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What are the Psychological Impacts of Extended Caregiving?

Written by John C.

 

There are an estimated 6.5 million adults within the UK alone who are classified as carers (Carers UK, 2015) , with rates expected to rise to 9 million individuals by 2037 (Ibid.). Carers are individuals who take on the day to day support needs of family members who are suffering from chronic physical or mental health problems (Baguley and Sprung, 2017), and are thought to save the  economy around £132 billion every year, equating to an average of £19,336 per year, per carer (Carers UK, 2015). Whereas approximately 3 million carers combine employment with providing care, Care UK (2015) estimate that 20% of carers are forced to abandon work altogether due to the high demands placed on them, both physically and emotionally. The provision of long term caregiving has been linked to increased health problems (Wolff et al., 2016), increased social isolation (Hayes et al., 2015) and decreased quality of life (Jeong et al., 2015). People make become caregivers for loved ones with a variety of differing illnesses and health problems, ranging from physical problems, to mental health issues, to the effects of ageing (Neal and Hammer, 2017). For the purposes of this essay, the experiences of caregivers who look after those with psychosis shall be examined. Mental health problems largely lack parity with their physical health counterparts (McGuire, 2016), and thus carers for those with mental ill health may find themselves particularly isolated or unsure of their rights (Clement et al., 2015). This essay aims to review the current literature to examine the experiences of those who provide extended caregiving within this often overlooked population.

 

As with many forms of caregiving, caring for those with psychosis is a challenging and emotionally draining experience (Onwumere et al., 2017). A recent systematic review of the psychological factors involved in caregiver distress within this population identified that high levels of distress were strongly related to psychological mechanisms such as emotional over-involvement and avoidant coping behaviours (Jansen, Gleeson and Cotton, 2015). This review drew upon the results of n = 13 studies to identify these relationships, and the authors argue that via the development of an enhanced understanding of the psychological factors involved in the development of high stress levels within caregivers, long term prevention of such distress would be possible. However, although the review by Jansen et al. (2015) was well conducted and transparently reported in conjunction with PRISMA principles, the quality of the evidence reviewed makes a coherent conclusion difficult to make. There are relatively few studies included in the review, and many of these have considerable methodological issues, such as statistically underpowered sample sizes, poor control of potential confounding variables, and a lack of homogeneity with regard to the outcome measures utilised across the included studies (Ibid.). These methodological shortcomings therefore make long term prevention of distress in this sub-section of caregivers a goal that is currently a long way from being achieved.

 

Regardless of the exact mechanisms of high levels of distress in caregivers for the with psychosis, it is nevertheless abundantly clear that such distress is harmful to health. For example, Poon et al. (2018) examined both the physical and mental health of carers of those with first episode psychosis, within a sample of n = 42 Australian carers. The findings of this study not only indicated that 24% of carers were exhibiting high levels of psychological distress, but also stated that 79% of carers were at risk of developing physical health problems, including 39% who were at high risk of developing diabetes (Ibid.). Although this study is comprised of a small sample, which is as a result statistically underpowered and may lack generalisability, it is one of the sole studies in this field to examine both physical and mental health markers of the strain that results from providing care for those with psychosis. The study by Poon et al. (2018) exclusively examined those caring for loved ones with first episode psychosis; other studies, such as the work of Poon et al. (2017) and Young et al. (2018) examined the impact of extended caregiving for those with psychosis. Poon et al. (2017) examined the changes in n = 98 caregivers’ wellbeing over the course of a 12-month data collection period. Their findings indicated that poor psychological outcomes were constant across this time period - with 29% experiencing social isolation, 38% intense psychological distress, and an average quality of life that is lower than population norms - whilst perceptions of physical wellbeing worsened over time (Ibid.). Furthermore,  poorer scores across these variables were associated with caring for those with increased severity of psychosis. Young et al. (2018) conducted a qualitative synthesis of the literature, and stated that based upon the evidence, the effects on caregivers gradually increase as time and illness severity increase, and that caregivers actively experience a sense of loss, not just of their loved one, but for their old (pre-caregiving) life. Furthermore, they state that caregivers struggle to access support services for themselves, and need greater support for their own mental and physical wellbeing (Ibid.). Although the review by Young et al. (2018), like that conducted by Jansen et al. (2015) identified a high proportion of studies that had methodological flaws, it nevertheless provides nascent evidence that caregivers for those with psychosis warrant further help, support, and resources provided to them in order to prevent the high levels of distress associated with the role.

 

There have been a number of preliminary studies that have examined how to support carers for those with psychosis, and although the current state of the literature with regards to this area is in its early stages (Onwumere and Kuipers, 2017), it is nevertheless heartening that clinicians and academics are focussing resources on this area. For example, Jansen et al. (2017) used cross-sectional methodology, recruiting n = 101 caregivers, to examine the role of psychological flexibility in experiences of  distress. Their findings linked high flexibility - in other words, acceptance of the situation - with lower levels of distress, and although the methodology used cannot as a result imply causation between these variables (Sedgwick, 2014), this represents an early stage in the evidence base, one that future studies may be able to progress into a clinically meaningful intervention. The most common form of intervention currently in the literature is the provision of group support for carers of those with psychosis, with studies by Sadath et al. (2017) and Mentis et al. (2015) both being examples of this. Both Sadath et al. (2017) and Mentis et al. (2015) report that the use of such support groups is related with improvements in the expressed emotion of caregivers, and alleviate both the psychological and physical stresses of their caregiving role. Perhaps crucially too, they provide social contacts which may help prevent social isolation. However, the evidence with regard to the efficacy of group support for this population is not at this point sufficiently strong to make broad inferences from; there is to date a lack of shared outcome measures or standardised format or duration of group support. More research is needed in this area in the coming years.

 

In summary, caregiving for those with psychosis is a role that is characterised by high levels of distress, which in turn develop into increased risk of poor mental and physical health, and a marked reduction in quality of life. Such difficulties persist and worsen as those in their care become more chronic in presentation. Although this is an area that has been typically overlooked in the past, an increased academic focus on the ways to best support carers in this area provides hope for the future, and future research studies may provide the evidence needed to provide optimal support for those in this most challenging of situations.

 

References

Baguley, F. and Sprung, S., 2017. Carers: the keystone of communities and families. In A Textbook of Community Nursing (pp. 179-197). Routledge.

Carers UK, 2015. Facts & figures.

Clement, S., Schauman, O., Graham, T., Maggioni, F., Evans-Lacko, S., Bezborodovs, N., Morgan, C., Rüsch, N., Brown, J.S.L. and Thornicroft, G., 2015. What is the impact of mental health-related stigma on help-seeking? A systematic review of quantitative and qualitative studies. Psychological medicine, 45(1), pp.11-27.

Hayes, L., Hawthorne, G., Farhall, J., O’Hanlon, B. and Harvey, C., 2015. Quality of life and social isolation among caregivers of adults with schizophrenia: Policy and outcomes. Community mental health journal, 51(5), pp.591-597.

Jansen, J.E., Gleeson, J. and Cotton, S., 2015. Towards a better understanding of caregiver distress in early psychosis: a systematic review of the psychological factors involved. Clinical Psychology Review, 35, pp.56-66.

Jansen, J.E., Haahr, U.H., Lyse, H.G., Pedersen, M.B., Trauelsen, A.M. and Simonsen, E., 2017. Psychological Flexibility as a Buffer against Caregiver Distress in Families with Psychosis. Frontiers in psychology, 8, p.1625.

Jeong, Y.G., Jeong, Y.J., Kim, W.C. and Kim, J.S., 2015. The mediating effect of caregiver burden on the caregivers’ quality of life. Journal of physical therapy science, 27(5), pp.1543-1547.

McGuire, T.G., 2016. Achieving mental health care parity might require changes in payments and competition. Health Affairs, 35(6), pp.1029-1035.

Mentis, M., Messinis, L., Kotrotsiou, E., Angelopoulos, N.V., Marneras, C., Papathanasopoulos, P. and Dardiotis, E., 2015. Efficacy of a support group intervention on psychopathological characteristics among caregivers of psychotic patients. International Journal of Social Psychiatry, 61(4), pp.373-378.

Neal, M.B. and Hammer, L.B., 2017. Working couples caring for children and aging parents: Effects on work and well-being. Psychology Press.

Onwumere, J. and Kuipers, E., 2017. Caregiving roles: when will they be routinely recognized and supported?.

Onwumere, J., Lotey, G., Schulz, J., James, G., Afsharzadegan, R., Harvey, R., Chu Man, L., Kuipers, E. and Raune, D., 2017. Burnout in early course psychosis caregivers: the role of illness beliefs and coping styles. Early intervention in psychiatry, 11(3), pp.237-243.

Poon, A.W.C., Curtis, J., Ward, P., Loneragan, C. and Lappin, J., 2018. Physical and psychological health of carers of young people with first episode psychosis. Australasian Psychiatry, 26(2), pp.184-188.

Poon, A.W.C., Harvey, C., Mackinnon, A. and Joubert, L., 2017. A longitudinal population-based study of carers of people with psychosis. Epidemiology and psychiatric sciences, 26(3), pp.265-275.

Sadath, A., Muralidhar, D., Varambally, S. and Gangadhar, B.N., 2017. Does group intervention have benefits on expressed emotion and social support in carers of persons with first episode psychosis?. Social Work in Mental Health, 15(5), pp.524-537.

Sedgwick, P., 2014. Cross sectional studies: advantages and disadvantages. BMJ: British Medical Journal (Online), 348.

Wolff, J.L., Spillman, B.C., Freedman, V.A. and Kasper, J.D., 2016. A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Internal Medicine, 176(3), pp.372-379.

Young, L., Murata, L., McPherson, C., Jacob, J.D. and Vandyk, A.D., 2018. Exploring the Experiences of Parent Caregivers of Adult Children With Schizophrenia: A Systematic Review. Archives of Psychiatric Nursing.

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