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BACKGROUND: Substitute decision-makers (SDMs) make decisions that honor medical, personal, and end-of-life wishes for older adults who have lost capacity, including those with dementia. However, SDMs often lack support, information, and problem-solving tools required to make decisions and can suffer with negative emotional, relationship, and financial impacts. The need for adaptable supports has been identified in prior meta-analyses. This scoping review identifies evidence-based decision-making resources/tools for SDMs, outlines domains of support, and determines resource/tool effectiveness and/or efficacy. METHODS: The scoping review used the search strategy: Population-SDMs for older adults who have lost decision-making capacity; Concept-supports, resources, tools, and interventions; Context-any context where a decision is made on behalf of an adult (>25 years). Databases included MEDLINE, Embase, CINAHL, PsycINFO, and Abstracts in Social Gerontology and SocIndex. Tools were scored by members on the research team, including patient partners, based on domains of need previously identified in prior meta-analyses. RESULTS: Two reviewers independently screened 5279 citations. Articles included studies that evaluated a resource/tool that helped a family/friend/caregiver SDMs outside of an ICU setting. 828 articles proceeded onto full-text screening, and 25 articles were included for data extraction. The seventeen tools identified focused on different time points/decisions in the dementia trajectory, and no single tool encompassed all the domains of caregiver decision-making needs. CONCLUSION: Existing tools may not comprehensively support caregiver needs. However, combining tools into a toolkit and considering their application relevant to the caregiver's journey may start to address the gap in current supports.
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Competencia Mental , Humanos , Anciano , Toma de Decisiones , Técnicas de Apoyo para la Decisión , Demencia/psicologíaRESUMEN
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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Cuidados a Largo Plazo , Casas de Salud , Humanos , Motivación , Recolección de Datos , Cuidados Paliativos , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
This interpretative, qualitative study explored residents' and families' perspectives on advance care planning (ACP) in long-term care (LTC). Perspectives on when, how, and with whom ACP discussions should be introduced and barriers and solutions to improving ACP engagement were examined. Fifty-one residents and families participated in seven focus groups. The findings revealed that residents and families prioritized caring connections over professional rank when reflecting on staff involvement in ACP. The findings further revealed that the caring and compassionate environment considered to be a critical pre-condition for ACP engagement was more typically enacted at end of life when ACP was no longer an option. Our findings suggest that work practices and organizational structures within LTC play an important role in inhibiting ACP engagement.
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Planificación Anticipada de Atención , Cuidado Terminal , Grupos Focales , Humanos , Cuidados a Largo Plazo , Investigación CualitativaRESUMEN
BACKGROUND: Providing support is important to maintain a patient on peritoneal dialysis (PD), though its impact on outcomes has not been investigated thoroughly. We examined the association between having support and risk of a transfer to hemodialysis. METHODS: In this retrospective observational cohort study, we used data captured in the Dialysis Measurement Analysis and Reporting system about patients who started PD in Alberta, Canada, between 1 January 2013 and 30 September 2018. Support was defined as the availability of a support person in the home who was able, willing and available to provide support for PD in the patient's residence. The outcome of interest was a transfer to hemodialysis for at least 90 days. We estimated the cumulative incidence of a transfer over time accounting for competing risks and hazard ratios to summarise the association between support and a transfer. We split follow-up time as hazard ratios varied over time. RESULTS: Six hundred and eighty-three incident PD patients, median age 58 years (IQR: 47-68) and 35% female, were followed for a median of 15 months. The cumulative incidence of a transfer to hemodialysis at 24 months was 26%. Having support was associated with a reduced risk of a transfer between 3 and 12 months after the start of dialysis (HR3-12mo: 0.44; 95% CI: 0.25-0.78), but not earlier (hazard ratio (HR)<3mo: 0.96; 95% confidence interval (CI): 0.55-1.69) or later (HR>12mo: 1.19; 95% CI: 0.65-2.17). CONCLUSIONS: A transfer to hemodialysis is common. Having a support person at home is associated with a short-term protective effect after the initiation of PD.
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Fallo Renal Crónico , Diálisis Peritoneal , Alberta/epidemiología , Estudios de Cohortes , Femenino , Humanos , Fallo Renal Crónico/terapia , Masculino , Persona de Mediana Edad , Diálisis Renal , Estudios Retrospectivos , Factores de RiesgoRESUMEN
AIM: The aim of this study is to understand the concept of clinical leadership and clinical leadership development for nurses working with older adults in long-term care health care facilities. BACKGROUND: In Canada, clinical care within long-term care is undertaken by registered nurses and licenced practical nurses working with health care aides. Effective clinical leadership is essential for providing quality nursing care. EVALUATION: An integrative literature review using the framework of Whittemore and Knafl (2005). All selected articles were quality appraised using the Critical Appraisal Skills Program and the accuracy, authority, coverage, objectivity, date and significance checklist. KEY ISSUES: The analysis resulted in four themes: ambiguous definitions, practice-based and value-driven care, the impact of clinical leadership and clinical leadership development for Canadian nurses. CONCLUSION: The findings suggest that ambiguity surrounds the concept of clinical leadership, with the term denoting both 'management' as a formal administrative role and 'leadership' in general. More recently, the clinical leadership focus has been on informal leadership by nurses at the bedside, where personal and professional values align with clinical action. IMPLICATIONS FOR NURSING MANAGEMENT: Effective clinical leadership can have a positive impact on quality care and employee job satisfaction.
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Liderazgo , Cuidados a Largo Plazo , Anciano , Canadá , Atención a la Salud , Humanos , Satisfacción en el TrabajoRESUMEN
BACKGROUND: Optimal supportive end of life care for frail, older adults in long term care (LTC) homes involves symptom management, family participation, advance care plans, and organizational support. This 2-phase study aimed to combine multi-disciplinary opinions, build group consensus, and identify the top interventions needed to develop a supportive end of life care strategy for LTC. METHODS: A consensus-building approach was undertaken in 2 Phases. The first phase deployed modified Delphi questionnaires to address and transform diverse opinions into group consensus. The second phase explored and prioritized the interventions needed to develop a supportive end of life care strategy for LTC. Development of the Delphi questionnaire was based on findings from published results of physician perspectives of barriers and facilitators to optimal supportive end of life care in LTC, a literature search of palliative care models in LTC, and published results of patient, family and nursing perspectives of supportive end of life care in long term care. The second phase involved World Café Style workshop discussions. A multi-disciplinary purposive sample of individuals inclusive of physicians; staff, administrators, residents, family members, and content experts in palliative care, and researchers in geriatrics and gerontology participated in round one of the modified Delphi questionnaire. A second purposive sample derived from round one participants completed the second round of the modified Delphi questionnaire. A third purposive sample (including participants from the Delphi panel) then convened to identify the top priorities needed to develop a supportive end-of-life care strategy for LTC. RESULTS: 19 participants rated 75 statements on a 9-point Likert scale during the first round of the modified Delphi questionnaire. 11 participants (participation rate 58 %) completed the second round of the modified Delphi questionnaire and reached consensus on the inclusion of 71candidate statements. 35 multidisciplinary participants discussed the 71 statements remaining and prioritized the top clinical practice, communication, and policy interventions needed to develop a supportive end of life strategy for LTC. CONCLUSIONS: Multi-disciplinary stakeholders identified and prioritized the top interventions needed to develop a 5-point supportive end of life care strategy for LTC.
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Cuidados a Largo Plazo , Cuidado Terminal , Anciano , Consenso , Muerte , Técnica Delphi , HumanosRESUMEN
OBJECTIVE: This study aimed to develop and evaluate a Toolkit to support implementation of the Towards Organisational Culture Change (TOrCCh) intervention, with minimal external facilitation, in aged care facilities, to implement long-lasting organisational change. METHODS: Eight residential aged care facilities across two Australian states participated. A Toolkit was drafted iteratively, engaging staff from participating sites and a reference group. Participating facilities undertook two change projects utilising the Toolkit. Qualitative data were collected from site project sponsors, work teams and other care staff, and analysed thematically. RESULTS: The intervention was perceived to provide a generic approach that could be applied to solve agreed challenges in the workplace generating useful outcomes including staff development, increased communication, teamwork and leadership. The role of a project sponsor, and organisational support, was perceived as important for sustainability. CONCLUSION: Aged care facility staff teams report they can work together effectively for sustainable improvements when provided with a Toolkit.
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Atención a la Salud , Hogares para Ancianos , Anciano , Australia , Humanos , Cultura Organizacional , Innovación OrganizacionalRESUMEN
BACKGROUND: People with end-stage kidney disease can either pursue conservative (palliative) management or kidney replacement therapy. Although transplant is preferred, there is a limited number of organs available rendering the majority of patients treated with some form of dialysis. Hemodialysis and peritoneal dialysis are equivalent regarding clinical outcomes, but peritoneal dialysis is much less costly to provide. Peritoneal dialysis is most often done in the home by the patient or a support person and carries a self-care burden on patients and families. Social support is important for patients receiving peritoneal dialysis and in sustaining peritoneal dialysis therapy. Few studies have comprehensively explored social support in the context of peritoneal dialysis. OBJECTIVE: To explore how patients, family members, and nurses view social support. DESIGN: Qualitative, descriptive study. SETTING: An outpatient peritoneal dialysis clinic in Western Canada. PARTICIPANTS: Patients, family members, and nurses. METHODS: Patients (n = 15), family members (n = 6), and nurses (n = 11) were interviewed between January and May 2018. Content analysis was undertaken using 4 attributes of social support (ie, emotional support, instrumental support, informational support, and appraisal support) as an analytic framework. RESULTS: Themes related to the 4 attributes of social support were identified: addressing emotional needs and managing emotion (emotional support); peritoneal dialysis tasks and life tasks (instrumental support); accessing information, receiving information, and learning (informational support); and affirmation/external reassurance and self-confidence (appraisal support). The social support needs of both patients and family members varied and were dependent on their existing support networks and individual perspectives of support. LIMITATIONS: It is possible that some of the study findings were gender-bound as well as context-specific. The study findings could be different if the patient and caregiver sample were more balanced based on sex. There are also unique attributes of each peritoneal dialysis program that may impact the transferability of these findings to other practice settings. CONCLUSION: Home-based peritoneal dialysis has potential benefit to patients and health care systems. However, receiving peritoneal dialysis requires support. If health care providers wish to promote this treatment, they must also understand how to best support patients and their family members. TRIAL REGISTRATION: Not applicable.
CONTEXTE: Les patients atteints d'insuffisance rénale terminale sont appelés à suivre un traitement conservateur (palliatif) ou une thérapie de remplacement rénal. Bien que la transplantation demeure préférable, le nombre d'organes disponibles contraint la majorité des patients à suivre des traitements de dialyse. Sur le plan des résultats cliniques, l'hémodialyse (HD) et la dialyse péritonéale (DP) sont équivalentes, mais cette dernière se révèle beaucoup moins coûteuse. La DP, souvent pratiquée à domicile par le patient ou une personne-aidante, impose toutefois un important fardeau au patient et à ses proches. Le soutien social est donc essentiel pour les patients traités par DP et pour soutenir cette thérapie essentielle. Peu d'études se sont penchées sur l'accompagnement des patients recevant des traitements de dialyse péritonéale. OBJECTIF: Connaître les perceptions des patients, de leurs proches et d'infirmières à l'égard du soutien social. TYPE D'ÉTUDE: Étude qualitative et descriptive. CADRE: Une clinique de dialyse péritonéale ambulatoire de l'Ouest canadien. PARTICIPANTS: Les patients, leurs proches et des infirmières. MÉTHODOLOGIE: Les patients (n = 15), leurs proches (n = 6) et des infirmières (n = 11) ont été questionnés entre janvier et mai 2018. Quatre types de soutien social (soutien affectif, instrumental ou informationnel et services d'évaluation) ont servi de cadre à l'analyse de contenu. RÉSULTATS: Des thèmes relatifs à chacun des types de soutien social ont été définis: réponse aux besoins émotionnels et gestion des émotions (soutien affectif); tâches liées à la vie quotidienne et à la dialyse péritonéale (soutien instrumental); accès à l'information, obtention de l'information et apprentissage (soutien informationnel); affirmation, réconfort et confiance en soi (services d'évaluation). Les besoins d'accompagnement des patients et de leurs proches étaient variables et dépendaient de leurs réseaux d'aide actuels et de leurs perspectives individuelles. LIMITES: Il est possible que certains résultats soient liés au sexe ou au contexte des patients. Les résultats pourraient différer avec un rapport hommes-femmes plus équilibré dans les échantillons de patients et de soignants. Aussi, chaque programme de DP présente des caractéristiques uniques pouvant avoir une incidence sur la transférabilité des résultats dans d'autres contextes de pratique. CONCLUSION: La dialyse péritonéale à domicile présente des avantages pour les patients et les systèmes de santé. La pratique de cette modalité requiert cependant du soutien. Si les fournisseurs de soins souhaitent promouvoir la DP auprès de leurs patients, ils devront également comprendre comment offrir le meilleur accompagnement possible aux prestataires et à leurs familles. ENREGISTREMENT DE L'ESSAI: Sans objet.
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OBJECTIVE: The COVID-19 pandemic has highlighted ongoing challenges to optimal supportive end-of-life care for adults living in long-term care (LTC) facilities. A supportive end-of-life care approach emphasises family involvement, optimal symptom control, multidisciplinary team collaboration and death and bereavement support services for residents and families. Community-based and palliative care specialist physicians who visit residents in LTC facilities play an important role in supportive end-of-life care. Yet, perspectives, experiences and perceptions of these physicians remain unknown. The objective of this study was to explore barriers and facilitators to optimal supportive end-of-life palliative care in LTC through the experiences and perceptions of community-based and palliative specialist physicians who visit LTC facilities. DESIGN: Qualitative study using semi-structured interviews, basic qualitative description and directed content analysis using the COM-B (capability, opportunity, motivation - behaviour) theoretical framework. SETTING: Residential long-term care. PARTICIPANTS: 23 physicians who visit LTC facilities from across Alberta, Canada, including both in urban and rural settings of whom 18 were community-based physicians and 5 were specialist palliative care physicians. RESULTS: Motivation barriers include families' lack of frailty knowledge, unrealistic expectations and emotional reactions to grief and uncertainty. Capability barriers include lack of symptom assessment tools, as well as palliative care knowledge, training and mentorship. Physical and social design barriers include lack of dedicated spaces for death and bereavement, inadequate staff, and mental health and spiritual services of insufficient scope for the population. CONCLUSION: Findings reveal that validating families' concerns, having appropriate symptom assessment tools, providing mentorship in palliative care and adapting the physical and social environment to support dying and grieving with dignity facilitates supportive, end-of-life care within LTC.
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Infecciones por Coronavirus/terapia , Cuidados a Largo Plazo , Cuidados Paliativos/normas , Pandemias , Médicos , Neumonía Viral/terapia , Instituciones de Cuidados Especializados de Enfermería , Cuidado Terminal/normas , Adulto , Anciano , Alberta , Actitud del Personal de Salud , Betacoronavirus , COVID-19 , Infecciones por Coronavirus/virología , Familia , Femenino , Anciano Frágil , Fragilidad , Necesidades y Demandas de Servicios de Salud , Cuidados Paliativos al Final de la Vida , Humanos , Masculino , Persona de Mediana Edad , Neumonía Viral/virología , Investigación Cualitativa , Respeto , SARS-CoV-2 , EspecializaciónRESUMEN
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.
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Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Evaluación de Programas y Proyectos de Salud/métodos , Anciano , Anciano de 80 o más Años , Femenino , Grupos Focales/métodos , Humanos , Masculino , Persona de Mediana Edad , Ontario , Proyectos Piloto , Investigación Cualitativa , Encuestas y CuestionariosRESUMEN
OBJECTIVE: To develop and evaluate an organisational culture change intervention for residential aged care settings. METHODS: This study was undertaken in five residential aged care facilities (RACFs). All staff working within participating RACFs were invited to take part. Participatory action research was used to develop a structured approach, supporting small workgroups of staff in each facility to undertake change cycles, focusing on improved leadership, teamwork and communication. Qualitative data were gathered from reflection and evaluation sessions with facility work team focus groups, interviews with managers and other staff who were not engaged in the work team, field journals and reflective discussion with research team members. RESULTS: Staff and management both positively evaluated the intervention and process, and there were perceived cultural shifts in communication, teamwork and staff empowerment. CONCLUSION: An organisational culture change intervention that engages work teams through brief change cycles appears to be feasible for use in RACF.
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Hogares para Ancianos , Cultura Organizacional , Innovación Organizacional , Anciano , Anciano de 80 o más Años , HumanosRESUMEN
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.
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Cuidados Paliativos/métodos , Cuidado Terminal/métodos , Guías como Asunto , Humanos , Casas de Salud/organización & administración , Cuidados Paliativos/tendencias , Cuidado Terminal/tendenciasRESUMEN
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.
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Guías como Asunto/normas , Cuidados Paliativos/métodos , Cuidado Terminal/métodos , Adulto , Anciano , Canadá , Femenino , Grupos Focales/métodos , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos/normas , Investigación Cualitativa , Cuidado Terminal/normasRESUMEN
Cardiovascular disease (CVD) continues to be one of the leading causes of death for women. New approaches need to be identified that will enable women to recognize modifiable risk factors and target their efforts toward prevention. The objectives of this study were to (1) determine if women would access Vivametrica™ to assess CVD risk, (2) identify whether women would increase their physical activity as measured by their daily step counts, and (3) elicit women's opinions about using the system, prospective observational study design. Thirty-six English-speaking women aged 45-64 years of age, without physical disability, were recruited. Participants attended two clinic visits and were asked to wear a sensor-based activity monitor (Garmin Vivosmart® HR Wrist Tracker) for 12 weeks. Twenty-six (72%) of participants accessed Vivametrica for the course of the study. The median number of steps at baseline and at study completion was 9329 (range 5406-18,228) and 10,181 (range 5398-21,401), respectively. There was no significant change in number of steps taken by the participants for the study period (Z = -1.086, p = 0.278). The women's responses to the three statements (related to using Vivametrica) are represented on bar graphs. Women's opinions were important to provide an understanding about how they realized the technology. Women did access Vivametrica. Women did not significantly increase their step count. However, these women were achieving beyond sedentary levels of activity (>5000 steps/day). Although the change in steps was not statistically significant, it represents a median increase in daily steps of 9%, which is clinically important.
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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.
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Empatía , Familia , Personal de Salud/normas , Cuidados a Largo Plazo/normas , Investigación Cualitativa , Instituciones de Cuidados Especializados de Enfermería/normas , Actitud del Personal de Salud , Canadá/epidemiología , Familia/psicología , Femenino , Grupos Focales , Personal de Salud/psicología , Humanos , Cuidados a Largo Plazo/psicología , MasculinoRESUMEN
ABSTRACTThe purpose of this study was to analyse the consistency and extent of palliative content across high-level guiding documents related to the care of persons residing in Canadian long-term care homes. A systematic search was conducted examining documents at the national level and across five provinces (Alberta, Ontario, Saskatchewan, Manitoba, and Quebec). Twenty-five documents were selected based on inclusion criteria from 273 documents identified in the systematic search. The majority of these documents were created nationally (48%) or in Ontario (28%). Documents varied in palliative topics discussed, and long-term care was discussed minimally. A minimal number of palliative care guiding documents were found. Long-term care specific documents were absent, and all documents lacked consistency on palliative topics. It is imperative that palliative principles are present and consistent in high-level documents in order to improve the quality of life and care for long-term care residents across Canada.
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Cuidados a Largo Plazo/organización & administración , Cuidados Paliativos/organización & administración , Anciano , Canadá , Política de Salud , Humanos , Planificación de Atención al Paciente/organización & administración , Guías de Práctica Clínica como Asunto , Calidad de VidaRESUMEN
The discourse of dying alone is negatively weighted and models of a good death identify not dying alone as a key outcome. Understanding why dying alone is viewed negatively and its effects on care is a priority. In separate focus groups with long-term care residents, family caregivers, and staff, we identified evidence for four different perspectives on the importance of presence at the time of death. However, while each individual had their own unique perspective on dying alone, the predominant view expressed across respondent groups was that having human connection near the end of one's life was important.
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Actitud Frente a la Muerte , Cuidados Paliativos/psicología , Adulto , Anciano , Anciano de 80 o más Años , Cuidadores/psicología , Femenino , Grupos Focales , Humanos , Cuidados a Largo Plazo , Masculino , Persona de Mediana Edad , Adulto JovenRESUMEN
BACKGROUND: Most persons with dementia die in long term care (LTC) homes, where palliative approaches are appropriate. However, palliative approaches have not been widely implemented and there is limited understanding of staff and family experiences of dying and bereavement in this context. METHOD: This descriptive qualitative study explored family and staff experiences of end of life and end of life care for persons with dementia in LTC homes. Eighteen focus groups were conducted with 77 staff members and 19 relatives of persons with dementia at four LTC homes in four Canadian provinces. RESULTS: Three themes emerged: knowing the resident, the understanding that they are all human beings, and the long slow decline and death of residents with dementia. DISCUSSION: Intimate knowledge of the person with dementia, obtained through longstanding relationships, was foundational for person-centred end of life care. Health care aides need to be included in end of life care planning to take advantage of their knowledge of residents with dementia. There were unmet bereavement support needs among staff, particularly health care aides. Persons with dementia were affected by death around them and existing rituals for marking deaths in LTC homes may not fit their needs. Staff were uncomfortable answering relatives' questions about end of life. CONCLUSIONS: Longstanding intimate relationships enhanced end of life care but left health care aides with unmet bereavement support needs. Staff in LTC homes should be supported to answer questions about the trajectory of decline of dementia and death. Further research about residents' experiences of deaths of other residents is needed.
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Demencia/terapia , Relaciones Interpersonales , Casas de Salud , Cuidados Paliativos/psicología , Cuidado Terminal/psicología , Anciano , Anciano de 80 o más Años , Aflicción , Canadá , Cuidadores/psicología , Demencia/psicología , Relaciones Familiares , Femenino , Grupos Focales , Humanos , Cuidados a Largo Plazo/psicología , Masculino , Persona de Mediana Edad , Relaciones Profesional-Paciente , Investigación Cualitativa , Cuidado Terminal/métodosRESUMEN
BACKGROUND: Undergraduate nursing placement in aged care is forecast to grow in importance with the increasing aging population, and to help to reverse trends in student lack of interest in gerontology careers. However, there is a need to better understand undergraduate nursing students' experiences on placement with older adults, as well as key features of quality learning within residential aged care. The aim of this study was to explore how nursing students understand learning within residential aged care. METHODS: This qualitative study used a participatory action research approach, and this paper reports on the thematic analysis of data from one cycle of undergraduate nursing placement in a Canadian residential aged care setting, with two groups of 7-8 students and two university instructors. Staff and residents at the research site were also included. Researchers interviewed both groups of students prior to and after placement. Instructors, staff and residents were interviewed post placement. RESULTS: Students commenced placement full of apprehension, and progressed in their learning by taking initiative and through self-directed learning pathways. Engagement with residents was key to student learning on person-centred care and increased understanding of older adults. Students faced challenges to their learning through limited exposure to professional nursing roles and healthcare aide/student relationship issues. By placement end, students had gained unique insights on resident care and began to step into advocacy roles. CONCLUSIONS: In learning on placement within residential aged care, students moved from feelings of apprehension to taking on advocacy roles for residents. Better formalizing routes for students to feedback their unique understandings on resident care could ensure their contributions are better integrated and not lost when placements end.
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BACKGROUND: Although peritoneal dialysis (PD) costs less to the health care system compared to in-center hemodialysis (HD), it is an underused therapy. Neither modality has been consistently shown to confer a clear benefit to patient survival. A key limitation of prior research is that study patients were not restricted to those eligible for both therapies. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: All adult patients developing end-stage renal disease from January 2004 to December 2013 at any of 7 regional dialysis centers in Ontario, Canada, who had received at least 1 outpatient dialysis treatment and had completed a multidisciplinary modality assessment. PREDICTOR: HD or PD. OUTCOMES: Mortality from any cause. RESULTS: Among all incident patients with end-stage renal disease (1,579 HD and 453 PD), PD was associated with lower risk for death among patients younger than 65 years. However, after excluding approximately one-third of all incident patients deemed to be ineligible for PD, the modalities were associated with similar survival regardless of age. This finding was also observed in analyses that were restricted to patients initiating dialysis therapy electively as outpatients. The impact of modality on survival did not vary over time. LIMITATIONS: The determination of PD eligibility was based on the judgment of the multidisciplinary team at each dialysis center. CONCLUSIONS: HD and PD are associated with similar mortality among incident dialysis patients who are eligible for both modalities. The effect of modality on survival does not appear to change over time. Future comparisons of dialysis modality should be restricted to individuals who are deemed eligible for both modalities to reflect the outcomes of patients who have the opportunity to choose between HD and PD in clinical practice.