Participatory action research: An exploration from a Freirean perspective of research involving people with dementia.

BACKGROUND: Researchers are increasingly being called upon to involve people with dementia in research that pertains to them. Participatory Action Research (PAR) has been one of the approaches that has been utilized to do this. How people understand and apply the ideas behind this approach however has often been atheoretical and diverse. This has implications for how purpose, power, voice and agency are conceived and actualized. OBJECTIVES: This paper will examine how theoretical construction of PAR can inform the process of meaningfully involving people living with dementia in research. Specifically, drawing on the work of Paulo Freire, this paper will articulate a way of conceptualizing PAR that is explicitly critical and then demonstrate how these ideas informed a PAR study focused on addressing stigma and discrimination with people living with dementia. CONCLUSION: The purpose of the paper is to engage researchers and people with lived expertise in critical reflection of what it actually means to involve people with dementia in research.

Making space at the table: Engaging participation of people with dementia in community development.

OBJECTIVES: The Building Capacity Project is an asset-based community development initiative that aims to reduce stigma and promote social inclusion for people with dementia. Using a community-based participatory approach, we conducted research to examine the relational patterns and participatory practices within and across project sites in two different regions of Canada (Vancouver and Thunder Bay). METHODS: Five focus groups and five individual interviews were conducted with team members and community partners (n = 29) and analysed for themes. RESULTS: The overarching theme of Making Space at the Table explains how the participation of people with dementia has served both as a value and a practice shaping the relational work throughout the project. Three sub-themes include: Maintaining a common foundation; Creating communication pathways; and Fostering personal connections. CONCLUSIONS: Together, these findings show how community development can support the meaningful participation of people with dementia in their communities through processes of collaboration that focus on individual and collective strengths, that allow time for the work to unfold, and for building relationships that foster trust and respect for diversity.

Co-design of a digital app "WhatMatters" to support person-centred care: A critical reflection.

BACKGROUND: People with dementia often do not receive optimal person-centred care (PCC) in care settings. Family members can play a vital role as care partners to support the person with dementia with their psychosocial needs. Participatory research that includes the perspectives of those with lived experience is essential for developing high-quality dementia care and practices. OBJECTIVE: Throughout 2021-2022, a mobile app, called WhatMatters, was co-developed to provide easy-to-access and personalised support for people with dementia in hospitals and long-term care homes, with input from patients/residents, family partners and healthcare staff. This article discusses and critically reflects on the experiences of patients/residents, family partners, and healthcare staff involved in the co-design process. METHODS: For the app development, we applied a participatory co-design approach, guided by a User Experience (UX) model. The process involved co-design workshops and user testing sessions with users (patients/residents, family partners, healthcare staff) to co-develop the WhatMatters prototype. We also conducted focus groups and one on one interviews with staff and caregiver participants to explore their experiences. Our research team, which also included patient partners, took part in regular team meetings during the app's development, where we discussed and reflected on the co-design process. Reflexive thematic analysis was performed to identify themes that represent the challenges and rewarding experiences of the users involved in the co-design process, which guided our overall reflective process. FINDINGS: Our reflective analysis identified five themes (1) clarifying the co-design process, (2) ensuring inclusive collaborations of various users, and (3) supporting expression of emotion in a virtual environment, (4) feeling a sense of achievement and (5) feeling valued. IMPLICATIONS: WhatMatters offers potential for providing personally relevant and engaging resources in dementia care. Including the voices of relevant users is crucial to ensure meaningful benefits for patients/residents. We offer insights and lessons learned about the co-design process, and explore the challenges of involving people with lived experiences of dementia in co-design work, particularly during the pandemic.

Family members' experiences and management of resident-to-resident abuse in long-term residential care.

OBJECTIVES: Resident-to-resident (RRA) abuse is increasingly recognized as a significant problem in long-term residential care.Families have a constant presence in this setting, yet their inclusion in research about RRA is minimal. The purpose of this study was to examine family members' experiences and management of RRA. METHODS: The methodology was critical ethnography.Twelve family members participated in in-depth interviews and 56 hours of participant observation were conducted. Data were analyzed thematically. RESULTS: The main themes illuminate families' experiences of RRA in a context that largely normalizes it.In the absence of formal supports, families developed a range of management strategies, ranging from passive to active intervention.Organizational factors, such as staffing levels and mix, and the physical environment also contributed to RRA. DISCUSSION: Families are actively managing RRA in long-term residential care. Policies and programs, including educational supports, should be developed to validate and support families.

The Influence of Organizational Systems on Information Exchange in Long-Term Care Facilities: An Institutional Ethnography.

Person-centered care is heavily dependent on effective information exchange among health care team members. We explored the organizational systems that influence resident care attendants' (RCAs) access to care information in long-term care (LTC) settings. We conducted an institutional ethnography in three LTC facilities. Investigative methods included naturalistic observations, in-depth interviews, and textual analysis. Practical access to texts containing individualized care-related information (e.g., care plans) was dependent on job classification. Regulated health care professionals accessed these texts daily. RCAs lacked practical access to these texts and primarily received and shared information orally. Microsystems of care, based on information exchange formats, emerged. Organizational systems mandated written exchange of information and did not formally support an oral exchange. Thus, oral information exchanges were largely dependent on the quality of workplace relationships. Formal systems are needed to support structured oral information exchange within and between the microsystems of care found in LTC.

The impact of oral health on body image and social interactions among elders in long-term care.

OBJECTIVE: The objective of this study was to explore how social interactions and body image are influenced by perceived oral health among older people who live in long-term care facilities. BACKGROUND: Social interactions among frail elders in long-term care (LTC) facilities are limited, but to what extent body image and oral health influence their social relations is poorly understood. A positive body image and the perception of adequate oral health are linked to increased social contacts, as well as improved health and well-being irrespective of age. However, as frailty increases, it is unclear whether appearance and oral health priorities remain stable. MATERIALS AND METHODS: Open-ended interviews were conducted with a purposefully selected group of cognitively intact, older men and women who exhibited varying degrees of frailty, social engagement and oral health conditions and lived in one of seven long-term care facilities. The interviews were analysed using a constant comparative technique, and a second interview with participants checked the trustworthiness of the analysis. RESULTS: Three major categories were expressed by the participants: (1) My mouth is fine; (2) It depends; and (3) Not that important. Within each category, there were several contributing and influencing factors. CONCLUSIONS: Social interactions among residents in LTC may be negatively impacted by poor oral health, but only if other personal and social issues are less bothersome than conditions with the mouth.

Maximizing Theoretical Contributions of Participant Observation While Managing Challenges.

Participant observation (PO) is an important method of data collection used in a variety of research methodologies. PO can inform theory development by providing understanding of participants' behaviors and the contexts that influence their behaviors. Because theory development is important in grounded theory studies, we emphasize theoretical contributions of PO while interrogating the challenges of using PO, in particular, attending to informed consent. We use the exemplar of a mid-range theory about nursing practice with hospitalized older adults to highlight contributions of PO to category development. While acknowledging theoretical contributions, we explore challenges entailed in observations where consenting participants interact with vulnerable patients and a changing cast of health care professionals in dynamic contexts. Reflexivity about interactions with vulnerable individuals, as well as other actions to avoid compromising voluntary consent, enhances contributions of PO.

Practising family medicine for adults with intellectual disabilities: patient perspectives on helpful interactions.

OBJECTIVE: To explore the perspectives of adults with intellectual disabilities (IDs) on helpful interactions with their family physicians. DESIGN: Exploratory, qualitative study. SETTING: Vancouver, BC. PARTICIPANTS: Purposive sample of 11 community-dwelling adults with IDs. METHODS: In-depth, semistructured interviews were conducted face to face with participants. Interviews were audiorecorded and transcribed verbatim. Research team members read the transcripts, which were then coded into categories and subcategories and discussed at collective analysis meetings. The main study themes were generated through this iterative, collective process. MAIN FINDINGS: Two themes about helpful interactions were identified: helping patients understand and helping patients navigate the health care system. The first theme reflected helpful ways of communicating with patients with IDs. These approaches focused on plain-language communication and other strategies developed jointly by the patients and their physicians. The second theme reflected ways in which the family physicians helped adults with IDs manage their health needs despite the complex constraints of their socioeconomic situations. CONCLUSION: Adults with IDs want to play an active role in managing their health as they age, and helpful interactions with family physicians make this possible.

The impact of an acute psychiatry environment on older patients and their families.

Ethnographic methods (observations and interviews) were used to investigate the physical environment of a geriatric psychiatry unit to understand how it meets the needs of patients with mental health conditions. Four interrelated themes of environmental qualities emerged as central in promoting healing: therapeutic, supportive of functional independence, facilitative of social connections, and personal safety and security. Therapeutic describes the existence of a home-like environment and quality sensory stimulations. Supportive of functional independence refers to the environmental features that make it easy for older adults to mobilize and perform activities of daily living. Facilitative of social connections indicates the provision of social spaces for patients, families, and staff to interact and engage in meaningful activities. Personal safety and security involves having staff in close proximity and minimizing disruptions from confused patients. The evidence suggests that the physical environment is important in making hospitals safe and supportive of healing for older adults with mental health conditions.

College men's depression-related help-seeking: a gender analysis.

BACKGROUND: Men's health help-seeking behaviours vary considerably depending on the context. The current empirical literature on the influence of masculinity on college men's attitudes towards mental health-related help-seeking is largely limited to investigations involving psychology students. AIM: To describe the connections between masculinities and college men's depression-related help-seeking. METHODS: Qualitative interviews with 21 college men who were diagnosed or self-identified as depressed. Constant comparison was used to inductively derive gendered understandings about participants' depression-related help-seeking. RESULTS: Three themes were identified: (1) denying weakness; (2) limiting self-disclosure and mustering autonomy; and (3) redefining strength. CONCLUSION: The findings demonstrate connections between masculinities and help-seeking that can assist health care providers to understand the practices of college men who experience depression.

Invisible hands: the role of highly involved families in long-term residential care.

Care work by family and friends is recognized as a cornerstone of community-based care for older adults; however, the role of families in institutional-based care work has been less well understood and researched. Drawing on findings from a critical ethnographic study, this article aims to examine the unique role of highly involved family members within long-term residential care. The study took place between October 2006 and April 2008 in two facilities in British Columbia, Canada. A purposive sample of 11 highly involved family members participated in in-depth interviews and participant observations. The main themes were "Hands-On," "Hands-Off," "Surveillance," and "Interlopers." These themes illuminate the ways in which highly involved family members engaged in care work, including how they positioned themselves and were positioned by staff and administrators. Implications of the study focus on the need to include families in philosophies of care and policies that shape care work in long-term residential care.

Masculinities, work, and retirement among older men who experience depression.

The high incidence of depression among older men has been linked to numerous factors. In this qualitative descriptive study of 30 older, Canadian-based men who experienced depression, we explored the connections between participants' depression, masculinities, work, and retirement. Our analyses revealed three thematic findings. The recursive relationship between depression and work was reflected in depression impeding and emerging from paid work, whereby men's careers and work achievements were negatively impacted by depression amid assertions that unfulfilling work could also invoke depression. Lost or unrealized empires highlighted the centrality of wealth accumulation and negative impact of many participants' unfulfilled paid work aspirations. Retirement as loss and the therapeutic value of work reflected how masculine ideals influenced men to continue working to avoid the losses they associated with retirement. The findings confirm the need to support men's work-related transitions by affirming a diversity of masculine identities beyond traditional workman/breadwinner roles.

Shifting patterns of everyday activity in early dementia: experiences of men and their families.

In this article we draw from a larger study to examine experiences of two men and their families as they negotiate changing patterns of everyday activity in the months after receiving a diagnosis of dementia. We conducted in-depth interpretive phenomenological analysis of interview and observational data that were gathered from the men and various members of their families (n = 7) over a period several months. Findings are presented as three themes: The best kind of man (highlighting participants' historical positioning); It's a little different now (recognizing challenges posed by the dementia); and You have to do something (showing how the men and their families responded to and accommodated these challenges). We discuss these findings in terms of how everyday activity is not only important for supporting personhood in dementia, but it also contributes to sustaining family identity, and does so in a way that is deeply influenced by gender and masculinity.

Waiting for home: The experience of delayed discharge for people with dementia.

INTRODUCTION: Individuals who remain in hospital once their health has stabilised experience delayed discharge. This often occurs for people with dementia when care needs exceed what can be managed at home. There is little research that takes into account the experience and needs of these patients. This Interpretive Description (ID) study, theoretically grounded in personhood and social citizenship perspectives, focused on the perspectives of people with dementia experiencing delayed discharge to address this gap in research and to better understand how nursing care can be improved for them. METHODS: Twenty-one individuals participated in this study: eight patient participants experiencing delayed discharge and living with dementia, six family members, and seven nurses. Data collection methods primarily included participant observations, totalling 100 h of observations. Fourteen semi-structured interviews were also conducted with family members and nurses and with one patient participant. Informal conversations were undertaken with patient participants who did not take part in interviews. RESULTS: Thematic analysis resulted in three main themes, encapsulating the patients' experiences: (1) Living and Waiting; (2) Distress and Behaviours; and (3) Looking Beyond the Designation. Findings are discussed in the context of the passive nature of delayed discharge care, the need for person-centred care, and prevailing discourses around the behavioural symptoms of dementia. CONCLUSION: Implications for nursing practice include the need to acknowledge and foster the abilities of people with dementia. The behaviour narrative and labelling prevalent in hospitals must also be challenged. Lastly, nurses need to recognise the significant transition that is the delayed discharge experience, especially for people with dementia. This study advocates for person-centred and inclusive nursing care, where ongoing needs are recognised and addressed, particularly for people with dementia experiencing delayed discharge, who are waiting for home.

Dementia Without Borders: Building community connections to reduce stigma and foster inclusion.

Around the world people with dementia face stigma and social exclusion. An interdisciplinary team from Seattle, Washington, and Vancouver, British Columbia led a collaborative project developing cross-border community partnerships to increase awareness and reduce stigma, promote social participation of people with dementia, and enhance their well-being. The work was organized around three themes - citizen engagement, social entrepreneurship, and creative expression - and involved regular meetings so researchers, community providers, and people with dementia and care partners could know each other better. Dementia Without Borders was organized as an end-of-project celebration, a public festival bringing together community members from both countries to share what the team had learned from each together. The event took place at the Peace Arch, an international park straddling the border between Washington and British Columbia. Over 140 people arrived on their respective sides, created banners, and walked together to the Peace Arch to meet and exchange gifts with those coming from the other country. A picnic shelter was used to display art created by people with dementia and outdoor tables allowed everyone to eat together and listen to poetry readings and musical performances. Feedback was overwhelmingly positive with many expressing a sense of hope and belonging. This project has leveraged the symbolic power of an international border to generate new ideas about fostering social inclusion and reducing stigma for people with dementia. It shows the importance of place and history, building relationships on trust and participation, and being flexible and responsive to opportunities for social innovation.

Nursing students' knowledge and beliefs about care of older adults in a shifting context of nursing education.

AIM: To a report a study of improvements in students' knowledge and beliefs about nursing care of older adults following completion of an introductory course with integrated adult/older adult content. Background. Nursing schools are under pressure to provide accelerated programmes to meet growing workforce demands and provide students with the knowledge they require to care for an ageing population. Thus, stand-alone courses in gerontological nursing are being eliminated and integrated with general adult content. The effect of this approach remains poorly understood. DESIGN: A one-group pretest-post-test design was used. METHODS: Data were collected between September-December 2010. Students completed the Palmore Facts on Aging Quiz, the Perceptions of Caring for Older People Scale, and open-ended questions about their experiences before and after completing a course with integrated adult/older content. RESULTS: Students' knowledge and beliefs about nursing care of older adults demonstrated an important improvement following completion of the course. Qualitative findings reflected three themes: relating to older people; neglect by the system; having time to learn. CONCLUSIONS: Findings from this study suggest that even when integrated with general adult content, students' knowledge and beliefs about older adult care can be positively influenced. Furthermore research is needed to examine long-term integration of students' learning about older adult care. Nursing faculty with expertise in nursing care of older adults must develop resources and supports for their colleagues to build capacity among nurse educators and integrate older adult content throughout nursing programmes to enhance nursing practice with an ageing population.

Unintended Consequences of Pandemic Management Strategies on Residents and Family in One Long-term Care Home in British Columbia: A Patient-Supported Qualitative Study.

Background and Objectives: In March 2020, pandemic management strategies were mandated across long-term care homes in British Columbia, Canada, to control the effects of COVID-19. This study describes and contextualizes the impact of visitation, infection prevention and control, and staffing strategies on the perceived health and well-being of residents and families. Research Design and Methods: This interpretive description study was part of a larger mixed-methods study at a publicly funded not-for-profit long-term care home in British Columbia, Canada. Eleven family members and 10 residents were interviewed between October and December 2020, and resident and family partners participated in a steering committee throughout all stages of the research. Findings: Early pandemic management strategies had an adverse impact on the perceived health and well-being of families and residents. Visitation restrictions eliminated care routinely provided by families and prevented in-person communication between residents, families, and care providers. Other infection prevention and control strategies isolated residents; group enrichment programs were stopped, and lockdowns created a perception of incarceration. Donning and doffing personal protective equipment took time away from staff-resident interactions and the single-site order reduced staff numbers, placing additional time restraints on residents' care. Discussion and Implications: Unintended adverse consequences of pandemic management strategies demonstrate the risks of creating policies based on a medicalized definition of health. Clear lines of communication are vital to increase a sense of control for families and residents. Elimination of care provided by families and paid companions exposed a gap in Canada's public long-term care system. This care gap raises concerns about equitable care access for residents without families or financial means to pay for additional care.

Conceptualizing citizenship in dementia: A scoping review of the literature.

Citizenship has provided an important conceptual framework in dementia research and practice over the past fifteen years. To date, there has been no attempt to synthesize the multiple perspectives that have arisen in this literature. The purpose of this paper is to explore, reflect on, and contrast, the key concepts and trends in the citizenship discourse as it relates to people with dementia. Using a scoping review methodology, forty-nine articles were identified for review. Despite the use of different descriptors, thematic analysis revealed four core themes underpinning citizenship discourse: 1) the relationality of citizenship; 2) facilitated agency and autonomy; 3) attention to stigma, discrimination and exclusion; and 4) recognition of the possibilities of identity and growth. Overall, this scoping review found a major emphasis on expanding definitions of agency and autonomy to render citizenship unconditional and inclusive of the diverse life experiences of people living with dementia. Notably, there is recognition that a more intersectional lens for embedding the subjective experience within a broader socio-political context is needed. Whilst the adoption of a citizenship lens in dementia research and practice has had real-world implications for policy and research, its exploration and use continue to be led by academics, highlighting the importance that future research involve input form people with dementia.

Creating Dementia-Friendly Communities for Social Inclusion: A Scoping Review.

Aims: This scoping review explores key strategies of creating inclusive dementia-friendly communities that support people with dementia and their informal caregiver. Background: Social exclusion is commonly reported by people with dementia. Dementia-friendly community has emerged as an idea with potential to contribute to cultivating social inclusion. Methods: This scoping review follows the Joanna Briggs Institute scoping review methodology and took place between April and September 2020. The review included a three-step search strategy: (1) identifying keywords from CINAHL and AgeLine; (2) conducting a second search using all identified keywords and index terms across selected databases (CINAHL, AgeLine, MEDLINE, PsycINFO, Web of Science, ProQuest, and Google); and (3) hand-searching the reference lists of all included articles and reports for additional studies. Results: Twenty-nine papers were included in the review. Content analysis identified strategies for creating dementia-friendly communities: (a) active involvement of people with dementia and caregivers (b) inclusive environmental design; (c) public education to reduce stigma and raise awareness; and (d) customized strategies informed by theory. Conclusion: This scoping review provides an overview of current evidence on strategies supporting dementia-friendly communities for social inclusion. Future efforts should apply implementation science theories to inform strategies for education, practice, policy and future research.

The Contribution of Documentation Systems to How Nurses Understand Older People's Cognitive Function in Hospital.

Nurses are central to the care of older people in hospital. One issue of particular importance to the experience and outcomes of hospitalized older people is their cognitive function. This article reports findings from a focused ethnographic study demonstrating how documentation systems-documents and the social processes surrounding their use-contribute to how nurses come to understand the cognitive function of hospitalized older people. We found that documents contribute to nurses' understanding by serving as a frame of reference, by directing assessments, and by constraining communication. The findings highlight the potential to improve the documents nurses use in hospitals.