Scoping study of definitions of social participation: update and co-construction of an interdisciplinary consensual definition.

BACKGROUND: considering the importance of social participation for quality of life and active ageing in older adults, it is an important target of social and health professionals' interventions. A previous review of definitions of social participation in older adults included articles up to 2009; new publications and changes in the social context (e.g. social media and the COVID-19 pandemic) justify continuing this work. OBJECTIVE: this paper provides an updated inventory and synthesis of definitions of social participation in older adults. Based on a critical review by content experts and knowledge users, a consensual definition is proposed. METHODS: using a scoping study framework, four databases (MEDLINE, CINAHL, AgeLine, PsycInfo) were searched with relevant keywords. Fifty-four new definitions were identified. Using content analysis, definitions were deconstructed as a function of who, how, what, where, with whom, when, and why dimensions. RESULTS: social participation definitions mostly focused on people's involvement in activities providing interactions with others in society or the community. According to this new synthesis and input from content experts and knowledge users, social participation can be defined as a person's involvement in activities providing interactions with others in community life and in important shared spaces, evolving according to available time and resources, and based on the societal context and what individuals want and is meaningful to them. CONCLUSION: a single definition may facilitate the study of active ageing and the contribution of older adults to society, socioeconomic and personal development, benefits for older adults and society, self-actualisation and goal attainment.

Social Usefulness: Theory and Evidence Concerning a Late Life Identity Construct.

PURPOSE OF THE STUDY: To clarify the construct of social usefulness by merging several influential theoretical perspectives on the findings of a qualitative investigation of late life prosociality. DESIGN AND METHODS: In-depth interviews with 20 older adults probed the meaning and psychological significance of the socially useful relationships they maintained with people and organizations. RESULTS: Based on identity theory, the thematic analysis yielded nine classes and more than 100 distinct properties of social usefulness. Self-determination theory was employed to organize and interpret the findings in relation to older adults' needs for relatedness, autonomy, and competence. IMPLICATIONS: Also addressed are the study's implications for multidimensional measurement of social usefulness in future epidemiological and psychosocial studies.

Personalized Citizen Assistance for Social Participation (APIC) adapted for older adults with visual impairment: results from a mixed study.

PURPOSE: To explore the effects of the Personalized Citizen Assistance for Social Participation (APIC), an intervention adapted here for visual impairment, involving weekly stimulation sessions over six to twelve months, provided by trained and supervised attendants, on seven outcomes (social participation, leisure, independence, mobility, quality of life, health-related quality of life, and empowerment) in older adults with visual impairment, and to document its facilitators and barriers. METHODS: A mixed-method design, which included a pre-experimental and an exploratory qualitative clinical research component, was used on 8 older adults (7 women) with visual impairment aged 70-86, and 8 attendants (5 women) aged 20-74. Before the intervention, directly after, and four months later, older adults completed questionnaires on the 7 outcomes. During the intervention, attendants completed diaries and participated in monthly meetings. Semi-structured interviews were administered to all participants after the intervention. RESULTS: Social participation, leisure, mobility, quality of life and empowerment had increased immediately after the APIC. These improvements were still generally observed four months later. Participants reported that the APIC improved older adults' capabilities, social participation, and social environment. CONCLUSIONS: The APIC is a promising intervention which helps older adults with visual impairment to deal with social restrictions.

In older adults, visual impairment has important consequences on active and healthy aging.Personalized citizen assistance for social participation (APIC) is an intervention that aims to foster the social participation.This study shows that APIC adapted to visual impairment influences social participation, leisure, mobility, quality of life and empowerment of older adults with visual impairment.Participants also reported improvements in their capabilities, social participation, and social environment.

Making sense of health and illness in palliative care: volunteers' perspectives.

OBJECTIVE: To encourage communication and contribute to the palliative care movement's need for interdisciplinary care, this article offers to explore the stance of volunteers on two fundamental concepts, "health" and "illness," as well as their related understanding of "palliative care." Volunteers' understandings are then compared with the concepts put forth by the Canadian Hospice Palliative Care Association (CHPCA) in its "Model to Guide Hospice Palliative Care." METHOD: Focus groups with volunteers, and individual interviews with coordinators from five selected palliative care community action organizations from across Canada, are used. A total of 65 participants from three Canadian provinces were interviewed. RESULTS: Participants view illness as a subjective, multidimensional, and transformative experience that requires multiple adjustments. It is an impediment to personal equilibrium and a challenge for the terminally ill and their close ones. Health, on the other hand, is a complex phenomenon that consists of physical, psychological, social, and spiritual well-being. For participants, health is most often embodied by a person's capacity to adjust to their challenging circumstances. Both volunteers and coordinators see palliative care as an alternative approach to care that centers on helping patients and their families through their ordeal by offering comfort and respite, and helping patients enjoy their life for as long as possible. SIGNIFICANCE OF RESULTS: Participants describe illness as a destabilizing loss and palliative care as a means to compensate for the numerous consequences this loss brings; their actions reflect these principles and are compatible with the CHPCA model.

[An individual and collective approach to the continuity of care]. / Approche individuelle et collective sur la continuité des soins.

Anthony Giddens' theory of structuring offers a comprehensive rationale that explains and allows understanding of the duality of individual and collective action. It takes into account both organisational structures and individual agents' actions and, most importantly, it highlights the underlying dynamics of the "duality of structure". Gidden's theory is the cornerstone of this study on the production and the reproduction of problems in the continuity of oncological care within the Quebec healthcare system. By using it, one can identify the contexts within which action takes place and distinguish the strategies social agents implement in order to deal with the situations generated by those contexts. Finally, one can describe the consequences for the health care system as a whole. The aim of this article is to show how Giddens' theory of structuring can be used for the study of socio-organizational phenomena.

Supporting the Process of Help-Seeking by Caregivers of Functionally Dependent Older Persons Through Electronic Health: Protocol for a Multicenter Co-Design.

BACKGROUND: It is often only when the initial signs of exhaustion appear that caregivers first may engage in help-seeking behavior, but it is difficult for them to know which is the most appropriate formal service in their situation. Electronic health (eHealth) can support caregivers in keeping the older person they are caring for at home, but few eHealth tools designed for supporting the process of help-seeking by caregivers of functionally impaired older persons have been developed using a co-design approach. OBJECTIVE: This paper aims to describe the protocol of a project that tries to assist caregivers to target their needs and those of the older person they support early in their help-seeking process, and guide them effectively to the formal service most appropriate for their situation. This project aims to answer the following questions: (1) What type of tool can better support caregivers to identify their needs and those of the older person they are caring for and then refer them to an appropriate formal service? and (2) What information should be found in such a tool? METHODS: This study presents a description of the process of an ongoing multicenter research project based on a co-design approach, which includes 3 phases (1) identification of caregivers' needs in terms of tools to support their help-seeking behavior, (2) development of a tool, and (3) evaluation of its usability. RESULTS: The project began in January 2016 with the ethics application for the 3 phases of the project. For phase 1, recruitment began in December 2016 and ended in September 2017. Phase 2 began in the spring of 2017 and ended in June 2018. All the co-design sessions have been completed. Phase 3 of the project will begin in September 2018. CONCLUSIONS: Although there are some challenges associated with this type of methodology, the methodology still remains relevant, as it involves future users in the development of a tool, which increases the chances that the tool will meet the users' needs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/11634.

Prioritizing the Needs of Caregivers of Older Adults to Support Their Help-Seeking Process as a First Step to Developing an eHealth Tool: The Technique for Research of Information by Animation of a Group of Experts (TRIAGE) Method.

BACKGROUND: Caregivers of functionally dependent older persons sometimes seek formal services to support their relatives. However, this process of help-seeking is complex. OBJECTIVE: The overall aim of the study was to use a co-design approach to develop an electronic health (eHealth) tool to support caregivers in their process of help-seeking. This study presents the first step of the design phase, which aimed to prioritize the user needs to be considered during the development of an eHealth tool. METHODS: A total of 3 groups of caregivers, community workers, and health and social service professionals participated in either a co-design session (1 or 2) or an advisory committee in 2 rural areas and 1 urban area. The needs identified in the academic literature and during a previous study were sorted (Technique for Research of Information by Animation of a Group of Experts [TRIAGE] method) by the participants (referred to in this study as co-designers) to obtain a consensus on those to be prioritized. Needs identified, grouped, and removed were ranked and compared. RESULTS: Of the initial list of 32 needs, 12 were modified or merged, 3 added, and 7 deleted as the co-designers felt that the needs were poorly formulated, redundant, irrelevant, or impossible to meet. In the end, 19 needs were identified for the design of the eHealth tool. CONCLUSIONS: Many of the identified needs are informational (eg, having access to up-to-date information) and are probably met by existing tools. However, many others are emotional (eg, being encouraged to use the services) and offer an interesting challenge to eHealth tool development. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/11634.

Requirements for an Electronic Health Tool to Support the Process of Help Seeking by Caregivers of Functionally Impaired Older Adults: Co-Design Approach.

BACKGROUND: In Quebec, Canada, many public, community, and private organizations provide resources to caregivers of functionally impaired older adults. Nevertheless, these resources may be difficult for caregivers to find. A co-design study was conducted to address the gap between caregivers and access to resources. The purpose of this study was to support the process of help seeking by caregivers of functionally impaired older adults through electronic health (eHealth). OBJECTIVE: The purpose of this study was to focus on the identification of functional and content requirements for an eHealth tool to support the help-seeking process of caregivers of functionally impaired older adults. METHODS: This study uses a co-design process based on qualitative action research approach to develop an eHealth tool with health and social service professionals (HSSPs), community workers, and caregivers. The participants acted as co-designers in identifying requirements for the tool. A total of 4 design workshops and 1 advisory committee session were held in different locations in Quebec, Canada. Activities were videotaped and analyzed with a conceptual framework of user experience. RESULTS: A total of 11 caregivers, 16 community workers, and 11 HSSPs participated in identifying the requirements for the eHealth tool. Several functional and content requirements were identified for each user need (19). Content requirements differed depending on the category of participant, corresponding to the concept of user segmentation in the design of information and communication technology. Nevertheless, there were disagreements among co-designers about specific functionalities, which included (1) functionalities related to the social Web, (2) functionalities related to the evaluation of resources for caregivers, and (3) functionalities related to the emerging technologies. Several co-design sessions were required to resolve disagreements. CONCLUSIONS: Co-designers (participants) were able to identify functional and content requirements for each of the previously identified needs; however, several discussions were required to achieve consensus. Decision making was influenced by identity, social context, and participants' knowledge, and it is a challenge to reconcile the different perspectives. The findings stressed the importance of allowing more time to deal with the iterative aspect of the design activity, especially during the identification of requirements of an eHealth tool. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/11634.

Promoting Identification and Use of Aid Resources by Caregivers of Seniors: Co-Design of an Electronic Health Tool.

BACKGROUND: The importance of supporting caregivers is recognized in home care for older persons, and facilitating their help-seeking process is a way to meet that need. The use of electronic health (eHealth) is a potentially promising solution to facilitate caregivers' help-seeking process. OBJECTIVE: The aim of this research was to develop, in partnership with community organizations, health and social service professionals and caregivers, an eHealth tool promoting the earlier identification of needs of older persons and an optimal use of available resources. METHODS: To design the tool, 8 co-design sessions (CoDs) were conducted and 3 advisory committees were created (in 11 regions) in Quebec between May 2017 and May 2018. A variety of methods were used, including the sorting method, the use of personas, eHealth tool analysis, brainstorming, sketching, prototyping, and pretesting. RESULTS: A total of 74 co-designers (women n=64 and men n=10) were recruited to participate in the CoDs or the advisory committees. This number allowed for the identification of needs to which the tool must respond and for the identification of its requirements (functionalities and content), as well as for the development of the information architecture. Throughout the study, adjustments were made to the planning of CoD, notably because certain steps required more sessions than expected. Among others, this was true for the identification of functionalities. CONCLUSIONS: This study led to the development of an eHealth tool for caregivers of functionally dependent older persons to help them identify their needs and the resources available to meet them. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/11634.

[Contribution of volunteers to the home care of elderly: the limits of their action]. / La contribution des bénévoles au soutien à domicile des personnes âgées: les frontières de leur action.

This article presents the results of a qualitative study on the contributions made by volunteers from a volunteer community organization to the home care of older adults living in a rural setting. In this study, the volunteer was considered as part of a social care system made up of a number of groups (the elderly themselves, those close to them, professional health providers, and volunteers). Results show that the lines delimiting the responsibilities of these various groups are neither clear nor precise. The place of the volunteer must take into account the nature of the participation of the other groups. How far the services offered by volunteers are used depends upon the characteristics that define their contributions and on the type of relationship they develop with a given older adult.

[Continuity of cancer care in Quebec: beyond the symptoms]. / La continuité des soins oncologiques au Québec.

OBJECTIVE: Serious problems in the continuity of medical care provided to cancer patients are a frequent occurrence; the source of these problems is not well understood. The purpose of this research is to determine how these problems arise and how they are perpetuated. DESIGN: Qualitative descriptive study based on Anthony Giddens's theory of structuration. SETTING: Four teaching hospitals in the Quebec City region. PARTICIPANTS: Cancer patients (n = 62), family physicians (n = 14), and oncology specialists (n = 13). METHOD: Individual interviews were conducted with breast cancer and lung cancer patients. Their medical files were examined so that they could be ranked according to the stage of their disease. We also conducted individual interviews with a sampling of the patients' family physicians and oncology specialists at the hospitals participating in the study. An analysis of the content of the interviews was performed following the principles of grounded theory. MAIN FINDINGS: When conditions arise that are likely to lead to problems in the continuity of medical care, patients and physicians often try to compensate. Health care providers employ regulation strategies and patients and their families employ substitution strategies. Although these strategies generally get results, they constitute one-time actions by the physician or patient to circumvent a problem. And because they do not address the problem across the system, the source of the problem does not change. CONCLUSION: One of the unintentional consequences of the strategies used by clinicians and patients is the masking of the real issues involved in continuity of care; these strategies actually get in the way of in-depth changes based on the needs of the health care system as a whole.

Preventive Home Visits for Older People: A Systematic Review.

RÉSUMÉ L'augmentation du nombre de personnes âgées présentant des incapacités et ayant des maladies chroniques entraîne une hausse des besoins en services de santé à domicile. Le nombre d'études et de revues systématiques traitant des approches préventives pour cette clientèle a proliféré, générant un besoin de synthèse des connaissances. Nous avons mené une revue systématique de revues systématiques évaluant l'effet des programmes de visite préventive pour les personnes âgées. Des 5 973 citations identifiées dans plus de 30 bases de données de littérature grise et scientifique, 10 articles répondaient à tous les critères d'inclusion. Les revues systématiques étaient retenues si elles comprenaient des essais randomisés contrôlés comparant des interventions de soins à domicile offerts par un professionnel de la santé et ceux sans professionnels. Les interventions sont souvent des évaluations gériatriques globales et s'accompagnent de visites de suivi. Il ressort que les visites préventives multidimensionnelles à domicile ont le potentiel de diminuer la mortalité, en particulier chez les personnes âgées plus jeunes, et offrent aussi un potentiel d'amélioration de l'autonomie fonctionnelle. Toutefois, ces résultats doivent être interprétés avec prudence vue la diversité des interventions analysées.

[Factors facilitating or constraining volunteer involvement in community organizations for home support to seniors]. / Les facteurs favorisant ou contraignant l'engagement bénévole dans les organismes communautaires en soutien à domicile auprès des aînés.

The reality of volunteering in nonprofit organizations who offer services to seniors at home was observed from the viewpoint of two types of actors: volunteers and coordinators. Our results suggest that there are three decisive stages in volunteering: recruitment, realization of volunteer activity, and pursuit of this commitment. For each of them, some factors are more influential than others. Their presence or absence makes possible or not the initiation of this commitment and its pursuit. In this context, a constant negotiation takes place between the actors. Each of them has to adapt himself to others. Nevertheless, this adaptation is limited. So, stability between the position of the organization and that of the volunteer is necessary.