Social Care Providers Research Articles

Designing meaningful surveys: Engaging experts-by-lived experience in the development of a patient-reported experience measure (PREM) of integrated home and community care.

Background: People want to live well in their homes and communities for as long as possible. To support this, some home care services in Ontario, Canada are restructuring to integrate medical and personal care, with community-based social care and services (e.g., friendly visiting, meals, and transportation). Measures of client experience, referred to as ‘patient-reported experience measures’ (PREMs) are important for guiding health system improvements in a way that is meaningful to clients. A current challenge is that existing PREMS are insufficient for measuring client experience of new models of home and community care.
 Aims: This study engaged clients, family/friend caregivers, and health and social care providers in a participatory process to develop relevant items for a PREM for integrated home and community care. This engagement process aimed to provide opportunities for client feedback to support integrated care and ensure the new PREM will collect data that can inform health system improvements in ways that are most meaningful to clients and caregivers.
 Methods: Guided by Streiner et al.’s (2015) approach, we engaged experts-by-lived experience in content and face validity testing of an item pool matrix to determine relevance and coverage of domains and items. The matrix consisting of 3 domains, 14 categories, and 72 items was based on a literature review of home and community PREMs (32 PREMs with 550+ items) and interviews with healthcare leader experts (n=6). To conduct content and face validity testing we held three focus groups with home care recipients and family/friend caregivers (n=17) as well as individual interviews with health and social care providers working in home care (n=15). We analyzed transcripts line-by-line to generate themes related to face and content validity of each item. 
 Results: Participants agreed that client experience of innovative home and community care is well captured by three domains: equity, continuity, and life care. They also agreed the corresponding 72 proposed items had face validity. Suggestions to improve content validity included that items be adapted to recognize the role of caregivers; the role of primary providers and/or coordinators in delivering well organized care; and shifting from a focus on self-management to having needed supports to stay in the home, and collaboratively developing care plans. Participants excluded several items due to being vague or not meaningful, such as asking, “my providers understood my needs”. Based on feedback, 22 items were removed from the matrix.
 Learnings: Engaging experts-by-lived experience in development of PREMs helps ensure the data generated from PREMs will be meaningful and useful for guiding health system improvements that matter to clients. Relying on existing literature and traditional expert opinion alone did not guarantee relevance or coverage of items. 
 Next steps: The feedback from participants will be used to further refine and scale the PREM items. Clients of home care and family/friend caregivers will then be re-engaged in cognitive testing to identify issues related to answering the questions on the scale. Once complete, the PREM will undergo psychometric testing.

Building a Better System to Support Family Caregivers: Engaging Multi-level Interdisciplinary Stakeholders in Micro, Meso, and Macro Level Learning Health System Design.  

The current Canadian healthcare workforce shortage and care crisis demands innovative solutions, yet it takes 17 years for healthcare innovations to reach 50% adoption in clinical practice. Healthcare workforce shortage solutions include expanding team-based care, moving integrated services closer to home[, and including Family Caregivers [FCGs] as partners on the care team, rather than treating them as visitors or patient accompaniments. Integrating FCGs as partners on the healthcare team improves patient care, health, and well-being, reduces the length of hospital stays, supports aging in the right place, promotes effective communication, and reduces healthcare providers’ workload. While FCGs and the people they care for require integrated care and services coordinated around their comprehensive needs, research confirms that FCGs remain invisible, and often marginalized by healthcare systems.
 Aim: Detail the micro-meso-macro-level elements and roles needed for building integrated FCG support systems.
 Results: As FCGs, the people they care for, and their care trajectories are diverse, an integrated system to support FCGs includes: 1) macro-level policy leadership 2) meso-level FCG-friendly communities, community organizations, health and social care systems, and providers trained to support FCGs; 3) micro-level assessment of FCGs needs and supports tailored to needs/goals, and 4) evaluation and practice improvement research. Three critical elements to Health Learning Approaches are: 1) Prioritize service needs and a design improvement approach; 2) Strengthen and link the assets required to operationalize rapid learning and a quality improvement approach, and 3) Establish a network of rapid-learning champions to drive and sustain action. Our Alberta-based Caregiver-Centered Care Research Program works at collaborating with stakeholders interested in enacting a collective impact approach to build a better system of all the essential elements of integrated health and social care programs and services needed to support FCG's well-being and sustain their caregiving. First, we convened a series of consultations to prioritize approaches to support FCGs. Stakeholders prioritized competency-based education for healthcare providers about person-centered care for FCGs. Accordingly, we engaged FCGs, researchers, health and social care providers/leaders, and policymakers to co-design and deliver free, online Foundational and Advanced education about providing person-centered care for FCGs to health and social care providers. Now, we need to strengthen our network and link assets. We convened a series of six webinars designed to raise awareness of FCGs' work, the need for systemic FCGs support, and to consult stakeholders about the next steps to integrate health and social care systems to support FCGs (October 20 – November 29, 2022). The webinars have also built our network of Canadian collaborators.
 Conclusions: The collaboration required to build a better system to support Canadian FCGs takes facilitation and time. The learning health system framework seems appropriate to approach the complex system and culture changes required more efficiently and effectively. 
 Implications: Learning Health Systems and co-design by communities of patients, FCGs, health and social care providers/leaders, and researchers are currently regarded as a superior approach to improving healthcare and health outcomes. A strength of our team is collaborative, trusting relationships. 

Describing the scope of practice of patient navigators for older adult patients with complex care needs

Introduction: Transitions in care (e.g., discharge to home) are stressful for patients, especially for older adults living with complex conditions. To bridge the care gap and improve the continuity of care across care transitions, a new model of care was introduced at a large metropolitan hospital in partnership with a community agency that uses patient navigators which are embedded in the hospital’s care teams, including emergency, acute, and rehabilitative care. Patient Navigators are regulated healthcare professionals with experience in care coordination to assist with care planning during a patient's hospital stay, and to support patients/families in their care journey to their home for up to 90 days. There is qualitative evidence demonstrating that patient navigators have increased patient/caregiver satisfaction at the hospital but further evidence is required to characterize the scope of practice of navigators to better understand how they are integrating with the larger clinical team. 
 Aim∕Objectives∕Theories∕Methods: The purpose of this study was to characterize the scope of practice of patient navigators. The objectives were to identify the characteristics of patients who have been supported by a navigator and to determine the reasons for referral and intervention, service length, and post-discharge location. To accomplish this aim, a cohort observational study design approach was used, which included using clinical notes collected by the patient navigator as well as hospital decision-support chart data between November 2019 to November 2021. Frequencies and descriptive statistics were used to analyze the data.
 Highlights∕Results∕Key Findings: Of the 176 cases referred to the patient navigator, 28 were deemed not appropriate for the service, 53 received consults (3 days or less of support), and 90 were assigned to the navigator caseload. Of the 90 on the navigator caseload, the average age was 78.9 (SD=9.9) and 44 had a caregiver present to support them. The top reasons were: 1) service connection to community service; 2) housing related; 3) discharge planning, and 4) provider connection. The average service days was 74 days (Median=49 days). The post-discharge location were: home (66%), rehab/reactivation (15%), palliative/deceased (13%), long-term care (3%), acute care (1%), or unknown (2%).
 Conclusion: To our knowledge, this is the first Canadian study to describe a patient navigator program for older adults with complex care needs in a hospital setting. The finding suggest that patient navigators are playing an active role in helping older adult patients by linking them to appropriate services while also supporting patients and caregivers. The data illustrates that it is a high resource service, with clients receiving supports over a 74 day period, but led to a large proportion of clients being returned back home. Since this is a novel care model, the findings will help provide the evidence needed to make a case for implementing patient navigators.
 Implications: The Patient Navigator played an important role in advocacy liaising with health and social care providers in the community, and a critical role in discharge planning in the hospital providing follow-up support to patients/families while they transitioned back home for up to 90 days.

Integrating health and social care in the community to support a new model of Long-term Life Care at home.

Background: Long-term care (LTC) reform was an international priority well before the COVID-19 pandemic. While strategies to promote de-institutionalization, rehabilitation, caregiver support and enhanced home and community care have varied by country in terms of implementation and success, the pandemic universally reinforced existing system-specific barriers and weaknesses. In Canada, heightened access issues and silo-ed delivery of community-based medical, functional and social care and support services contributed to increased caregiver burnout and growing residential care waitlists.
 Aims: This study aimed to develop an alternative model to residential LTC that would enable older adults to live, age and receive care at home long-term. The specific objectives were to: 1) describe variation in medical, functional and psychosocial ‘life care’ needs of community-dwelling older adults; 2) develop a model of needs-based care with packages to support variation in needs; and 3) to assess preliminary feasibility of the model using the Ontario, Canada (population 15 million) health care market. 
 Approach: An exploratory, sequential, mixed methods design was applied (5). Phase 1 involved historical analysis of 2017-18 Ontario interRAI home care assessments (n=283,601) and 2018-19 Ontario service utilization data (n=115,000) to develop unique patient vignettes. Phase 2 was a 6-week modified eDelphi process with interdisciplinary home care clinicians (n=42) to develop care packages for the model, including types and dose of care and services. Six focus groups (n=67) were then conducted with older adults, caregivers and health and social care providers across Ontario to validate and refine the model. Phase 3 explored feasibility of the emerging model through comparison of the home care patient vignettes with the needs of the residential LTC population using 2017-18 Ontario interRAI data (n=115,000). Preliminary costing of the model was based on existing system per diems and direct care costs in comparable transitional care models.
 Results: A model of ‘Long-term Life Care’ at home (LTLifeC model) includes care packages to meet the dominant life care needs of 6 unique patient groups representing known predictors of LTC home admission: social frailty, caregiver distress, chronic disease, cognition/ behaviours, medical complexity, and geriatric syndromes. Overlap in care needs of home care and LTC populations confirms potential to shift care to the community; yet current home care clients receive six times less daily care hours on average, compared to residential LTC standards. New LTLifeC packages of home-based interdisciplinary care ranged from 3.1-8.9 hours daily, including comprehensive assessment, integrated care planning, direct care provision and community referral(s). Initial cost comparisons suggest plausible short and long-term system benefits of model adoption.
 Learnings: Evidence-informed decision making for sustainable home and community care as part of an integrated system of LTC requires attention to both routinely collected health information, or ‘big data’, and expertise by lived-experience. Adoption of the LTLifeC model will require decision-making to prioritize societal values for living and aging at home and in community. 
 Next Steps: An evaluation framework will be developed to guide pilot implementation and testing of the LTLifeC model through the lens of the quadruple aim.

The Thursday Appetizer series: a community of practice for healthy and active aging in Barcelona. Identification of challenges to design innovative solutions that respond to the real needs of older persons.

In response to major challenges facing the aging population, we have launched the Barcelona Aging coLLaboratory (BALL), an open-innovation ecosystem focused on promoting healthy and active aging through the co-creation, development, testing and evaluation of innovative products and services in real-life settings. In line with the quadruple helix innovation framework, BALL engages all relevant stakeholders -older persons, caregivers, health and social care providers, third sector institutions, research and universities, and private companies- in this process. 
 The point of entry by which BALL gives a voice to citizens, older persons and caregivers is the “Thursday Appetizer” series, which consists of participatory sessions during which seniors and other stakeholders work together on generating ideas and defining how to implement and evaluate them. The mission of the project is to identify aging-related challenges at local and global levels and to develop potential solutions. A 3-session pilot phase is currently underway, following a waterfall methodology, with each session conditioning the following one. The first session focused on identifying general challenges related to aging. We followed a brainstorming methodology and classified all challenges identified into four categories: digital gap (connectivity and access to information), loneliness, age discrimination and the defense of the rights of older people, and planning for healthy and active aging. The second session focuses on prioritizing one of these groups and exploring possible solutions to face that specific challenge, again adopting a brainstorming methodology. The third session, then, focuses on these solutions in greater depth, comparing and contrasting them and analyzing strengths and weaknesses and commonalities and differences, with the goal of eventually co-creating a specific product or service. If needed, experts in the area of the challenge being tackled will be invited to participate in future “Thursday Appetizer” sessions.
 Once the pilot stage is finished, we will provide feedback to participants by sending them a wrap-up of the three sessions, as well as a personalized thank you letter including information regarding resources appropriate to their needs. Furthermore, we will conduct an evaluation of the impact and viability of the pilot in order to co-design a scale-up strategy for 2023, along with participants and the rest of stakeholders. Results of this initiative will be openly published on the BALL website (www.ballaginglab.org) and disseminated in order to increase the social awareness and to attract additional participants. Our long-term objective is to turn the “Thursday Appetizer” series into the breeding ground of innovative products and services co-created by BALL. This way, we will ensure that the solutions we propose adequately respond to real needs from the very beginning. 
 By including the views of end users from the very beginning, we expect to shorten the delay between the detection of needs and the social return on innovation in aging.

Stuck in Hospital: how can we make integrated care a reality for people with a learning disability and / or autism who experience long stays in assessment & treatment settings?

Introduction: Integrating care so that people with learning disabilities and/or autistic people can receive support at home rather than in institutional assessment and treatment units is a priority in the UK and many other countries. Despite the recognition of its importance, progress on timely and coordinated discharge has been slow. Surprisingly little previous research has engaged directly with people with learning disabilities and/or autistic people, their families or front-line care staff to understand the issues from their perspectives. This project has sought to address this gap.
 Community of Interest: Professionals, policy makers, researchers, people with a learning disability and / or autism, and family carers connected with this area of integrated care policy and practice.
 Engagement: We worked with a Reference Group of people with learning disabilities and/or autistic people and their families to co-design our approach, sense check findings and support dissemination. Reference Group members were reimbursed for any expenses, paid for their time, and received appropriate support and training for the tasks in which they are involved. The project was also designed and delivered in collaboration with a self-advocacy group.
 Overview: We initially conducted a formal review of the research and grey literature, identifying rates of delayed discharge for people with learning disabilities and/or autistic people in long-stay hospital settings, the methods used to identify such rates and the solutions proposed. 
 Next, we worked with three long-stay hospital sites from across the UK in order to conduct: 
 In-depth work with ten people with learning disabilities and/or autistic people per site, and with a family member, to understand their journey through services over time, their experience of long-stay hospital provision, how care was co-ordinated to meet their aspirations, the kinds of lives they would like to be living, and the barriers that are preventing them from leaving hospital
 Focus groups with front-line staff and interviews with a commissioners for each of the 30 people with learning disabilities and/or autistic people.
 The perspectives of social workers supporting our 30 participants, as well as of advocates and social care providers working with people leaving long-stay hospital settings
 Results: The data from the study is currently being analysed with the final report due by the end of December 2022.
 
 Insights: From our analysis to date, we have identified the following recommendations for policy & practice: see the person behind the labels; don’t make people jump through more hoops than is really needed; help hospital staff know what’s available in the community; give people the chance to try life outside; help people with the trauma they’ve experienced; and. don’t let people fall through the cracks between services.
 Next steps: Alongside completing the report, the research team have a practice guide in publication, a film highlighting main implications, and an accessible practice guide. The team are planning a follow up study with our lived experience reference group which will explore people’s quality of life post-discharge in relation to different approaches to facilitating more co-ordinated and person-centred care.

Health System Transformation Playbook & Unified Care Model: An Integrated Design, Systems & Complexity Thinking Approach for Care Integration & Health System Transformation

In response to rising costs and national health system policy change, the Singapore National Healthcare Group reorganized into three Integrated Care Organizations (ICOs), with Yishun Health (YH) responsible for the health of 320,000 residents in Northern Singapore. YH undertook numerous health system transformation (HST) activities in partnership with health and social care providers to improve outcomes.
 HST benefits from greater stakeholder involvement that reinforces agency and encourages exaptive innovations, taking system-wide views that generate prescriptive models for change than descriptive models of problems, and embracing iterative re-design through time. Design thinking (DT), systems thinking (ST), and complexity thinking (CT) offer useful methods and tools with inherent limitations. We applied an integrated DT, ST and CT approach (DSCT) to enable HST within our regional population health system through a series of leadership retreats and envisioning workshops with over 100 teams both within YH and with regional partners, and co-created over 1,000 change ideas to transform YH into a people-centred, value-driven, and integrated regional population health system.
 Health System Transformation Playbook (HSTP) is our DSCT-enabled methodology developed to systematically design, prioritize and test HST actions, anchored on an iterative 3-step process involving story-telling, model building and pathfinding that together tackles the scale of transforming complex adaptive systems through time. HSTP guides that model-building begins with the latest future-state model to ensure new change ideas build on current progress; model boundaries and hierarchy are defined and managed fluidly across scale and time to preserve system coherence; impact analysis of change ideas start at the highest system to optimize primary system purpose, and prescribed interventions with lower agreement or certainty are consciously managed to guard against incremental-only innovations.
 Also resultant is the YH Unified Care Model (UCM) and its cascade of integrated service delivery models based on UCM design principles: 1) biopsychosocial, needs- and assets-based approach to health, throughout a resident’s life course, for the entire regional population, 2) strength- and relationship-based approach to participatory care involving residents, caregivers and community, 3) single care plan across providers, 4) interactions among providers based on population health needs, are strategic, and organizational, 5) care defined from identification to resolution of needs, and system boundaries are defined by the nature of need, 6) coordination of care to efficiently generate health assets while meeting needs, across all sites and transitions of care, 7) carers and care institutions form an ICO and jointly optimize resident-centred outcomes and population value. In turn, the UCM has generated prescribed interventions and prioritized actions to accelerate YH HST including the Integrated Medical Clinic to meet complex chronic medical and social needs, and the UCM Performance Framework. 
 HST is complex and has potential for unintended systemic consequences, and requires local contextualization. HSTP offers a systemic, practice and learning-based HST and organization development methodology that engages people in all health system sub-systems to accelerate change towards people-centred, integrated and value-driven population health systems, demonstrated through UCM. Deeper resident and stakeholder engagement using HSTP and evaluation of HSTP and UCM is ongoing.

Health and social care experience and research perception of different ethnic minority populations in the East Midlands, United Kingdom (REPRESENT study).

Ethnic minority populations experience significant health and social care disparities; despite experiencing a greater burden of diseases, these groups are underrepresented in health and social care research. Consequently, related research can be less applicable to these population groups. The REPRESENT study aims to explore the health and social care experiences of ethnic minorities and other minoritised populations, their research interests and appropriate research practices. Focus groups and semistructured interviews were conducted between May and September 2022 with members of a number of ethnic minority communities in England. Data were audio recorded, transcribedand thematically coded using NVivo 12. Rigour was determined through extensive sampling, iterative data collection and analysis. Fifty-two ethnic minority members were engaged in group interviews and one-to-one interviews. Participants included representatives of the following groups: African Caribbean, Eastern European, Gypsy Travellers, Lesbian, Gay, Bisexual, Transgender, Queer, Intersexand Asexual+, Refugee/Asylum Seekers, Somali and South Asian communities. Interviews were also conducted with ethnic minority healthcare providers and researchers. Three overarching categories were identified: health information, medical service experiences, health and social care concerns and health research. Health and social care services challenges were mostly attributed to discrimination, delayed services, poor cultural relevanceand language and cultural barriers. The most influential information sources were local community organisations and word-of-mouth. The main health and social care concerns were chronic long-term health conditions, mental health, maternal healthand child development. Recommendations for research involved understanding the motivations for participation, improving communication and empowering communities. Top research priorities were long-term health conditions, health promotion and education, early care interventions and understanding community needs. Discrimination and bias in health and social care provision have severe implications for worsening ethnic health inequalities. Healthcare commissioning authorities and policymakers can leverage the preference of ethnic minority groups for pharmacy services and community organisations to improve access to care. Improving research interest and engagement requires understanding individual community needs, community sensitivity, research relevanceand cultural appropriateness. Members of ethnic minority Patient and Public Involvement and Engagementgroup and Community Advisory Boardsupported the REPRESENT study design, conceptualisation and report development.

ASSESSING THE SCALABILITY OF A COMMUNITY PROGRAM FOR OLDER ADULTS WITH DIABETES: BRIDGING THE RESEARCH–PRACTICE GAP

Abstract Implementing person-centred, cost-effective, and comprehensive self-management programs for older adults with multimorbidity and their caregivers in the health and social care system is challenging. Innovations that are effective under controlled research conditions often fail to produce similar results when implemented in real world settings to reach larger populations of older adults. Scalability assessment is a promising methodology to reduce this research-practice gap. This study aims to examine the scalability of a self-management intervention for older adults with diabetes and multimorbidity and their caregivers in two Canadian provinces. Provincial working groups, including patient partners, participated in the scalability assessment. The Intervention Scalability Assessment Tool (ISAT) guided data collection and analysis. Multiple methods were used to collect data, including an environmental scan, document review, and interviews with key informants. Provincial workshops were held to review scalability results, determine the program’s scale-up readiness, and identify strategies to enhance scalability. Patient partners, health and social care providers and leaders, provincial decision-makers, and researchers gave high ratings to the readiness of the intervention and its alignment with practice and strategic policy initiatives. The evidence of effectiveness, delivery setting and workforce, and sustainability domains were rated lower. Participants recommended: 1) focusing on high-risk patients, which would be cost effective and likely to demonstrate impact and 2) piloting targeted sites to embed the program within existing health care settings and infrastructure to gather more evidence on program effectiveness and implementation. Collaborative and structured scalability assessments are critical to mobilize innovative programs into health and social care practice.

SIMULATION IN AGE SUIT: AN INNOVATIVE NURSING EDUCATION INTERVENTION TO INCREASE THE UNDERSTANDING OF OLDER ADULTS

Abstract Background Negative attitudes towards older adults are often recognized in society, especially among health care providers. Lack of education in gerontology and geriatrics and limited practical training in nursing education have been identified as influencing aspects. Simulation in education through age suit has been recognized to increase empathy and reduce negative attitudes towards older adults. An innovative education intervention with simulation in age suit with a follow up reflection seminar was developed to counteract ageism and increase the understanding of aging, age related health problems, older adults and to influence the willingness to provide care to older adults. Methods The intervention with simulation in age suit, grounded in the pedagogy experiential learning, was implemented in the fourth semester in the three-year nursing education program. The simulation was conducted in a highly accessible home environment equipped with welfare technology and other technical aids. The nursing students were assigned a persona, a person with different health problems, and performed scenarios consisting of daily chores. Research on nurses’ experiences of the intervention and its sustainability through the education program and on perceptions of providing care for older adults, is conducted qualitatively and quantitatively in a doctoral project. Conclusion The learning acquainted through simulation in age suit became embodied both physically and psychologically. The simulation in age suit conveyed new insights as need of time and patience. The technology in the environment both hindered and facilitated activities in daily life. Implications suggested the need for all health and social care providers to carry out this simulation.

Trends in care commissioning

Andrew Rome, director of Revolution Consulting, which conducted a financial analysis of the largest children's social care providers, assesses the implications for commissioners of council care services

Evaluating the Forward with Dementia Campaign in Five Countries

Objective:The Forward with Dementia (FWD) project is a dementia awareness campaign that was implemented across five countries. The campaign included components such as websites (in four languages – www.forwardwithdementia.org), webinars, newsletters, and social media posts. This campaign is the fourth phase of a three-year longitudinal mixed methods study with five phases in five countries: Canada (New Brunswick, Ontario, Quebec), Australia, the Netherlands, United Kingdom, and Poland. The purpose of this study is to evaluate the implementation and perceived impact of the FWD websites and campaign in the five participating countries.Methods:The RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, Maintenance) was used to guide the campaign evaluation. The evaluation was drawn from Google Analytics, surveys, individual interviews, and report cards. Data collection occurred between September 2021 and May 2022.Results:There were approximately 124,945 page views across all FWD websites during the campaign. Participants of the surveys and interviews reported engaging in a range of campaign activities. They read information about receiving a diagnosis, stories from persons with lived experience in dementia, news, and attended webinars (or watched recording). Most participants rated the information that they read on the website moderately, very, or extremely helpful. In addition, the majority of respondents said that they plan to visit the website again. During the interviews, participants shared that the website was easy to navigate, practical, and that it maintains a positive tone related to dementia. The co-design aspect of the campaign was considered a strength.Conclusion:The findings indicate that the FWD campaign can provide support for people who have recently received a dementia diagnosis and their family or friends. In addition, the campaign may provide health and social care providers with a new source of information and tools to use and share with their clients. These results informed the development of a playbook to guide regions and countries beyond those involved in this project to implement similar initiatives.

FC39: The influence of social constructivism on children and young adults perspectives of parental young onset dementia: A thematic analysis of the narratives

Background:Western countries have a significant cohort of children (≤ 18) and young adults who live with a parent with a life limiting condition. Children and young adults’ perspectives of certain parental illnesses have been well documented. However, the perspectives of children and younger adults of parental young onset dementia tend to be absent from the academic literature. Older adult children have reported on the impact parental young onset dementia, however, there is a necessity for research with younger adult children and children under the age of eighteen in relation to their perspectives of the condition.Objectives:Utilizing cultural transmission theory, the current research explored if the social and cultural perspective influences the narratives of children and younger adults of parental young onset dementia.Methods:One-to-one interviews were held with children and younger adults (n = 17: 29·41% male) who currently live with (or have lived with) a parent with a formal diagnosis of young onset dementia (with various subtypes). The participants ranged in age from 14 to 33 years old (x̅ = 21·18 years) with n = 6 eighteen years of age or younger (x̅ = 16·17 years). Participant narratives were analyzed using inductive qualitative thematic analysis.Results:Detailed thematic analysis of the participant narratives uncovered five main themes (with related subthemes); making sense; lack of representation; threat to the family system; life has completely changed; systemic psycho-social support and education.Conclusion:It is clear from the current data that the social and cultural perspective can significantly influence the narratives of children and younger adults of parental young onset dementia. Children are faced with more responsibility, shifting roles, changing relationships, and may be forced to postpone educational or employment plans. Furthermore, the social perception of dementia as can act as a barrier to children and young adults accessing and using health and social care providers.

Perceptions and experiences of South Asian families living with frailty in England: a hermeneutic phenomenological study

ABSTRACT Background and objective Older adults of a South Asian heritage are predisposed to frailty, yet they remain less likely to access targeted frailty services for support with their health and wellbeing. Little is known about how older South Asian adults and family members perceive and experience frailty. The aim of this study was to examine South Asian families’ perspectives and experiences of frailty to inform health services and increase access for families living with frailty. Research design Hermeneutic phenomenological design. Methods Eight people living with frailty and eight family carers were purposefully selected from community settings in West Yorkshire, England. Data were collected in July 2021. Semi-structured interviews were audio recorded, transcribed, and thematically analysed. Results Four themes were identified; a naturally degenerating mind and body, beliefs about frailty causality, impact of frailty, and adapting to living with frailty. Frailty is perceived as degeneration of the mind and body which occurs as a natural part of the ageing process. It is also associated with lifestyle, previous employment, and viewed as God ordained. Frailty profoundly impacts the lives of South Asian families by causing stigma, isolation and loneliness, and negative emotions. However, South Asian people believe it is possible to adapt to living with frailty through making adjustments and using religion as a coping strategy. Discussion and implications This study identifies a need for educational interventions for South Asian families which raise awareness around frailty to reduce stigma and enable access to appropriate frailty support and services. It is also imperative for health, social care and third sector providers to consider the individual meaning of frailty for this population in relation to their cultural and religious context and beliefs, to understand how this may impede decisions to seek frailty care and support, and their needs in relation to service provision.

Medical, social and psychological needs analysis of the elderly in the conditions of military actions and their consequences

The analysis of a structured survey (questionnaire) of the elderly from the de-occupied territory shows a high level of need for long-term medical and social assistance, psychological, financial, and legal support and an insufficient degree of satisfaction or the complete absence of such assistance due to the war. A survey of the elderly from the de-occupied territory and a further analysis of the medical and social care provision state proved a high level of need for medical care, in all types of social services and insufficient availability or their complete availability. To overcome the existing problems, it is necessary to create organizational models of the complex long-term medical and social assistance state system for the elderly in the conditions of military actions and their consequences. _________________________________________________________________________________________ Keywords: elderly; hostilities conditions and their consequences; structured survey; comprehensive medical; social and psychological assistance

Social care data in the UK; current landscape, challenges, and future recommendations

ABSTRACT Objectives Social care in the United Kingdom (UK) refers to care provided due to age, illness, disability, or other circumstances. Social care provision offers an intermediary step between hospital discharge and sufficient health for independent living, which subsequently helps with National Health Service (NHS) bed capacity issues. UK Health Technology Assessments (HTAs) do not typically include social care data, possibly due to a lack of high-quality, accessible social care data to generate evidence suitable for submissions. Methods We identified and characterized secondary sources of UK social care data suitable for research (as of 2021). Sources were identified and profiled by desk research, supplemented by information from custodians and data experts. Results We identified twenty-one sources; six high potential (three national, three regional data sources), five future potential, seven limited potential, and three not considered further (outdated or lacking social care data). Conclusion Despite identifying numerous sources of social care data across the UK, opportunities and access for researchers appeared limited and could be improved. This would facilitate a deeper understanding of the clinical and economic burden of disease, the impact of medicines and vaccines on social care, enable better-informed HTA submissions and more efficient allocation of NHS and local council social care resources.

How did providers of home care for older adults manage the early phase of the Covid-19 pandemic? A qualitative case study of managers’ experiences in Region Stockholm

BackgroundIn the spring of 2020, the Covid-19 outbreak sent a shock wave through the Swedish society and placed an extraordinary pressure on the health and social care system for older people. In the initial phase there were few guidelines for care providers to follow and staff in home care organisations often had to tackle challenges posed by the pandemic as they appeared. The aim of this study was to understand how the spread of Covid-19 was managed in organisations providing home care to older adults in different municipalities in Region Stockholm, and what actions were taken to minimise the spread of the disease among clients and staff.MethodA descriptive qualitative study was performed based on eight interviews with managers of home care providers for older adults in three different municipalities in Region Stockholm.Three of the eight providers operate within an integrated care system. Data were analysed using conventional content analysis.ResultsThree themes were identified covering actions taken to handle the spread of the virus, feelings of insecurity and anxiety, and internal and external factors influencing how the pandemic was tackled. There was no single strategy followed by all municipalities or organisations, however, there were similarities between the organisations. One such example was the introduction of cohort care and the experience of lacking personal protective equipment. Providers in the integrated care system emphasized some advantages with their system that was seen as facilitators for minimising the risk of spreading the virus, like the joint meetings with managers from both health and social care and the close contact with healthcare professionals in relation to dissemination of hygiene instructions.ConclusionSocial care workers providing home care to older persons are an important group in preventing dissemination of infectious diseases like Covid-19. For better readiness and preparedness for future pandemics, municipal home care services would need larger stocks of personal protective equipment, clear guidelines and more training on how to reduce dissemination of disease. Ways to achieve closer communication between health and social care providers should also be investigated.

Skills4 Health Literacy– Nordic project promoting capacity building on health literacy and dementia

Abstract Background An increasing proportion of the population is living with dementia and need health- and social care. People with limited health literacy have difficulties with accessing, understanding, appraising, and applying health information to promote and maintain health. Knowledge about how to promote health literacy is limited among health- and social care providers although such knowledge is important to be able to work person-centered and to reduce the risk of unequitable health and health care. As a response to this, the Erasmus+ project Skills 4 Health Literacy is conducted in the period 2022-2025. The project's overall aim is to meet the needs of higher education institutions in training future and current health and social care professionals, through digital education technologies, to promote health literacy capacity-building when supporting persons at risk of dementia to deliver relevant and personalized interventions. Methods A review of research, policies, and curriculums, and four focus group discussions and 14 individual interviews with experts from with a wide range of social and health care sites in Denmark, Finland, Norway, and Sweden. Results We developed a competence profile for health- and social care workers highlighting which knowledge, skills, and abilities they need to promote and take health literacy into account when working with people at risk of dementia and relatives to those. Thereafter, we developed, and pilot tested health literacy courses (1 classroom-based, 1 traditional online and 1 MOOC) based on this competence profile, in three of the Nordic countries. Conclusions There is a need for health literacy training among health- and social care workers in the Nordic countries. This project suggests a consensus-build competency profile to further develop the capacity building within health and social care and dementia with regards to health literacy training. Key messages • Health- and social care workers in the Nordics who meet elderly need training in health literacy. • A competence profile and health literacy courses have been developed to meet those needs.

Perceived Roles and Barriers in Delivering Community-Based Care: A Qualitative Study of Health and Social Care Professionals.

As healthcare systems increasingly embrace population health management, the integration of health and social care to improve the health and well-being of individuals is crucial. Thus, we conducted a qualitative study in Singapore to understand health and social care professionals' (HCPs and SCPs) perception of the roles they played in delivering community-based care. A descriptive phenomenological research design was adopted. HCPs and SCPs (n = 53) providing services in community settings were recruited purposefully and interviewed through eleven focus group discussions. Each session was recorded and transcribed. Thematic analysis was applied. Our results revealed eight themes in three main categories describing the roles played by HCPs and SCPs, including: (1) delivering needs-based care in community settings; (2) activating and empowering clients in health care, and (3) fostering community-based sustainable support networks. Six barriers encountered while performing these roles were also identified. Our results highlight that the roles of HCPs and SCPs go beyond the provision of direct medical and social care. They were involved in activating and empowering clients to take care of their health, and importantly, fostering community-based sustainable support networks to better empower individuals in coping with health challenges. The identified barriers shed light on areas for potential improvements for integrated community care.

“Digging in”: stigma and surveillance in the lives of pregnant and breastfeeding mothers who consume cannabis

ABSTRACT Since the shift to legalizing recreational cannabis use in Canada in 2018, there has been increased attention on the consequences of cannabis use on women’s reproductive and maternal health, with particular attention to the impact of cannabis in utero and through breastfeeding. This has resulted in an intense focus on the behaviors of individuals who consume cannabis during the perinatal period, which raises questions about the impact this has on women and mothers who have historically been under the surveillance of the Canadian public health, health and social care, and legal systems. Grounded in an intersectional feminist framework that acknowledges how race, ability, class, and other social positions impact and differentiate women’s experience, this paper presents findings emerging from a participatory arts-based research approach called Photovoice with 23 mothers living throughout Canada. All participants consumed cannabis during pregnancy and breastfeeding and illustrated through photographs and individual and group discussion how their experiences of intersectional stigma and surveillance by health and social care providers resulted in barriers to accessing cannabis-related information and support. Implications arising from our inquiry suggest there is a dire need for public health, perinatal care, and social care responses that run counter to the current context where stigma and fear prevent parents from accessing cannabis information and support.