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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.
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Demência , Participação do Paciente , Assistência Terminal , Humanos , Demência/terapia , Demência/psicologia , Assistência Terminal/psicologia , Cuidadores/psicologia , Pesquisadores/psicologia , Entrevistas como Assunto , Reino Unido , Canadá , Assistência de Longa Duração , Cuidados Paliativos/psicologia , Comportamento Cooperativo , Países Baixos , Participação da Comunidade , FemininoRESUMO
BACKGROUND: Namaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted version of the Namaste Care program, which was called Meaningful Moments. The aim of this study was to assess the acceptability and preliminary effects of this novel approach using trained volunteers for older adults with mid- to late-stage dementia. METHODS: A mixed methods multiphase design was used. Qualitative description was used to explore acceptability of the Meaningful Moments program delivered over 6 months through focus groups (e.g., charge nurses, therapeutic recreationists, nurses, social workers) and individual interviews with one volunteer and two family members. A prospective pre-post-test study design was used to evaluate the preliminary effects of the program for patients with dementia and family members. Outcomes included quality of life, neuropsychiatric symptoms, and pain for patients with dementia and family carer role stress and the quality of visits for families. Data were collected from June 2018 to April 2019. Descriptive analyses of participants' characteristics were expressed as a mean (standard deviation [SD]) for continuous variables and count (percent) for categorical variables. Focus group and individual interview data were analyzed using thematic analysis. The generalized estimating equations (GEE) method was used to assess change in the repeated measures outcome data. RESULTS: A total of 15 patients received the Meaningful Moments interventions. Families, staff, and volunteers perceived that patients experienced benefits from Meaningful Moments. Staff, volunteers, and families felt fulfilled in their role of engaging patients in the Meaningful Moments program. Individualized activities provided by volunteers were perceived as necessary for the patient population. There were no statistically significant improvements in patient outcomes. There was a statistically significant decline in family carer role stress. CONCLUSIONS: Using a one-on-one approach by volunteers, patients experienced perceived benefits such as improved mood and opportunities for social interactions. There is a need for tailored activities for older adults with advanced dementia through practical strategies that can offer benefit to patients.
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Demência , Voluntários , Humanos , Demência/terapia , Demência/psicologia , Masculino , Feminino , Idoso , Idoso de 80 Anos ou mais , Voluntários/psicologia , Estudos Prospectivos , Cuidadores/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Qualidade de Vida/psicologia , Pessoa de Meia-IdadeRESUMO
OBJECTIVES: Due to the rise of the nurse practitioner (NP) role in long-term care settings, it is important to understand the underlying structures and processes that influence NP and physician care models. This scoping review aims to answer the question, "What are the structures, processes, and outcomes of care models involving NPs and physicians in long-term care (LTC) homes?" A secondary aim was to describe the structural enablers and barriers across care models. RESEARCH DESIGN AND METHODS: Seven databases were searched. Studies that described NPs and physicians working in LTC were identified and included in the review. We stratified the findings by care model and synthesized using the Donabedian model, which evaluates health care quality based on 3 dimensions: structure, process, and outcome. We then categorized macro, meso, and micro structural enablers and barriers. RESULTS: Sixty papers were included in the review. The main structural influencers within 5 care models included policies on scope of practice, clarity of role description, and workload. A limited number of papers referred to the process of enabling the development of a working relationship. Thirty-five (49%) studies described resident, staff, and health system outcomes. CONCLUSIONS AND IMPLICATIONS: Although structural characteristics of NP and physician care models are described in-depth, there is less detail on the processes that occur within the NP and physician care models. We highlight structural barriers and enablers within the care models, allowing for recognition of the importance of organizational influence on the NP and physician relationship. Future work should focus on the processes of the relationships in the models by identifying the drivers and initiators of collaboration between NPs and physicians and how these relationships influence outcomes.
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Background: Residents in long-term care homes (LTCHs) are often diagnosed with chronic, life-limiting illnesses, and it is now a common site to provide high levels of care and eventual death. There is an urgent need to address communication gaps and uncertainties surrounding resident's end of life preferences. Nurses are well situated to be key facilitators of necessary advance care planning (ACP), ensuring residents have discussions with family, substitute decision-makers and healthcare providers regarding future health and personal care preferences. However, LTCHs present unique challenges for nurses due to not only complex comorbidities but also staffing dynamics. Purpose: This study explored the experiences and perceptions of Registered Nurses (RNs) and Registered Practical Nurse (RPNs) in LTCHs regarding their role in engaging residents and families in ACP discussions. Methods: Qualitative interpretive descriptive methodology was used. Data were collected from two LTCHs in Southern Ontario with a sample of 15 nurses (7 RNs and 8 RPNs). Analysis involved review of semistructured interviews, field notes, and utilizing constant comparison within an inductive approach. Results: Power and authority dynamics in LTCH's was an overarching theme in the data, with four subthemes: (1) Nurses lacking clarity about ACP, (2) nurses' uncertainty regarding their role in ACP, (3) nurses feeling uncomfortable engaging in ACP discussions, and (4) nurses struggling to support families in ACP discussions. Conclusion: Recommendations for nurses, healthcare providers, LTCH administrators, and policy makers include: (1) development of policies which support, from a systemic level, nurses to feel safe while engaging in ACP; (2) reassessing LTCH's hierarchical structure, and clarifying RN, RPN, and interdisciplinary team members roles in ACP; (3) developing culture change that allows a team and person-centered approach to ACP; and (4) providing ongoing education and mentorship for nurses to manage family dynamics and expand their understanding of ACP beyond a biomedical lens.
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BACKGROUND: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. AIM: To develop a multidimensional international palliative care goals model in dementia for use in practice. DESIGN: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. SETTING/PARTICIPANTS: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. RESULTS: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. CONCLUSION: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.
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Planejamento Antecipado de Cuidados , Demência , Humanos , Cuidados Paliativos , Consenso , Objetivos , Técnica DelphiRESUMO
Objective: To explore the impact of a 2-day, in-person interprofessional palliative care course for staff working in long-term care (LTC) homes. Methods: A qualitative descriptive study design was employed. LTC staff who had participated in Pallium Canada's Learning Essential Approaches to Palliative Care LTC Course in Ontario, Canada between 2017 and 2019 were approached. Semi-structured interviews were conducted, using an online videoconferencing platform in mid-2021 in Ontario, Canada. These were done online, recorded, and transcribed. Data were coded inductively. Results: Ten persons were interviewed: four registered practical nurses, three registered nurses, one nurse practitioner, and two physicians. Some held leadership roles. Participants described ongoing impact on themselves and their ability to provide end-of-life (EOL) care (micro-level), their services and institutions (meso-level), and their healthcare systems (macro-level). At a micro-level, participants described increased knowledge and confidence to support residents and families, and increased work fulfillment. At the meso-level, their teams gained increased collective knowledge and greater interprofessional collaboration to provide palliative care. At the macro level, some participants connected with other LTC homes and external stakeholders to improve palliative care across the sector. Training provided much-needed preparedness to respond to the impact of the COVID-19 pandemic, including undertaking advance care planning and EOL conversations. The pandemic caused staff burnout and shortages, creating challenges to applying course learnings. Significance of results: The impact of palliative care training had ripple effects several years after completing the training, and equipped staff with key skills to provide care during the COVID-19 pandemic. Palliative care education of staff remains a critical element of an overall strategy to improve the integration of palliative care in LTC.
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BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.
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Planejamento Antecipado de Cuidados , Cuidadores , Demência , Casas de Saúde , Humanos , Casas de Saúde/organização & administração , Cuidadores/psicologia , Assistência Terminal , República Tcheca , Canadá , Países Baixos , Itália , Reino Unido , Masculino , Idoso , Tomada de Decisões , Feminino , IrlandaRESUMO
BACKGROUND: The consensus among Canadians with regards to end-of-life preferences is that with adequate support the majority prefer to live and die at home. PURPOSE: To compare quality indicator (QI) rates for home care clients receiving palliative and end-of-life care prior to and after the onset of the COVID-19 pandemic. METHODS: A retrospective population-based cohort design was used. Sixteen QIs informed by existing literature and a preliminary set of QIs recently evaluated by a modified Delphi panel were compared. Data were obtained from the interRAI Palliative Care instrument for Ontario home care clients for two separate cohorts: the pre-COVID (January 14, 2019 to March 16, 2020) and COVID cohort (March 17, 2020 to May 18, 2021). A propensity score analysis was used to match (using nearest neighbour matching) on 21 covariates, resulting in a sample size of 2479 unique interRAI Palliative Care assessments in each cohort. Alternative propensity score methods were explored as part of a sensitivity analysis. RESULTS: After matching the pre-COVID and COVID cohorts, five of the 16 QIs had statistically significant differences in the QI rates (change from pre-COVID to COVID): decrease in prevalence of severe or excruciating daily pain (p = 0.03, effect size=-0.08), decrease in prevalence of caregiver distress (p = 0.02, effect size=-0.06), decrease in prevalence of negative mood (p = 0.003, effect size=- 0.17), decrease in prevalence of a delirium-like syndrome (p = 0.001, effect size=-0.25) and decrease in prevalence of nausea or vomiting (p = 0.04, effect size=-0.06). While the alternative propensity score methods produced slightly different results, no clinically meaningful differences were seen between the cohorts when effect sizes were examined. All methods were in agreement regarding the highest QI rates, which included the prevalence of shortness of breath with activity, no advance directives, and fatigue. CONCLUSION: This study is the first to examine differences in QI rates for home care clients receiving palliative and end-of-life care before and during COVID in Ontario. It appears that QI rates did not change over the course of the pandemic in this population. Future work should be directed to understanding the temporal variation in these QI rates, risk-adjusting the QI rates for further comparison among jurisdictions, provinces, and countries, and in creating benchmarks for determining acceptable rates of different QIs.
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COVID-19 , Serviços de Assistência Domiciliar , Assistência Terminal , Humanos , Pandemias , Indicadores de Qualidade em Assistência à Saúde , Estudos Retrospectivos , COVID-19/epidemiologia , Ontário/epidemiologia , Dor/epidemiologia , Morte , Cuidados Paliativos/métodosAssuntos
Rios , Cuidado Transicional , Humanos , Idoso , Hospitais , Equipe de Assistência ao PacienteRESUMO
The purpose of this study was to examine the perspectives of support staff, health care professionals, and care coordinators working in or referring to a community-based, slow-stream rehabilitation, hospital-to-home transition program regarding gaps in services, and barriers and facilitators related to implementation and functioning of the program. This was a qualitative descriptive study. Recruitment was conducted through purposive sampling, and 23 individuals participated in a focus groups or individual semi-structured interview. Transcripts were analyzed by six researchers using inductive thematic analysis. Themes that emerged were organized based on a socio-ecological framework. Themes were categorized as: (1) macro level, meaning gaps while waiting for program, limited program capacity, and gaps in service post-program completion; (2) meso level, meaning lack of knowledge and awareness of the program, lack of specific referral process and procedures, lack of specific eligibility criteria, and need for enhanced communication among care settings; or (3) micro level, meaning services provided, program participant benefits, person-centred communication, program structure constraints, need for use of outcome measures, and follow-up or lack of follow-up. Implementation of seamless patient information sharing, documentation, use of specific referral criteria, and use of standardized outcome measures may reduce the number of unsuitable referrals and provide useful information for referral and program staff.
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Rios , Cuidado Transicional , Humanos , Idoso , Pesquisa Qualitativa , Equipe de Assistência ao Paciente , HospitaisRESUMO
BACKGROUND AND OBJECTIVES: Strategies to manage the coronavirus disease 2019 (COVID-19) pandemic included widespread use of physical distancing measures. These well-intended strategies adversely affected long-term care (LTC) residents' socialization and their caregiving arrangements, leading to exacerbation of social isolation and emotional distress for both residents and their caregivers. This study aimed to understand how these measures affected informal caregivers of people living in LTC homes in Ontario. Strategies to increase socialization and promote social connection during and post-COVID-19 were also explored. RESEARCH DESIGN AND METHODS: This qualitative study used descriptive and photovoice approaches. Of the 9 potential caregivers identified, 6 participated in the study and shared their experiences and photographic reflections in virtual focus group sessions. RESULTS: Findings highlighted the increased social isolation experienced by people living in LTC and their caregivers during COVID-19. Caregivers reported pronounced declines in residents' well-being and were frustrated by challenges connecting with their family members during quarantine. Attempts made by LTC homes to maintain social connections, such as window visits and video calls, did not fulfill the social needs of residents and their caregivers. DISCUSSION AND IMPLICATIONS: Findings underscore a need for better social support and resources for both LTC residents and their caregivers going forward to prevent further isolation and disengagement. Even in times of lockdown, LTC homes must implement policies, services, and programs that promote meaningful engagement for older adults and their families.
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COVID-19 , Assistência de Longa Duração , Humanos , Idoso , Assistência de Longa Duração/psicologia , COVID-19/epidemiologia , Cuidadores/psicologia , Controle de Doenças Transmissíveis , Apoio SocialRESUMO
OBJECTIVES: Acceptance and commitment therapy (ACT) is a relatively new type of psychotherapy effective for treating depression and anxiety amongst family care partners of persons living with dementia [PLWD]. However, care partner engagement in mental health services is low and specific guidelines for designing ACT programs for care partners of PLWD do not exist. The purpose of this scoping review was to examine patterns in care partner engagement in ACT programs to identify program factors potentially influencing engagement. METHODS: A comprehensive scoping review according to Arksey and O'Malley's framework was followed. Databases and grey literature were searched for primary studies of ACT programs with care partners of PLWD. Data were charted and synthesized. RESULTS: Ten studies met inclusion criteria and were analyzed. Amongst these, engagement was highest in three ACT programs that were delivered individually, remotely and were therapist-led or supported. Conversely, engagement was the lowest in two ACT programs that were self-directed, web-based and had minimal or no care partner-therapist interaction. Program factors perceived as influencing engagement included tailoring and personalization, mode of delivery and format, therapeutic support and connectedness, program duration and pace. CONCLUSION: Findings from this review suggest that care partners engagement may be promoted by designing ACT programs that focus on the therapeutic client-therapist relationship, are delivered remotely and individually. Future research should focus on evaluation of best implementation practices for engagement and effectiveness.
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Terapia de Aceitação e Compromisso , Cuidadores , Demência , Humanos , Demência/terapia , Cuidadores/psicologia , Terapia de Aceitação e Compromisso/métodos , Depressão/terapiaRESUMO
Background: The COVID-19 pandemic has disrupted the healthcare and public health sectors. The impact of working on the frontlines as a healthcare or public health professional has been well documented. Healthcare organizations must support the psychological and mental health of those responding to future public health emergencies. Objective: This systematic review aims to identify effective interventions to support healthcare workers' mental health and wellbeing during and following a public health emergency. Methods: Eight scientific databases were searched from inception to 1 November 2022. Studies that described strategies to address the psychological impacts experienced by those responding to a public health emergency (i.e., a pandemic, epidemic, natural disaster, or mass casualty event) were eligible for inclusion. No limitations were placed based on study design, language, publication status, or publication date. Two reviewers independently screened studies, extracted data, and assessed methodological quality using the Joanna Briggs Institute critical appraisal tools. Discrepancies were resolved through discussion and a third reviewer when needed. Results were synthesized narratively due to the heterogeneity of populations and interventions. Outcomes were displayed graphically using harvest plots. Results: A total of 20,018 records were screened, with 36 unique studies included in the review, 15 randomized controlled trials, and 21 quasi-experimental studies. Results indicate that psychotherapy, psychoeducation, and mind-body interventions may reduce symptoms of anxiety, burnout, depression, and Post Traumatic Stress Disorder, with the lowest risk of bias found among psychotherapy interventions. Psychoeducation appears most promising to increase resilience, with mind-body interventions having the most substantial evidence for increases in quality of life. Few organizational interventions were identified, with highly heterogeneous components. Conclusion: Promoting healthcare workers' mental health is essential at an individual and health system level. This review identifies several promising practices that could be used to support healthcare workers at risk of adverse mental health outcomes as they respond to future public health emergencies.Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=203810, identifier #CRD42020203810 (PROSPERO).
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Saúde Pública , Qualidade de Vida , Humanos , Pandemias , Emergências , Pessoal de Saúde/psicologiaRESUMO
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.
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Demência , Assistência de Longa Duração , Humanos , Qualidade de Vida , Pesquisa Qualitativa , Demência/epidemiologia , Demência/terapia , Demência/psicologia , Ontário/epidemiologiaRESUMO
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.
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Assistência de Longa Duração , Casas de Saúde , Humanos , Motivação , Coleta de Dados , Cuidados Paliativos , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
Introduction: Shortened hospital stays have shifted the burden of care for older adults to community, informal (ie, family, caregiver) and formal post-acute care and services, highlighting the need for effective post-hospital stay services and programs. As there is a dearth of information related to community-based, slow-stream rehabilitation program models for older adults transitioning from hospital to home in the Canadian context, the paper describes a mixed methods evaluation of such a program. Materials and Methods: A mixed methods program evaluation, with process- and outcome-related elements, included 1) review and analysis of program documents; 2) observations to examine fidelity. Observation data were coded and summarized using descriptive statistics. Coded information and data were compared to document review data; 3) quantitative assessment of pre-post changes in physical, social, and psychological outcome measure and instrument scores using descriptive statistics, paired t-tests and confidence intervals (p = 0.05); and 4) exploration of acceptability through interviews and focus groups with 41 of the older adult participants and 17 family caregivers. Thematic analysis was used to examine focus group and interview transcripts. Results: Observational data indicated alignment with the program document information overall. Statistically and clinically significant positive trends in improvement for physical outcome measure scores were observed (6-minute Walk Test, Life Space Assessment, Short Physical Performance Battery, Rapid Assessment of Physical Activity). Participants and family caregivers identified several positives and benefits of the program, ie, improvement in physical, social and mental well-being, decreased caregiver burden; and areas for improvement ie, need for more information about the program prior to enrollment and individualization, several of which aligned with the observation and quantitative data. Discussion/Conclusion: This mixed methods program evaluation provided a detailed description of a community-based, slow-stream rehabilitation program for older adults who are transitioning to home post-hospital stay and its participants. Evidence of program fidelity, acceptability, and positive trends in improvement in physical outcome measure scores were found. Information about program strengths and areas for improvement can be used by stakeholders to inform program refinement and enhancement.
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Transição do Hospital para o Domicílio , Rios , Humanos , Idoso , Avaliação de Programas e Projetos de Saúde , Canadá , Hospitais , Cuidadores/psicologiaRESUMO
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.
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BACKGROUND: A disproportionate number of COVID-19-related deaths in Canada occurred in long-term care homes, affecting residents, families and staff alike. This study explored the experiences of long-term care clinicians with respect to providing palliative and end-of-life care during the COVID-19 pandemic. METHODS: We used a qualitative research approach. Long-term care physicians and nurse practitioners (NPs) in Ontario, Canada, participated in semistructured interviews between August and September of 2021. Interviews were undertaken virtually, and results were analyzed using thematic analysis. RESULTS: Twelve clinicians (7 physicians and 5 NPs) were interviewed. We identified 5 themes, each with several subthemes: providing a palliative approach to care, increased work demands and changing roles, communication and collaboration, impact of isolation and visitation restrictions, and impact on the providers' personal lives. Clinicians described facing several concurrent challenges, including the uncertainty of COVID-19 illness, staffing and supply shortages, witnessing many deaths, and distress caused by isolation. These resulted in burnout and feelings of moral distress. Previous training and integration of the palliative care approach in the long-term care home, access to resources, increased communication and interprofessional collaboration, and strong leadership mitigated the impact and led to improved palliative care and a sense of pride while facing these challenges. INTERPRETATION: The pandemic had a considerable impact on clinicians caring for residents in long-term care homes at the end of life. It is important to address these lived experiences and use the lessons learned to identify strategies to improve palliative care in long-term care homes and reduce the impact of future pandemics with respect to palliative care.
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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.
Assuntos
Demência , Assistência de Longa Duração , Humanos , Qualidade de Vida , Estudos de Viabilidade , Demência/psicologia , Canadá , Cuidadores/psicologiaRESUMO
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.