helping a caregiver alleviate stress are found in Figure 3.

Strategies for Alleviating Caregiver Stress

Remind caregivers of the importance of respite and caring for themselves. The most common reason cited for being unable to continue caring for a person with MS is failing health of the caregiver (Wollin, Reiher, Spencer, Madl, & Nutter, 1999). Avoiding social isolation is also important because isolation increases depression and caregiver burden (Braitwaite, 1996). Participating in support groups, seeing friends, renewing church ties, or pursuing hobbies can give caregivers respite and a sense of social support.

Finally, it is important for caregivers to maintain an identity outside the caregiver role to avert the conflict and loss over changing roles between the caregiver and the partner. Discuss with caregivers how to monitor their own well-being and teach them the warning signs of burden, which include increased sadness or depression, changes in sleep patterns, increased or decreased appetite, excessive worry and anxiety, and increased use of alcohol or prescription medications (Kasuya et al., 2000).


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