Impact of disbailities on family carers: Example from stroke
The physical, psychological, social and financial impacts of stroke have been shown to have a significant effect on family carers. These affect family carers’ physical health: for example, back pain and weight change can occur (Fredman and Daly 1997; Henwood 1998) and can cause related psychological problems such as stress, depression and lack of sleep (R Anderson 1992; G Anderson et al 1995; Fredman and Daly 1997). Related social problems can include role changes within the family, the loss of companionship and social isolation (Periard and Ames 1993; Jongbloed, Stanton and Fousek; Jongbloed 1994). Finally, financial impact such as loss or change of employment and extra expenses can severely affect relatives (G Anderson et al 1995; Kelson, Ford and Rigge 1998).
Many researchers have highlighted the importance of identifying the impact of stroke on carers. Evans, Bishop and Haselkorn (1991) suggested that survivors are influenced and affected by carers’ physical and mental health as where these are poor the survivor may receive less care, possibly affecting the rehabilitation outcome.
Impact of stroke on carers’ physical health: Understanding the factors impacting on family carers may help to prevent health decline in survivors and their carers (Henwood 1998). Although it has been suggested that the physical health of carers is as important as their mental health (Han and Haley 1999), there are few studies of the impact of stroke on family carers’ physical health. In a study of carers of 510 Alzheimer’s disease patients Wright et al (1999) found that their physical health appeared similar to that of the wider population. The carers’ average age was 57 and there was no evidence that the carers received more medical services or rated their health worse than random community samples. However, 47 per cent of the carers did not live with their relatives and thus possibly were not continually occupied with them. In contrast, Carnwath and Johnson (1987) found that family carers had more physical symptoms than a control group. Their physical deterioration could be explained by the fact that all family carers were the spouses of stroke survivors and may have been more involved in care than other family carers such as children, relatives and friends. Another study looked at weight change in family carers (Fredman and Daly 1997). Data were collected from 200 family carers using structured face-to-face interviews within one month of their relatives being discharged from hospital. The mean age of the carers was 61 plus or minus 15.3 years; 71 per cent were female and 50 per cent were spouses. Fredman and Daly found that 19 per cent had gained weight and 11 per cent lost weight and that 7.5 per cent of the carers reported significant weight change correlated with stress. However, because of the study design the findings should perhaps be treated with caution as the eligibility criteria for the carers were not clearly defined and the weight was self-reported and may not have been the carers’ actual weight. Moreover, no information was given as to whether this weight change was intentional or due to any changes in dietary habits and physical activity.
Psychological impact of stroke on family carers: Over the past decade a growing number of researchers have focused on family carers’ stress following stroke. A common experience among carers is depression (Dennis et al 1988; Young and Forster 1992), though the incidence varies from 18 to 61 per cent of the carers (Morrison 1999). A study by Bugge, Alexander and Hagen (1999) revealed that 37 per cent of family carers experienced considerable stress six months after stroke. In another study, one-fifth of family carers still found themselves under strain five years after their spouse’s strokes (Wilkinson et al 1997). Anderson, Linto and Stewart-Wynne (1995) studied a group of stroke survivors with a residual disability one year after stroke and found that 55 per cent of their family carers showed evidence of emotional distress.
A number of factors explain the stress experienced by family carers. A few studies have suggested that disablement and cognitive deficits following stroke have an adverse effect on marital relationships and family adjustment (SE Williams and Freer 1986). Family carers are more likely to become depressed if the patient is severely dependent (Dennis et al 1988). It has also been argued that it is the behavioural changes occurring in the patient rather than the physical impairment which contributes to family carers’ ill-health (Anderson, Linto and Stewart-Wynne 1995) and those caring for depressed stroke survivors have found caring to be particularly stressful (Addington-Hall et al 1998).