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A Model of Authentic Partnerships
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In the 1940s, Carl Rogers introduced the notion of a client-centred or person-centred approach, originally called the ‘non-directive approach’. Over the past several decades, however, we have lost sight of the true intent behind Roger's relational approach, settling instead on well-intended but often paternalistic approaches that place patients or...
Context in source publication
Context 1
... involves working with others, not for others. Analyses of our partnership projects highlighted for us three guiding principles and five enabling factors that need to be in place in order to mobilize authentic partnerships (see Figure 1). Our guiding principles, which now serve as the moral compass for all of our partnership projects, include: a genuine regard for self and others, synergistic relationships, and a focus on the process. ...
Similar publications
In the 1940s, Carl Rogers introduced the notion of a client-centred or person-centred approach, originally called the ‘non-directive approach’. Over the past several decades, however, we have lost sight of the true intent behind Roger’s relational approach, settling instead on well-intended but often paternalistic approaches that place patients or...
Citations
... There were several contextual factors and possible mechanisms identified within the studies at the macro, meso and micro levels as summarised in Table 3. Contextual factors at the macro level included systemic concerns and suitable staffing mix [9,32,38,40,42]; at the meso level, co-located services [31,32], environmental design [32, 34-36, 38, 39, 42], and institutional practices [9,[33][34][35][36][37][38][39][41][42][43]; and at the micro level, caregiving dynamics [9,31,[33][34][35][36][37][38][39][40][41][42] and staff expertise and attitudes [9,[31][32][33][34][35][36][37][38][39][40][41][42]44]. Potential mechanisms included: macro level factors of the need for robust and clear financial pathways [9] and clarity of service options and processes [9,37,38,40,42]; at the meso level, flexibility in, and continuity of, care [9, 31-36, 38, 39, 42] and equity and inclusion [9,31,32,[34][35][36][38][39][40][41][42]; and at the micro level, shared narratives and decision making, for a common point of understanding between the person with dementia, and their informal and formal carers [9, 31-36, 38, 40-42], and meaningful activity [9,31,[34][35][36][38][39][40][41]. ...
... Nolan et al. [58] extended this thinking with the six senses of wellbeing -security, belonging, continuity, purpose, achievement, and significance -all of which were variously highlighted in this review. Authentic partnerships between care providers, people living with dementia and their caregivers were flagged as important for this program theory, with genuine respect, collective wisdom and mutual benefit creating the environment in which these partnerships can flourish [4,43]. Culturally safe care, designed specifically for improving Indigenous health inequities, adds to this body of work, providing a constructive reflective framework to disentangle inherent power imbalances that may exist in care homes [59]. ...
Respite and permanent transition to residential aged care are processes that are designed to support preferences and needs of people living with dementia and their carers as the disease progresses. These services are highly variable in acceptability, accessibility, and availability for the caregiving dyad, often not reflecting a person-centred, co-ordinated and cohesive approach. This study aimed to use a two-phase realist synthesis to explore how respite and permanent transition models of care work in different contexts, through different mechanisms to produce varying outcomes.
Phase 1 explored preliminary theories and assumptions of the respite care journey, including (a) identification of systematic reviews and innovative programs, and (b) semi-structured interviews sessions with key stakeholders. Phase 2 involved an iterative scoping review to identify and map the available evidence, with a synthesis designed to unpack underlying program theories of why, for whom and in what circumstances respite/transition models of care works.
Phase 1(a) identified ten citations from 126 systematic review abstracts. Fourteen residential care managers participated in a contextual scan – Phase 1(b). Phase 2 expanded this knowledge, identifying a further 13 studies. Three program theories, at the macro, meso and micro level, were elucidated: (1) system-level evidence-based integration, through collaboration and co-ordination; (2) inclusive, quality care, with supportive environmental design; and (3) trust, autonomy, and meaning-making.
A novel realist synthesis approach was used to explore respite and permanent transition models of care beyond ‘what works’. Importantly, findings at the macro, meso and micro level context, suggest nuance, with a shared decision-making approach, is needed to optimise the ever-changing dementia care journey.
... Partnerships undergo change and evolution as actors, needs, values, and circumstances change (Hwang, 2019) -thus, partnership and timeliness are seen as mutually influencing values. Actors within interdependent care relationships foster partnership when they learn (or unlearn), adapt, and pivot toward better ways of caring for one another with time and experience (Dupuis et al., 2012;Hwang, 2017). A care worker, for example, may change how an older adult takes care of himself, as well as the routines of family care partners. ...
As society rapidly digitizes, successful aging necessitates using technology for health and social care and social engagement. Technologies aimed to support older adults (e.g., smart homes, assistive robots, wheelchairs) are increasingly applying artificial intelligence (AI), and thereby creating ethical challenges to technology development and use. The international debate on AI ethics focuses on implications to society (e.g., bias, equity) and to individuals (e.g., privacy, consent). The relational nature of care, however, warrants a humanistic lens to examine how “AI AgeTech” will shape, and be shaped by, social networks or care ecosystems in terms of their care actors (i.e., older adults, care partners, service providers); inter-actor relations (e.g., care decision-making) and relationships (e.g., social, professional); and evolving care arrangements. For instance, if an older adult’s reduced functioning leads actors to renegotiate their risk tolerances and care routines, smart homes or robots become more than tools that actors configure; they become semi-autonomous actors, in themselves, with the potential to influence functioning and interpersonal relationships. As an experientially-diverse, transdisciplinary working group of older adults, care partners, researchers, clinicians, and entrepreneurs, we co-constructed intersectional care experiences, to guide technology research, development, and use. Our synthesis contributes a preliminary guiding model for AI AgeTech innovation that delineates humanistic attributes, values, and design orientations, and captures the ethical, sociological, and technological nuances of dynamic care ecosystems. Our visual probes and recommended tools and techniques offer researchers, developers/innovators, and care actors concrete ways of using this model to promote successful aging in AI-enabled futures.
... Additionally, this new perspective can impact national dementia policies by involving PwD in national dementia plan. 33,34 PSW can also inform PwD and their caregivers about their rights and allowances being an intermediate link between them and dementia services or any other funding sources, 35 whereas, peer support initiatives unite their efforts towards stigma and discrimination providing inclusion, priorities setting, and action. 36 Finally, peer support can be assumed as a multifactorial intervention incorporated in dementia care delivered by former caregivers as well as PwD in early stages to respond to PwD and their caregivers' individual needs. ...
Aim
Peer Support Workers (PSW) as an Innovative Force in Advocacy in Dementia Care (PIA) project aimed to create sustainable and competency-enhancing services for people with dementia by finding new ways to involve former as well as current caregivers in dementia services and, therefore, provide their valuable perspective in dementia care and daily practice.
Participants and Methods
In order to achieve the aforementioned goals, the first step consisted in mapping the situation existing in the partners’ countries, respectively, Norway, Greece, Italy, and Romania. Subsequently, specific and well-structured training material was created with the purpose of recruiting and engaging PSW, in order to contribute to dementia services. The training material was then transferred to a digital platform addressed to PSW, people living with dementia (PwD), caregivers, and health professionals.
Results
The PIA project proposed the introduction of PSW in dementia care, establishing a close collaboration across the contributing countries, and trained a total of fifty potential PSW. Each country identified a specific role and function of PSW in dementia practice, according to their national particulars. The training seminars and videos proposed by the PIA project are presented in the current study and therefore helped to the distribution of significant information about the contribution of (potential) PSW in dementia care. All the results were uploaded on the platform designed to increase communication and collaboration across health professionals as well as caregivers.
Conclusion
The PIA project developed and designed training materials and methodologies for establishing PSW in dementia care in Norway, Greece, Italy, and Romania. PIA aims at introducing PSW in the healthcare system of the aforementioned countries, whereas future studies will elaborate on novel ways to measure the efficacy of being a PSW, as well as the benefits to stakeholders.
... Our interviews across disciplines and research contexts will help to identify major challenges and innovative practices and consider models built on meaningful inclusion, authentic partnerships, and/or co-design and whereby PLWD participate in ways that they deem meaningful. This may include but not be limited to determining subject matter and/or guiding the research process (see Dementia Enquirers, 2019; Dupuis et al., 2011;Mann & Hung, 2018). An agenda built on access, inclusion, and rights of PLWD is not only the 'right' thing to do, but also promotes stronger, more relevant, and useful research findings. ...
Background
People living with dementia (PLWD) may want to participate in research, but the guidelines and processes enacted across various contexts may prohibit this from happening.
Objective
Understanding the experiences of people with lived experiences of dementia requires meaningful inclusion in research, as is consistent with rights-based perspectives. Currently, the inclusion of PLWD in Canadian research is complex, and guidelines and conceptual frameworks have not been fully developed.
Methods
This research note outlines a three-year proof-of-concept grant on the inclusion and consent of PLWD in research.
FindingsIt presents a brief report on some of the contradictions and challenges that exist in legislation, research guidelines, and research practices and raises a series of questions as part of an agenda on rights and inclusion of PLWD in research.
DiscussionIt suggests conceptual, legal, and policy issues that need to be addressed and invites Canadian researchers to re-envision research practices and to advocate for law and policy reform that enables dementia research to align and respect the rights and personhood of PLWD.
... This could be due to a lack of understanding of the disease, and benevolent ageism.26 In turn, people with dementia may develop the belief that they cannot contribute to research activities, and it can be difficult to persuade them otherwise.27 What is important is to consider the unique needs of support in any vulnerable group28 and tailor approaches to cater to them by utilizing local resources and expertise. ...
Background
Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries.
Research Design and Objective
An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention.
Findings
Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI.
Discussion and Implications
International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources.
Patient or Public Contribution
PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.
... Persons with dementia (along with other persons with disability) have the right to be actively involved in the decision-making for programs and services that will, or should, include them [23,24]. Engagement of persons with dementia and their family members as co-creators in the development of training and resources can create more relevant and practical solutions [33,34]. Co-development processes can also have broader impact on the team. ...
... The DREAM project used a virtual, participatory process to finalize aims, set the project scope, and direct project activities. Our participatory process was guided by the principles and enablers of authentic partnerships, which were developed through and for participatory research with persons with dementia and care partners [33]. Authentic partnerships is an approach to including and valuing diverse perspectives, including those of persons with dementia and care partners, in decisionmaking [33]. ...
... Our participatory process was guided by the principles and enablers of authentic partnerships, which were developed through and for participatory research with persons with dementia and care partners [33]. Authentic partnerships is an approach to including and valuing diverse perspectives, including those of persons with dementia and care partners, in decisionmaking [33]. The authentic partnership approach was developed over a decade of participatory work with persons with dementia and their families and outlines both guiding principles and enablers of authentic partnerships [33]. ...
Promoting wellbeing of persons with dementia and their families is a priority of research and practice. Engaging diverse partners, including persons with dementia and their families, to co-develop interventions promotes relevant and impactful solutions. We describe the process, output, and lessons learned from the dementia resources for eating, activity, and meaningful inclusion (DREAM) project, which co-developed tools/resources with persons with dementia, care partners, community service providers, health care professionals, and researchers with the aim of increasing supports for physical activity, healthy eating, and wellbeing of persons with dementia. Our process included: (1) Engaging and maintaining the DREAM Steering Team; (2) Setting and navigating ways of engagement; (3) Selecting the priority audience and content; (4) Drafting the toolkit; (5) Iterative co-development of tools and resources; (6) Usability testing; and (7) Implementation and evaluation. In virtual meetings, the DREAM Steering Team confirmed the toolkit audiences (primary: community service providers; secondary: persons with dementia and care partners) and identified and evolved content areas. An environmental scan identified few existing, high-quality resources aligned with content areas. The Steering Team, additional multi-perspective partners, and external contractors iteratively co-developed new tools/resources to meet gaps over a 4-month virtual process that included virtual meetings, email exchange of documents and feedback, and one-on-one calls by telephone or email. The final DREAM toolkit includes a website with seven learning modules (on the diversity of dementia, rights and inclusion of persons living with dementia, physical activity, healthy eating, dementia-inclusive practices), a learning manual, six videos, nine handouts, and four wallet cards ( www.dementiawellness.ca ). Our co-development participants rated the process highly in relation to the principles and enablers of authentic partnership even though all engagement was virtual. Through use of the co-developed DREAM toolkit, we anticipate community service providers will gain the knowledge and confidence needed to provide dementia-inclusive wellness programs and services that benefit persons with dementia and their families.
... Though each PAR process is unique, PAR is defined by engagement of all stakeholders in meaningful ways throughout the research process (e.g., in collaborative decision making, collecting and interpreting data, choosing how to act on the results) (Balcazar et al., 2006;Dupuis & Whyte, 2017;Watkins & Shulman, 2008). When stakeholders collaborate within the PAR process, research can develop more relevant and practical solutions, help overcome stigma, and strengthen relationships among stakeholders (Dupuis et al. 2012b). PAR allows for integrated knowledge exchange among stakeholders as part of the process (Balcazar et al., 2006;Dupuis & Whyte, 2017). ...
... Our Participatory Approach: Authentic Partnership within PAR Our PAR process was guided by the principles of Authentic Partnerships, which were developed through and for PAR with persons with dementia and their families (Dupuis et al., 2012a). Authentic Partnerships require a focus on the process, trust in team members, and a genuine respect and regard for team members' unique perspectives (Dupuis et al. 2012a(Dupuis et al. , 2012bFreeman et al., 2019). Our goal was to use the Authentic Partnership practices to create spaces where members valued and respected each other and where each person's perspectives and experiences were heard and incorporated in the decision-making (Astell & Fels, 2021;Dupuis et al., 2012aDupuis et al., , 2012b. ...
... Authentic Partnerships require a focus on the process, trust in team members, and a genuine respect and regard for team members' unique perspectives (Dupuis et al. 2012a(Dupuis et al. , 2012bFreeman et al., 2019). Our goal was to use the Authentic Partnership practices to create spaces where members valued and respected each other and where each person's perspectives and experiences were heard and incorporated in the decision-making (Astell & Fels, 2021;Dupuis et al., 2012aDupuis et al., , 2012b. ...
Persons with dementia have the right to equal inclusion in rehabilitation, including physical activity. However, the perspectives of persons with dementia are rarely integrated into decision-making related to physical activity programming, services, and supports. Here, we describe the participatory action research (PAR) approach used to develop the Dementia-Inclusive Choices for Exercise (DICE) toolkit, which aims to increase the quality and number of physical activity opportunities available to persons with dementia. The DICE Research Team included persons with dementia, a family care partner, exercise professionals, community and dementia service providers, health care professionals, and researchers who worked to: 1) Engage/maintain the Research Team; 2) Set/navigate ways of engagement; 3) Understand barriers to physical activity; 4) Prioritize the audience and actions; 5) Develop the toolkit; 6) Conduct usability testing; and 7) Implement and evaluate. Guided by the Behaviour Change Wheel, and informed by interviews, focus groups, and existing research, our PAR Team chose to prioritize training exercise providers; exercise providers can enable exercise for persons with dementia if they understand common changes with dementia and how to support persons with dementia in exercise. The content and format of the toolkit was co-developed: drafted by our Research Team, adapted through a stakeholder workshop, and refined through iterative development and usability testing. The product of our PAR process, the DICE toolkit, includes videos meant to destigmatize dementia, training modules and a training manual for exercise providers, a physical activity handout for persons with dementia, and wallet cards to help persons with dementia communicate their abilities, needs, and preferences. Our usability study indicated that the toolkit could be used by exercise providers and may improve attitudes about dementia. Our vision is that our co-developed DICE toolkit will empower exercise providers to improve physical activity opportunities and support for persons with dementia.
... In order to understand the experience of living with dementia a deeper level of knowledge is required that depends on very carefully considered methods (Zeilig, 2016). Equally, Dupuis et al., (2012) have argued that 'Listening and hearing the perspectives of persons with dementia is not enough. We must actively involve them in decision-making to the fullest of their abilities and support their involvement using whatever means necessary' (p. ...
Accepted methods of enquiry to address qualitative research questions are focus groups and interviews, enabling access to the experiences, opinions, and perspectives of participants. However use of these methods with people with dementia is problematic because this condition can impair verbal communication in addition to other domains. These challenges can have a significant impact when trying to obtain insight from an individual through conversation and discussion. As researchers, we should be creating alternative methods that place equal importance on behaviour that is non-verbal as well as verbal. This contribution highlights the need for the advancement of creative qualitative methods drawing on lessons learned of the benefits and challenges during the development of a novel approach to support the use of visual methods in dementia research.
By focussing on all that is retained and done well, emphasising individual strengths and abilities, offers an increasingly prevalent alternative to existing loss-deficit models that have characterised dementia research in the past. This approach highlights the importance and appropriateness of visual methods in enabling meaning and transparency throughout the research process from ethical approval and consent procedures through to the collection, analysis, dissemination, and impact of the research data.
... Continuous IPC is essential during care movements (Groenvynck et al., 2021;Groenvynck et al., 2022;Hirschman & Hodgson, 2018) in order to avoid fragmented care (Parry et al., 2003). Listening to the voice of persons with dementia as collaborative partners in care exceeds the principle of solely taking a person-centred approach (Dupuis et al., 2012) and enables them to contribute to collaborative activities (Hydén, 2014) such as decision-making (Daly et al., 2018). Previous studies have focused on the perceptions and needs of persons with dementia in the moving process to a NH, and the needs of persons with dementia in a NH after the move (Aminzadeh et al., 2010;Garvelink et al., 2019;Thein et al., 2011). ...
Introduction: Interprofessional collaboration (IPC) within and during movements between care settings is crucial for optimal palliative dementia care. The objective of this study was to explore the experiences of persons with dementia regarding collaboration with and between healthcare professionals (HCPs) and their perceptions of a possible future move to the nursing home (NH) in palliative dementia care. Method: We conducted a cross-sectional qualitative study and performed semi-structured interviews with a purposive sample of persons with dementia living at home (N = 18). Data analysis involved content analysis. Results: Our study demonstrated that even though most persons with dementia find it difficult to perceive the collaboration amongst HCPs, they could describe their perceived continuity of care (Theme 1. My perception of collaboration among HCPs). Their core needs in collaboration with HCPs were receiving information, support from informal caregivers, personal attention and tailored care (Theme 2. My needs in IPC). Regarding a possible future move to the NH, persons with dementia cope with their current decline, future decline and a possible future move to the NH (Theme 3. My coping strategies for a possible future move to the NH). They also prefer to choose the NH, and continue social life and activities in their future NH (Theme 4. My preferences when a NH becomes my possible future home). Conclusion: Persons with dementia are collaborative partners who could express their needs and preferences, if they are willing and able to communicate, in the collaboration with HCPs and a possible future move to the NH.
... For example, Dementia Care Mapping, which is underpinned by Kitwood's definition, is the only dementia-specific tool for measuring person-centred care, but is limited by its design for use in long-term care and inpatient settings (9) and its reliance on others to assess quality for persons living with dementia. (10) The experiences of people living with dementia and their care partners are essential to understanding person-centred care, (11) and, consequently, the quality of dementia care. Some studies have explored potential components of person-centred care by engaging persons living with dementia and their care partners. ...
... Then maybe they'll listen to things." (5C, 10) Participants described that understanding what is most important to the person living with dementia as the key to integral high-quality, person-centred care. The following two subthemes shed light on how this principle relates to practical aspects of person-centred care. ...
... So they need to have a more ... an easier conversation ... that it isn't so clinical." (1P, 10) The effectiveness of clinicians' communication has an impact on participants' understanding of their care and condition. Many people living with dementia and care partners were hoping for more clear conversations about what to expect. ...
Background:
Person-centred care is at the core of high-quality dementia care but people living with dementia are often excluded from quality improvement efforts. We sought to explore person-centred care and quality of care from the perspectives of persons living with dementia in the community and their care partners.
Methods:
We used a qualitative descriptive approach with in-person, semi-structured interviews with 17 participants (9 persons living with dementia and 8 care partners) from Ontario, Canada.
Results:
Participants report that person-centred care is essential to the quality of dementia care. Three themes were identified that describe connections between person-centred care and quality of care: 1) "I hope that the people looking after me know about me", 2) "I just like to understand [what's happening] as we go down the road", and 3) "But the doctor doesn't even know all the resources that are available." Participants perceived that quality indicators over-emphasized technical/medical aspects of care and do not entirely capture quality of care.
Conclusions:
Persons living with dementia and their care partners provide important insights into person-centredness and quality of care. Their perspectives on "quality" may differ from clinicians and researchers. Research is needed to better integrate their perspectives in quality improvement and person-centred care.
