Acknowledging and Responding to Mistreatment in CARegiving (ARMCAR)

PRINCIPAL RESEARCHER:

Mélanie Couture, Ph.D. – University of Sherbrooke

RESEARCH TEAM:

Sophie Éthier, Ph. D., University of Laval (Co-researcher)

Maryse Soulières, Ph. D., University of Montréal (Co-researcher)

Anna Andrianova, M. Soc. serv., coordonnatrice du domaine d’expertise de la proche aidance at the CIUSSS du Centre-Ouest de Montréal, doctoral candidate in social work (Collaborator)

Sarita Israel, B.A., B.S.S., coordonnatrice du domaine d’expertise pour contrer la maltraitance envers les personnes aînées at the CIUSSS du Centre-Ouest de Montréal (Collaborator)

CHAIR PERSONNEL INVOLVED IN THE PROJECT:

Kevin St-Martin, Coordinator of the Chair

Roxane Leboeuf, Research agent

Rosalie Lacasse, Research agent

Renée-Pier Filiou, Research agent

Jessie Berthiaume, Research assistant

Flora Aude Le Cerf, Student under the direction of Mélanie Couture

COLLABORATING ORGANIZATIONS:

Proche aidance Québec: Collaborating organization. Proche aidance Québec is an organization that regroups 124 community organizations that supports more than 41 000 informal caregivers across Quebec. As a collaborating organization, Proche aidance Québec sits at the Advisory committee. This committee’s role is to support the research team in the progression of each step of the project. Which includes participating to: the decision making for the project, the recruitment, the analysis to the interpretation of data, the content development of the ARMCAR program, as well as the development of knowledge transfer tools. The Advisory committee aims to ensure a common vision and objectives, while integrating everyone’s perspective at each step of the research. In short, this committee allows to present the needs, as well as the priorities of the targeted population and the involved environments.

Regroupement des organismes montérégiens d’aidants naturels (ROMAN) : Collaborating organization. ROMAN is an organization with the mission or regrouping, supporting and accompanying  the organizations that support informal caregivers of Montérégie. It has 28 member organizations. As a collaborating organization, ROMAN sits at the Advisory committee and will contribute to all of the project’s phases.

Canadian Network for the Prevention of Elder Abuse (CNPEA) : Collaborating organization. The CNPEA will contribute by using its wide network of members, sympathisers and partners to support the recruitment of community organizations in Quebec that dedicate themselves to supporting informal caregivers. The organization will also contribute to spreading the knowledge with their online knowledge sharing platform (cnpea.ca), monthly bilingual reports to about 900 members, the new French speaking Pan Canadian Table and its social media.

GRANTING AGENCY AND GRANT AMOUNT:

Public Health Agency of Canada – $734 924

PROJECT COMPLETION DATES:

April 2023 to March 2026.

ROLE OF THE CHAIR IN THE PROJECT:

Project leader

RESEARCH PROBLEM:

In 2022, a study estimated that 34% of Quebec adults were informal caregivers (Appui pour les proches aidants, 2023). The term “caregiver” is define in Quebec according to the Act to recognize and support caregivers as:

any person who provides support to one or more members of his or her immediate circle who has or have a temporary or permanent physical, psychological, psychosocial or other incapacity, regardless of their age or living environment, and with whom the person shares an emotional bond as a family member or otherwise. The support is continuous or occasional, and short- or long-term, and is provided on a non-professional basis and in a free, enlightened and revocable manner in order, among other things, to promote the care receiver’s recovery and the preservation and improvement of his or her quality of life at home or in other living environments. (LQ 2020, c 22, s 2 : 2020).

From the moment their journey begins, informal caregivers experience a psychological distress and must cope with relational changes within their family, as well as an increase in responsibilities (Lee et al., 2019). Hence, informational and emotional appear and must be fulfilled. Furthermore, exhaustion can develop following a lot of stress coming from an imbalance between demand and resources (Gérain & Zech, 2019). The exhaustion of informal caregivers is linked to depression, poor health and episodes of violence (Gérain & Zech, 2022). Stressful events linked to aging, such as sickness and severe disabilities, can lead to the escalation of violence within a couple already facing domestic violence, or even lead to violence in a previously harmonious couple (Walsh et al., 2007). Furthermore, informal caregivers aged 50 years and older caring for other persons aged 50 years and older face particular challenges, related to aging (Zink et al., 2003). In a study on domestic violence toward women aged 55 years and older, Zink and colleagues (2003) highlight the fact that the health issues related to aging, those of the informal caregiver and their aging partner, is an important reason leading them to stay in the abusive relationship. Many aged women have stated that they feel obligated to care for their aged partner, whereas others stated that their own health condition rendered them dependant to their abuser (Zink et al., 2003). Violence in a family support context  within aged couples is not the same as the other age groups (Bédard, et al 2023). Children can deny or minimize the experienced violence by one of the two older parents and even severe the bond with the parent by denouncing the experienced violence (Bédard, et al, 2023). The older person is then left isolated.

Three mistreatment scenarios can be seen in a caregiving context: mistreatment toward the assisted person, mistreatment toward the informal caregiver or the informal caregiver and the assisted person mistreat each other (Hughes, 1997). This particular context can create distress, as much for the informal caregivers than the assisted person, it is then essential to develop prevention tools to support informal caregivers, that can also experience domestic violence (Bédard et al., 2023). In Quebec, according to the Act to combat maltreatment of seniors and other persons of full age in vulnerable situations (L-6.3), mistreatment of older adults is define as (maltreatment is used in the Act) “[…] means a single or repeated act, or a lack of appropriate action, that occurs in a relationship where there is an expectation of trust, and that intentionally or unintentionally causes harm or distress to a person” (L-6.3, C. 10, s 2 : 2022). This definition highlight that only one act or lack of appropriate action, causing harm or distress to a person is enough to establish that there is mistreatment whether it is intentional or not.

According to the World Health Organization [WHO] (2022), mistreatment of older adults is an important public health problem in a lot of countries. Unfortunately, the population of Quebec is not spared from this problem. In 2019, the Enquête sur la maltraitance envers les personnes aînées au Québec (EMPAQ) revealed that 5,9% of Quebec older adults living at home experienced mistreatment in the last 12 months before the survey and principally by family members (Gingras, 2020). These mistreatment situations could be in the form of psychological violence (4,6%), physical violence (0,8%), material or financial violence (0,8%), sexual violence or physical neglect (0,4%).

According to Éthier et al. (2020), informal caregivers can be mistreated, intentionally or not, by institutions, their surrounding, the beneficiaries of care or neglect themselves. When there is a pre-existing history violence, caregivers do not necessarily no how to stand up for themselves or can not set limits to ensure their psychological or physical well being (Band-Winterstein, 2015). Furthermore, the stress and burden linked to the role of informal caregiver increase the risks of perpetrating mistreatment (Government of Quebec, 2022). For the assisted person, many factors increase the risk of experiencing mistreatment, including physical and mental health issues, as well as cognitive and autonomy loss (Government of Quebec, 2022). Furthermore, the COVID-19 pandemic has increase the risks (Bédard et al., 2023 ; Makaroun et al., 2020). Practitioners in domestic violence in Quebec have observed an increase in violence cases, as well as an amplification of the violence level between partners during the confinement period, notably among older adults (Bédard et al., 2023). For example, the excuse of confinement emphasized for older adults was used to justify imprisoning their partners (Bédard et al., 2023). Taking into account the impact of this role transition and the changes in the informal caregiver-assisted person relationship in the caregiving trajectory, it is essential that mistreatment situations be identified to adequately support informal caregivers.

GOAL OF THE PROJECT OR RESEARCH QUESTION:

This project aims to develop and evaluate the efficiency of a multicomponent educational program to help further improve knowledge about mistreatment toward persons aged 50 years and older within a caregiving context, promote help seeking of informal caregivers, facilitate the identification and reporting of mistreatment situations, as well as improving the social support for informal caregivers and their health. The multicomponent program will be developed by relying on two existing tools which will be adapted and improved to  be offered online in French and in English. The latter, called Acknowledging and Responding to Mistreatment in CARegiving (ARMCAR), will be proposed to non-profit organizations (NPO), to cooperatives and to domestic help social economy businesses (DHSEB) offering direct services to informal caregivers, whose clientele includes persons aged 50 years and older. In French, the program is named  Reconnaitre et Agir en MAltraitance en contexte de Proche Aidance (RAMAPA).

This online program will contain three components:

• An educational program on mistreatment toward persons aged 50 years and older within a caregiving context for informal caregivers aged 50 years and older;
• An online educational program for representatives of NPO, de cooperatives and DHSEB (employees, volunteers and supervisors of employees and volunteers) about mistreatment toward persons aged 50 years and older within a caregiving context; as well as on the management model for situations of mistreatment of older adults;
• An organisational tool to support the development of methods and partnerships for the management of these types of situations..

ARMCAR will be developed by the adaptation and improvement of the content from two existing tools which constitute the theoretical framework on which this research project relies.

• The tool box: Treating Caregivers Well A Shared Responsibility! (Éthier et al., 2020a)
• Organizational tool: Modèle de gestion des situations de maltraitance envers les personnes aînées (Couture et al., 2019).

OBJECTIVES:

The general objective of this project is secondary prevention of mistreatment toward persons aged 50 years and older within a caregiving context by putting emphasis on the early detection and support to the persons to reduce the negative consequences and avoid its reoccurrence (Niolon, 2017). More specifically, this project aims to counter mistreatment toward persons aged 50 years and older within a caregiving context by implementing an innovative online program in NPO, cooperatives and DHSEB offering direct services to informal caregivers, whose clientele includes persons aged 50 years and older.

The following project aims to achieve 4 principal objectives:

Project phases

Phase 1: Development of the program

The first phase of the ARMCAR project consists of developing the program and testing it with potential users. This phase is characterised by:

• The development of the program which will be supported by:
  1. The realization of a scoping review of the scientific literature,
  2. An assessment of training needs of volunteers and employees of organization offering direct support to informal caregivers concerning mistreatment in a caregiving context involving persons aged 50 and older,
  3. Adapting two existing interventions:
     1. Toolbox: Treating caregivers well. A shared responsibility! (Éthier et al., 2020)
     2. Organizational tool: Model for the Management of Older Adult Mistreatment Situations (Couture et al., 2019).

• Assessment of the online program’s usability which, by using interviews and questionnaires, will aim to:
  1. Document the users’ experience (employees, volunteers and organization managers and informal caregivers),
  2. Identify the obstacles and facilitators to its implementation.

Phase 2: Implementation and efficacity evaluation of the program

The second phase of the project consists in progressively implementing the ARMCAR program within 16 organizations and evaluate the effects on identification and reporting mistreatment situations in a caregiving context as well as on the health of informal caregivers who completed the program.

METHODOLOGY:

Development of the program

A User-Centered Design will be used for the adaptation of the existing tools and the development of ARMCAR. This design contains three steps (Hasani et al., 2020):

1. Needs assessment of the users
2. Design
3. Evaluation

The process will be done in collaboration with the advisory committee composed of experts  on a professional, experiential or recherche level in the useful field for the smooth running of the project (e.g. mistreatment, caregiving, etc.). It is more specifically composed of: the principal researcher, two research agent, two co-researchers, two collaborators of the Centre de recherche et d’expertise en gérontologie sociale (CREGÉS) of the CIUSSS du Centre-Ouest-de-l’Île-de-Montréal, as well as three representative of NPO, cooperatives and DHSEB offering direct services to informal caregivers, whose clientele includes persons aged 50 years and older, notably a representative of ROMAN and a representative of Proche aidance Québec.

For the needs assessment of the users, a purposeful sampling will be used (Patton, 2002). We wish to recruit about 40 representatives of NPO, cooperatives and DHSEB across Quebec offering direct services to informal caregivers, whose clientele includes persons aged 50 years and older, either employees, volunteers as well as persons who supervise employees and volunteers to answer a questionnaire (via the Simple Survey platform) and a subsample of 12 participants of this representatives wishing to also participate to a semi-structured individual interview (and or until saturation of the qualitative data). For the needs of the informal caregivers, we will use the results from a previous research from Éthier and collaborators (2021).

The development of the content for the ARMCAR program will rely on two existing tools which will be improved and adapted to answer the objective of ARMCAR. To do so, the research team will carry out a scoping review. It is a knowledge synthesis method with the main goal of laying out a portrait of every work available on the research subject. This will allow to update the empirical knowledge on mistreatment in a caregiving context, to adapt and improve the existing tools. Then the analysis of the results from needs assessment of the users will also improve the content of the ARMCAR program. The adaptation process of the two existing tools, with the triangulation of the data coming from the scoping review and the assessment needs of the users will be done by co-construction workshops with the Advisory Committee.

The ARMCAR program will then be incorporated into the online platform Moodle, to facilitate its implementation province wide. Before evaluating the efficiency of ARMCAR, it will be tested in French and in English, with a convenience sample of 10 representatives of NPO, cooperatives and DHSEB offering direct services to informal caregivers, whose clientele includes persons aged 50 years and older, as well as 10 informal caregivers aged 50 years and older for each language (total n = 40), to determine its clarity, usability as well as its acceptability.

Implementation and evaluation

The design used will be a mixed-methods stepped-wedge, open-cohort cluster randomized controlled trial.

The open-cohort cluster randomized controlled trials are used to evaluate the effect on the individual level of a new intervention, including programs such as policies and staff training, but the implementation is done on the cluster level (Copas et al., 2015). In this project, a cluster represents an NPO, cooperatives and DHSEB offering direct services to informal caregivers, whose clientele includes persons aged 50 years and older. Each cluster will receive the intervention at different moments and the order in which they will receive it will randomized. This means that each organizations will know the control condition (usual care) and will then go on to the intervention condition. The project will be implemented progressively within 16 participating organizations during 4 periods of two months. For each organization, we wish to recruit 15 representatives, as well as 16 informal caregivers aged 50 years and older helping a relative aged 50 years and older for a total of 240 representatives and 256 informal caregivers.

Inclusion criteria

For representatives of non-profit organizations (NPO), cooperatives or the domestic help social economy businesses (DHSEB) :

1. Must be an adult aged 18 years and older;
2. Must be an employee or volunteer since at least 6 months in an NPO, a cooperative or a DHSEB having for mission to offer direct services to informal caregivers in Quebec, whose clientele includes persons aged 50 years and older;
3. Must be an employee or volunteer offering a direct service to informal caregivers aged 50 years and older helping a relative aged 50 years and older as part of their functions; OR
4. Must be a person that has the role of supervising employees or volunteers offering a direct service to informal caregivers aged 50 years and older helping a relative aged 50 years and older as part of their functions;
5. Must be able to communicate in French or in English.

For informal caregivers:

1. Must be a person aged 50 years or older;
2. Must be the informal caregiver of a person aged 50 years and older;
3. Must receive services from an NPO, a cooperative or a DHSEB having for mission to offer direct services to informal caregivers in Quebec, whose clientele includes persons aged 50 years and older;
4. Must be able to communicate in French or in English.

PROJECT ADVANCEMENT:

Development of the program phase in progress

COMMUNICATIONS:

N/A

MEDIA