Assessing the health of family (the term family is used here very broadly to cover any partnership [spouse, child, lover and friend] within which consistent care is provided for the chronically ill individual), caregivers of people with chronic illnesses and ultimately intervening to support them and maintain their health status are an issue that will prove to be of utmost importance in health care over the next decade. Chronic illnesses, as a group, make up the largest health problem facing the western world (Mast 1995). In fact, Miller (1992) described the chronic illness as a phenomenon of the 20th century. As more diseases are controlled through medical intervention, there is an increase in survival; there is also a consequential increase in disability and a corresponding need for long-term care provision. No health system is able to sustain the cost of providing ongoing care for the chronically ill by qualified health professionals, so the burden of care falls on the patient and his/her family.
The burden of care is different for family caregivers compared with formal caregivers such as nurses, doctors and other health professionals; the family caregiver is more likely to have an emotional investment in the patient's well-being and faces the loss of an active spouse or parent and the consequent changes in relationship and role as well as the increased care demands as the patient becomes more dependent over time (Kinsella et al. 1998, Meyers & Grey 2001). Whereas, for health professionals, caregiving provides work that is paid and is indeed what they are there for, family caregivers gain additional workload, which increases financial strain on top of the physical and emotional demands. Whereas health professionals can go home at the end of the day and can anticipate things to do and enjoy which are different from work activities, the family caregiver has no such respite from caregiving tasks and demands.
Furthermore, family caregiving is as complex as the families that are involved. The physical health of family members is only one aspect of the jigsaw in ensuring the quality of care for the chronically ill patient. Family function (or dysfunction) is also an important factor, which is intimately related to the mental health of family members along with additional financial, time and leisure constraints (Kinsella et al. 1998).
An unspoken assumption of the health system's shifting of the cost and burden of care into the community is that the family caregivers themselves are healthy and able to provide the care. In fact, this assumption is apparent in Schneider's research where the author states that the caregivers are a non-medical population. This may not in fact be the case. Caregivers are very often elders themselves providing care for their older spouse or middle-aged children providing care for ageing parents. In fact, Desbiens et al. (2001), in a study of more than 1200 caregivers, found the typical family caregiver to be female and over 50 years old. In Schneider's research, the average age of the caregivers was 62.2 years; there was no indication as to the sex of the respondents. Given the age of these caregivers, it is likely that they would have their own diagnoses of chronic illness and consequently some related fatigue (Toseland et al. 1995). The ability to differentiate the fatigue associated with caregiving and the fatigue related to the caregiver's own chronic illnesses is not easy, nor is it necessarily required, but one cannot assume that all fatigue is related to caregiving alone.
As this is a methodological paper focusing on the psychometrics on the Fatigue Severity Scale (FSS), Schneider does not include a full description of either the sample demographics or their responses on the fatigue questionnaire. Including data on any chronic illnesses of the caregiver may be a better demographic predictor of fatigue than simply age. Moreover, previous research has established a relationship between the length of time that the family caregiver has been providing care and caregiver burden (Emanuel et al. 1999, Soothill et al. 2001). This also could have helped explain some of the variance in fatigue in caregivers of dialysis patients as the relationship between burden and fatigue would seem logical.
Fatigue is a response to stress whether mental, emotional or physical and Schneider correctly indicates that fatigue is recognized as a multidimensional phenomenon. In the context of caregiving, it may be too early to assume that caregiver fatigue is predominantly physical as that may limit potential interventions to support physical needs more than emotional and financial needs or simply time to do other things. It is interesting to note in a recent study that the mortality rates in older caregivers who report that they are distressed are 63% higher than those not feeling stressed (Shultz & Beach 1999). This indicates the powerful influence of psychology on the physical health of caregivers.
It should be remembered, however, that there are positive benefits to caregiving, particularly when the patient is in end-stage disease. Many caregivers express a preference for home care suggesting that it is more satisfying and rewarding; that family ties are better maintained; that quality of life for the patient is better; and that feelings of guilt are reduced in family members particularly after the death of the patient (Kinsella et al. 1998, Kristjanson & Ashcroft 1994, Meyers & Grey 2001, Payne et al. 1999).
Fatigue, along with caregiver strain or burden and the appraisal of stressors related to the caregiving role, will be of primary importance and health professionals become part of a support system for the family and take the role of coaching the caregiver rather than providing direct care. Thus, launching from this contribution to research, three questions arise for future consideration.
- •How can we maintain or promote health in family caregivers?;
- •How can we ensure the quality of care of chronically ill individuals when care is provided by family caregivers?;
- •Is it fair and just to expect frail older women to absorb the burdens of caregiving, sacrificing their health in an effort to save the state costs?