Analysis: Research shows people in caregiving roles could benefit from connecting with peers in similar situations
One of the great joys of life is having a 'tribe' of friends or family who can be counted on in challenging times, or who are concerned about your wellbeing. This invaluable resource, which some of us probably take for granted, is social support, and it is a crucial factor in promoting positive wellbeing and satisfaction in life.
But not everyone has good social support and this may be particularly true for those taking on the role of caregivers. In our research, we found that almost half of family carers of people living with multiple sclerosis (MS) experienced poor social support, with only 7% expressing strong support from social networks.
Caregiving is common in the wider population. In the most recent Irish census, 6% of the population reported providing unpaid care regularly. These carers were mostly females (61%) between 40 and 64 years of age. This cohort of 299,128 people represents a 50% increase of carers from the 2016 census. Similarly, our study consisted mainly of women (78%) with an average age of 49 years who were in a relationship (76%). They provided unpaid care, assistance with daily living, or support to their relative or loved one with multiple sclerosis.
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Research has highlighted how taking on the role of a caregiver can have mixed effects on the caregivers themselves, including how carers experienced low levels of limiting long term illness. Other studies reveal the risk of burden, low wellbeing and low quality of life on caregivers, particularly among romantic partners. Our own work also suggests that this may be the case, and that carers also expressed lower wellbeing compared to the general population.
There is a need to identify better supports for carers, and peers may bolster each other. People with similar life experiences can offer a respite from these challenges, potentially providing much-needed social support. Research suggests that other caregivers (i.e. peers) can support each other with relevant information or advice, thereby supporting psychosocial wellbeing.
The exchange of experiential knowledge and the connections that peers form as they interact provide important benefits. In our study, participants saw value in having caregiving peer support, with one stating ‘I can only see benefits. It would be wonderful to have peer support – someone else who understands the challenges…’. Another noted how ‘…it always helps to share problems…’. However, almost two thirds of caregivers in our study revealed a significant need for peer support, with 55% expressing that this need was unmet.
Read more: A 'lifeline' for family carers: the role of online support groups
In our research, we wanted to understand what might prevent MS caregivers from accessing this support. A key issue may be self-identifying as a caregiver in the first instance. One participant highlighted how this ‘feels like a big step. I don’t identify as being in a caregiving role’. Unless carers accept their role, they might not perceive a need to seek support from others, even where there are clear benefits in both the short or long term.
Beyond this, a lack of outreach or information might prevent those seeking support, particularly from peers, from availing of such supports. For some others, guilt might limit engagement with other peers. In this context, the caregiver might over-prioritise the needs of the care recipient, and experience elevated levels of guilt when seeking self-care.
For stakeholders involved in supporting people in a caring role, this might mean casting a wide rather than specific net when reaching out to prospective caregivers. For instance, one participant in our study stated that the language used needs to include people who might play a minor supportive role when reaching out with peer support opportunities. They highlighted that ‘supporters’ rather than ‘caregivers’ might resonate with a larger majority of affected people.
Read more: Why young carers are a 'hidden' group in Irish society
Further, more proactive outreach and the availability of flexible opportunities are required. That includes potential support, that might be organised formally by organisations such as Family Carers Ireland, or more specific support targeting carers in specific situations such as MS Ireland. They might also include structured online fora such as the Care Alliance, Dementia Carers Count, and Irish Heart Support for Carers. Additionally, peers themselves might organise peer-led support through private social media or messaging accounts. In each case, an intentionally inclusive approach should be adopted while seeking participation.
Most people will care for a loved one, family or friend at some point in their lives. In acute or intermittent contexts, negative consequences can be overcome and easily reversed. However, some negative consequences may be unavoidable. Caregivers may face shrinking social support and require the support of peers. However, promoting peer support with intentionality can help mitigate these challenges for more caregivers.
Research for this project has been funded by Research Ireland under Grant number 18/CRT/6222. The author also acknowledges the role of MS Ireland and the Public Patient Involvement Panel in this research.
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The views expressed here are those of the author and do not represent or reflect the views of RTÉ