CONTOURS OF THE CAREGIVER EXPERIENCE

Caring for the carers

A spinal cord injury has a dramatic impact not only on the individual directly affected, but also on the people closest to them, who may need to provide long-term care. This can be a stressful role with potentially significant effects on the caregiver’s health, a topic at the heart of research in Dr Christine Fekete’s group.

A spinal cord injury often has a dramatic impact on the individual affected, limiting their functional capacity and frequently leaving them dependent on support from others. Often, people with a spinal cord injury are in need of informal care, which is mostly provided by family members. Based at the Swiss Paraplegic Research Group, Dr Christine Fekete is the Principal Investigator of the proWELL project funded by the Swiss National Science Foundation. The project investigates the experiences of people providing informal care to their partner with a spinal cord injury, and the impact this informal care role has on their health and wellbeing. Pro-WELL is a longitudinal study, in which data was gathered via questionnaires and interviews in three waves over a twelve month period from couples in which one partner had sustained a spinal cord injury. “We are looking at couples and are interested in the dyadic processes going on when one person is affected by a physical disability and the other person is involved in caregiving,” outlines Dr Fekete.

Does caregiving hit caregivers’ health?

Pro-WELL data showed that the subjective caregiver burden, defined as the emotional strain from the caregiver role, negatively affects caregivers’ health. “Among other interesting insights from the data, we observed that the caregivers who felt emotionally burdened by caregiving reported worse physical and mental health in comparison to those caregivers who rated their emotional strain from caregiving as low,” Dr. Fekete said. In contrast, research showed that those who rated caregiving as a meaningful and satisfying activity in their lives reported better mental health than the caregiving partners who did not see caregiving as meaningful and satisfying. It became thus evident that the emotional evaluation of the caregiving activity plays a central role for caregiver’s health in the long-term, and the pro-WELL team was interested in further investigating associations between emotional caregiver burden and health. “We are interested in identifying caregivers that are at increased risk of suffering from their caregiving role, and to disentangle underlying mechanisms linking caregiver burden to health,” she says.

Who is at risk to suffer from caregiver burden?

Given that data showed that being the main caregiver of a family member can be a stressful role with potentially harmful longterm effects on health, it is of high relevance to identify subgroups of caregivers at risk of being strained by providing care. “We found that those care-givers who have a high objective burden in terms of time devoted to caregiving and people who are in a low socio-economic position are at risk of having a high emotional burden from their caregiver role,” says Dr Fekete. More specifically, the researchers have collected data on various socio-economic indicators, including income, financial

strain, education level and subjective social position, from which they have been able to draw some deeper insights. “People who score lower on these indicators of socio-economic position are at higher risk of experiencing caregiving as emotionally burdensome,” Dr Fekete explains.

The association between low socioeconomic position and increased caregiver burden is partly explained by the fact that psycho-social resources are unevenly distributed and care-givers from lower socio-economic positions may have less resources available to help them cope with the situation and relieve their burden, for example through financial and emotional support. “We saw that the care-givers in lower socio-economic positions tended to feel more lonely and reported lower self-efficacy, which is maybe what hinders them from coping adequately with their role,” continues Dr Fekete. “We also saw that co-morbidities – occurring together with the spinal cord injury – are more prevalent among the care-receivers in the lower socio-economic positions, thus increasing the complexity of the caregiver’s situation.”

Relationship quality and social support as protective factors

The pro-WELL data also clearly indicated what factors might protect against the experience of caregiver burden. “We see that people with a good relationship quality are less likely to consider caregiving as burdensome as we observed that caregivers who rate their partnership as deep, trustworthy and stable are less likely to indicate burden from their caregiver role, independently of how many hours they spend in caregiving,” Dr Fekete outlines. The researchers further observed that adequate social support and high partner relationship quality can buffer the negative effects of subjective caregiver burden on mental health. Dr Tough, working as a Postdoc-researcher in the proWELL team says: “The detrimental effects of the caregiver burden on health were substantially reduced in individuals with high quality, supportive relationships.”

Further analysis of the associations between social relationships, caregiver burden and health revealed that a high emotional caregiver burden might negatively impact on social relationships. “People with high emotional caregiver burden might have less time to maintain relationships and are at risk of losing supportive relationships,” Dr Tough comments.

Strengthening caregiver health: What can be done?

In summary, results from the pro-WELL study showed that emotional burden from caregiving can negatively impact on health, that social relationships are powerful protective factors against strain from caregiving, and that socio-economically disadvantaged caregivers are at increased risk of suffering from caregiver burden, partly because they have fewer social resources to cope with the situation.

Researchers are now working to build on these findings in the development of a policy brief, which could in future help in the provision of better care for strained caregivers. “We are trying to enter into a dialogue with relevant stakeholders. As our research institute is part of a larger rehabilitation clinic, we are very close to health professionals working with people with spinal cord injuries,” continues Dr Fekete.

CONTOURS OF THE CAREGIVER EXPERIENCE

Project Objectives

Informal caregiving is highly prevalent and evidence suggests that long-term caregiving can be a chronically stressful experience that negatively affects caregivers health and well-being. The study’s objective was to explore the relationship of social and behavioral factors with the caregiver experience to better understand the causal pathway linking the caregiver experience with health and wellbeing of caregiving partners of persons with a physical disability.

Project Funding

This project was financed by the Swiss National Science Foundation and Swiss Paraplegic Research, Nottwil, Switzerland.

Contact Details

Project Coordinator, Dr Christine Fekete Swiss Paraplegic Research, Guido A Zäch Strasse 4, CH-6207 Nottwil; T: + 41 41 939 65 90 E: christine.fekete@paraplegie.ch W: https://www.paraplegie.ch/spf/en/researchfocus/research-focus/employment-and-socialintegration

Tough H, Brinkhof M, Siegrist J, Fekete C. Social inequalities in the burden of care: a dyadic analysis in the caregiving partners of persons with a physical disability. International Journal of Equity in Health2020; 19(1):3. Fekete C, Tough H, Siegrist J, Brinkhof M. Health impact of objective burden, subjective burden and positive aspects of caregiving: an observational study among caregivers in Switzerland. BMJ Open2017; 22;7(12):e017369. Fekete C, Brinkhof M, Tough H, Siegrist J. Cohort profile: Longitudinal study of social participation and well-being among persons with spinal cord injury and their partners (pro-WELL). BMJ Open2017; 7:e011597.

Dr Christine Fekete

Dr Christine Fekete is leader of the ‘Integration, Participation and Social Epidemiology’ Group at the Swiss Paraplegic Research group. She gained her PhD in Medical Sociology from the University of Basel, and has since held several research positions in Switzerland and Germany. She is a member of the Scientific Committee of the International Spinal Cord Injury Survey.

The priority in many rehabilitation services is of course the individual who has suffered the injury, yet the people around them will also be affected, and may well be involved in caregiving in the long-term. If a caregiver subsequently falls ill, partnerships are disrupted, or the family member is unable to cope with the situation, then he or she has to be replaced by the health system, which Dr Fekete says has wider consequences. “The work of informal care-givers has an enormous economic value and saves the health system huge amounts of money. But it cannot be that the price is paid by the caregivers becoming ill through to confront their partners with the fact that caring for them presents strain,” she says. Identifying burden from informal caregiving is thus a sensitive issue and families as a whole need to be involved in the rehabilitation process, not just the individual who has suffered the spinal cord injury, believes Dr Fekete. “If your partner suddenly becomes wheelchair-dependent, that affects your life profoundly,” she stresses. “This should be even more strongly included in rehabilitative interventions and we need to acknowledge that families as a whole system are part of the rehabilitation process.”

We aim to help identify the care-givers that are at risk of experiencing a high burden, and also to disentangle the pathways linking care-giver burden to health.

their work,” she remarks. This underlines the wider benefits of providing effective support to those informal caregivers who need it. “A lot of people cope well with the situation – around a fifth of our sample is affected by high emotional burden,” says Dr Fekete. “They are the people who need the support to be able to stay healthy in their role.”

This research is part of the wider goal of providing more effective support to caregivers and reducing the burden on national healthcare systems, which are already under significant strain. While there has often been a tendency in the past for caregivers to suffer in silence, Dr Fekete is now looking to place their needs in sharper focus. “We are interested in developing guidelines on how to monitor the strain on care-givers, so that people who are in need of support are identified,” she outlines and adds one point that might be critical to consider: “We also have the impression that caregivers who feel emotionally burdened are ashamed of seeking help as they do not want

The project’s research also holds wider relevance in the context of our aging society, with many people likely to need support and care in their old age. While the project’s research has centred primarily on people with spinal cord injuries, the impact of the findings from the pro-WELL study are not limited to this specific context. “We believe that our findings can serve as a model for other informal care-givers, as the risk factors for suffering from subjective burden due to the caregiver role are likely to be similar across different caregiver groups,” Dr Fekete says. There are differences between caring for someone with a spinal cord injury and an elderly individual who may be experiencing cognitive decline, yet there are also some common issues. “We are convinced that the main findings from our research, for example on socio-economic inequalities, are relevant to other care-giving situations,” says Dr Fekete.