How Are Albertans "Adjusting to and Coping With" Dialysis? A Cross-Sectional Survey.

Background: Depression and anxiety are commonly reported (40% and 11%-52%) among adults receiving dialysis, compared with ~10% among all Canadians. Mental health in dialysis care is underrecognized and undertreated. Objective: (1) To describe preferences for mental health support reported by Albertans receiving dialysis; (2) to compare depression, anxiety, and quality-of-life (QOL) domains for people who would or would not engage in support for mental health; and (3) to explore sociodemographic, mental health, and QOL domains that explain whether people would or would not engage in support for mental health. Design: A cross-sectional survey. Setting: Alberta, Canada. Patients: Adults receiving all modalities of dialysis (N = 2972). Measurements: An online survey with questions about preferences for mental health support and patient-reported outcome measures (Patient Health Questionnaire-9 [PHQ-9], Generalized Anxiety Disorder-7 [GAD-7], and Kidney Disease QOL Instrument-36 [KDQOL-36]). Methods: To address objectives 1 and 2, we conducted chi-square tests (for discrete variables) and t tests (for continuous variables) to compare the distributions of the above measures for two groups: Albertans receiving dialysis who would engage or would not engage in support for mental health. We subsequently conducted a series of binary logistic regressions guided by the purposeful variable selection approach to identify a subset of the most relevant explanatory variables for determining whether or not people are more likely to engage in support for mental health (objective 3). To further explain differences between the two groups, we analyzed open-text comments following a summative content analysis approach. Results: Among 384 respondents, 72 did not provide a dialysis modality or answer the PHQ-9. The final data set included responses from 312 participants. Of these, 59.6% would consider engaging in support, including discussing medication with a family doctor (72.1%) or nephrologist (62.9%), peer support groups (64.9%), and talk therapy (60%). Phone was slightly favored (73%) over in person at dialysis (67.6%), outpatient (67.2%), or video (59.4%). Moderate to severe depressive symptoms (PHQ-9 score ≥10) was reported by 33.4%, and most respondents (63.9%) reported minimal anxiety symptoms; 36.1% reported mild to severe anxiety symptoms (GAD-7 score ≥5). The mean (SD) PHQ-9 score was 8.9 (6.4) for those who would engage in support, and lower at 5.8 (4.8) for those who would not. The mean (SD) GAD-7 score was 5.2 (5.6) for those who would engage in support and 2.8 (4.1) for those who would not. In the final logistic regression model, people who were unable to work had 2 times the odds of engaging in support than people who are able to work. People were also more likely to engage in support if they had been on dialysis for fewer years and had lower (worse) mental health scores (odds ratios = 1.06 and 1.38, respectively). The final model explained 15.5% (Nagelkerke R2) of the variance and with 66.6% correct classification. We analyzed 146 comments in response to the question, "Is there anything else you like to tell us." The top 2 categories for both groups were QOL and impact of dialysis environment. The third category differed: those who would engage wrote about support, whereas those who would not engage wrote about "dialysis is the least of my worries." Limitations: A low response rate of 12.9% limits representativeness; people who chose not to participate may have different experiences of mental health. Conclusions: Incorporating patients' preferences and willingness to engage in support for mental health will inform future visioning for person-centered mental health care in dialysis.

Contexte: La dépression et l'anxiété sont plus fréquemment signalées chez les adultes traités par dialyse (dépression: 40 %; anxiété: 11 à 52 %) comparativement à la population canadienne (environ 10 %). Les problèmes de santé mentale sont insuffisamment reconnus et traités dans les soins de dialyse. Objectifs: (1) décrire les préférences en matière de soutien en santé mentale des Albertains traités par dialyse; (2) comparer les domaines de la dépression, de l'anxiété et de la qualité de vie (QV) pour les personnes désirant obtenir ou non du soutien en santé mentale; (3) explorer les domaines sociodémographiques, de santé mentale et de QV qui expliquent pourquoi une personne désirerait obtenir ou non du soutien en santé mentale. Conception: Sondage transversal. Cadre: Alberta, Canada. Sujets: Adultes recevant toutes les modalités de dialyse (N=2972). Mesures: Un sondage en ligne comportant des questions sur les préférences en matière de soutien en santé mentale. Les mesures des résultats rapportés par les patients à trois questionnaires (questionnaire-9 sur la santé des patients [PHQ-9], questionnaire-7 sur les troubles anxieux généralisés [GAD-7] et l'instrument QOL-36 pour l'insuffisance rénale [KDQOL-36]). Méthodologie: Pour répondre aux objectifs 1 et 2, nous avons effectué des tests chi-carrés (pour les variables discrètes) et des tests t (pour les variables continues) pour comparer les distributions des mesures ci-dessus pour deux groupes: les Albertains sous dialyse désirant obtenir ou non du soutien en santé mentale. Une série de régressions logistiques binaires guidées par une approche de sélection ciblée des variables a ensuite été effectuée pour identifier un sous-ensemble des plus pertinentes variables explicatives permettant de déterminer si les gens sont plus susceptibles de vouloir obtenir du soutien en santé mentale (objectif 3). Pour expliquer plus précisément les différences entre les deux groupes, nous avons analysé les commentaires en texte ouvert en suivant une approche d'analyse de contenu sommative. Résultats: Des 384 répondants, 72 n'ont pas indiqué de modalité de dialyse ni répondu au questionnaire PHQ-9. L'ensemble de données final comprend les réponses de 312 patients. De ce nombre, 59,6 % envisageraient d'obtenir du soutien, notamment une discussion sur les médicaments avec un médecin de famille (72,1 %) ou un néphrologue (62,9 %), une participation à des groupes de soutien par les pairs (64,9 %) ou une psychothérapie (60 %). Les répondants préféraient le téléphone (73 %) plutôt qu'une visite en personne pendant la dialyse (67,6 %), qu'une consultation externe (67,2 %) ou qu'une consultation vidéo (59,4 %). Des symptômes dépressifs modérés à graves (score PHQ-9 ≥10) ont été rapportés par 33,4 % des répondants. La plupart des répondants (63,9 %) a signalé des symptômes minimes d'anxiété et 36,1 % ont signalé des symptômes d'anxiété légers à graves (score GAD-7 ≥5). Le score moyen (É-T) au PHQ-9 était de 8,9 (6,4) pour les sujets qui désiraient obtenir du soutien et de 5,8 (4,8) pour ceux qui n'en désiraient pas. Le score moyen (É-T) au GAD-7 était de 5,2 (5,6) pour les sujets qui désiraient obtenir du soutien et de 2,8 (4,1) pour ceux qui n'en désiraient pas. Dans le modèle final de régression logistique, les personnes qui ne pouvaient pas travailler étaient deux fois plus susceptibles de vouloir chercher du soutien que celles qui pouvaient travailler. Les répondants étaient également plus susceptibles de se faire aider s'ils étaient sous dialyse depuis moins longtemps et avaient des scores de santé mentale inférieurs (les plus faibles) (rapports de cotes respectifs: 1,06 et 1,38). Le modèle final expliquait 15,5 % (Nagelkerke R2) de la variance avec 66,6 % de classification correcte. Nous avons analysé 146 réponses à la question: « Y a-t-il autre chose que vous souhaiteriez nous dire? ¼ Dans les deux groupes, les deux principales catégories étaient la QV et l'impact de l'environnement de dialyse. La troisième catégorie différait: ceux qui en obtenaient écrivaient sur le soutien, alors que ceux qui n'en obtenaient pas ont indiqué que la « dialyse était le moindre de leurs soucis ¼. Limites: Le faible taux de réponse (12,9 %) limite la représentativité; les personnes qui ont choisi de ne pas participer pourraient avoir des expériences différentes en matière de santé mentale. Conclusion: L'intégration des préférences des patients et de leur volonté d'obtenir du soutien en santé mentale permettra d'éclairer la vision future des soins de santé mentale axés sur les patients traités par dialyse.

Mental Health Care for Adults Treated With Dialysis in Canada: A Scoping Review.

Purpose of review: Mental illnesses, especially depression and anxiety, are common conditions frequently underrecognized and untreated among individuals with end-stage kidney disease. Existing tools/interventions, approaches to care, and resources to support mental health for people treated with dialysis in Canada are not well known. The aim of this scoping review was to systematically describe how mental health care is provided to adults treated with dialysis in Canada. The research questions we sought to answer were the following: (1) What mental health assessment tools and interventions for adults treated with dialysis have been investigated and utilized in Canada? (2) what is the structure and process of mental health care delivered by kidney care to adults treated with dialysis in Canada? and (3) what is the availability of mental health care resources developed for adults treated with dialysis in Canada? Sources of information: Electronic databases included Medline, Embase, CINAHL, PsycINFO, Cochrane Library, Scopus, and Web of Science for peer-reviewed literature, and Google search engine for gray literature. Methods: Systematic searches were conducted to identify peer-reviewed and gray literature that focused on mental health care or support offered to adults receiving any form of dialysis in Canadian kidney care settings and/or community organizations. Mental health care and support was defined to include mental health assessment tools, interventions, resources, guidelines, and/or pathways used in dialysis in Canada. Title, abstracts, and full texts were screened independently by 2 reviewers with discrepancies resolved by additional team members. Web sites were screened by individual members. Data from included studies and Web sites were extracted based on the abovementioned research questions. Key findings: We identified 8 peer-reviewed articles from electronic databases, and 28 separate Web site addresses. Of the 8 articles, 4 investigated mental health assessment tools and 4 examined mental health interventions for individuals treated with dialysis in Canada. The mental health assessment tools that have been used are Beck Depression Inventory-II (BDI-II), Edmonton System Assessment Scale (ESAS), Edmonton System Assessment Scale revised (ESAS-r): Renal, Hospital Anxiety and Depression Scale (HADS), and Distress Assessment and Response Tool (DART), and the nonpharmacological interventions that have been investigated are intradialytic exercise, tai chi exercise program, medical music therapy, and brief mindfulness meditation. Of the 28 Web site addresses, 2 contained clinical tools for kidney care providers for the management of depression and anxiety in individuals treated with dialysis. The 26 remaining Web sites contained mental health resources for individuals with kidney disease, which presented different types of resources, including psychoeducation, peer support, and linkage to other services. Conclusion: In conclusion, we found only a limited number of studies investigating mental health assessment tools and interventions in Canada; there was a paucity of randomized controlled trials. Clinical pathways for the assessment and management of mental illness or symptoms in individuals treated with dialysis in Canada are also limited, and no clinical practice guidelines exist. Several mental health resources for people living with dialysis are available, predominantly focused on psychoeducation and peer support. Despite increasing prevalence of mental health concerns by people treated with dialysis, mental health care remains underaddressed. Limitations: It is plausible that additional literature related to mental health assessment tools, interventions, resources, guidelines, and pathways exists that we did not find during our systematic search, especially in gray literature that was limited to one search engine. In addition, health care agencies or organizations may have developed other mental health resources, which may not be available on the Internet.

Justification: Les troubles de santé mentale, la dépression et l'anxiété particulièrement, sont des affections courantes, mais souvent non reconnues et non traitées chez les personnes atteintes d'insuffisance rénale terminale. Les outils, interventions, approches de soins et ressources qui existent pour soutenir la santé mentale des personnes traitées par dialyse au Canada sont eux aussi mal connus. Cette revue de littérature vise à décrire systématiquement la façon dont les soins de santé mentale sont prodigués aux adultes dialysés au Canada. Pour ce faire, nous avons tenté de répondre aux questions de recherche suivantes: (1) Quels outils d'évaluation de la santé mentale et interventions auprès des adultes dialysés ont été étudiés et sont utilisés au Canada? (2) Quelle est la structure des soins de santé mentale dispensés par l'équipe des soins rénaux aux adultes dialysés au Canada, et quel en est le processus? (3) Les ressources en santé mentale mises au point pour les adultes dialysés au Canada sont-elles disponibles? Sources: Les bases de données électroniques Medline, Embase, CINAHL, PsycINFO, Cochrane Library, Scopus et Web of Science ont été consultées à la recherche de littérature évaluée par des pairs. Le moteur de recherche Google a été utilisé pour la littérature grise. Méthodologie: Des recherches systématiques ont été effectuées pour répertorier la littérature grise et la littérature évaluée par les pairs portant sur le soutien ou les soins de santé mentale offerts aux adultes recevant une forme quelconque de dialyse dans les établissements de santé rénale et/ou organismes communautaires canadiens. Le soutien et les soins en santé mentale ont été définis de façon à inclure les outils d'évaluation, interventions, ressources, lignes directrices ou schémas utilisés en contexte de dialyse au Canada. Les titres, résumés et articles complets ont été examinés de façon indépendante par deux auteurs; les désaccords ayant été résolus par d'autres membres de l'équipe. Les sites Web ont été examinés par des membres individuels. Les questions susmentionnées ont servi à l'extraction des données d'intérêt des études et sites inclus. Principaux résultats: Les bases de données électroniques ont permis de répertorier huit articles évalués par des pairs et 28 adresses de sites Web différentes. Des huit articles inclus, quatre avaient examiné des outils d'évaluation et quatre avaient examiné des interventions en santé mentale pour les personnes dialysées au Canada. Les outils d'évaluation de la santé mentale utilisés étaient BDI-II, ESAS, ESAS-r: Renal, HADS et DART. Les interventions non pharmacologiques incluaient des exercices intradialytiques, un programme de tai-chi, la musicothérapie médicale et une courte séance de méditation de pleine conscience. Sur les 28 adresses de site Web retenues, deux contenaient des outils cliniques destinés aux professionnels de la santé rénale pour la prise en charge de la dépression et de l'anxiété chez les personnes dialysées. Les 26 autres contenaient des ressources en santé mentale destinées aux personnes atteintes d'une néphropathie, soit différents types de ressources incluant notamment de la psychoéducation, du soutien par les pairs et des liens vers d'autres services.Pour résumer, nous n'avons trouvé qu'un nombre limité d'études portant sur les outils d'évaluation et les interventions pour la santé mentale au Canada, dont aucun essai randomisé contrôlé. Les cheminements cliniques pour évaluer et prendre en charge les troubles de santé mentale et leurs symptômes chez les personnes traitées par dialyse au Canada sont également limités, et il n'existe aucune ligne directrice en matière de pratique clinique. Plusieurs ressources en santé mentale sont disponibles pour cette population, elles sont principalement axées sur la psychoéducation et le soutien par les pairs. Malgré la prévalence croissante des troubles de santé mentale chez les personnes dialysées, les soins demeurent rarement abordés. Limites: Il est possible que d'autres documents existent sur les outils d'évaluation de la santé mentale, les interventions, les ressources, les lignes directrices ou les voies d'accès, et que nous les ayons manqués lors de la recherche systématique, particulièrement dans la littérature grise puisque celle-ci était limitée à un seul moteur de recherche. Il est également possible que des agences ou organismes de soins de santé aient mis au point d'autres ressources en santé mentale qui ne sont pas disponibles sur Internet.

Telemonitoring and Case Management for Hypertensive and Remote-Dwelling Patients With Chronic Kidney Disease-The Telemonitoring for Improved Kidney Outcomes Study (TIKO): A Clinical Research Protocol.

BACKGROUND: Hypertension, together with poorly controlled blood pressure (BP) are known risk factors for kidney disease and progression to kidney failure as well as increased cardiovascular (CV) morbidity and mortality. Several studies in patients without kidney disease have demonstrated the efficacy of home BP telemonitoring (HBPT) for BP control. OBJECTIVE: The primary aim of this study is to assess the mean difference in systolic BP (SBP) at 12 months, from baseline in remote dwelling patients with hypertension and chronic kidney disease (CKD) in Northern Alberta, Canada, comparing HBPT + usual care versus HBPT + a case manager. Other secondary objectives, including cost-effectiveness and acceptability of HBPT as well as occurrence of adverse events will also be assessed. DESIGN: This study is designed as a pragmatic randomized controlled trial (RCT) of HBPT plus clinical case management compared to HBPT with usual care. SETTING: Peace River region in Northern Alberta Region, Canada. PATIENTS: Primary care patients with CKD and hypertension. MEASUREMENTS: Eligible patients will be randomized 1:1 to HBPT + BP case management versus HBPT + usual care. In the intervention arm, BP will be measured 4 times daily for 1 week, with medications titrated up or down by the study case manager until guideline targets (systolic BP [SBP]: <130 mmHg) are achieved. Once BP is controlled, (ie, to guideline-concordant targets), this 1-week protocol will be repeated every 3 months for 1 year. Patients in the control arm will also follow the same BP measurement protocol; however, there will be no interactions with the case manager; they will share their BP readings with their primary care physicians or nurse practitioners at scheduled visits. LIMITATIONS: Potential limitations of this study include the relatively short duration of follow-up, possible technological pitfalls, and need for patients to own a smartphone and have access to the internet to participate. CONCLUSIONS: As this study will focus on a high-risk population that has been characterized by a large care gap, it will generate important evidence that would allow targeted and effective population-level strategies to be implemented to improve health outcomes for high-risk hypertensive CKD patients in Canada's remote communities. TRIAL REGISTRATION: www.clinicaltrials.gov (NCT number: NCT04098354).

CONTEXTE: L'hypertension et la pression artérielle (PA) mal contrôlée sont des facteurs de risque reconnus pour la néphropathie et la progression vers l'insuffisance rénale, en plus de poser un risque accru de morbidité et de mortalité cardiovasculaires. Plusieurs études chez des patients sans néphropathie ont démontré l'efficacité de la télésurveillance de la PA à domicile (TSPA) pour le contrôle de la PA. OBJECTIFS: Le principal objectif est d'évaluer la différence moyenne de pression artérielle systolique (PAS) après 12 mois par rapport à sa valeur initiale chez des patients atteints d'hypertension et d'insuffisance rénale chronique (IRC) habitant les communautés éloignées du nord de l'Alberta (Canada). Cet objectif sera atteint en comparant la TSPA + soins habituels à la TSPA + gestionnaire de cas. D'autres objectifs secondaires, notamment le rapport coût/efficacité de la TSPA, son acceptation et la survenue d'événements indésirables seront également évalués. TYPE D'ÉTUDE: Cette étude est conçue comme un essai randomisé contrôlé (ERC) pragmatique comparant la TSPA + prise en charge clinique des cas à la TSPA + soins habituels. CADRE: Région de Peace River dans le nord de l'Alberta (Canada). SUJETS: Patients atteints d'IRC et d'hypertension recevant des soins de santé primaires. MESURES: Les patients admissibles seront répartis 1:1 dans le groupe TSPA + prise en charge du cas d'hypertension ou dans le groupe témoin (TSPA + soins habituels). Dans le groupe d'intervention, la PA sera mesurée quatre fois par jour pendant une semaine, avec augmentation ou réduction de la médication par le gestionnaire de cas de l'étude jusqu'à ce que la cible de référence (PAS : <130 mmHg) soit atteinte. Une fois la PA contrôlée (c.-à-d. conforme aux cibles recommandées), ce protocole sur une semaine sera répété tous les trois mois pendant un an. Les patients du groupe témoin suivront le même protocole de mesure de la PA, mais sans interactions avec le gestionnaire de cas, ils transmettront plutôt leurs mesures de PA à leur médecin de soins primaires ou aux infirmières praticiennes lors de visites prévues. LIMITES: Cette étude est notamment limitée par la durée relativement courte du suivi, de possibles difficultés technologiques et la nécessité pour les participants de posséder un téléphone intelligent et d'avoir accès à l'Internet. CONCLUSION: Puisque cette étude se penchera sur une population à risque élevé et marquée par d'importantes lacunes en matière de soins, elle générera des données importantes qui aideront à mettre en œuvre des stratégies ciblées et efficaces au niveau de la population afin d'améliorer les évènements cliniques des patients hypertendus et atteints d'IRC à haut risque habitant les communautés éloignées au Canada.

Narrative care: Unpacking pandemic paradoxes.

During the coronavirus disease 2019 pandemic, public health has issued three interrelated dominant narratives through social media and news outlets: First, to care for others, we must keep physically distant; second, we live in the same world and experience the same pandemic; and third, we will return to normal at some point. These narratives create complexities as they collide with the authors' everyday lives as nurses, educators, and women. This collision creates three paradoxes for us: (a) learning to care by creating physical distance, (b) a sense of togetherness erases inequities, and (c) returning to normal is possible. To inquire into these three paradoxes, we draw on our experiences with Ingrid, an older adult who requires in-home physical care, and Matthew, a man with multiple disabilities including severe oral dyspraxia and developmental delays. We outline how narrative care is a counterstory to the dominant narratives and enables us to find ways to live our lives within the paradoxes. Narrative care allows us, through attention to embodiment, liminality, and imagination, to create forward looking stories. Understanding narrative care within these paradoxes allows us to offer more complex understandings of the ways narrative care can be embodied in our, and others', lives.

Evolving partnerships: engagement methods in an established health services research team.

BACKGROUND: The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in nursing homes. This team includes academic researchers, trainees, research staff, citizens (persons living with dementia and family/friend caregivers of persons living in nursing homes), and decision-makers (ministries of health, health authorities, operators of nursing homes). The TREC team has experience working with health system partners but wanted to undertake activities to enhance the collaboration between the academic researchers and citizen members. The aim of this paper is to describe the TREC team members' experiences and perceptions of citizen engagement and identify necessary supports to promote meaningful engagement in health research teams. METHODS: We administered two online surveys (May 2018, July 2019) to all TREC team members (researchers, trainees, staff, decision-makers, citizens). The surveys included closed and open-ended questions guided by regional and international measures of engagement and related to respondents' experience with citizen engagement, their perceptions of the benefits and challenges of citizen engagement, and their needs for training and other tools to support engagement. We analyzed the closed-ended responses using descriptive statistics. RESULTS: We had a 78% response rate (68/87) to the baseline survey, and 27% response rate (21/77) to the follow-up survey. At baseline, 30 (44%) of respondents reported they were currently engaged in a research project with citizen partners compared to 11(52%) in the follow-up survey. Nearly half (10(48%)) of the respondents in the follow-up reported an increase in citizen engagement over the previous year. Respondents identified many benefits to citizen engagement (unique perspectives, assistance with dissemination) and challenges (the need for specific communication skills, meeting organizing and facilitation, and financial/budget support), with little change between the two time points. Respondents reported that the amount of citizen engagement in their research (or related projects) had increased or stayed the same. CONCLUSIONS: Despite increasing recognition of the benefits of including persons with lived experience and large-scale promotion efforts, the research team still lack sufficient training and resources to engage non-academic partners. Our research identified specific areas that could be addressed to improve the engagement of citizens in health research.

Engaging non-academic research partners is becoming an expectation for Canadian health research teams. Research specifically on citizen (patient) engagement has identified benefits and challenges of partnered research; however, most research has only examined one time point. Less is known about how the perception of engagement may change with exposure to engagement in research activities. Translating Research in Elder Care (TREC) is a research program that aims to improve the quality of care and quality of life for residents, and quality of work life of staff in nursing homes. The team includes academic researchers, citizens (the term preferred by our members to reflect persons with dementia, family/friend caregivers of individuals living in nursing homes), decision-maker stakeholders (e.g., ministries of health, operators of nursing homes), trainees (Masters, PhD, postdoctoral fellows), and staff. The TREC team initiated several activities to deepen the partnerships with our citizen members. This paper describes the teams' perceptions of engagement and the benefits and challenges of citizen engagement in an established health research team. We invited the TREC team to complete an online survey (May 2018) before undertaking engagement activities (e.g., training, priority setting) and after 15 months of activities (July 2019). We asked respondents questions about their experience with citizen engagement, their perceptions of the potential research activities citizens could be engaged in, and the benefits and challenges of citizen engagement. Research team respondents reported an increase in citizen engagement in their research but that needs for support persisted. We identify specific areas where research teams need more training and support to ensure that engaged research is possible and sustainable.

The necessity and possibilities of playfulness in narrative care with older adults.

For us, narrative care is grounded in pragmatist philosophy and focused on experience. Narrative care is not merely about acknowledging or listening to people's experiences, but draws attention to practical consequences. We conceptualize care itself as an intrinsically narrative endeavour. In this article, we build on Lugones' understanding of playfulness, particularly to her call to remain attentive to a sense of uncertainty, and an openness to surprise. Playfulness cultivates a generative sense of curiosity that relies on a close attentiveness not only to the other, but to who we each are within relational spaces. Generative curiosity is only possible if we remain playful as we engage and think with experiences and if we remain responsive to the other. Through playfulness, we resist dominant narratives and hold open relational spaces that create opportunities of retelling and reliving our experiences. Drawing on our work alongside older adults, as well as people who work in long-term care, we show the possibilities of playfulness in the co-composition of stories across time. By intentionally integrating playfulness, narrative care can be seen as an intervention, as well as a human activity, across diverse social contexts, places and times.

Citizen and stakeholder led priority setting for long-term care research: identifying research priorities within the Translating Research in Elder Care (TREC) Program.

BACKGROUND: The Translating Research in Elder Care (TREC) program is a longitudinal partnered program of research in Western Canada that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in long-term care settings. This program of research includes researchers, citizens (persons living with dementia and caregivers of persons living in long-term care), and stakeholders (representatives from provincial and regional health authorities, owner-operators of long-term care homes). The aim of this paper is to describe how we used priority setting methods with citizens and stakeholders to identify ten priorities for research using the TREC data. METHODS: We adapted the James Lind Alliance Priority Setting Partnership method to ensure our citizens and stakeholders could identify priorities within the existing TREC data. We administered an online survey to our citizen and stakeholder partners. An in-person priority setting workshop was held in March 2019 in Alberta, Canada to establish consensus on ten research priorities. The in-person workshop used a nominal group technique and involved two rounds of small group prioritization and one final full group ranking. RESULTS: We received 72 online survey respondents and 19 persons (citizens, stakeholders) attended the in-person priority setting workshop. The workshop resulted in an unranked list of their ten research priorities for the TREC program. These priorities encompassed a range of non-clinical topics, including: influence of staffing (ratios, type of care provider) on residents and staff work life, influence of the work environment on resident outcomes, and the impact of quality improvement activities on residents and staff. CONCLUSIONS: This modified priority setting approach provided citizens and stakeholders with an opportunity to identify their own research priorities within the TREC program, without the external pressures of researchers. These priorities will inform the secondary analyses of the TREC data and the development of new projects. This modified priority setting may be a useful approach for research teams trying to engage their non-academic partners and to identify areas for future research.

A Narrative Care approach for persons living with dementia in institutional care settings.

AIMS AND OBJECTIVES: We will provide insights in the theoretical background and key concepts of a Narrative Care approach, such as narrative cultures, narrative curiosity, narrative co-composition and narrative reflective practice. BACKGROUND: Care understood as narrative practice underscores the importance of experiences and how these shape identities. Important to the quality of care in institutional care settings is the ability of care providers to cope with complexities and uncertainties in older adults' stories, which can be realised by attending to ways that foster and co-compose evolving and forward-looking narratives. Recognising these ongoing co-compositions means that persons living in institutional care settings and care providers live, tell, retell and relive their experiences. A change in the current institutional culture is necessary to implement care as narrative practice. To support such a change, approaches are needed that foster a focus on experiences and relationships and make relational ethics central to care. METHODS: The proposed Narrative Care approach is the result of an iterative development process involving a literature review, interviews with, and observations of, care providers, dialogues with an advisory committee, and consultation with experts. MAIN CONTRIBUTIONS: The proposed Narrative Care approach aims to help care providers (a) to recognise the importance of curiosity in a person's verbal and embodied narratives-especially for those living with dementia; (b) to take note of individual experiences in all of their complexity and uncertainty; (c) to respect these narratives; (d) to open up spaces to co-compose new narratives; and (e) to allow care providers to engage in narrative reflective practices that shape who they are and are becoming. CONCLUSION: The introduced approach responds to the need of implementing strategies to think and work narratively in institutional care settings. IMPLICATIONS FOR PRACTICE: Narrative Care has the potential to reshape task-oriented, technical notions of care. Concepts such as embodied narratives, relational ethics, narrative co-composition and narrative reflective practice must be integrated in the education of all care providers.

Home First: Exploring the Impact of Community-based Home Care for Older Adults and Their Family Caregivers.

Given the rapidly expanding older adult population, finding health care approaches that support older adults to age in their choice of place, with an accompanying philosophical re-orientation of health services, is becoming more urgent. We studied the Home Care Home First - Quick Response Project to understand how clients over age 75 and their family caregivers perceived the enhanced community-based services delivered through Home First. Using interpretive description as the methodological design, we explored the experiences of eight older adults and 11 family caregivers; all older adults were enrolled in Home First due to a significant change in their health status. We identified four themes: growing older in chosen places with support, philosophy of care, processes of Home First, and the significance of Home First for clients. Overall, clients and family caregivers responded positively to the Home First services. Clients valued their independence and growing older in places they had specifically chosen.

Improving Quality of Work life for Care Providers by Fostering the Emotional well-being of Persons with Dementia: A Cluster-randomized Trial of a Nursing Intervention in German long-term Care Settings.

We tested the feasibility of a nursing intervention (DEMIAN) in routine care and its effects on care providers' job satisfaction, motivation, and work strain. This cluster-randomized trial was conducted in 20 German long-term care facilities. We randomly assigned 20 facilities to an intervention group (84 care providers, 42 residents with dementia) or a control group (96 care providers, 42 residents with dementia). Intervention group providers received two training days on the intervention; 68 providers attended both training days. Sixty two providers completed both baseline and follow-up questionnaires. Trained providers created individualized mini-intervention plans for participating residents. Control group residents received 'usual care'. Intervention group providers stated that the intervention was feasible and helped them improve emotional well-being of residents with dementia. We found significantly decreased time pressure and decreased job dissatisfaction for intervention group providers. DEMIAN is an effective and pragmatic contribution to implementing person-centred care in long-term care, with positive effects on providers' working conditions.

Theoretical foundations of narrative care: Turning towards relational ethics.

In the past decades, narrative practices have been developed, and care has been conceptualized as being narrative in nature. More recently, narrative care has been developing both as a practice and a field of study. It is necessary to make the theoretical foundations of narrative care visible to avoid the risk of narrowly defining narrative care as a matter of storytelling and listening. In this article, we develop an understanding of narrative care grounded in early feminist pragmatist philosophy, with a focus on social and political activism and experience. Pragmatism holds the possibilities to open spaces for realities that are constantly in flux and for emergent situations that must be considered across time, diverse places and social contexts. With the aid of Vera's stories about her relationship with Tammy, we demonstrate the importance of recognizing that realities are multiple, complex and uncertain. Furthermore, we discuss how the stronghold of formula stories and issues of power, positioning and inequities, restrict people's possibilities to be, become and co-author their stories. We also argue that the playfulness, imagination and world travelling of narrative care are in line with early feminist pragmatism, which draws on a wide and diverse range of experiences. Jane Addams linked democracy to dialogue, joint experiences and social equality. This calls for the development of ethical frameworks grounded in care that are more specifically focused on relational ethics and a commitment to dialogical and relational democracy and the prioritization of community.

Life story work with persons with dementia in nursing homes: A Grounded Theory study of the perspectives of care staff.

In Germany, the use of life story work as an approach to care in nursing homes has not been implemented successfully. Using Grounded Theory, we explored care staff's understandings of life story work when caring for persons with dementia. Thirty-six staff from seven nursing homes participated in semi-structured interviews or group discussions. In this paper we discuss new aspects and theoretical connections between understandings and practices of life story work. For some participants, obtaining 'true facts' about a resident's course of life was considered the most important topic. Others highlighted the importance of narratives as well as embodied stories told by persons with dementia, as aspects that generated emotionally meaningful situations. Delivering sound life story work can be challenging for care staff working with persons with dementia. To enhance care in nursing homes, the importance of life story work needs to be further developed.

Insights Into Care Providers' Understandings of Life Story Work With Persons With Dementia: Findings From a Qualitative Study.

BACKGROUND AND PURPOSE: In Germany, life story work, an approach which acknowledges humans as narrative beings and honors biographies, is required by health authorities to be integrated in care provided in nursing homes. Insufficient attention to life story work could place residents at risk of dehumanization, particularly residents with dementia, who depend on support of others to tell and make meaning of their life experiences. METHODS: We conducted a qualitative study to gain insights into care providers' perceptions and practices of life story work with persons with dementia. Thirty-six care providers in 7 nursing homes participated in semistructured interviews or group discussions. We derived subjective theories (individual understandings) of care providers and higher-order concept patterns following the principles and processes of grounded theory. RESULTS: We found a great variation in participants' understandings of life story work. Some participants were unsure if and how life story work impacts persons with dementia. Starting points for improving the integration of life story work into practice are discussed. IMPLICATIONS FOR PRACTICE: We conclude that care providers need a better understanding of life story work as a nursing intervention. The importance of the notion of humans as narrative beings and the multiple ways in which we story our lives as well as embody life stories needs to be further developed. Knowledge is required about the practical and systemic challenges of integrating life story work in the care of persons with dementia.

Care as narrative practice in the context of long-term care: Theoretical considerations.

AIMS AND OBJECTIVES: In this article, we introduce care itself as a narrative practice. We emphasise that all interactions between care providers and older adults in long-term care settings are narrative in nature and foreground experience. BACKGROUND: Every person consists of innumerable stories based on experiences over time. Some experiences can be recalled and told as narratives, while others are inscribed into our bodies; they are embodied. These narratives shape who we are and are becoming, and influence how care providers experience and provide nursing care in long-term care settings. MAIN CONTRIBUTIONS OF THE THEORETICAL CONSIDERATIONS: We highlight the importance of stories to narrative identities and focus on the embodied act of coconstructing new stories in interaction. We emphasise the idea that care in gerontological nursing would benefit from acknowledging and fostering embodied narratives in a systematic way with older adults. CONCLUSIONS: To foster, elicit, and coconstruct evolving and forward-looking narratives based on older adults' verbal and embodied narratives is essential for the quality of care in long-term settings. Care providers must be aware that they are co-authors of older adults' continuous storying and restorying of their lives. IMPLICATIONS FOR PRACTICE: To recognise that both residents and care providers are narrative beings shift the current culture of care away from rationalised and emotionally devoid consequences of care. Understanding the theoretical underpinnings of care itself as narrative practice is a first step in developing care practices that place relationships between residents and care providers at the centre of practice. There is a need for the implementation of strategies to think and work narratively in long-term care settings.

Narrative inquiry: a relational research methodology for medical education.

CONTEXT: Narrative research, an inclusive term for a range of methodologies, has rapidly become part of medical education scholarship. CONCEPTS: In this paper we identify narrative inquiry as a particular theoretical and methodological framework within narrative research and outline its characteristics. We briefly summarise how narrative research has been used in studying medical learners' identity making in medical education. USES OF NARRATIVE INQUIRY: We then turn to the uses of narrative inquiry in studying medical learners' professional identity making. With the turn to narrative inquiry, the shift is to thinking with stories instead of about stories. CONCLUSIONS: We highlight four challenges in engaging in narrative inquiry in medical education and point toward promising future research and practice possibilities.