Resources to Support Decision-Making Regarding End-of-Life Nutrition Care in Long-Term Care: A Scoping Review.

Resources are needed to aid healthcare providers and families in making end-of-life nutrition care decisions for residents living in long-term care settings. This scoping review aimed to explore what is reported in the literature about resources to support decision-making at the end of life in long-term care. Four databases were searched for research published from 2003 to June 2023. Articles included peer-reviewed human studies published in the English language that reported resources to support decision-making about end-of-life nutrition in long-term care settings. In total, 15 articles were included. Thematic analysis of the articles generated five themes: conversations about care, evidence-based decision-making, a need for multidisciplinary perspectives, honouring residents' goals of care, and cultural considerations for adapting resources. Multidisciplinary care teams supporting residents and their families during the end of life can benefit from resources to support discussion and facilitate decision-making.

Employee Experiences Providing Nutritional Care during the COVID-19 Pandemic.

Nutritional care is a critical, yet often overlooked component of quality care in long-term care (LTC) that is linked to culture, socialization, and residents' psychological and physiological well-being. Given that several COVID-19 infection control protocols affected nutritional care, this study aimed to understand employees' experiences of these changes. Seven semi-structured interviews were conducted with Saskatchewan healthcare employees from several disciplines, all of whom had a role in supporting nutritional care in LTC. The resulting interview transcripts were analyzed using reflexive thematic analysis. Three main themes characterized the interviewees' reflections: regression to an institutional mealtime environment, unrealistic expectations, and concern for residents. Given the centrality of nutritional care to quality of life, strategies tailored to support staff in providing relationship-centered nutritional care must be further articulated to maintain standards of care for LTC residents in future outbreaks and epidemics.

Supporting the "hallway residents": a qualitative descriptive study of staff perspectives on implementing the Namaste Care intervention in long-term care.

BACKGROUND: Long-term care (LTC) settings are becoming home to an increasing number of people living with advanced or late-stage dementia. Residents living with advanced dementia represent some of society's most vulnerable and socially excluded populations and are thus at an increased risk of social isolation. A multisensory intervention tailored to this population, Namaste Care, has been developed to improve quality of life for residents living with advanced dementia in LTC homes. To date, limited research has explored the perspectives of staff in implementing the Namaste Care program with an emphasis on social inclusion of residents in Canadian LTC homes. This study aimed to describe the perspectives of LTC staff on the implementation facilitators and barriers of Namaste Care as a program to support the social inclusion of residents living with advanced dementia. METHODS: Using a qualitative descriptive design, semi-structured interviews (n = 12) and focus groups (n = 6) were conducted in two LTC homes in Southern Ontario, Canada, over a 6-month period. Convenience sampling was used to recruit LTC home staff from the two participating sites. Thematic analysis was used to analyze data. RESULTS: LTC staff (n = 46) emphasized the program's ability to recognize the unique needs of residents with advanced dementia, and also stated its potential to facilitate meaningful connections between families and residents, as well as foster care partnerships between staff and families. Findings indicated staff also perceived numerous facilitators and barriers to Namaste Care. In particular, providing staff with dedicated time for Namaste Care and implementing volunteer and family participation in the program were seen as facilitators, whereas the initial perception of the need for extra staff to deliver Namaste Care and identifying times in the day where Namaste Care was feasible for residents, families, and staff, were seen as barriers. CONCLUSIONS: LTC staff recognized the need for formalized programs like Namaste Care to address the biopsychosocial needs of residents with advanced dementia and offer positive care partnership opportunities between staff and family members. Although staffing constraints remain the largest barrier to effective implementation, staff valued the program and made suggestions to build LTC home capacity for Namaste Care.

Evaluation of the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme: a protocol of a cluster randomised control trial.

INTRODUCTION: Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalised palliative programme. Hence, our research team has developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme. The goal of the proposed study is to examine the implementation and effectiveness of the SPA-LTC programme. METHODS AND ANALYSIS: A cross-jurisdictional, effectiveness-implementation type II hybrid cluster randomised control trial design will be used to assess the SPA-LTC programme for 18 LTC homes (six homes within each of three provinces). Randomisation will occur at the level of the LTC home within each province, using a 1:1 ratio (three homes in the intervention and control groups). Baseline staff surveys will take place over a 3-month period at the beginning for both the intervention and control groups. The intervention group will then receive facilitated training and education for staff, and residents and their family members will participate in the SPA-LTC programme. Postintervention data collection will be conducted in a similar manner as in the baseline period for both groups. The overall target sample size will be 594 (297 per arm, 33 resident/family member participants per home, 18 homes). Data collection and analysis will involve organisational, staff, resident and family measures. The primary outcome will be a binary measure capturing any emergency department use in the last 6 months of life (resident); with secondary outcomes including location of death (resident), satisfaction and decisional conflict (family), knowledge and confidence implementing a palliative approach (staff), along with implementation outcomes (ie, feasibility, reach, fidelity and perceived sustainability of the SPA-LTC programme). The primary outcome will be analysed via multivariable logistic regression using generalised estimating equations. Intention-to-treat principles will be used in the analysis. ETHICS AND DISSEMINATION: The study has received ethical approval. Results will be disseminated at various presentations and feedback sessions; at provincial, national and international conferences, and in a series of manuscripts that will be submitted to peer-reviewed, open access journals. TRIAL REGISTRATION NUMBER: NCT039359.

Experiences of Families, Staff, Volunteers, and Administrators With Namaste Care for Persons With Advanced Dementia in Canadian Long-Term Care Homes.

OBJECTIVE: To explore the experiences of the Namaste Care intervention for persons with advanced dementia (ie, moderate and late-stage) in long-term care (LTC). DESIGN: A qualitative descriptive design was used. Staff Carers (eg, personal support worker, nurse, or activity aide) delivered Namaste Care with the support of volunteers in a small group. Activities provided during the Namaste Care sessions to enhance quality of life included massages, aromatherapy, music, and snacks/beverages. SETTING AND PARTICIPANTS: Family carers of residents with advanced dementia, LTC staff, administrators, and volunteers from 2 Canadian LTC homes, located in a midsize metropolitan area, were included. METHODS: Experiences and acceptability of Namaste Care was assessed through semistructured interviews ranging from 30 to 60 minutes following the 6-month study duration period with family carers, LTC staff, administrators, and volunteers. Thematic analysis was used for interview transcripts. RESULTS: A total of 16 family carers and 21 LTC staff, administrators, and volunteers participated in the study. Namaste Care was found to be acceptable and successful in enhancing the quality of life of residents due to collaborative efforts of all group of participants. Families, volunteers, and staff noted positive responses in residents, such as smiling and laughing. The program environment supported the development of relationships within the LTC community, which included families, residents, staff, and volunteers. CONCLUSIONS AND IMPLICATIONS: Namaste Care was perceived by the LTC community as an acceptable intervention for persons with advanced dementia. It was perceived as offering multiple benefits for residents with advanced dementia such as improved communication and mood.

Feasibility and Effects of Namaste Care for Persons with Advanced Dementia in Canadian Long-Term Care Homes.

OBJECTIVE: To evaluate the feasibility and effects of the Namaste Care intervention for persons with advanced dementia (ie, moderate and late-stage) in long-term care (LTC) and their family carers. DESIGN: A pre-posttest study design. Staff carers delivered Namaste Care for residents with the support of volunteers in a small group setting. Activities provided included aromatherapy, music, and snacks/beverages. SETTING AND PARTICIPANTS: Residents with advanced dementia and family carers from 2 Canadian LTC homes, located in a midsize metropolitan area, were included. METHODS: Feasibility was evaluated using a research activity log. Outcome data for residents (ie, quality of life, neuropsychiatric symptoms, pain) and family carers (ie, role stress, quality of family visits) were collected at baseline and 3 and 6 months of the intervention. Descriptive analyses and generalized estimating equations were used for quantitative data. RESULTS: A total of 53 residents with advanced dementia and 42 family carers participated in the study. Mixed findings were found for feasibility as not all intervention targets were met. There was a significant improvement in resident neuropsychiatric symptoms at the 3-month time point only (95% CI -9.39, -0.39; P = .033) and family carer role stress at both time points (3-month 95% CI -37.40, -1.80; P = .031; 6-month 95% CI -48.90, -2.09; P = .033). CONCLUSIONS AND IMPLICATIONS: Namaste Care is an intervention with preliminary evidence of impact. Feasibility findings revealed that not all targets were met as the intended number of sessions were not delivered. Future research should explore how many sessions per week are required to lead to an impact. It is important to assess outcomes for both residents and family carers, and to consider enhancing family engagement in delivering the intervention. Given the promise of this intervention, a large-scale randomized controlled trial with a longer follow-up should be conducted to further evaluate its outcomes.

Exploring the factors influencing meaningful engagement of persons living with advanced dementia through the Namaste Care Program: a qualitative descriptive study.

Background: Meaningful engagement has been described as active participation based on a person's interests, preferences, personhood, or perceived value. It has many benefits for persons living with dementia in long-term care (LTC) homes, including improvement in physical and cognitive function, and mental health. People with advanced dementia continue to need and benefit from inclusion and social contact in LTC, yet there is not a well-developed understanding of how to support this. A tailored intervention called Namaste Care has been shown to be an effective approach to meaningfully engage residents in LTC, decrease behavioral symptoms, and improve their comfort and quality of life. There is a need to consider how best to deliver this intervention. Objective: The aim of this study was to describe environmental, social, and sensory factors influencing meaningful engagement of persons with advanced dementia during Namaste Care implementation in LTC. Methods: In this qualitative descriptive study, focus groups and interviews were conducted with families, volunteers, staff, and managers at two LTC homes. Directed content analysis was conducted. The Comprehensive Process Model of Engagement was used as a coding framework. Results: With respect to environmental attributes, participants emphasized that a designated quiet space and a small group format were helpful for engagement. In terms of social attributes, participants emphasized Namaste Care staff capacity to deliver individualized care. Regarding sensorial factors, familiarity with the activities delivered in the program was emphasized. Conclusion: Findings reveal the need to offer small group programs that include adapted recreational and stimulating activities, such as Namaste Care, for residents at the end of life in LTC. Such programs facilitate meaningful engagement for persons with dementia as they focus on individual preferences, comfort, and inclusion while recognizing changing needs and abilities of residents.

Chart based data as a resource for tracking and improving a person-centred palliative approach in long-term care.

AIMS AND OBJECTIVES: To enhance the practice of a person-centred palliative approach in long-term care. BACKGROUND: Implementing a person-centred palliative approach in long-term care entails placing residents at the centre of care planning that attends to the 'whole' person, rather than prioritising biomedical needs. DESIGN: We conducted a four-stage directed content analysis of long-term care progress notes to meet our study aims and applied the EQUATOR guidelines for qualitative research publication (COREQ). METHODS: We qualitatively analysed 78 resident charts across three long-term care homes in southern Ontario to capture the extent to which person-centred care was absent, initiated or implemented in different types of documented care interactions. RESULTS: Most residents had interactions related to daily care activities (65/78, 83%), social concerns (65/78, 83%) and treatment decisions (53/78, 68%). By contrast, interactions around pain and discomfort (34/78, 44%) and spirituality (27/78, 35%) were documented for less than half of the residents. Almost all (92%) residents had at least one progress note where staff initiated person-centred care by documenting their preference for a certain type of care, but only a third had at least one progress note that suggested their preference was implemented (35%). CONCLUSIONS: While person-centred care is often initiated by nurses and other allied health professionals, changes to care plans to address resident preferences are implemented less often. Nurses and other allied health professionals should be encouraged to elicit care preferences crucial for holistic care planning and equipped with the skills and support to enact collaborative care planning. RELEVANCE TO CLINICAL PRACTICE: Collaborative care planning appears relatively absent in charted progress notes, constraining the full implementation of a person-centred palliative approach to care. PATIENT OR PUBLIC CONTRIBUTION: An advisory group consisting of long-term care resident and staff representatives informed the overall study design and dissemination of the results.

Volunteers' experiences building relationships with long-term care residents who have advanced dementia.

Healthcare volunteers make important contributions within healthcare settings, including long-term care. Although some studies conducted in long-term care have shown that volunteers contribute positively to the lives of people living with advanced dementia, others have raised questions about the potential for increasing volunteers' involvement. The purpose of this study is to understand volunteers' perspectives on their work and relationships with long-term care residents with advanced dementia. A total of 16 volunteers participated in semi-structured interviews about their experiences. Interview data were analyzed using an inductive approach to thematic analysis. In this analysis, a central concept, relationships in dementia care volunteering, enveloped four related themes: mutuality and empathy as the foundation for dementia care relationships with residents, family as the focus of volunteer relationships, relationships shaped by grief, and staff support for volunteer relationships. We conclude that in long-term care settings, volunteer roles and relationship networks are more robust than they are often imagined to be. We recommend that long-term care providers looking to engage volunteers consider training and supporting volunteers to cultivate relationships with residents, family, and staff; navigate experiences of loss; and be considered as members of dementia care teams.

Using a self-directed workbook to support advance care planning with long term care home residents.

BACKGROUND: While advance care planning (ACP) has been shown to improve the quality of end-of-life (EOL) communication and palliative care, it is rarely practiced in long term care (LTC) homes, where staff time to support the process is limited. This study examines the potential of a publicly available self-directed ACP workbook distributed to LTC residents to encourage ACP reflection and communication. METHODS: Recruitment took place across three LTC homes, between June 2018 and July 2019. To be eligible, residents had to have medical stability, cognitive capacity, and English literacy. The study employed a mixed methods concurrent design using the combination of ranked (quantitative) and open (qualitative) workbook responses to examine documented care preferences and ACP reflections and communications. RESULTS: 58 residents initially agreed to participate in the study of which 44 completed self-directed ACP workbooks. Our combined quantitative and qualitative results suggested that the workbooks supported the elicitation of a range of resident care preferences of relevance for EOL care planning and decision making. For example, ranked data highlighted that most residents want to remain involved in decisions pertaining to their care (70%), even though less than half expect their wishes to be applied without discretion (48%). Ranked data further revealed many residents value quality of life over quantity of life (55%) but a sizable minority are concerned they will not receive enough care at EOL (20%). Open comments affirmed and expanded on ranked data by capturing care preferences not explored in the ranked data such as preferences around spiritual care and post mortem planning. Analysis of all open comments also suggested that while the workbook elicited many reflections that could be readily communicated to family/friends or staff, evidence that conversations had occurred was less evident in recorded workbook responses. CONCLUSIONS: ACP workbooks may be useful for supporting the elicitation of resident care preferences and concerns in LTC. Developing follow up protocols wherein residents are supported in communicating their workbook responses to families/friends and staff may be a critical next step in improving ACP engagement in LTC. Such protocols would require staff training and an organizational culture that empowers staff at all levels to engage in follow up conversations with residents.

Intervention Fidelity of a Volunteer-Led Montessori-Based Intervention in a Canadian Long-Term Care Home.

Montessori-based interventions (MBIs) were developed to promote guided participation in meaningful activities by people with dementia patients. In this study, we assessed nursing home volunteers' fidelity to an MBI, relying primarily on a qualitative descriptive design. We completed a deductive content analysis of eight volunteer interviews using the Conceptual Framework for Intervention Fidelity. We also calculated average volunteer and resident scores on the Visiting Quality Questionnaire (VQQ), which assesses volunteers' and residents' perceptions of visits. We found good evidence that volunteers attended scheduled visits, made use of pre-designed activities, and attended to training recommendations. Most reported enjoying the visits (VQQ $ \overline{x} $ = 6.12, standard deviation [SD] = 0.75) and receiving a positive response from residents (VQQ $ \overline{x} $ = 5.46, SD = 0.88). Nevertheless, use of pre-designed activities and response to the MBI was lower for volunteers working with residents who had late-stage dementia. Therefore, overall, fidelity depended on the cognitive status of the resident.

The effects of a Namaste care program on quality of life: A pilot study in Iranian women with late-stage Alzheimer's disease.

The current study aimed to investigate the effects of a Namaste care program on the quality of life of 25 women with late-stage Alzheimer's disease. The program was implemented two hours daily and four days per week for six months in a nursing facility, Tehran, Iran. Women's quality of life was measured using the Persian version of the Quality of Life in Late-Stage Dementia scale before and after the program implementation. After a six-month intervention with the Namaste care program, the total score of quality of life significantly decreased (17.79 ± 1.10 at the end of trial compared with 24.67 ± 1.62 at baseline, P = 0.01), indicating improved quality of life. This effect was obtained after controlling for demographic variables and comorbidities. Hence, it seems that the Namaste care program might be an effective supportive method to improve the quality of life of women with late-stage Alzheimer's disease in Iranian culture. However, further large-sample studies are needed to investigate the generalizability of the findings.

A pilot evaluation of the Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) program.

BACKGROUND: Despite increased annual mortality in long-term care (LTC) homes, research has shown that care of dying residents and their families is currently suboptimal in these settings. The purpose of this study was to evaluate resident and family outcomes associated with the Strengthening a Palliative Approach in LTC (SPA-LTC) program, developed to help encourage meaningful end of life discussions and planning. METHODS: The study employs a mixed method design in four LTC homes across Southern Ontario. Data were collected from residents and families of the LTC homes through chart reviews, interviews, and focus groups. Interviews with family who attended a Palliative Care Conference included both closed-ended and open-ended questions. RESULTS: In total, 39 residents/families agreed to participate in the study. Positive intervention outcomes included a reduction in the proportion of emergency department use at end of life and hospital deaths for those participating in SPA-LTC, improved support for families, and increased family involvement in the care of residents. For families who attended a Palliative Care Conference, both quantitative and qualitative findings revealed that families benefited from attending them. Residents stated that they appreciated learning about a palliative approach to care and being informed about their current status. CONCLUSIONS: The benefits of SPA-LTC for residents and families justify its continued use within LTC. Study results also suggest that certain enhancements of the program could further promote future integration of best practices within a palliative approach to care within the LTC context. However, the generalizability of these results across LTC homes in different regions and countries is limited given the small sample size.

Evaluating the feasibility and acceptability of the Namaste Care program in long-term care settings in Canada.

BACKGROUND: Residents living and dying in long-term care (LTC) homes represent one of society's most frail and marginalized populations of older adults, particularly those residents with advanced dementia who are often excluded from activities that promote quality of life in their last months of life. The purpose of this study is to evaluate the feasibility, acceptability, and effects of Namaste Care: an innovative program to improve end-of-life care for people with advanced dementia. METHODS: This study used a mixed-method survey design to evaluate the Namaste Care program in two LTC homes in Canada. Pain, quality of life, and medication costs were assessed for 31 residents before and 6 months after they participated in Namaste Care. The program consisted of two 2-h sessions per day for 5 days per week. Namaste Care staff provided high sensory care to residents in a calm, therapeutic environment in a small group setting. Feasibility was assessed in terms of recruitment rate, number of sessions attended, retention rate, and any adverse events. Acceptability was assessed using qualitative interviews with staff and family. RESULTS: The feasibility of Namaste Care was acceptable with a participation rate of 89%. However, participants received only 72% of the sessions delivered and only 78% stayed in the program for at least 3 months due to mortality. After attending Namaste Care, participants' pain and quality of life improved and medication costs decreased. Family members and staff perceived the program to be beneficial, noting positive changes in residents. The majority of participants were very satisfied with the program, providing suggestions for ongoing engagement throughout the implementation process. CONCLUSIONS: These study findings support the implementation of the Namaste Care program in Canadian LTC homes to improve the quality of life for residents. However, further testing is needed on a larger scale.

Fall Prevention Program Characteristics and Experiences of Older Adults and Program Providers in Canada: A Thematic Content Analysis.

Objectives: To document the characteristics of fall prevention programs in specific regions in two Canadian provinces and to explore older adults' and program providers' experiences with these programs. Methods: Semi-structured interviews were conducted with 16 program providers/managers from 12 different programs. Ten semi-structured focus groups were conducted with 59 older adults. Data were analyzed using thematic content analysis. Results: Older adults reported functional and social benefits. Program providers identified barriers to program success, including cognitive impairment, frailty, and lack of motivation. The need for general attitudinal changes toward older adults' needs and broader community changes were identified as important by the older adults. Discussion: Easily accessible information about fall prevention programs for older adults and no-cost, ongoing initiatives were critical. Health care providers play keys roles in disseminating information, facilitating referrals, and advocating for initiatives that best meet the needs of older adults in their communities.

Using Normalization Process Theory to Evaluate the Implementation of Montessori-Based Volunteer Visits Within a Canadian Long-Term Care Home.

BACKGROUND AND OBJECTIVES: Montessori-based interventions (MBIs) have potential to improve the life quality of long-term care residents with dementia. In this study, we aimed to understand the processes by which staff integrated a volunteer-led MBI into practice within a special dementia care unit, and to explore staff members ' perceptions of associated strengths and limitations. RESEARCH DESIGN AND METHODS: This study relied on a qualitative descriptive design. Following a 3-month period of volunteer involvement, we conducted 21 interviews with staff members to document perceptions of the new program and subjected interview transcripts to qualitative content analysis, guided by normalization process theory. RESULTS: During the implementation of the volunteer-led MBI, staff members developed a shared understanding of the intervention, a sense of commitment, practical ways to support the intervention, and opinions about the value of the residents. Overall, we found that the volunteer-led MBI was quickly and successfully integrated into practice and was perceived to support both residents and staff members in meaningful ways. Nevertheless, some limitations were also identified. DISCUSSION AND IMPLICATIONS: Volunteer-delivered MBIs are a useful adjunct to practice within a special dementia care unit. This article raises attention to some strengths and limitations associated with this approach.

Psychometric Evaluation of the Korean Version of the Personhood in Dementia Questionnaire Using Rasch Analysis.

There is an increasing awareness of the need to promote behaviors consistent with the understanding that individuals with dementia deserve adequate respect. Person-centered attitudes on the part of a care facility's staff can affect care practices and relationships with residents. This study examined the psychometric properties of the Korean version of the Personhood in Dementia Questionnaire (KPDQ), which measures staff's person-centered attitudes toward individuals with dementia. The KPDQ was translated and adapted based on commonly used guidelines from the World Health Organization. For psychometric testing, the data obtained from a total of 269 participants in 13 long-term care facilities were analyzed. Factor analysis, item fit, convergent validity, and known-group validity were examined. Reliability and differential item functioning (DIF) based on Rasch analysis were also assessed. The KPDQ consists of 20 items with three subscales ("agency", "respect for personhood" and "psychosocial engagement"). Item fit statistics indicated that each item fits well with the underlying construct. The KPDQ demonstrated satisfactory convergent validity, known-group validity and internal consistency reliability. There was no DIF by subgroup according to age or educational status. Results indicated that the KPDQ is a reliable and valid tool for measuring long-term care staff's beliefs about personhood.

Palliative Care Models in Long-Term Care: A Scoping Review.

OBJECTIVE: The goal of this scoping review was to identify existing palliative models in long-term care (LTC) homes and differentiate between the key components of each in terms of training/capacity-building strategies; resident, family and staff support; and advance care planning (ACP) and goals-of-care discussions. METHODS: We conducted a scoping review based on established methods to summarize the international literature on palliative models and programs for LTC. We analyzed the data using tabular summaries and content analysis. RESULTS: We extracted data from 46 articles related to palliative programs, training/capacity building, family support, ACP and goals of care. Study results highlighted that three key components are needed in a palliative program in LTC: (1) training and capacity building; (2) support for residents, family and staff; and (3) ACP, goals-of-care discussion and informed consent. CONCLUSION: This scoping review provided important information about key components to be included in a palliative program in LTC. Future work is needed to develop a model that suits the unique characteristics in the Canadian context.

A Stakeholder Analysis of the Strengthening a Palliative Approach in Long-Term Care Model.

OBJECTIVE: The purpose of this study was to conduct a stakeholder analysis of the strengthening a palliative approach to long-term care (SPA-LTC) model and refine it based on feedback from long-term care (LTC) residents and their families, staff, researchers and decision makers. METHODS: We used a mixed-methods design to conduct a stakeholder analysis of the SPA-LTC model that consisted of two sequential components: qualitative focus groups with LTC staff followed by a quantitative survey with key stakeholders. RESULTS: Twenty-one LTC staff provided feedback about the SPA-LTC model after residents relocated to LTC, during advanced illness and at end of life and in the period of grief and bereavement. This feedback helped to guide revisions of the model. According to the survey results, the SPA-LTC model was well received by 35 stakeholders, but its feasibility was questioned. CONCLUSION: The Canadian SPA-LTC model is evidence based and endorsed by LTC staff and stakeholders. Efforts are needed to determine the feasibility of implementing the model to ensure that residents' needs are made a priority while in LTC.

Perspectives and experiences of compassion in long-term care facilities within Canada: a qualitative study of patients, family members and health care providers.

INTRODUCTION: This paper details a subset of the findings from a participatory action research project exploring a palliative intervention in long-term care sites across Canada. The findings presented in this paper relate to understanding compassion within the context of a palliative approach to long-term care. METHODS: Findings presented are drawn from qualitative interviews and focus groups with residents, family members, healthcare providers, and managers from 4 long-term care sites across 4 provinces in Canada. In total, there were 117 individuals (20 residents, 16 family members, 72 healthcare providers, and 9 managers) who participated in one of 19 focus groups. Data was analyzed by multiple members of the research team in accordance with thematic analysis. Individual concepts were organized into themes across the different focus groups and the results were used to build a conceptual understanding of compassion within Long Term Care . FINDINGS: Two themes, each comprised of 5 sub-themes, emerged from the data. The first theme 'Conceptualizing Compassion in Long-Term Care generated a multidimensional understanding of compassion that was congruent with previous theoretical models. 'Organizational Compassion: resources and staffing', the second major theme, focused on the operationalization of compassion within the practice setting and organizational culture. Organizational Compassion subthemes focused on how compassion could support staff to enact care for the residents, the families, one another, and at times, recognizing their pain and supporting it through grief and mourning. CONCLUSIONS: Results suggest that compassion is an essential part of care and relationships within long-term care, though it is shaped by personal and professional relational aspects of care and bound by organizational and systemic issues. Findings suggest that compassion may be an under-recognised, but essential element in meeting the promise of person-centred care within long-term care environments.