Analysis: these groups provide vital services and support to many of the 300,000 Irish people who are caring for a loved one
One of the most critical yet underappreciated roles in society is caring for a loved one. The WHO estimates that there are 350 million people who are care dependent, while the UN has found that the majority of caregivers are women. In Ireland, the last census recorded nearly 300,000 family carers, with 61% being women. Care provision is a pressing issue in society. Health care strategies such as Sláintecare focus on enabling care as close to home as possible and, given the global deficit in health care workers, the role of the family carer is going to be more and more important.
Who are family carers?
A family carer is defined as a "person of all ages who provide care (usually unpaid) to family members, other relatives, partners, friends and neighbours with a long-term illness, disability or other long-lasting health or care need, outside a professional or formal employment framework". Despite their crucial role, family carers are often invisible and unrecognised in societal policies and our healthcare system and they often face significant challenges.
We need your consent to load this rte-player contentWe use rte-player to manage extra content that can set cookies on your device and collect data about your activity. Please review their details and accept them to load the content.Manage Preferences
From RTÉ Radio 1's Late Debate, how could family carers be better supported?
Impacts of caring
There are many positives to being a family carer. When you talk to carers, the vast majority are proud to be looking after a loved one and ensuring their health and wellbeing. But one common thread is that the stress and lack of structured state supports, as acknowledged in European Care Strategy, has negative impacts on the carer themselves.
The impacts of caring can be considered a "triple penalty", where a carer experiences negative effects on their health and wellbeing, their financial situation through reducing work hours or leaving work altogether and a loss of social life or social connection. This can lead to social isolation, a feeling all of us may remember from the lockdowns during the Covid-19 pandemic.
Online support groups
For family carers, social isolation can be long-term and pervasive and many carers have turned to online support groups as a way of seeking and giving support and forming connections. Online support groups have been around since the advent of the internet, and have grown exponentially over the last number of years. They can take place through social media sites such as Facebook, be text based only or have real time interactions using video conferencing tools such as Zoom.
From Care Alliance Ireland, project co-ordinator Tara O'Connor on the the development of the online support group
The Care Alliance Online Support group was formed in March 2020 in response to the social lockdowns of the pandemic. They'd over 2,000 members within weeks and currently have over 8,000 members. We spoke with members of this group to understand why they used the group, whether it had helped them and what were the key elements that were important for them.
One central theme that came through was how the group was a "lifeline". It enabled them to be connected to other carers, to give and receive support when they needed it and helped them to cope better with challenges in their caring role.
The group was private, safe and secure and the tone was friendly, welcoming and lots of fun. Importantly, it helped to relieve their social isolation by providing a sense of connection and belonging. Specific recommendations from the study included ensuring groups have well-trained moderators to manage the group, creating a sense of safety and shared identity among members.
We need your consent to load this rte-player contentWe use rte-player to manage extra content that can set cookies on your device and collect data about your activity. Please review their details and accept them to load the content.Manage Preferences
From RTÉ Radio 1's Liveline, carers outline the struggles they face on a daily basis
Other research has demonstrated the value of online support groups as a method of providing support to family carers and health professionals are increasingly referring family carers to online groups. However, these groups may often be set up and established without really understanding what family carers are looking for, why they join and why they stay or leave.
Many online support groups may be provided outside state structures. They can be set up by carers looking to support to other carers, by groups in the not-for-profit sector or as joint state and community initiatives. It is necessary therefore that there is a comprehensive and cohesive understanding of what online support groups are and how they can be developed as a pillar of support in our digital age.
The HSE's Telehealth Roadmap 2024-2027 has a dedicated pillar related to online supports and therapies, but it does not specifically cover online support groups like those of Care Alliance Ireland. There are challenges to ensure these support groups are sustainable and funded with evidence-based standards of practice. This ensures these vital services are available, effective and responsive to those who use and need them.
National Carers Week runs from June 10th to 16th
Follow RTÉ Brainstorm on WhatsApp and Instagram for more stories and updates
The views expressed here are those of the author and do not represent or reflect the views of RTÉ
