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

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

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

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

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

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

A Scoping Review of Personal, Financial, and Environmental Determinants of Mobility Among Older Adults.

OBJECTIVE: To synthesize available evidence of factors comprising the personal, financial, and environmental mobility determinants and their association with older adults' self-reported and performance-based mobility outcomes. DATA SOURCES: PubMed, EMBASE, PsychINFO, Web of Science, AgeLine, Sociological Abstract, Allied and Complementary Medicine Database, and Cumulative Index to Nursing and Allied Health Literature databases search for articles published from January 2000 to December 2021. STUDY SECTION: Using predefined inclusion and exclusion criteria, multiple reviewers independently screened 27,293 retrieved citations from databases, of which 422 articles underwent full-text screening, and 300 articles were extracted. DATA EXTRACTION: The 300 articles' information, including study design, sample characteristics including sample size, mean age and sex, factors within each determinant, and their associations with mobility outcomes, were extracted. DATA SYNTHESIS: Because of the heterogeneity of the reported associations, we followed Barnett et al's study protocol and reported associations between factors and mobility outcomes by analyses rather than by article to account for multiple associations generated in 1 article. Qualitative data were synthesized using content analysis. A total of 300 articles were included with 269 quantitative, 22 qualitative, and 9 mixed-method articles representing personal (n=80), and financial (n=1), environmental (n=98), more than 1 factor (n=121). The 278 quantitative and mixed-method articles reported 1270 analyses; 596 (46.9%) were positively and 220 (17.3%) were negatively associated with mobility outcomes among older adults. Personal (65.2%), financial (64.6%), and environmental factors (62.9%) were associated with mobility outcomes, mainly in the expected direction with few exceptions in environmental factors. CONCLUSIONS: Gaps exist in understanding the effect of some environmental factors (eg, number and type of street connections) and the role of gender on older adults' walking outcomes. We have provided a comprehensive list of factors with each determinant, allowing the creation of core outcome set for a specific context, population, or other forms of mobility, for example, driving.

Cognitive, psychological and social factors associated with older adults' mobility: a scoping review of self-report and performance-based measures.

Although many factors have been associated with mobility among older adults, there is paucity of research that explores the complexity of factors that influence mobility. This review aims to synthesise the available evidence for factors comprising the cognitive, psychological, and social mobility determinants and their associations with mobility self-reported and performance-based outcomes in older adults (60 years). We followed Arksey and O'Malley's five stages of a scoping review and searched PubMed, EMBASE, PsychINFO, Web of Science, AgeLine, Allied and Complementary Medicine Database, Cumulative Index to Nursing and Allied Health Literature and Sociological Abstract databases. Reviewers in pairs independently conducted title, abstract, full-text screening and data extraction. We reported associations by analyses rather than articles because articles reported multiple associations for factors and several mobility outcomes. Associations were categorised as significantly positive, negative, or not significant. We included 183 peer-reviewed articles published in 27 countries, most of which were cross-sectional studies and conducted among community-dwelling older adults. The 183 articles reported 630 analyses, of which 381 (60.5%) were significantly associated with mobility outcomes in the expected direction. For example, older adults with higher cognitive functioning such as better executive functioning had better mobility outcomes (e.g., faster gait speed), and those with poor psychological outcomes, such as depressive symptoms, or social outcomes such as reduced social network, had poorer mobility outcomes (e.g., slower gait speed) compared to their counterparts. Studies exploring the association between cognitive factors, personality (a psychological factor) and self-reported mobility outcomes (e.g., walking for transportation or driving), and social factors and performance-based mobility outcomes in older adults are limited. Understanding the additive relationships between cognitive, psychological, and social factors highlights the complexity of older adults' mobility across different forms of mobility, including independence, use of assistive devices, transportation, and driving.

Psychometric Properties of Preference-Based Measures for Economic Evaluation in Amyotrophic Lateral Sclerosis: A Systematic Review.

OBJECTIVE: The aim of this review was to synthesize the psychometric properties of generic preference-based measures (PBMs) of health-related quality of life (HRQL) in Amyotrophic Lateral Sclerosis (ALS). METHODS: A systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Four databases were searched from inception to April 2019: OVID Medline, Embase, PsycINFO, and CINAHL. Studies were included if (1) the sample represented individuals with ALS, (2) a generic PBM was utilized and reported on, and (3) information on the psychometric property of a generic PBM was provided. RESULTS: Ninety-one articles were screened, and 39 full-text articles were reviewed. Seven full-text articles were included in this review. The mean age of participants ranged from 58.1 to 63.8 years, and mean time since diagnosis ranged from 20.5 to 44.6 months. Two generic PBMs were found, the EQ-5D-3L (n = 6) and the Quality of Well-Being Self-Administered (QWB-SA) scale (n = 1). Convergent validity of the EQ-5D-3L was large against a global scale of self-perceived health (r = 0.60) and small to large against ALS specific HRQL measures (r = 0.19 to 0.75). For the QWB-SA scale, correlations were small against a generic measure (r = 0.21) and large against ALS specific measures (r = 0.55). The EQ-5D-3L discriminated across different disease severity; however, floor effects were reported. CONCLUSION: This review highlights the need for more rigorously designed studies to assess the psychometric properties of generic PBMs in ALS and the development of an ALS specific PBM that adequately reflects the health concerns of individuals with ALS.

Use of Participatory Action Research in the Development of a Survey of Physiotherapy Services for People with Multiple Sclerosis in Canada.

Purpose: Currently, there is a paucity of research describing physiotherapy services for individuals with multiple sclerosis (MS) in Canada. Using qualitative methods, we aimed to develop a survey to examine physiotherapy practice patterns for people with MS receiving services in Canada. Method: We began by conducting a review of the current literature and combining participatory action research methods with the expertise of registered physiotherapists and individuals with MS. Semi-structured interviews were conducted with 10 participants to obtain their input into survey development. The interviews were then transcribed verbatim and analyzed thematically. Results: Five key themes emerged from the thematic analysis: (1) provide additional answer options, (2) reformat or clarify questions, (3) ensure that questions or options are appropriate, (4) ensure good readability and flow, and (5) determine the appropriate length of the survey. After a final revision, the survey consisted of 24 items in the following domains: demographics, MS programme and patient population, interdisciplinary care, and programme and service barriers. Conclusions: This survey is the first of its kind in Canada and is the first step toward improving the quality of health of people living with MS and the effectiveness of current physiotherapy practices for them.

Objectif : très peu d'études portent sur les services de physiothérapie pour les personnes atteintes de sclérose en plaques (SP) au Canada. À l'aide de méthodes qualitatives, la présente étude visait à préparer un sondage sur les modes d'exercice de la physiothérapie pour la SP au Canada. Méthodologie : analyse des publications à jour et combinaison de méthodes de recherche-action participatives avec les compétences de physiothérapeutes diplômés et de personnes atteintes de SP. Les chercheurs ont réalisé des entrevues semi-structurées avec dix participants pour obtenir leur avis sur l'élaboration du sondage. Les entrevues ont ensuite été transcrites textuellement, puis analysées par thèmes. Résultats : cinq thèmes principaux ont émergé de l'analyse thématique : 1) fournir d'autres possibilités de réponses, 2) reformuler ou clarifier les questions, 3) s'assurer que les questions ou les options sont appropriées, 4) s'assurer d'une bonne lisibilité et d'un bon enchaînement et 5) déterminer la bonne longueur du sondage. Après la dernière révision, le sondage se composait de 24 points dans les domaines suivants : démographie, programme pour la SP et population de patients, soins interdisciplinaires et obstacles aux programmes et aux services. Conclusion : le sondage est le premier du genre au Canada et représente la première étape vers l'amélioration de la qualité de vie des personnes ayant la SP ainsi que de l'efficacité des pratiques actuelles de physiothérapie auprès d'elles.

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

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

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

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

Intentions of Canadian health professionals towards recommending exercise for people living with ALS.

BACKGROUND: To provide a nationwide overview of the attitudes, social pressure, perceived ability and intentions of health professionals toward exercise prescription for people living with ALS (pALS). METHODS: An online survey of physician and non-physician health professionals (HPs) working in academic ALS clinics across Canada. RESULTS: The response rate was 48% (84/176) with 30% of respondents identifying as physicians, 63% as other HPs and the remainder as administrative or research personnel. Respondents were sharply divided in their intentions to provide exercise counsel: 24% unlikely and 45% likely. Respondents with low intentions were HPs that considered this activity outside their scope of practice. Measures of intention and attitude were more positive for flexibility compared to strength and aerobic exercise. Perceptions of social pressure and ability to provide exercise counsel were significantly correlated with intention across the three exercise modes in all respondents. Qualitative themes identified as barriers to exercise prescription were lack of confidence or competence (31% physicians, 32% HP), patient tolerance (30% HP), lack of evidence (22% physicians) and lack of infrastructure (22% physicians). CONCLUSIONS: While "lack of evidence" for the benefit of exercise was a deterrent for physicians, the larger issue for all respondents was building competence and confidence in exercise prescription for pALS.

Slow Stream Rehabilitation for Older Adults: A Scoping Review.

ABSTRACTCanadian older adults with complex health problems are often considered ineligible for traditional rehabilitation programs but may benefit from slow stream rehabilitation (SSR). This scoping review summarizes the literature related to SSR for older adults, within single-payer health care systems. METHODS: Peer-reviewed and grey-literature documents relevant to older adults in SSR were systematically reviewed. RESULTS: 1,445 documents were screened independently by two reviewers [Cohen Kappa value of 0.78 (CI = 0.73, 0.83)], and included 18 documents. SSR programs were found to be multidisciplinary with a mean duration ranging from 30 to 141.2 days. SSR participants were more likely to be female, with a mean age range of 72-82 years, multiple co-morbidities and mild-to-moderate cognitive impairments. SSR participants demonstrated improvements in physical and functional measures. DISCUSSION: SSR programs have the potential to be an integral part of the continuum of care for older adults with complex medical histories.

Physical therapy for individuals with amyotrophic lateral sclerosis: current insights.

Amyotrophic lateral sclerosis (ALS) is a progressive, neurodegenerative, and inevitably fatal disease. There is no cure for ALS and life expectancy is typically 2-5 years after symptom onset. Despite the lack of a cure and the rapidly progressive nature of the disease, ALS is considered a "treatable disease" and rehabilitation is integral to optimal, comprehensive care. In addition to the other health care professions making up the health care team, physical therapy provides a critical role in the overall management in individuals with ALS. Physical therapy that is tailored to the individual's needs and goals and focused on addressing symptoms and maximizing function and participation enables people with ALS to live their lives to the fullest and with quality. The purpose of this paper is to review some of the recent ALS research findings that have implications for physical therapy practice.

The impact of rehabilitative interventions on quality of life: a qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis.

BACKGROUND: The nature of amyotrophic lateral sclerosis (ALS) is progressive and degenerative, thus influencing individuals physically, emotionally, and socially. A broad review of qualitative studies that describe the personal experiences of people with ALS with physiotherapy, occupational therapy and speech and language pathology interventions, and how those affect QoL is warranted. PURPOSE: This study synthesizes qualitative research regarding the potential that rehabilitation interventions have to maintain and/or improve QoL from the perspective of people with ALS. METHODS: The SPIDER search strategy was applied and five articles met inclusion criteria addressing the perceived impact of rehabilitation on QoL for individuals with ALS. RESULTS: Four themes emerged: the concept of control; adapting interventions to disease stage; struggles with interventions; and barriers between healthcare providers and patients. CONCLUSIONS: Rehabilitation interventions were perceived to have potential to support QoL by people with ALS. Advantages and limitations of rehabilitation services within this population were identified.

Simultaneous temporal trends in dementia incidence and prevalence, 2005-2013: a population-based retrospective cohort study in Saskatchewan, Canada.

BACKGROUND: Original studies published over the last decade regarding time trends in dementia report mixed results. The aims of the present study were to use linked administrative health data for the province of Saskatchewan for the period 2005/2006 to 2012/2013 to: (1) examine simultaneous temporal trends in annual age- and sex-specific dementia incidence and prevalence among individuals aged 45 and older, and (2) stratify the changes in incidence over time by database of identification. METHODS: Using a population-based retrospective cohort study design, data were extracted from seven provincial administrative health databases linked by a unique anonymized identification number. Individuals 45 years and older at first identification of dementia between April 1, 2005 and March 31, 2013 were included, based on case definition criteria met within any one of four administrative health databases (hospital, physician, prescription drug, and long-term care). RESULTS: Between 2005/2006 and 2012/2013, the 12-month age-standardized incidence rate of dementia declined significantly by 11.07% and the 12-month age-standardized prevalence increased significantly by 30.54%. The number of incident cases decreased from 3,389 to 3,270 and the number of prevalent cases increased from 8,795 to 13,012. Incidence rate reductions were observed in every database of identification. CONCLUSIONS: We observed a simultaneous trend of decreasing incidence and increasing prevalence of dementia over a relatively short 8-year time period from 2005/2006 to 2012/2013. These trends indicate that the average survival time of dementia is lengthening. Continued observation of these time trends is warranted given the short study period.

Incidence and prevalence of dementia in linked administrative health data in Saskatchewan, Canada: a retrospective cohort study.

BACKGROUND: Determining the epidemiology of dementia among the population as a whole in specific jurisdictions - including the long-term care population-is essential to providing appropriate care. The objectives of this study were to use linked administrative databases in the province of Saskatchewan to determine the 12-month incidence and prevalence of dementia for the 2012/13 period (1) among individuals aged 45 and older in the province of Saskatchewan, (2) according to age group and sex, and (3) according to diagnosis code and other case definition criteria. METHODS: We used a population-based retrospective cohort study design and extracted data from 10 provincial health databases linked by a unique health services number. The cohort included individuals 45 years and older at first identification of dementia between April 1, 2001 and March 31, 2013 based on case definitions met within any one of four administrative health databases (Hospital Discharge Abstracts, Physician Service Claims, Prescription Drug, and RAI-MDS, i.e., Long-term Care). RESULTS: A total of 3,270 incident cases of dementia (7.28 per 1,000 PAR) and 13,012 prevalent cases (28.16 per 1,000 PAR) were identified during 2012/13. This study found the incidence rate increased by 2.8 to 5.1 times and the prevalence rate increased by 2.6 to 4.6 times every 10 years after 45 years of age. Overall, the age-standardised incidence rate was significantly lower among females than males (7.04 vs. 7.65 per 1,000 PAR) and the age-standardised prevalence rate was significantly higher among females than males (28.92 vs. 26.53 per 1,000 PAR). Over one-quarter (28 %) of all incident cases were admitted to long-term care before a diagnosis was formally recorded in physician or hospital data, and nearly two-thirds of these cases were identified at admission with impairment at the moderate to very severe level or a disease category of Alzheimer's disease/other dementia. CONCLUSIONS: Linking multiple sources of registry data contributes to our understanding of the epidemiology of dementia across multiple segments of the population, inclusive of individuals residing in long-term care. This information is foundational for public awareness and policy recommendations, health promotion and prevention strategies, appropriate health resource planning, and research priorities.

Exercise therapy for fibromyalgia.

Fibromyalgia syndrome, a chronic condition typically characterized by widespread pain, nonrestorative sleep, fatigue, cognitive dysfunction, and other somatic symptoms, negatively impacts physical and emotional function and reduces quality of life. Exercise is commonly recommended in the management of people with fibromyalgia, and interest in examining exercise benefits for those with the syndrome has grown substantially over the past 25 years. Research supports aerobic and strength training to improve physical fitness and function, reduce fibromyalgia symptoms, and improve quality of life. However, other forms of exercise (e.g., tai chi, yoga, Nordic walking, vibration techniques) and lifestyle physical activity also have been investigated to determine their effects. This paper highlights findings from recent randomized controlled trials and reviews of exercise for people with fibromyalgia, and includes information regarding factors that influence response and adherence to exercise to assist clinicians with exercise and physical activity prescription decision-making to optimize health and well-being.