Assessment of Caregiver Burden in Families of Persons With Multiple Sclerosis

Marijean Buhse, PhD RN NP-C

Disclosures

J Neurosci Nurs. 2008;40(1):25-31. 

In This Article

Caregiver Burden

Caregiver burden has been defined as the type of stress or strain that caregivers experience related to the problems and challenges they face as a result of the status of the care recipient. It is the state resulting from necessary caring tasks or restrictions that cause discomfort for the caregiver (Zarit, Reever, & Bach-Peterson, 1980). Caregiver burden has also been defined as the strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member (Stucki & Mulvey, 2000). It is a multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the caregiving experience. Caregiver burden has been described as both observable and perceived. Objective burden is an observable, concrete, and tangible cost to the caregiver for taking care of the recipient. Subjective burden refers to the perceived costs, such as the extent to which the caregiver is bothered by performing these tasks and the positive or negative feelings experienced while giving care (Jones, 1996). The caregiver's perception of the burden, rather than the perception of other family members or healthcare providers, determines the impact on his or her life (Kasuya, Polgar-Bailey, & Takeuchi, 2000). The level of perceived burden has been correlated with higher risks of depression and lower quality of life for caregivers of MS patients (Aronson, 1997).

The unpredictability of MS affects the caregiver in a way unlike other chronic diseases. Caregivers are unable to predict the onset of a relapse, the progression of the disease, or even the functional ability of the patient over the course of a day (McKeown et al., 2004). Not only do physical symptoms of the patient increase caregiver burden, but the psychological and emotional aspects of MS also present challenges for patients and family members (Coleman, Rath, & Carey, 2001); many patients can be emotionally labile and may be depressed because of the symptoms. The care recipient's problems with everyday memory and activities of daily living have been shown to be predict caregiver burden (Chipchase & Lincoln, 2001).

Caregiver burden can be increased when the caregiver believes that the personality of the person with MS has changed. Changing personal plans or finances because of caregiving are other factors contributing to the burden (Chipchase & Lincoln, 2001). Eighty percent of MS caregivers reported that the demands placed on their time interfered with obligations to family and friends or with their career (O'Brien, 1993). The perceived burden may reflect feelings of conflict and loss because of changing roles within the relationship (O'Brien, Wineman, & Nelson, 1995). The amount of care provided is not necessarily related to caregiver burden. Limited participation in usual activities or interests that results from caregiving has been reported to increase emotional distress among caregivers (Cameron, Franche, Cheung, & Stewart, 2002).

Profound fatigue, sensory symptoms, and vision loss are common among MS patients. The most difficult invisible symptom for the caregiver to understand is fatigue. MS-related fatigue is very different from regular fatigue because it generally occurs daily and can occur in the morning despite a good night's sleep. It can worsen during the day and is likely to interfere with normal activities (National MS Society, n.d.). The invisible and unpredictable nature of fatigue can make it difficult for the caregiver to understand and appreciate its intensity.

For spousal caregivers, a sense of loss permeates their lives. The constant change in disease progression and associated cognitive dysfunction of the MS patient contributes to the sense of loss. Spouses feel that they have lost their partner and their sense of self, companionship, support, income, and lifestyle (Cheung & Hocking, 2004). Courts, Newton, and McNeal (2005) found differences in the feelings of caregivers of MS patients occurred by gender. Men were angry at systems, such as difficulties with handicapped parking and the accessibility of aisles in stores for their wheelchair-bound wives. Women shared their pain and spoke of emotional needs. Still, both genders admitted that they suffered in silence. The need for information about the disease and support from families, outside agencies, and healthcare providers was expressed.

Caring for the individual with MS causes unique challenges for the caregiver. Because MS develops in young adulthood, the initial impact can begin during the years of college education, marriage, career development, and family life. It is often diagnosed when married partners are assuming social and economic responsibilities (O'Brien, 1993). As the individual's disease progresses and the disabilities become more permanent, the person's need for personal aid increases (Kersten et al., 2000). Many individuals rely upon some level of assistance from their partner to remain active and involved in their home. If a partner is responsible for personal care of the patient, the partner's risk of burden increases. Neglect of the patient can become an issue if the partner is expected to remain employed, care for the children, and maintain the household (Holland & Northrup, 2006). The chronic, progressive, and unpredictable nature of MS may result in long-term demands and increased caregiver burden. Caregivers need support for themselves, and they want support for their partners. They often feel overwhelmed, ignored, and neglected, and this adds to their feeling of burden (Courts et al., 2005).

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