Marie Beaulieu, Ph. D., University of Sherbrooke
Hélène Carbonneau, Ph. D., University of Quebec at Trois-Rivières
Stéphanie McMahon, Administrative Director of Research | University Mission
Denis Beaulieu, Service quality and complaints commissioner of the CIUSSS de l’Estrie – CHUS
Alain Gagnon, Director of Intellectual Disability and Autism Spectrum Disorders and Physical Disability programmes (ID-ASD and DP) of the CIUSSS de l’Estrie – CHUS
CHAIR PERSONNEL INVOLVED IN THE PROJECT:
Will be completed soon
GRANTING AGENCY AND GRANT AMOUNT:
Office des personnes handicapées du Québec (OPHQ) – $100,000
PROJECT COMPLETION DATES:
September, 2018, to September, 2020.
ROLE OF CHAIR IN THE PROJECT:
Early writings on mistreatment of older adults were produced in the 1970s in the United States (Stannard, 1973). They mainly dealt with the concerns of stakeholders regarding the housing conditions of older adults, specifically persons with disabilities living in institutions. It might have been expected that the field of study of mistreatment of older adults with disabilities or persons with disabilities would develop, but this was not the case. The functional limitations of the older person were considered as vulnerability factors. For example, a large number of studies on mistreatment deal with older adults with disabilities, but do not name it that way. In doing so, mistreatment analyzes are global and non-specific depending on the type of disability of the person being mistreatment. As will be discussed, there are few specific studies on the subject.
Quebec, like other countries around the world, is experiencing an aging population and an increase in life expectancy (Quebec Institute of Statistics, 2012; Ministry of the Family of Quebec, 2018). The older population with long-standing disabilities or disabilities developed with age will grow significantly in the next few years.
In fact, in addition to an aging population, people who had a shorter life expectancy due to disability now live longer, despite premature aging (Gabbai, 2004). This is the case, for example, with people with Trisomy 21. This is why it is urgent to develop initiatives to increase scientific knowledge, to improve professional practices (Racic, Sebrenka, Kozomara., & al., 2006) and the renewal of social and health policies on aging and social participation of people with disabilities (Ansello & O’Neil, 2010, Busby, 2010).
In a document outlining the scientific knowledge produced between 1990 and 2013 on the subject of mistreatment of persons of all ages, with disabilities, the Office des personnes handicapées du Québec (OPHQ) concluded:
“Very little data on mistreatment of adults and older adults with disabilities is available. […] [Thus], mistreatment of persons with disabilities, particularly among older adults with disabilities, has not received sufficient attention to document it. Future research and surveys are needed to better understand the prevalence of this problem as well as its consequences in order to better plan interventions with this population “(Dugas & Lamotte, 2015: 39).
GOAL OF THE PROJECT OR RESEARCH QUESTION:
Theoretically and practically document the problem of psychological, financial and material mistreatment of older adults with disabilities that put them in a situation of handicap.
- Review the theoretical knowledge of psychological, financial and material mistreatment of older adults with disabilities.
- Document, by cases studies, psychological mistreatment of older adults with disabilities.
- Document, by cases studies, financial and material mistreatment of older adults with disabilities.
- In light of the first three objectives, identify recommendations for prevention, identification (including receipt of the request for assistance and access to services) and intervention (adaptation) for various audiences such as non-profit associations of older adults and persons with disabilities, the public health and social services network, community organizations, public policy makers (government departments and government), etc.
Our approach is participative, leaving a lot of room for older adults, including those with disabilities. It is also intended to be cross-sectoral by allowing the project to collaborate with various types of actors: researchers, decision-makers and administrators of the health network, community organizations, associations of older adults or persons with disabilities.
Phase 1: State of knowledge
In order to develop a complete and detailed portrait of psychological, financial and material mistreatment among older adults with disabilities, a systematic review of the scientific literature will be initiated from the beginning of the project (Institut national d’excellence en santé et en service sociaux, 2013).
Phase 2: Case Studies
The research will be done by case study, more specifically a multiple case study (20 to 22 participants, therefore 20 to 22 cases). This case study has an exploratory aim (the experience of mistreatment – a subject, to our knowledge, not studied in Québec) and descriptive (the trajectory of services). It is based on two data sources (Yin, 2014): interviews and socio-demographic questionnaires.
Our study mobilizes the complete CIUSSS de l’Estrie – CHUS. It is the second largest CIUSSS in Quebec with more than 101 points of service, including hospital centers (HC), residential centers (CHSLD, RTF, RI) and rehabilitation centers (DP, DI, TSA, Addiction).
Phase 3: Dissemination and transfer of knowledge
The dissemination of knowledge refers to scientific productions. We are committed to producing at least (it will most likely be more):
- A report to the OPHQ
- Two scientific articles
- Two scientific papers
Knowledge transfer refers to the transmission of results to various audiences. Various strategies can be used:
- A summary report of the study, accompanied by recommendations to the Quebec government;
- A summary report of our study, with recommendations for the CIUSSS de l’Estrie – CHUS and other CIUSSS and CISSS of Quebec to improve services and practices;
- Development of a guide for professionals to improve their interventions with this population;
- Presentations by invitation at the various service points of the CIUSSS de l’Estrie – CHUS and the community organizations that are members of our advisory committee;
The anticipated benefits are:
Identification of risk factors and vulnerability to the psychological and material or financial mistreatment of older adults with disabilities or a handicap;
- Determining the consequences of both types of mistreatment;
- Exploring facilitating factors or obstacles to requesting help;
- The trajectory of the current service trajectory and its improvement in response to the results;
- Documentation of the strengths, limitations, but also the changes to be made to accompaniment allowing for better adaptation of services and interventions offered to mistreated older adults with disabilities;
- Developing recommendations for improving practices, service planning and policies.
On June 14, 2018, the Research Chair on Mistreatment of Older Adults received confirmation that the grant was allocated so they may begin the research project in the fall of 2018 by the OPHQ.
The project will begin in the fall of 2018 for a period of 2 years.
Ansello, E. & O’Neil, P. (2010). Abuse, Neglect, and Exploitation: Considerations in Aging with Lifelong Disabilities. Journal of Elder Abuse & Neglect, 22(1-2), 105-130.
Busby, F. (2010). A Nation-Wide Elder and Handicapped Abuse Help-Line Network – Call Us and stamp Out Abuse Now. Ageing Int, (35), 228-234.
CIUSSS de l’Estrie – CHUS. (2018). À propos : un CIUSSS unique. Consulté le 8 mai 2018 à : https://www.santeestrie.qc.ca/a-propos/
CIUSSS de l’Estrie – CHUS. (2016). Plan d’organisation du CIUSSS de l’Estrie – CHUS 2015-2017 : Engagement, Humanisme, Adaptabilité. Consulté le 8 mai 2018 à : https://www.santeestrie.qc.ca/clients/SanteEstrie/A_propos/Documents-divers/Planorganisation_15-17_2juin2016_br.pdf
Creswell, J. W. et Poth, C. N. (2018). Qualitative Inquiry & Research Design: Choosing among Five Approaches (4e éd.). Los Angeles: Sage.
Dugas, L. & Lamotte, P. (2015). La maltraitance envers les personnes handicapées : recension des écrits et portrait statistique, Drummondville, Direction de l’évaluation, de la recherche et des communications, Office des personnes handicapées du Québec, 44 p.
Gabbaï, P. (2004). Longévité et avance en âge. Des personnes handicapées mentales et physiques. Gérontologie et société, 27(10), 47-73.
Gouvernement du Québec – Ministère de la Famille. Les personnes âgées de 65 ans ou plus : données populationnelles. Consulté le 3 mai 2018 à : https://www.mfa.gouv.qc.ca/fr/aines/chiffres-aines/Pages/personnes-agees-65-plus-donnes.aspx
Grant, M. J. & Booth, A. (2009). A Typology of Reviews: An Analysis of 14 Review Types and Associated Methodologies. Health Information and Libraries Journal, (26), 91-108.
Institut de la statistique du Québec. (2012). Le vieillissement démographique : de nombreux enjeux à déchiffrer. Gouvernement du Québec, Québec. 260 p.
Institut national d’excellence en santé et en services sociaux (INESSS). (2013). Les normes de production des revues systématiques. Guide méthodologique. Document rédigé par Valérie Martin et Jolianne Renaud sous la direction de Pierre Dagenais. Montréal, Qc : INESSS. 44p.
Racic, M., Sebrenka, S., Kozomara, L., Debelnogic, B. & Tepic, R. (2006). The Prevalence of Mistreatment Among the Elderly with Mental Disorders in Primary Health Care Settings. The journal of Adult Protection, 8(4), 20-24.
Stannard, C. I. (1973). Old folks and dirty work: The social conditions for patient abuse in a nursing home. Social Problems 20(2). 329-342.
Yin, R.K. (2009). Case Study Research. Design and Methods. (4e éd.). Thousand Oaks: Sage.
Yin, R.K. (2014). Case Study Research. Design and Methods. (5e éd.). Thousand Oaks: Sage.