New research sheds light on mistreatment of caregivers

Caregiver and elderly person
Caregiver and elderly person

In-depth look by experts from CIUSSS West-Central Montreal first of its kind in Quebec

Every day across our healthcare network, a spouse, a son, a daughter or a friend offers support to someone receiving care. Now, ground-breaking research coordinated by experts in our CIUSSS casts a light on how these caregivers may be mistreated.

Researchers held 18 focus groups and three regional forums with caregivers and community workers across the province, as well as 15 one-on-one interviews with caregivers. Their findings provided a snapshot of the prevalence of caregiver mistreatment—the first such in-depth study in Quebec.

The research was led by Sophie Éthier of the Centre for Research and Expertise in Social Gerontology (CREGÉS), part of the Academic Affairs and Research Ethics Directorate, and it provides insight into the nature of caregiver abuse and what nurses and other healthcare professionals can do to address it.

“We can turn it around and create a culture of good treatment,” says Anna Andrianova, Coordinator of Expertise in Caregiving at CREGÉS and coordinator of the project.

Studies say that 46 percent of Canadians—13 million people—have been a caregiver at some point in their lives, mostly by caring for an older person. Their roles can range: It could be bathing the individual and doing their housework, driving them to medical appointments or providing them with emotional support.

While these essential roles help loved ones live independently and maintain their quality of life, caregivers can sometimes experience mistreatment, despite their dedication and compassion.

Most people think that abuse might occur at the hands of those receiving their care. However, the research, published in Gérontologie et société and reported in Perspectives infirmière (page 34), identifies three other sources: from institutions, from the caregiver’s immediate circle of family and friends, and even from the caregivers themselves—a result of neglecting their own needs and placing unrealistic expectations on themselves.

Who is a caregiver?

Anyone who provides support to somebody in their immediate circle who has a temporary or permanent disability of a physical, psychological, psychosocial or other nature, and with whom the person shares an emotional bond as a family member or otherwise.

The support is continuous or occasional, short or long term, and is offered on a non-professional basis, in a free, informed and revocable manner, with the aim of promoting the recovery of the person and the maintenance and improvement of their quality of life at home or in other living environments.

The support may take various forms, such as transportation, assistance with personal care and housekeeping, emotional support, or the organization of care and services. The support may have financial repercussions for the caregiver or limit their ability to take care of their own physical and mental health or to assume their other social and family responsibilities.

Source: Government of Quebec

“When we started out, we knew that caregiver mistreatment existed but we didn’t know how prevalent it was,” says Ms. Andrianova. “Now we have concrete examples of how caregivers experience it, day to day.”

One real-life example provided in the study highlights a case in the health care system. During a consultation with a patient, a healthcare worker asked the caregiver to leave the room. When the caregiver later asked questions about the case, she was told that the information had already been given to the patient.

“The attitude of healthcare providers, the sighs when they see the caregiver arrive, comments like ‘What are you doing here?’ show that caregivers are excluded from decision-making and that their involvement is not always wanted,” the researchers found.

Mistreatment can take many forms. It can be belittling a caregiver’s abilities, imposing tasks on them, challenging their expertise or not providing them with enough information to fulfill their role.

Ms. Andrianova says the culture can change, and nurses are crucial partners in the process. They can accompany and support caregivers, listen to their needs and experiences, and place value on their contributions.

Anna Andrianova, Coordinator of Expertise in Caregiving at CREGÉS, oversaw the study.
Anna Andrianova, Coordinator of Expertise in Caregiving at CREGÉS, oversaw the study.

“What’s really important is to recognize caregivers at the outset. Once you recognize them, you can start working in partnership with them. You can take an interest in their reality.”

Anna Andrianova

The researchers devised a “toolbox” aimed at preventing caregiver mistreatment and fostering positive behaviour; it includes a poster, leaflets, facilitation guide and narrated PowerPoint presentations. The toolbox can be obtained at Proche Aidance Québec.

The research is another instance of CIUSSS West-Central Montreal’s leadership in the field of caregiving, which is built on four decades of expertise. The CIUSSS was recently given responsibility for setting up Quebec’s Observatoire de la proche aidance. The latest study’s principal researchers are Ms. Éthier of Université Laval and Marie Beaulieu of Université de Sherbrooke, former chairholder of the Research Chair on the Mistreatment of Older Adults.