Do families experience a moral injury when their relative moves into a care home?
Lots of people live in care homes – as many as 360,000 people in 2022. The large majority of people living in care homes move in during later stages of their lives. Approximately 82% of people living in a care home are aged 65+ years old and approximately 10% are aged 85+ years old1. People move into a care home for a variety of reasons. Most often, a move is associated with a change in a person’s health, well-being or cognition.
Care homes provide around-the-clock care and support. Therefore, a move can represent an opportunity to build new relationships and to live in a communal environment, with increased occasions to socialise. Moving into a care home can also reduce the demands related to taking care of oneself in one’s own home, such as cooking and cleaning. Despite this, research suggests that a move into a care home can be viewed negatively. Therefore, whilst some people choose to move into a care home, many people would prefer to live in their own home, meaning a move can represent a ‘last resort’, following a long period of difficulty at home2.
A move into a care home may, in part, be influenced by whether family members and friends can provide informal care at home. However, even when families are providing substantial amounts of support, there may come a time when a care home is a more suitable option. Following a move into a care home, families may remain involved in caregiving, contributing to decisions about care and treatment. Some take on the role of “spokesperson”, advocating for their relative’s best interests, especially when the person has dementia or cognitive impairment3. However, families can find decision-making difficult if they are unsure of their relative’s wishes4.
Researching ways to better support families of care home residents
With this in mind, we set out to explore potential ways to better support families of people living in care homes to be involved in decision-making. In doing so, we interviewed 29 people who supported someone with a cognitive impairment who lived in a care home5. Families talked about the increasing difficulties they faced whilst trying to support the person at home. Even when supported by domiciliary care, many described reaching a “breaking point”, when caring for the person at home was no longer a viable option. Some families described a sense of sadness as they slowly realised that what they wanted (to support their relative to live at home) was no longer a viable option:
“I realised that I may well want Mum to be at home, but actually she wasn’t safe. I remember crying because I was struggling.”
Once the person had moved into the care home, families talked positively about being able to “step back”, “take a less central role” and “be family again”. However, even when families were happy with the care provided, some felt a deep sense of guilt and questioned themselves about whether they could have done anything more to support the person to live at home. This had a significant impact on their mental health and well-being.
“I didn’t want to put him in there… I still think is there anything I could have done? I eventually had counselling – the guilt was getting the better of me and I just wanted to cry all of the time.”
This sense of guilt could relate to conversations families had prior to the person becoming unwell, at a time both the older person and their family member did not anticipate future health and care needs.
“This care home it was fantastic, but I had always said I would never, ever put Dad into a care home.”
Furthermore, the sense of guilt could also be related to cultural norms surrounding caring for family members, even when such promises were not made explicitly.
“In our culture, a child is supposed to look after their parents. It’s looking after, it’s not caring – it’s my duty.”
Does the distress experienced by families represent a form of moral injury?
Given that many family members talked about the distress and guilt they experienced at having to “put” their family member into a care home when they felt they “should” have been providing care at home, it may be useful to turn to the concept of ‘moral injury’ to better understand family members’ experiences. The term moral injury describes a deep sense of distress people feel when actions have been taken that transgress and/or contradict their moral values, beliefs or sense of what is ‘right’ and ‘wrong’. Moral injury can occur when people carry out actions themselves – for example when a family member decides their relative can no longer cope at home and therefore needs to live in a care home. Moral injury can also occur when people witness or fail to prevent the actions of others6 – for example, when health and social care professionals decide that a care home is the most appropriate place of care.
Moral injury can lead people to experience emotional symptoms (such as persistent low mood and stress), spiritual symptoms (such as questioning one’s own beliefs and place in the world) and physical symptoms (such as changes in appetite and sleep patterns). Research has explored instances of moral injury across a range of health and social care professionals, including nurses7 and care home staff8.The term has also been used to understand the experiences of parents whose children live in out-of-home care9. However, to date, this term has not been used by researchers interested in the experiences of family members of people living in long-term care settings, such as care homes.
Implications for research and practice
Conceptualising the distress that families experience as a form of ‘moral injury’ could have important implications for research and practice. For example, it may lead researchers to study whether particular personal characteristics (such as age and gender), or particular experiences may influence the likelihood that someone may experience moral injury, to help identify people who are most at risk of experiencing moral injury related distress. It may also lead researchers to test or adapt current techniques used to treat moral injury. This might include various types of therapy such as Adaptive Disclosure Therapy or Acceptance and Commitment Therapy. Using the term ‘moral injury’ may also provide people experiencing distress with a shared language that they can use to discuss and understand their feelings. Therefore, whilst not all families of people living in care homes may experience distress, for those who do, conceptualising this distress as a form of moral injury may provide a new lens through which to understand and better and support families in the future.
About the author
Dr Fawn Harrad-Hyde is a LOROS Research Associate at the University of Leicester, with an interest in care home related research. The research underpinning this blog was completed with Dr Linda Birt and Prof Christina Faull through the LOROS Centre for Excellence. Fawn cared for her Nan, who lived with dementia and spent the final year of her life in a care home. In 2021 Fawn completed her PhD, which explored the ways care home staff decide whether (or not) to transfer residents to hospital. Fawn’s current work is supported by LOROS Centre for Excellence and by a Mildred Blaxter Fellowship from the Foundation for the Sociology of Health and Illness.
References
- Office for National Statistics (2021). ‘Older people living in care homes in 2021 and changes since 2011’. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/ageing/articles/olderpeoplelivingincarehomesin2021andchangessince2011/2023-10-09#cite-this-article. Accessed: 23rd January 2024
- Samsi, K., Cole, L., & Manthorpe, J. (2022). ‘The time has come’: reflections on the ‘tipping point’ in deciding on a care home move. Aging & mental health, 26(9), 1855–1861. https://doi.org/10.1080/13607863.2021.1947963
- Seiger-Cronfalk, B., Ternestedt, B.M., & Norberg, A.M. (2017) ‘Being a close family member of a person with dementia living in a nursing home’, Journal of Clinical Nursing, 26(21-22), 3519-3528. https://doi.org/10.1111/jocn.13718
- Carter, G., McLaughlin, D., George Kernohan, W., Hudson, P., Clarke, M., Froggatt, K., Passmore, P., & Brazil, K. (2018). The experiences and preparedness of family carers for best interest decision‐making of a relative living with advanced dementia: a qualitative study. Journal of Advanced Nursing, 74(7), 1595-1604. https://doi.org/10.1111/jan.13576
- Harrad-Hyde, F., Jones, G., Agarwal, S., Faull, C., & Birt, L. (2024) ‘Could peer-mentors support families of care home residents to prepare for deterioration and end-of-life? An interview study with families and care home staff.’, Health and Social Care in the Community, 2024, 6768469. https://doi.org/10.1155/2024/6768469
- Litz, B., Stein, N., Delaney, E., Lebowitz, L., Nash, W., Silva, C., & Maguen, S. (2009). ‘Moral injury and moral repair in war veterans: A preliminary model and intervention strategy’, Clinical Psychology Review, 29(8), 695–706. https://doi.org/10.1016/j.cpr.2009.07.003
- Allen, D. (2023). ‘What is moral injury and how does it affect nurses?’, Emergency Nurse, 31(3), 10-11. https://doi:10.7748/en.31.3.10.s4
- Laher, Z., Robertson, N., Harrad-Hyde, F., & Jones, C. R. (2022). Prevalence, Predictors, and Experience of Moral Suffering in Nursing and Care Home Staff during the COVID-19 Pandemic: A Mixed-Methods Systematic Review’. International journal of environmental research and public health, 19(15), 9593. https://doi.org/10.3390/ijerph19159593
- Wissö, T., Melke, A., & Josephson, I. (2023). ‘Exploring moral injury among parents with children in out-of-home care’, Child & Family Social Work, 1–10. https://doi.org/10.1111/cfs.13127
