Co-Designing a Social Prescribing Intervention for Carer-Employees: A Qualitative Exploration of Stakeholder Perspectives
This qualitative study explores the lived experiences and needs of carer-employees through stakeholder interviews and a co-design workshop to inform the development of a scalable social prescribing intervention aimed at improving caregiver well-being and sustaining workforce participation in Canada.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer
Imagine a person who holds two full-time jobs, though only one pays a salary. The first job is the paid work they do to earn a living. The second is the unpaid, round-the-clock responsibility of caring for a family member who is sick, aging, or has a disability. This dual role creates a unique pressure cooker. These individuals, known as carer-employees, must navigate the rigid schedules of a workplace while managing the unpredictable, often urgent needs of a loved one. The strain is not just emotional; it chips away at their financial security, their career trajectory, and their physical health. As populations age, the number of people juggling these two roles is expected to grow, making it a critical issue for families, employers, and the economy alike.
For years, the support available to these workers has been a patchwork of disconnected resources. A company might offer a flexible schedule, while a community center might run a support group, but these systems rarely talk to each other. The person in the middle is left to figure out how to fit the pieces together, often without the time or energy to do so. Researchers in Hamilton, Ontario, set out to fix this fragmentation. They wanted to design a new kind of help called social prescribing. In simple terms, this is a method where a person is connected not to a doctor or a pill, but to community activities and non-medical support that fit their specific life. The goal was to create a system that could guide carer-employees to the right help at the right time, without adding to their already heavy load.
To build this system, the research team did not start with a blueprint. Instead, they started with the people living the reality. They conducted in-depth conversations with carer-employees and the bosses who manage them. They also brought together a large group of stakeholders, including healthcare workers, community organizers, and the employees themselves, for a half-day workshop to brainstorm solutions. The team listened to stories of exhaustion, financial worry, and the constant fear of being late or missing work. They heard about the emotional toll of caring for a parent with dementia or a child with special needs while trying to meet a deadline. The findings revealed that the biggest obstacle for these workers is not just a lack of services, but a lack of time and a fear of being judged.
The carer-employees described their lives as a series of unpredictable emergencies. One week might be manageable, but the next could involve a sudden hospitalization or a crisis that demands immediate attention. This unpredictability makes standard support programs difficult to use. If a support group meets every Tuesday at 10 a.m., a carer-employee might miss it because their loved one fell ill that morning. The researchers found that these workers are often forced to choose between their job and their care duties, leading many to reduce their hours, take unpaid leave, or quit their jobs entirely. The emotional cost is just as high, with many reporting feelings of isolation, guilt, and burnout. They feel they are constantly pulled in two directions, with no one to help them find a balance.
Employers, when interviewed, showed they wanted to help but often didn't know how. They described a reliance on informal, one-on-one conversations to manage these situations. A manager might allow an employee to work from home or shift their hours, but these arrangements are often ad-hoc and depend entirely on the relationship between the worker and the boss. Many employers admitted they were unaware of the full extent of the challenges their staff faced because employees were afraid to speak up. There was a fear that admitting to being a caregiver would make them look less committed or hurt their chances of promotion. This silence meant that many workers were struggling in isolation, and the support that did exist was often hidden or hard to find.
The co-design workshop brought these different perspectives together to build a solution. The group agreed that any new system had to be flexible and easy to access. They envisioned a central hub, like a single point of entry, where a carer-employee could explain their situation and be guided to the specific resources they needed. This could be anything from a respite care service to a local gardening group or a financial counseling session. Crucially, the group realized that the system had to follow the person. It wasn't enough to just make a referral; someone needed to check in later to see if the help was working and if the person's needs had changed. The workshop participants also emphasized that these services needed to be available at times that worked for busy workers, such as evenings or weekends, and that they should ideally include care for the person being looked after, so the carer could actually attend.
The researchers concluded that a successful intervention must be built around the reality of the carer-employee's life, not the other way around. It needs to acknowledge that caregiving is a dynamic, shifting responsibility that cannot be scheduled into a standard calendar. The proposed model suggests that by connecting workplaces with community resources through a dedicated navigator, carer-employees can access support without having to become experts in the system themselves. This approach aims to reduce the stress of navigating fragmented services and to create a culture where asking for help is seen as a normal part of working life. While the study did not test the final program, the insights gathered from these conversations provide a clear roadmap for building a support system that is practical, accessible, and truly responsive to the needs of those who care for others while working to support themselves.
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