One of the biggest concerns for family caregivers is feeling overlooked, demeaned, or dismissed in care settings. While they often have first-hand knowledge of their loved ones’ needs, they find that their contributions to care discussions are not valued.

The good news is that there is growing awareness of the need to include family caregivers in care discussions and treatments, especially healthcare. Research shows that better communication and closer collaboration between family caregivers and a person’s care network results in better outcomes — for the care recipient and the carer.

As a result of that awareness, stakeholders at all levels of society are looking for solutions and tools that can make a positive difference. One such tool that has emerged recently is the caregiver ID program.

The now-defunct Change Foundation in Ontario* led the development of the ID, which is based on programs in the UK. Caregivers were also involved in the process.

The ID itself is a very visible badge, sticker, or card that identifies a person as a caregiver. In Ontario, the symbol on the badge is a heart with shapes — reminiscent of diamond facets — in a combination of bold colours. As part of the program, some organizations can opt to include the caregiver’s name and contact details on a patient’s chart.

For more than two years, caregiver IDs have been used in Ontario hospitals. According to the Ontario Hospital Association, the ID program has shown improvement in patient, caregiver and health provider experience.

1. Demonstrate an organization’s commitment to caregivers, creating a culture or environment for positive and collaborative interaction. It is a formal acknowledgement that family caregivers are essential partners in care.

2. Help educate caregivers on how to create effective partnerships with health professionals.

3. Help educate staff on caregivers’ roles and how to make them valued members of the care team. Also, staff receives training on what the caregiver ID badge means in their care setting.

4. Help to create a mutual understanding of consent and privacy in relation to the caregiver role.

5. Help create a less stressful environment for family caregivers and staff.

6. Contribute to continuity of care for loved ones.

7. Help staff quickly identify caregivers in the setting.

8. In a pandemic situation, help to identify caregivers even if they are wearing masks.

1. The tools are in their infancy so any assessment of their impact is limited at this time.

2. Some caregivers might ask, “Why is my word that I am a caregiver not enough? Why do I need an organization or institution to validate my claim? Rather than seeing it as a help, they might see it as yet another hindrance in their role.

3. Because some caregivers do not identify with their role, they might not be as willing to use caregiver IDs or understand why they need to. This has the potential to create a class system or a divide when it comes to how healthcare professionals interact with those who do wear the IDs and those who do not.

4. Is there a plan to make wearing caregiver IDs mandatory? Programs have a way of creating norms or expectations, privileges, and the potential to implement a “policing” culture. If IDs do become mandatory, caregivers who do not want to wear them will feel pressured against their will (adding to their burden or stress) or they might be denied certain privileges.

5. What happens if a caregiver enters a care setting without their ID? Is there room for understanding and flexibility?

6. Some IDs in our society (passports and provincial IDs, for example) have been monetized, meaning Canadians have to pay to acquire them. Is there a possibility that caregiver IDs could be monetized in the future, perhaps to help raise revenue for organizations? This would create another financial burden on caregivers and their families.

7. One benefit of caregiver IDs touted is that they show staff a caregiver has received appropriate training that allows them to be in a location. The immediate questions are what “training,” who gives the training and will some training be recognized and accepted based on where the training occurred or not? The potential politics and bureaucracy around this could be very off-putting to many caregivers.

8. Overly formalizing any process has the potential to prohibit flexible behaviour or responses based on fluctuating or unexpected circumstances.

9. Will some caregivers believe that their IDs entitle them to behave in a manner that might offend staff or other patients?

10. Some hospitals or other care settings might either choose not to invest in ID programs or not have the resources to do so. They might find themselves rated or valued lower by family caregivers and their care recipients than organizations that do implement these programs.

Looking Ahead

If caregiver IDs are rolled out across more provinces and communities it will be interesting to see the results. To prevent some of the cons from coming to fruition, it might be a good idea to start with a fundamental mindset of caregivers having a right to choose and not feel discriminated against in any way.

For communities or organizations seeking to create their own caregiver ID programs, learn more about the Ontario model and the UK Carer Passport program.

Note: *After concluding its 25-year journey, The Change Foundation moved some of its resources to the Ontario Caregiver Organization.

Sources

The Ontario Caregiver Organization: What Is Caregiver ID?

Ontario Hospital Association: Caregiver ID: A Simple Concept with a Big Impact