Carer well-being
Carer mental health & well-being
Carers or caregivers provide a monumental level of support to people across our communities. These people support loved ones affected by many conditions ranging from Alzhiemer’s to cancer. This means it is crucial that we take care of the carers. One (informal/family) caregiver definition is:
Someone who provides broad unpaid psychological and practical support to those affected by a chronic illness/disability. This support allows the care recipient to cope better with their condition and/or experience reduced burden from its effects.
While caregivers do report many positive experiences, the physical and psychological well-being of this group is often compromised due to the stressful nature of the support they provide.
Carer well-being is a particularly important topic in chronic illness and disability. Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers (1). When asked directly, the vast majority (84%) of people say that caring has negative health effects (2). Some go on to suffer serious problems including caregiver burnout, compassion fatigue, and major mental health difficulties.
Caregiver psychological problems
We have an increasingly large amount of research available on carer well-being. From this, we know that psychological issues are among the most commonly reported difficulties (3).
An important concept here is ‘carer burden’, which refers to negative experiences that occur from providing care (4). The level of carer burden varies from person to person, with higher levels of burden being linked to:
Female carers
Living with the care receiver
Spending large amounts of time caring
Being socially isolated
Being under financial stress
Having no choice in becoming a carer (5).
Carers can experience a range of psychological difficulties. Some of the most common issues tend to be low mood and symptoms of depression (6,7), elevated levels of stress and anxiety (7,8), and lower quality of life (9). Rates of depressive and/or anxiety disorders are higher amongst adult carers when compared to the general population.
These figures do not mean carers are destined to develop such psychological issues, but this group is clearly more vulnerable.
Caregiver physical health problems
In addition to psychological difficulties, carers can experience a decline in overall physical health (9,10). Carers are at a slightly higher risk for physical health problems compared to non-caregivers (11), and over 80% of carers say their role negatively impacts their physical health (12).
Physical health problems vary and range from fatigue (9) to insomnia, headache and gastrointestinal issues (13) to name a few.
Positive caregiver experiences
Despite the physical and psychological challenges discussed above, many carers can also identify positive aspects of their experience. Positive aspects refer to the satisfaction and benefits that can come from caring (14).
Carers are often able to identify at least one positive aspect of their role (15,16). Some of the reported positive experiences include (17,18,21):
Being able to give back to someone
Knowing the person is being well cared for
improved relationships
Personal growth
An enhanced sense of meaning or purpose
Finding meaning and purpose is an experience reported across several groups of carers (1). Being able to help is a source of satisfaction for many carers (20), while having an equal or reciprocal relationship (22) is another positive outcome. Positive carer experiences facilitate coping with the stress and other health effects.
Breaking Down Barriers
Your well-being is influenced by many factors. Believing that just one ‘thing’ is the cause of a psychological difficulty is usually inaccurate and unhelpful. Attempts to improve your well-being therefore usually involves taking several factors into considerations. I could bang on here about all the things you know you should be doing already; get plenty of sleep, exercise and eat vegetables. This is all true but you know this already.
Perhaps a more useful focus comes from asking: What barriers stop you from taking better care of yourself?…and more importantly, What can you do about these barriers?
Some barriers are physical, for instance, you don’t think you have time to look after yourself. Other barriers are psychological. For example, some carers feel that it is selfish to prioritise themselves over the loved one they support.
Asking what barriers exist (and why) helps work out what might have gone wrong with previous failed attempts to take better care of yourself. These barriers need to be directly addressed, otherwise, it doesn’t matter how many times you are told to go for a walk and eat some broccoli.
It may be that you need to discuss this issue with a sensible person that you trust in order to make progress with your well-being. Having said this, here are a few questions you can ponder to get you thinking more about barriers to better self-care:
What emotions might you experience if you put more time into self-care?
Why do you think you would experience those particular emotions?
What do these emotions say about your attitude to self-care?
What would have to change in your life to result in more time given to your well-being?
How might the well-being of the person you support be negatively affected if you spent more time looking after yourself?
What would be the worse thing someone could say about you as a carer? How does that influence your self-care?
Respite care for caregivers
Psychological barriers to self-care may explain why some carers are reluctant to take respite opportunities when available. Caring for someone with a long-term condition is a marathon, not a sprint. Consider the above questions if you find it difficult to temporarily hand over caregiving responsibilities.
Summary
Carer well-being matters, both to the quality of life of the carer, and the well-being of the loved one that receives support. To cope with the huge challenges brought about by cancer, you need to be thinking of self-care strategies that are positive and sustainable over the long term. If you fall over, both you and the person you care for will find things even tougher. Thinking about barriers to self-care can be a useful way to better understand your current approach to your health, and how you can improve it.
This blog post is a necessarily simplified version of carer well-being issues and barriers to better self-care. But I hope it gives you some useful points to think about.
References
1. Carers UK. (2004). In poor health: The impact of caring on health. London: Carers UK. Accessed on 16/01/18 from http://static.carers.org/files/in-poor-health-carers-uk-report-1674.pdf
2. Carers UK. (2013). The state of caring 2013. London: Carers UK. Access on 16/01/18 from https://www.carersuk.org/for-professionals/policy/policy-library/the-state-of-caring-2013
3. Stenberg, U., Ruland, C. M., & Miaskowski, C. (2010). Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology, 19, 1013-1025.
4. Nijboer, C., Triemstra, M., Tempelaar, R., Mulder, M., Sanderman, R., & van den Bos, G. A. M. (2000). Patterns of caregiver experiences among partners of cancer patients. The Gerontologist, 40(6), 738-746. doi: 10.1093/geront/40.6.738
5. Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver burden: A clinical review. JAMA, 311(10). doi: 10.1001/jama.2014.304
6. Braun, M., Mikulincer, M., Rydall, A., Walsh, A., & Rodin, G. (2007). Hidden morbidity in cancer: Spouse caregivers. Journal of Clinical Oncology, 25(30), 4829-4834
7. Easter, G., Sharpe, L., Hunt, C. J. (2015). Systematic review and meta-analysis of anxious and depressive symptoms in caregivers of children with asthma. Journal of Pediatric Psychology, 40(7), 623-632.
8. Pinquart, M. (2017). Parenting stress in caregivers of children with chronic physical condition- a meta‐analysis. Stress and Health
9. Li, Q. P., Mak, Y.W., & Loke, A. Y. (2013). Spouses’ experience of caregiving for cancer patients: A literature review. International Nursing Review, 60, 178-187.
10. Shaffer, K. M., Kim, Y., & Carver, C. S. (2016). Physical and mental health trajectories of cancer patients and caregivers across the year post-diagnosis: a dyadic investigation. Psychology & Health, 31(6), 655-674. doi: 10.1080/08870446.2015.1131826
11. Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin, 129(6), 946-972.
12. Carers UK. (2012). In sickness and in health. London: Carers UK. Accessed on 11/11/17 from https://www.carersuk.org/for-professionals/policy/policy-library/in-sickness-and-in-health
13. Jassem, J., Penrod, J. R., Goren, A., & Gilloteau, I. (2015). Caring for relatives with lung cancer in Europe: an evaluation of caregivers’ experience. Quality of Life Research, 24, 2843-2852.
14. Hilgerman, M. M., Allen, R. S., DeCoster, J., & Burgio, L. D. (2007). Positive aspects of caregiving as a moderator of treatment outcome over 12 months. Psychology and Aging, 22, 361-371.
15. Cohen, C. A., Colantonio, A., & Vernich, L. (2002). Positive aspects of caregiving: Rounding out the caregiver experience. International Journal of Geriatric Psychiatry, 17, 184-188.
16. The Associated Press-NORC Centre for Public Affairs Research. (2014). Long-term care in
America: Expectations and reality. Accessed on 19/01/18 from http://www.longtermcarepoll.org/PDFs/LTC%202014/AP-NORC-Long-Term%20Care%20in%20America_FINAL%20WEB.pdf
17. American Psychological Association (APA, 2018). Positive aspects of caregiving. Accessed on 19/01/18 from http://www.apa.org/pi/about/publications/caregivers/faq/positive-aspects.aspx
18. LeSure, P., & Chongkham-ang, S. (2015). The experience of caregivers living with cancer patients: A systematic review and meta-synthesis. Journal of Personalized Medicine, 5, 406-439. doi: 10.3390/jpm5040406
19. Spendelow, J. S., Adam, L., & Fairhurst, B. (2017). Coping and adjustment in informal male carers: A systematic review of qualitative studies. Psychology of Men & Masculinity, 18(2), 134-143. doi: 10.1037/men0000049
20. Buchanan, R. J., Radin, D., Chakravorty, B. J., & Tyry, T. (2009). Informal care giving to more disabled people with multiple sclerosis. Disability and Rehabilitation, 31(15), 1244-1256.
21. Ribeiro, O., & Paúl, C. (2008). Older male carers and the positive aspects of care. Ageing and Society, 28, 165–183. doi: 10.1017/S0144686X07006460
22. Yu, D. S. F., Cheng, S-T., & Wang, J. (2018). Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. International Journal of Nursing Studies, 79, 1-26. doi: 10.1016/j.ijnurstu.2017.10.008