Counting what counts: assessing quality of life and its social determinants among nursing home residents with dementia.

BACKGROUND: Maximizing quality of life (QoL) is a major goal of care for people with dementia in nursing homes (NHs). Social determinants are critical for residents' QoL. However, similar to the United States and other countries, most Canadian NHs routinely monitor and publicly report quality of care, but not resident QoL and its social determinants. Therefore, we lack robust, quantitative studies evaluating the association of multiple intersecting social determinants with NH residents' QoL. The goal of this study is to address this critical knowledge gap. METHODS: We will recruit a random sample of 80 NHs from 5 Canadian provinces (Alberta, British Columbia, Manitoba, Nova Scotia, Ontario). We will stratify facilities by urban/rural location, for-profit/not-for-profit ownership, and size (above/below median number of beds among urban versus rural facilities in each province). In video-based structured interviews with care staff, we will complete QoL assessments for each of ~ 4,320 residents, using the DEMQOL-CH, a validated, feasible tool for this purpose. We will also assess resident's social determinants of QoL, using items from validated Canadian population surveys. Health and quality of care data will come from routinely collected Resident Assessment Instrument - Minimum Data Set 2.0 records. Knowledge users (health system decision makers, Alzheimer Societies, NH managers, care staff, people with dementia and their family/friend caregivers) have been involved in the design of this study, and we will partner with them throughout the study. We will share and discuss study findings with knowledge users in web-based summits with embedded focus groups. This will provide much needed data on knowledge users' interpretations, usefulness and intended use of data on NH residents' QoL and its health and social determinants. DISCUSSION: This large-scale, robust, quantitative study will address a major knowledge gap by assessing QoL and multiple intersecting social determinants of QoL among NH residents with dementia. We will also generate evidence on clusters of intersecting social determinants of QoL. This study will be a prerequisite for future studies to investigate in depth the mechanisms leading to QoL inequities in LTC, longitudinal studies to identify trajectories in QoL, and robust intervention studies aiming to reduce these inequities.

Remote visits to address loneliness for people living with dementia in care homes: A descriptive qualitative study of visitors' perceptions.

AIMS: To assess visitors' perceptions of the benefits and challenges related to engaging in a remote visit intervention, which was designed to address the loneliness of people living with moderate to severe dementia in care homes. DESIGN: A qualitative descriptive study. METHODS: Twenty-four people living with dementia in care homes in Canada and their family and friends (i.e., remote visitors) took part in facilitated remote visits in 2021. Each person living with dementia received scheduled visits for 30-60 min per week for 6 weeks. Participants chose to complete one longer visit, or multiple shorter visits, per week. Twenty remote visitors participated in semi-structured interviews after six weeks to discuss their perspectives on the effectiveness, benefits and challenges of the program in relation to addressing experiences of loneliness of the person living with dementia. Conventional content analysis was used to analyze the data. RESULTS: We describe three themes and several sub-themes. Themes support the use of remote visits to enhance, rather than replace, in-person visits; the benefits of remote visits for the person living with dementia and their remote visitors; and the conditions that lead to a successful remote visit. CONCLUSION: Remote visitors reported that facilitated visits had positive effects for both visitors and people living with dementia with respect to loneliness, communication, relationships, and social connection. IMPLICATIONS FOR PATIENT CARE: Clinicians can consider the factors that contributed to positive experiences of remote visits. The factors include individualized, facilitated visits that were flexible, and the use of reliable technology in a supportive, distraction-free environment. IMPACT: Loneliness and social isolation are growing health concerns. When experienced by people living with dementia residing in long-term care homes, loneliness and social isolation can result in lower levels of quality of life and well-being, and higher levels of anxiety and responsive behaviours. Remote visitors perceived that facilitated remote visits have the potential to address loneliness and improve quality of life for people living with dementia and also offer social support to remote visitors. The findings can impact clinician practice by guiding the use of remote visits in care homes, and inform future intervention research to evaluate the effectiveness of remote visits for people living with dementia and their remote visitors. REPORTING METHOD: This manuscript adheres to the relevant EQUATOR guidelines (the Consolidated criteria for reporting qualitative research or COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Characteristics Associated with Relationship-Centred and Task-Focused Mealtime Practices in Older Adult Care Settings.

Purpose: To assess care home and staff characteristics associated with task-focused (TF) and relationship-centred care (RCC) mealtime practices prior to the COVID-19 pandemic.Methods: Staff working in Canadian and American care homes were invited to complete a 23-item online survey assessing their perceptions of mealtime care, with one item assessing 26 potential care practices from the Mealtime Relational Care Checklist (relationship-centred = 15; task-focused = 11) reported to occur in the home prior to the pandemic. Multivariate linear regression evaluated staff and care home characteristics associated with mealtime practices.Results: Six hundred and eighty-six respondents completed all questions used in this analysis. Mean TF and RCC mealtime practices were 4.89 ± 1.99 and 9.69 ± 2.96, respectively. Staff age was associated with TF and RCC practices with those 40-55 years reporting fewer TF and those 18-39 years reporting fewer RCC practices. Those providing direct care were more likely to report TF practices. Dissatisfaction with mealtimes was associated with more TF and fewer RCC practices. Homes that were not making changes to promote RCC pre-pandemic had more TF and fewer RCC practices. Newer care homes were associated with more RCC, while small homes (≤49 beds) had more TF practices.Conclusions: Mealtime practices are associated with staff and home factors. These factors should be considered in efforts to improve RCC practices in Canadian homes.

Development and validation of risk of CPS decline (RCD): a new prediction tool for worsening cognitive performance among home care clients in Canada.

BACKGROUND: To develop and validate a prediction tool, or nomogram, for the risk of a decline in cognitive performance based on the interRAI Cognitive Performance Scale (CPS). METHODS: Retrospective, population-based, cohort study using Canadian Resident Assessment Instrument for Home Care (RAI-HC) data, collected between 2010 and 2018. Eligible home care clients, aged 18+, with at least two assessments were selected randomly for model derivation (75%) and validation (25%). All clients had a CPS score of zero (intact) or one (borderline intact) on intake into the home care program, out of a possible score of six. All individuals had to remain as home care recipients for the six months observation window in order to be included in the analysis. The primary outcome was any degree of worsening (i.e., increase) on the CPS score within six months. Using the derivation cohort, we developed a multivariable logistic regression model to predict the risk of a deterioration in the CPS score. Model performance was assessed on the validation cohort using discrimination and calibration plots. RESULTS: We identified 39,292 eligible home care clients, with a median age of 79.0 years, 62.3% were female, 38.8% were married and 38.6% lived alone. On average, 30.3% experienced a worsening on the CPS score within the six-month window (i.e., a change from 0 or 1 to 2, 3, 4, 5, or 6). The final model had good discrimination (c-statistic of 0.65), with excellent calibration. CONCLUSIONS: The model accurately predicted the risk of deterioration on the CPS score over six months among home care clients. This type of predictive model may provide useful information to support decisions for home care clinicians who use interRAI data internationally.

Increasing access to palliative care for patients with advanced cancer of African and Latin American descent: a patient-oriented community-based study protocol.

BACKGROUND: Cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent. METHODS: This is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants' experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community. DISCUSSION: This study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.

The meaning of preparedness for informal caregivers of older adults: A concept analysis.

AIM: To examine the concept of preparedness over time in research with informal caregivers of older adults. DESIGN: Concept analysis. METHODS: Rodgers' evolutionary method of concept analysis was used to guide this theoretical paper due to the dynamic nature of preparedness, which is influenced by both context and time. Using Rodgers' inductive approach, concept elements were derived from a content analysis of included studies. In the final step, to generate hypotheses and implications regarding the concept, the conceptual structure of preparedness of informal caregivers of older adults was connected to a theoretical problem in the nursing discipline using the Caregiving Stress Process Framework. DATA SOURCES: Four databases (EBSCO CINAHL, Ovid MEDLINE, Ovid PsycINFO and Scopus) were searched in November 2022 and updated in September 2023. No date limits were set for searching, as the intent was to analyse possible variations of the concept over time. RESULTS: The attributes of preparedness include self-confidence, having knowledge, skills and abilities to perform daily tasks, handling emotions and developed over time. These attributes can be compared with the stressors outlined in the Caregiving Stress Process Framework (i.e., the moment the caregiver identifies some 'stressor'; something that prevents them from feeling confident in their preparedness). CONCLUSION: The concept of preparedness of informal caregivers of older adults is defined as caregiver's self-confidence about their current competence related to the knowledge, skills and abilities to perform daily tasks, and to handle emotions over time. To link the concept to a theoretical perspective, we propose adaptations to a well-known theory, the Caregiving Stress Process Framework. Future research on caregiving preparedness needs to avoid circular definitions and work with the attributes of preparedness to support caregivers. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: This paper contributes to the development of interventions that focus on the health and preparedness of informal caregivers of older adults. Clarifying the concept of preparedness helps nurses to support caregivers since it is then known which aspects are included in the preparedness of caregivers (e.g., daily tasks and handling emotions). A more fulsome understanding of preparedness supports us to see beyond stressors of caregiving. IMPACT: This study addresses informal caregivers of older adults' preparedness to provide care. We synthesized existing definitions that have been used in research with this population to propose a robust conceptualization of the concept of preparedness, which contributes to better understanding of how preparedness can be supported. REPORTING METHOD: We were unable to locate a reporting method related to this kind of work (concept analysis). PATIENT OR PUBLIC CONTRIBUTION: Not applicable as no new data generated.

Prevalence of sensory impairments in home care and long-term care using interRAI data from across Canada.

BACKGROUND: In the general population, sensory impairments increase markedly with age in adults over 60 years of age. We estimated the prevalence of hearing loss only (HL), vision loss only (VL), and a combined impairment (i.e., dual sensory loss or DSL) in Canadians receiving home care (HC) or long-term care (LTC). METHODS: Annual cross-sectional analyses were conducted using data collected with one of two interRAI assessments, one used for the HC setting (n = 2,667,199), and one for LTC (n = 1,538,691). Items in the assessments were used to measure three mutually exclusive outcomes: prevalence of VL only, HL only, or DSL. Trends over time for each outcome were examined using the Cochran-Armitage trend test. A negative binomial model was used to quantify the trends over time for each outcome while adjusting for age, sex and province. RESULTS: In HC, there was a significant trend in the rate for all three outcomes (p < 0.001), with a small increase (roughly 1%) each year. In HC, HL was the most prevalent sensory loss, with a rate of roughly 25% to 29%, while in LTC, DSL was the most prevalent impairment, at roughly 25% across multiple years of data. In both settings, roughly 60% of the sample was female. Males in both HC and LTC had a higher prevalence of HL compared to females, but the differences were very small (no more than 2% in any given year). The prevalence of HL differed by province after adjusting for year, age and sex. Compared to Ontario, Yukon Territory had a 26% higher rate of HL in HC (relative rate [RR] = 1.26; 95% confidence interval [CI]:1.11, 1.43), but LTC residents in Newfoundland and Labrador had a significantly lower rate of HL (RR: 0.57; CI: 0.43, 0.76).When combined, approximately 60% of LTC residents, or HC clients, had at least one sensory impairment. CONCLUSIONS: Sensory impairments are highly prevalent in both HC and LTC, with small sex-related differences and some variation across Canadian provinces. The interRAI assessments provide clinicians with valuable information to inform care planning and can also be used to estimate the prevalence of these impairments in specific population sub-groups.

Building a new life: a qualitative study of how family carers deal with significant changes.

BACKGROUND: Family carers of persons living with dementia who are residing in long term care (LTC), often experience significant changes in their roles and relationships which affects mental and physical health. Research has focused on describing the carers' experience, but not on how they deal with these changes or their perceptions of support needs. The purpose of this study was to explore how family carers of persons living with dementia residing in LTC deal with significant changes and to understand how best to support these carers. METHODS: Eight face-to-face audio-recorded focus group interviews were conducted with 45 participants from September 2019 to January 2020, as part of a larger study aimed at guiding the adaptation of an online toolkit to support family carers of persons living with dementia residing in LTC. Applied thematic analysis was used to analyze the focus group data. FINDINGS/RESULTS: Carers dealt with the significant changes they experienced through the process of "building a new life" consisting of two sub-processes: a) building new relationships (with their family member, LTC staff and others outside of LTC), and b) finding space for themselves (sharing of care and finding balance). Understanding dementia, support from others (staff, family and friends), connecting with resources, and being included in care decisions helped carers build a new life. CONCLUSION: The process of building a new life describes the ways that family carers deal with the life-altering changes they experienced when a family member is admitted to LTC. Carers may be supported in building their new life, by providing them with information about dementia and how to relate to staff and their family member living with dementia. The quality of care being provided and the LTC environment may also play an important role in how carers deal with the significant changes they experience.

Coping strategies and quality of life among Thai family carers of community-dwelling persons living with dementia: A cross-sectional study.

AIMS: To examine the association between coping strategies and quality of life (QOL) among Thai family carers of persons living with dementia. DESIGN: A descriptive correlational quantitative design. METHODS: Data were collected between January 2021 and April 2021. A multi-pronged approach for recruitment was used. Participants completed measures assessing carer demographic characteristics, coping styles, QOL, perceived stress and perceived social support. Hierarchical multiple regression analysis was used to determine the association between types of coping strategies used and QOL scores, adjusting for carer characteristics and carers' stress and social support. RESULTS: There were 86 participants (mean age 52.84 years), and the majority were female (87.2%). After adjusting for covariates, hierarchical multiple regression revealed that only positive emotion-focused coping demonstrated a statistically significant association with total QOL scores. Problem-focused coping and negative emotion-focused coping were not significantly associated with total QOL scores of Thai family carers of persons living with dementia. CONCLUSION: Positive emotion-focused coping was associated with improved QOL scores. This finding supports the use of positive emotion-focused coping in Thai family carers of persons living with dementia, which potentially could improve the QOL of this population. IMPACT: It is essential to differentiate between positive and negative emotion-focused coping to generate valid estimates of the association between coping and QOL. Nurses should encourage carers to use positive emotion-focused coping strategies as these strategies were found to be helpful in enhancing carers' QOL.

Going From Zero to 100 in Remote Dementia Research: A Practical Guide.

Remote approaches for dementia research are required in the era of COVID-19, but moving a research program from in person to remote involves additional considerations. We recommend using outcome measures that have psychometric properties for remote delivery, and we recommend against adapting in-person scales for remote delivery without evidence for psychometric equivalency. We suggest remote research designs that maximize benefit for participants, which could have implications for control groups. Researchers should plan for flexibility in their methods for remote research and must not assume all participants will be able to videoconference; telephone-only research is possible. We recommend performing an assessment of information communication technology infrastructure and prior exposure to this technology with each participant before making a final choice on remote methods for research. In general, researchers should adapt their methods for remote research to each participant rather than requesting participants to adapt to the researchers. Screening for sensory loss should be conducted, and the impact of this on the use of technology for remote research should be considered. In this viewpoint, we detail how individualized training is required prior to engaging in remote research, how training plans interact with cognitive impairments and, finally, the steps involved in facilitating technology-based remote data collection.

Interventions to address social connectedness and loneliness for older adults: a scoping review.

BACKGROUND: Older adults are at risk for loneliness, and interventions to promote social connectedness are needed to directly address this problem. The nature of interventions aimed to affect the distinct, subjective concepts of loneliness/social connectedness has not been clearly described. The purpose of this review was to map the literature on interventions and strategies to affect loneliness/social connectedness for older adults. METHODS: A comprehensive scoping review was conducted. Six electronic databases were searched from inception in July 2015, resulting in 5530 unique records. Standardized inclusion/exclusion criteria were applied, resulting in a set of 44 studies (reported in 54 articles) for further analysis. Data were extracted to describe the interventions and strategies, and the context of the included studies. Analytic techniques included calculating frequencies, manifest content analysis and meta-summary. RESULTS: Interventions were described or evaluated in 39 studies, and five studies described strategies to affect loneliness/social connectedness of older adults or their caregivers in a qualitative descriptive study. The studies were often conducted in the United States (38.6%) among community dwelling (54.5%), cognitively intact (31.8%), and female-majority (86.4%) samples. Few focused on non-white participants (4.5%). Strategies described most often were engaging in purposeful activity and maintaining contact with one's social network. Of nine intervention types identified, the most frequently described were One-to-One Personal Contact and Group Activity. Authors held divergent views of why the same type of intervention might impact social connectedness, but social contact was the most frequently conceptualized influencing factor targeted, both within and across intervention types. CONCLUSIONS: Research to test the divergent theories of why interventions work is needed to advance understanding of intervention mechanisms. Innovative conceptualizations of intervention targets are needed, such as purposeful activity, that move beyond the current focus on the objective social network as a way to promote social connectedness for older adults.

Definition, Determinants, and Outcomes of Social Connectedness for Older Adults: A Scoping Review.

Social connectedness is critical to older adults' well-being, but is defined inconsistently and its determinants and outcomes have not been comprehensively described. The current scoping review mapped the definitions, determinants, and outcomes of social connectedness for older adults. By identifying the conceptual features described in most articles, social connectedness was defined as: the opposite of loneliness, a subjective evaluation of the extent to which one has meaningful, close, and constructive relationships with others (i.e., individuals, groups, and society). Social connectedness is operationalized into: (a) caring about others and feeling cared about by others, and (b) feeling of belonging to a group or community. One's social network and life satisfaction were the most frequently proposed determinant and outcome, respectively. This review resulted in a clear definition of social connectedness and comprehensive description of its possible determinants and outcomes. This clarity will support the development of interventions to enhance social connectedness for older adults. [Journal of Gerontological Nursing, 43(7), 43-52.].

Embedding the perceptions of people with dementia into quantitative research design.

PURPOSE: Patient perspectives about quality of life are often found in the results of qualitative research and could be applied to steer the direction of future research. The purpose of this paper was to describe how findings from a body of qualitative research on patient perspectives about quality of life were linked to a clinical administrative dataset and then used to design a subsequent quantitative study. METHODS: Themes from two systematic reviews of qualitative evidence (i.e., metasyntheses) identified what affects quality of life according to people with dementia. Selected themes and their sub-concepts were then mapped to an administrative dataset (the Resident Assessment Instrument 2.0) to determine the study focus, formulate nine hypotheses, and select a patient-reported outcome. A literature review followed to confirm existence of a knowledge gap, identify adjustment variables, and support design decisions. RESULTS: A quantitative study to test the association between conflict and sadness for people with dementia in long-term care was derived from metasynthesis themes. Challenges included (1) mapping broad themes to the administrative dataset; (2) decisions associated with inclusion of variables not identified by people with dementia from the qualitative research; and (3) selecting a patient-reported outcome, when the dataset lacked a valid subjective quality-of-life measure. CONCLUSIONS: Themes derived from a body of qualitative research capturing a target populations' perspective can be linked to administrative data and used to design a quantitative study. Using this approach, the quantitative findings will be meaningful with respect to the quality of life of the target population.

Does the quality of life construct as illustrated in quantitative measurement tools reflect the perspective of people with dementia?

AIMS: A discussion of the extent to which people with dementia's perspectives on quality of life have been included in quantitative research. BACKGROUND: Capturing the perspective of people with dementia may improve understanding of their quality of life. Quantitative tools to assess quality of life exist, but the extent to which these reflect the perspective of people with dementia has not been evaluated. DESIGN: A discussion paper. DATA SOURCES: Ten tools (designed between 1992-2012) to measure quality of life from the perspective of people with dementia were located from existing reviews. DISCUSSION: Each tool was rated according to the extent to which the developers included the perspectives of people with dementia at three different points of quality of life conceptualization: during quality of life assessment, to identify quality of life domains and to define an overall conceptual framework. This analysis demonstrates that tool developers were inconsistent in their approach to including the perspectives of people with dementia to understand quality of life. The perspective of people with dementia was included primarily to assess, but not to select domains or define overall quality of life. IMPLICATIONS FOR NURSING: Nurses should consider not only who assesses quality of life, but also whose understanding of quality of life is being assessed. CONCLUSION: It is unclear whether the quantitative quality of life literature reflects the perspective of people with dementia. Debate is needed regarding the impact of this issue on the lives of people with dementia.

Distance interventions for enhancing preparedness in informal caregivers of older adults: A systematic review protocol.

INTRODUCTION: Informal caregivers provide care to older adults but report lack of preparedness to enact the role. Intervention programs delivered by distance offer one alternative to support preparedness. Three review studies conducted to date have highlighted the benefits of distance interventions for enhancing preparedness among informal caregivers of older adults. However, these reviews have been limited in presenting and discussing how intervention components influenced outcomes. Additionally, they have not compared different distance delivery approaches for informal caregivers of older adults or assessed their varying impact on preparedness outcomes. These limitations make the effectiveness of diverse distance approaches unclear. AIM: To evaluate the effects of distance interventions aimed at enhancing preparedness among informal caregivers of older adults. METHODS: This protocol follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P) guidelines and is guided by the Cochrane Handbook for Systematic Reviews of Interventions. It has been registered in PROSPERO (CRD42023400668). Databases used in the search will include CINAHL, Cochrane Library, EMBASE, MEDLINE, PsycINFO, Scopus, and ProQuest Theses and Dissertations Global. The search will not be restricted by publication year to include all relevant studies. Studies published in English and Portuguese will be included. Study quality will be assessed using Downs and Black's checklist. If metanalysis is possible, it will be performed using the ReviewManager (RevMan) software. CONCLUSIONS: The study will be the first of its type to systematically review and synthesize components and approaches of distance interventions aimed at supporting preparedness of informal caregivers of older adults.

Social connection measures for older adults living in long-term care homes: a systematic review protocol.

BACKGROUND: Various measures have assessed social connection in long-term care (LTC) home residents. However, they use inconsistent terminology, conceptualizations, and operationalizations of social connection. In this systematic review protocol, we propose a study that will characterize measures that assess aspects of LTC home residents' social connection using a unified conceptual model. The objectives are to (1) describe and analyze the measures and (2) evaluate their measurement properties. METHODS: A literature search was conducted in MEDLINE ALL (Ovid), Embase Classic and Embase (Ovid), Emcare Nursing (Ovid), APA PsycInfo (Ovid), Scopus, CINAHL Complete (EBSCOhost), AgeLine (EBSCOhost), and Sociological Abstracts (ProQuest). We will include primary research papers with no language limit, published from database inception. We will include studies of a measure of any aspect of social connection in LTC home residents that report at least one measurement property. Independently, two reviewers will screen titles and abstracts, review full-text articles against eligibility criteria, and extract data from included studies. In objective 1, we will analyze identified tools using an adapted framework method. In objective 2, we will evaluate each measure's measurement properties using COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. We will engage experts and stakeholders to assist with interpreting results and translating knowledge. DISCUSSION: Our findings will inform the social connection in long-term care home residents (SONNET) study's development of a novel, person-centered measure for social connection in LTC home settings. We will present our findings in academic and non-academic forums, including conferences, peer-reviewed journals, and other publications. SYSTEMIC REVIEW REGISTRATION: Prospero-"Systematic review of measures of social connection used in long-term care home research." CRD42022303526 .

"Nobody But a Family Member Can Do It Quite the Same Way": Understanding the Meaning of Mealtimes to Residents and Families in Long-Term Care Homes During the Pandemic.

BACKGROUND AND OBJECTIVES: Meals in long-term care (LTC) are essential to residents not only for nutrition and their physical well-being but also for their social interactions supporting resident quality of life. This study aims to understand the mealtime experiences of residents and family care partners during the coronavirus 2019 disease (COVID-19) pandemic when restrictions were put in place in LTC and retirement homes. RESEARCH DESIGN AND METHODS: Interpretive description analysis of qualitative interviews in LTC and retirement homes, with 17 family care partners and 4 residents. Convenience and snowball sampling was used to recruit participants for telephone interviews. RESULTS: Three themes were generated. Compromised mealtimes mean compromising community-meals were seen by participants as a key social and community-building event of the home; they reported this loss of community with pandemic restrictions. Participants noted that family care partners are indispensable at meals for social, psychological, and physical support. The dangers of eating alone spoke to the social isolation reported by participants that occurred during the pandemic and the risks they described of eating alone. DISCUSSION AND IMPLICATIONS: This study confirms the importance of mealtimes in LTC and retirement homes to community building and extends our understanding of the importance of family inclusion at meals and why eating alone, as happened during COVID-19, was so detrimental to residents. Effort needs to be made to value this communal activity for the well-being of residents.

Assessing social connection for long-term care home residents: A scoping review of measure content.

INTRODUCTION: Social connection comprises distinct but interrelated aspects describing how individuals connect to each other. Various measures have assessed multiple aspects of social connection in long-term care (LTC) home populations, but they use inconsistent terminology, making it unclear what aspects are measured. This scoping review describes how social connection is assessed by measures that have been used in LTC home residents. METHODS: This review followed the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. Two systematic literature searches combining search terms for social connection AND LTC home residents AND measurement properties were conducted in eight electronic databases from inception to April 2022. Included studies reported the development or psychometric testing of measures which assessed social connection in LTC home residents. A content analysis with a deductive-inductive approach was used to analyze the measures' content and an adapted Framework Method was used for data management. Findings report each measure's items and the assessed aspects of social connection. Dementia and non-dementia-specific measures had content, administration, and scoring compared. RESULTS: From 8753 records, 58 studies reporting on 14 dementia-specific and 28 non-dementia-specific social connection measures were identified, including complete measures, subscales, and single items. These measures assessed social network (52.4%), social isolation (11.9%), social interaction (47.6%), social engagement (31.0%), social support (33.3%), social connectedness (21.4%), and loneliness (9.5%). A total of 27 (64.3%) of the measures included more than one aspect of social connection. Dementia-specific measures most often assessed social interaction whereas non-dementia-specific measures most often assessed social network, social interaction, and social support. Dementia-specific measures typically relied on a proxy response, whereas non-dementia-specific measures more often used self-report. DISCUSSION: Existing social connection measures in LTC home settings operationalize seven aspects of social connection and differ according to the target population (dementia or non-dementia-specific). These findings will inform future measure selection and development. Highlights: Social connection is important to long-term care (LTC) home residents' quality of life.Social connection has been assessed by quantifying/describing relationships.Existing measures usually assess more than one aspect of social connection.These aspects cover several interlinked observed or experienced domains.Dementia and non-dementia-specific measures differ in assessing social connection.

Assessing social connection for long-term care home residents: Systematic review using COnsensus-based Standards for the selection of health Measurement INstruments guidelines.

Social connection is important for long-term care (LTC) residents' quality of life and care. However, there is a lack of consensus on how to measure it and this limits ability to find what improves and impairs social connection in LTC homes. We therefore aimed to systematically review and evaluate the measurement properties of existing measures of social connection for LTC residents, to identify which, if any, measures can be recommended. We searched eight electronic databases from inception to April 2022 for studies which reported on psychometric properties of a measure of any aspect(s) of social connection (including social networks, interaction, engagement, support, isolation, connectedness, and loneliness) for LTC residents. We used COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines to evaluate the measurement properties reported for each identified measure and make recommendations. We identified 62 studies reporting on 38 measures; 21 measured quality of life, well-being or life satisfaction and included a social connection subscale or standalone items and 17 measures specifically targeted social connection. We found there was little high-quality evidence on psychometric properties such as sufficient content validity (n = 0), structural validity (n = 3), internal consistency (n = 3), reliability (n = 1), measurement error (n = 0), construct validity (n = 4), criterion validity (n = 0) and responsiveness (n = 0). No measures demonstrated satisfactory psychometric properties on all these aspects, so none could be recommended for use. Thirty-four measures have the potential to be recommended but require further research to assess their quality and the remaining four are not recommended for use. Our review therefore found that no existing measures have sufficient evidence to be recommended for assessment of social connection in residents of LTC homes. Further validation and reliability studies of existing instruments or the development of new measures are needed to enable accurate measurement of social connection in LTC residents for future observational and interventional studies. Highlights: Social connection is fundamental to person-centered care in long-term care homes.There is insufficient evidence for the reliability and validity of existing measures.No current measures can be recommended for use based on existing evidence.A reliable and valid measure of social connection is needed for future research.

IMPAACT: IMproving the PArticipAtion of older people in policy decision-making on common health CondiTions - a study protocol.

INTRODUCTION: Rapid population ageing is a demographic trend being experienced and documented worldwide. While increased health screening and assessment may help mitigate the burden of illness in older people, issues such as misdiagnosis may affect access to interventions. This study aims to elicit the values and preferences of evidence-informed older people living in the community on early screening for common health conditions (cardiovascular disease, diabetes, dementia and frailty). The study will proceed in three Phases: (1) generating recommendations of older people through a series of Citizens' Juries; (2) obtaining feedback from a diverse range of stakeholder groups on the jury findings; and (3) co-designing a set of Knowledge Translation resources to facilitate implementation into research, policy and practice. Conditions were chosen to reflect common health conditions characterised by increasing prevalence with age, but which have been underexamined through a Citizens' Jury methodology. METHODS AND ANALYSIS: This study will be conducted in three Phases-(1) Citizens' Juries, (2) Policy Roundtables and (3) Production of Knowledge Translation resources. First, older people aged 50+ (n=80), including those from traditionally hard-to-reach and diverse groups, will be purposively recruited to four Citizen Juries. Second, representatives from a range of key stakeholder groups, including consumers and carers, health and aged care policymakers, general practitioners, practice nurses, geriatricians, allied health practitioners, pharmaceutical companies, private health insurers and community and aged care providers (n=40) will be purposively recruited for two Policy Roundtables. Finally, two researchers and six purposively recruited consumers will co-design Knowledge Translation resources. Thematic analysis will be performed on documentation and transcripts. ETHICS AND DISSEMINATION: Ethical approval has been obtained through the Torrens University Human Research Ethics Committee. Participants will give written informed consent. Findings will be disseminated through development of a policy brief and lay summary, peer-reviewed publications, conference presentations and seminars.