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BACKGROUND: Older adults' use of social care and their healthcare utilization are closely related. Residents of care homes access emergency care more often than the wider older population; however, less is known about emergency care use across other social care settings. SOURCES OF DATA: A systematic review was conducted, searching six electronic databases between January 2012 and February 2022. AREAS OF AGREEMENT: Older people access emergency care from a variety of community settings. AREAS OF CONTROVERSY: Differences in study design contributed to high variation observed between studies. GROWING POINTS: Although data were limited, findings suggest that emergency hospital attendance is lowest from nursing homes and highest from assisted living facilities, whilst emergency admissions varied little by social care setting. AREAS TIMELY FOR DEVELOPING RESEARCH: There is a paucity of published research on emergency hospital use from social care settings, particularly home care and assisted living facilities. More attention is needed on this area, with standardized definitions to enable comparisons between studies.
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Serviços Médicos de Emergência , Humanos , Idoso , Hospitalização , Casas de Saúde , Atenção à Saúde , Apoio SocialRESUMO
BACKGROUND: Healthcare systems are increasingly screening and referring patients for unmet social needs (e.g., food insecurity). Little is known about the intensity of support necessary to address unmet needs, how this support may vary by circumstance or time (duration), or the factors that may contribute to this variation. OBJECTIVE: Describe health navigator services and the effort required to support patients with complex needs at a community health center in East Oakland, CA. DESIGN: Retrospective analysis of de-identified patient contact notes (e.g., progress notes). PARTICIPANTS: Convenience sample of patients (n = 27) enrolled in diabetes education and referred to health navigators. INTERVENTIONS: Navigators provide education on managing conditions (e.g., diabetes), initiate and track medical and social needs referrals, and navigate patients to medical and social care organizations. MAIN MEASURES: Descriptive statistics for prevalence, mean, median, and range values of patient contacts and navigation services. We described patterns and variation in navigation utilization (both contacts and navigation services) based on types of need. KEY RESULTS: We identified 811 unmet social and medical needs that occurred over 710 contacts with health navigators; 722 navigation services were used to address these needs. Patients were supported by navigators for a median of 9 months; approximately 25% of patients received support for > 1 year. We categorized patients into 3 different levels of social risk, accounting for patient complexity and resource needs. The top tertile (n = 9; 33%) accounted for the majority of resource utilization, based on health navigator contacts (68%) and navigation services (75%). CONCLUSIONS: The required intensity and support given to meet patients' medical and social needs is substantial and has significant variation. Meeting the needs of complex patients will require considerable investments in human capital, and a risk stratification system to help identify those most in need of services.
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Diabetes Mellitus , Navegação de Pacientes , Humanos , Masculino , Feminino , Estudos Retrospectivos , Navegação de Pacientes/organização & administração , Pessoa de Meia-Idade , Diabetes Mellitus/terapia , Diabetes Mellitus/epidemiologia , Idoso , Necessidades e Demandas de Serviços de Saúde , Adulto , California/epidemiologia , Apoio Social , Avaliação das NecessidadesRESUMO
BACKGROUND: Social care integration refers to the incorporation of activities into health systems that assist patients with health-related social needs (HRSNs) that negatively impact the health outcomes of their patients, such as food insecurity or homelessness. Social care integration initiatives are becoming more common. The COVID-19 pandemic strained health systems while simultaneously increasing levels of unmet social needs. OBJECTIVE: To describe the effects of the COVID-19 pandemic on established social care delivery in a primary care setting. DESIGN: We used qualitative semi-structured interviews of stakeholders to assess barriers and facilitators to social care delivery in the primary care setting during the COVID-19 health emergency. Data was analyzed using a hybrid inductive/deductive thematic analysis approach with both the Consolidated Framework for Implementation Research (CFIR) and the Screen-Navigate-Connect-Address-Evaluate model of social care integration. SETTING: Two safety-net, hospital-based primary care clinics with established screening for food insecurity, homelessness, and legal needs. PARTICIPANTS: Six physicians, six nurses, six members of the social work team (clinical social workers and medical case workers), six community health workers, and six patients (total N = 30) completed interviews. RESULTS: Four major themes were identified. (1) A strained workforce experienced challenges confronting increased levels of HRSNs. (2) Vulnerable populations experienced a disproportionate negative impact in coping with effects of the COVID-19 pandemic on HRSNs. (3) COVID-19 protections compounded social isolation but did not extinguish the sense of community. (4) Fluctuations in the social service landscape led to variable experiences. CONCLUSIONS: The COVID-19 pandemic disrupted established social care delivery in a primary care setting. Many of the lessons learned about challenges to social care delivery when health systems are strained are important considerations that can inform efforts to expand social care delivery.
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Policy Points This article summarizes recent evidence on how increased awareness of patients' social conditions in the health care sector may influence health and health care utilization outcomes. Using this evidence, we propose a more expansive logic model to explain the impacts of social care programs and inform future social care program investments and evaluations.
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Lógica , Humanos , Estados Unidos , Atenção à Saúde/economia , Serviço Social/economia , Serviço Social/organização & administração , Modelos TeóricosRESUMO
OBJECTIVE: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (<18). METHODS: An evidence-based and theory-driven face-to-face educational intervention was developed and evaluated using three levels of Kirkpatrick's Model of Evaluation. Pre-test, post-test surveys were completed immediately before-and-after the intervention using a validated self-efficacy scale and single-item questions evaluating perceived usefulness and relevance (levels one/two). Qualitative interviews ≥ 3-months post-intervention explored if, and how the intervention impacted professionals' practice (level three). Fourteen sessions were delivered at oncology settings to 347 professionals between 2021 and 2023. Two hundred seventy four professionals completed the pre-test survey, with 239 completing the post-test survey. Fourteen professionals were interviewed between three-and 19-months post-intervention. RESULTS: Quantitative findings demonstrated a statistically significant improvement in self-efficacy post-educational intervention (p < 0.001). Qualitative data highlighted professionals gained new approaches to progress end of life conversations with parents, despite some familial resistance to sharing the reality of the situation with children. Positive intervention content shaping clinical practice included the bereaved parent's lived experience, communication framework and roleplay videos. Some professionals considered a booster session and opportunities to practice conversations necessary to further consolidate learning into practice. CONCLUSIONS: Evidence and theory-driven education can positively impact professionals' provision of family-centred cancer care. Future studies should explore the impact of this educational intervention on familial outcomes. Alongside a sustainable delivery of this intervention, advanced communication skills programmes should incorporate parent-child end of life conversations.
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Pessoal de Saúde , Neoplasias , Pais , Assistência Terminal , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Pessoal de Saúde/educação , Pessoal de Saúde/psicologia , Pais/psicologia , Pais/educação , Assistência Terminal/psicologia , Masculino , Feminino , Criança , Adulto , Autoeficácia , Pesquisa Qualitativa , Inquéritos e Questionários , Comunicação , Relações Profissional-FamíliaRESUMO
Many people living with dementia and unpaid carers experience inequalities in care related to challenges in receiving a correct diagnosis, care and support. Whilst complexities of the evidence are well recognised including barriers in receiving a diagnosis or post-diagnostic care, no coherent model has captured the far-reaching types and levels of inequalities to date. Building on the established Dahlgren & Whitehead Rainbow model of health determinants, this paper introduces the new Dementia Inequalities model. The Dementia Inequalities model, similar to the original general rainbow model, categorises determinants of health and well-being in dementia into three layers: (1) Individual; (2) Social and community networks; and (3) Society and infrastructure. Each layer comprises of general determinants, which have been identified in the original model but also may be different in dementia, such as age (specifically referring to young- versus late-onset dementia) and ethnicity, as well as new dementia-specific determinants, such as rare dementia subtype, having an unpaid carer, and knowledge about dementia in the health and social care workforce. Each layer and its individual determinants are discussed referring to existing research and evidence syntheses in the field, arguing for the need of this new model. A total of 48 people with lived, caring, and professional experiences of dementia have been consulted in the process of the development of this model. The Dementia Inequalities model provides a coherent, evidence-based overview of inequalities in dementia diagnosis and care and can be used in health and social care, as well as in commissioning of care services, to support people living with dementia and their unpaid carers better and try and create more equity in diagnosis and care.
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Demência , Humanos , Disparidades em Assistência à Saúde , Cuidadores , Feminino , Idoso , Masculino , Fatores Socioeconômicos , Determinantes Sociais da Saúde , Apoio Social , Modelos TeóricosRESUMO
PURPOSE: Rasch analysis and exploratory factor analysis (EFA) were used to evaluate the structural validity of the ASCOT-Proxy measures completed by staff on behalf of older adults resident in care homes, by comparison to the ASCOT-SCT4, the measure of social care-related quality of life (SCRQoL) from which the ASCOT-Proxy was developed. METHODS: EFA was conducted on the ASCOT-SCT4 and the two ASCOT-Proxy measures (Proxy-Proxy, Proxy-Resident), to determine if they retained the single factor of the original ASCOT-SCT4 measure found in samples of older community-dwelling adults. Rasch analysis was also applied to measures with a single factor structure in the EFA. RESULTS: ASCOT-Proxy-Resident had a single factor structure, as did the original ASCOT-SCT4 (also, found in this analysis when completed by care home staff). The ASCOT-Proxy-Proxy had a two factor structure. Rasch analysis of ASCOT-Proxy-Resident and ASCOT-SCT4 had an acceptable model fit, internal consistency and met the assumptions of unidimensionality and local independence. There was evidence of less than optimal distinguishability at some thresholds between responses, and low frequency of rating of the 'high level needs'. CONCLUSION: The ASCOT-Proxy-Resident is a valid instrument of SCRQoL for older adults resident in care homes, completed by staff proxies. Due to the two-factor structure, which differs from the original ASCOT-SCT4, we do not recommend the use of the ASCOT-Proxy-Proxy measure, although collecting data as part of the ASCOT-Proxy questionnaire may support its feasibility and acceptability. Further qualitative study of how care home staff complete and perceive the ASCOT-Proxy is encouraged for future studies.
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Procurador , Psicometria , Qualidade de Vida , Humanos , Masculino , Feminino , Idoso , Análise Fatorial , Inquéritos e Questionários/normas , Idoso de 80 Anos ou mais , Reprodutibilidade dos Testes , Casas de Saúde , Pessoa de Meia-Idade , Adulto , Instituição de Longa Permanência para IdososRESUMO
Many parents who come into contact with early help and children's social care services are risky drinkers. This study aimed to investigate the feasibility and acceptability of conducting a trial of brief alcohol interventions within this setting. We conducted a three-arm pilot feasibility cluster randomised controlled trial in the North-East of England. The additive interventions were: i) screening and a healthy lifestyle leaflet (control); ii) brief advice; iii) extended brief intervention. The trial was later reduced to two-arm due to the extended brief intervention being infeasible. Of the 1769 parents that were approached, 429 consented to be screened (24%), the majority were eligible to participate (n = 415; 97%), 147 of which (35%) scored ≥5 on the AUDIT-C screening tool. There were 108 parents (74%) who consented to participate in the trial (n = 50 control; n = 58 brief advice). Follow-up rates at 6 and 12-months were 61% and 43%. The TLFB30 was found to be a suitable tool to measure the primary outcome of heavy episodic drinking. Qualitative data showed that parents and practitioners largely found trial procedures to be acceptable, however, care should be taken when discussing alcohol risk with parents in this setting. Most of the a-priori success criteria were met in this pilot feasibility trial. The findings suggest that it may be feasible to conduct a two-arm randomised controlled trial of brief alcohol interventions to parents in contact with early help and social care. The TLFB30 was found to be a suitable tool to measure the primary outcome of heavy episodic drinking.
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Aconselhamento , Intervenção em Crise , Criança , Humanos , Aconselhamento/métodos , Estudos de Viabilidade , Inglaterra , Aplicação da LeiRESUMO
BACKGROUND: In 2018, the Dutch government initiated the Solid Start program to provide each child with the best start in life. Key program elements are a biopsychosocial perspective on pregnancy and children's development and stimulating local collaborations between social and health domains, with a specific focus on (future) families in vulnerable situations. Two programs for interprofessional collaboration between maternity and social care professionals to optimize care for pregnant women in vulnerable situations were developed and implemented, in Groningen in 2017 and in South Limburg in 2021. This paper describes the extent of implementation of these programs and the perceptions of involved professionals about determinants that influence program implementation. METHODS: We conducted a mixed-methods study in 2021 and 2022 in two Dutch regions, Groningen and South Limburg. Questionnaires were sent to primary care midwives, hospital-based midwives, obstetricians (i.e. maternity care professionals), (coordinating) youth health care nurses and social workers (i.e. social care professionals), involved in the execution of the programs. Semi-structured interviews were held with involved professionals to enrich the quantitative data. Quantitative and qualitative data were collected and analyzed using Fleuren's implementation model. RESULTS: The findings of the questionnaire (n = 60) and interviews (n = 28) indicate that professionals in both regions are generally positive about the implemented programs. However, there was limited knowledge and use of the program in Groningen. Promoting factors for implementation were mentioned on the determinants for the innovation and the user. Maternity care professionals prefer a general, conversational way to identify vulnerabilities that connects to midwives' daily practice. Low-threshold, personal contact with clear agreements for referral and consultation between professionals contributes to implementation. Professionals agree that properly identifying vulnerabilities and referring women to appropriate care is an important task and contributes to better care. On the determinants of the organization, professionals indicate some preconditions for successful implementation, such as clearly described roles and responsibilities, interprofessional training, time and financial resources. CONCLUSIONS: Areas for improvement for the implementation of interprofessional collaboration between maternity care and social care focus mainly on determinants of the organization, which should be addressed both regionally and nationally. In addition, sustainable implementation requires continuous awareness of influencing factors and a process of evaluation, adaptation and support of the target group.
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Atitude do Pessoal de Saúde , Relações Interprofissionais , Humanos , Feminino , Gravidez , Países Baixos , Inquéritos e Questionários , Assistentes Sociais/psicologia , Adulto , Serviços de Saúde Materna , Tocologia , Pesquisa Qualitativa , Gestantes/psicologiaRESUMO
BACKGROUND: Receiving and accessing care after a diagnosis of dementia, both for the person and their carer, are fraught with inequalities. The aim of this public engagement activity was to co-produce a board game about dementia inequalities to facilitate learning, dialogue and educate about different barriers, and facilitators, to diagnosis and care and to test the game's impact on dementia knowledge with the general public. METHODS: Two virtual and two face-to-face workshops with people with dementia, unpaid carers, health and social care professionals and Third Sector representatives were held between October 2022 and June 2023. Virtual workshops involved discussions of inequalities and how a board game may feature inequalities. The first face-to-face workshop was split into the same activities, aided by outcomes from workshops 1 and 2. Workshop 4 attendees tested the prototype. The impact of the game on knowledge about dementia and inequalities was tested at a game play workshop in October 2023. RESULTS: Forty stakeholders attended four workshops. Workshops provided step-by-step thoughts on how the game could be designed or modified. The final game, prototype tested in workshop 4, consists of a one-sided, two-half board depicting the prediagnosis process (left half) and postdiagnosis process (right half). Fifty-two members of the general public participated in the game play workshop, which led to significant improvements in knowledge about dementia (p < .001) and inequalities (p < .001). DISCUSSION: The game can be used to improve knowledge about dementia inequalities for health and social care professionals, carers, people living with dementia, decision makers and the general public. PATIENT OR PUBLIC CONTRIBUTION: This engagement activity fully involved people with dementia, unpaid carers, health and social care professionals and Third Sector representatives throughout, with two unpaid carers as public advisers on the team.
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Demência , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Demência/terapia , Feminino , Masculino , Cuidadores/educação , Disparidades em Assistência à Saúde , Pessoa de Meia-Idade , AdultoRESUMO
AIM: The aim of this qualitative study was to explore the barriers and facilitators to accessing and receiving mental health care for paid and unpaid carers of older adults. METHODS: Unpaid and paid carers for older adults in England were interviewed remotely between May and December 2022. Participants were asked about their experiences of mental health needs and support. Reflexive thematic analysis was used to analyse the data. RESULTS: Thirty-seven carers participated (npaid = 9; nunpaid = 28), with the majority caring for a parent with dementia. Thematic analysis generated four themes: lack of healthcare support, social care system failing to enable time off, personal barriers and unsupportive work culture. Healthcare professionals failed to provide any link to mental health services, including when a dementia diagnosis was received. Structural and organisational barriers were evidenced by carers being unable to take time off from their unpaid caring duties or paid caring role, due to an absence of social care support for their relative. CONCLUSIONS: This is the first study to have explored the barriers to mental health care and support for paid and unpaid carers for older adults and suggests that structural, organisational and personal barriers cause severe difficulties in accessing required support to care for older relatives, services users and residents. PUBLIC INVOLVEMENT: Two unpaid carers aided with the development of topic guides, data analysis, interpretation and dissemination. Both were supported and trained to code anonymised transcripts.
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Cuidadores , Demência , Humanos , Idoso , Cuidadores/psicologia , Saúde Mental , Pessoal de Saúde , Pesquisa Qualitativa , Demência/terapiaRESUMO
INTRODUCTION: This exploratory literature review seeks to examine the literature around commissioning processes in the co-production of health and care services, focusing on two questions: How do health and care commissioning processes facilitate and/or pose barriers to co-production in service design and delivery? What are the contextual factors that influence these processes? METHOD: A systematic search of three databases (Medline, Public Health and Social Policy and Practice) and a search platform (Web of Science) was conducted for the period 2008-2023. A total of 2675 records were retrieved. After deduplication, 1925 were screened at title and abstract level. Forty-seven reports from 42 United Kingdom and Ireland studies were included in the review. A thematic synthesis of included studies was conducted in relation to the research questions. RESULTS: The review identified one overarching theme across the synthesised literature: the complexity of the commissioning landscape. Three interconnected subthemes illuminate the contextual factors that influence this landscape: commissioners as leaders of co-production; navigating relationships and the collective voice. CONCLUSION: Commissioning processes were commonly a barrier to the co-production of health and care services. Though co-production was an aspiration for many commissioners, the political and economic environment and service pressures meant that it was often not fully realised. More flexible funding models, longer-term pilot projects, an increased emphasis in social value across the health and care system and building capacity for strong leadership in commissioning is needed. PATIENT AND PUBLIC CONTRIBUTION: Patients and the public did not contribute to this review as it was a small piece of work following on from a completed project, with no budget for public involvement.
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Atenção à Saúde , Reino Unido , Irlanda , Humanos , Atenção à Saúde/organização & administração , Medicina Estatal/organização & administração , Política de SaúdeRESUMO
INTRODUCTION: 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. METHODS: 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, transcribed and thematically coded using NVivo 12. Rigour was determined through extensive sampling, iterative data collection and analysis. FINDINGS: 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, Intersex and 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 relevance and 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 health and 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. INTERPRETATION: 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 relevance and cultural appropriateness. PATIENT OR PUBLIC CONTRIBUTION: Members of ethnic minority Patient and Public Involvement and Engagement group and Community Advisory Board supported the REPRESENT study design, conceptualisation and report development.
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Grupos Focais , Humanos , Feminino , Masculino , Entrevistas como Assunto , Minorias Étnicas e Raciais , Adulto , Reino Unido , Etnicidade/psicologia , Grupos Minoritários/psicologia , Pessoa de Meia-Idade , Pesquisa Qualitativa , Disparidades em Assistência à Saúde/etnologia , InglaterraRESUMO
BACKGROUND: The ageing population and the rise of persons with dementia (PWD) living at home have increased the need for support by family caregivers (FC). Research suggests that most FCs are unprepared for the complex role of informal caregiving. The use of mobile applications (apps) provide a cost-effective and efficient opportunity for community-based social care professionals to provide tailor-made support to FCs. The literature indicates that there are limited mobile apps available to meet the needs of the FCs to PWD living at home. The aim of this study was to explore how social care professionals and FCs to PWD living at home experience providing and receiving support through a tailor-made mobile app named STAV. METHODS: A qualitative descriptive design was applied. Data were collected through semi-structured interviews with 11 community-based social care professionals and 19 FCs of PWD living at home. The data were analyzed inductively using thematic analysis. RESULTS: The social care professionals and the FCs' experience of providing and receiving support through a mobile app was represented by the following themes: Accessibility to support - Bridging the gap, Engaging from a distance, and Limitations of the support. CONCLUSIONS: This study highlights the need for FCs to PWD to receive support that is tailor-made to their needs as caregivers. The findings from this study can help community-based social care providers plan and organize long-distance support for FCs to PWD living at home. The findings further support the use of a mobile app as a complement to traditional means of support for FCs to PWD which can facilitate their knowledge, awareness, and self-care management.
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Cuidadores , Demência , Aplicativos Móveis , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Masculino , Feminino , Demência/psicologia , Demência/terapia , Idoso , Pessoa de Meia-Idade , Apoio Social , Adulto , Idoso de 80 Anos ou maisRESUMO
INTRODUCTION: As patient and public involvement (PPI) in research has become increasingly common, research-based recommendations on its principles and impacts have been established. The specifics of conducting PPI are likely to differ when involving different groups. Family/informal carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have yet to be reviewed. OBJECTIVE: To systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors. METHODS: A search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand-searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted. FINDINGS: A total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances. CONCLUSION: By summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed. PATIENT AND PUBLIC INVOLVEMENT: The initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis.
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Cuidadores , Humanos , Cuidadores/psicologia , Pesquisa Participativa Baseada na Comunidade , Participação do Paciente , NarraçãoRESUMO
INTRODUCTION: Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. METHODS: An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities. A co-design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co-facilitated the workshops), five family members, five intellectual disability support staff, two intellectual disability service managers, and five healthcare professionals. RESULTS: The All Together Group tested resources for and approaches to end-of-life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy-read end-of-life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation-starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end-of-life care planning with people with intellectual disabilities. CONCLUSION: Through an iterative, flexible, inclusive, and comprehensive co-design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end-of-life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. PATIENT OR PUBLIC CONTRIBUTION: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.-B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co-design group as well. Two of these representatives were also co-applicants in the overall project (N.P. and S.S.). The co-design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers.
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Deficiência Intelectual , Assistência Terminal , Humanos , Deficiência Intelectual/terapia , Grupos Focais , Serviço Social , Planejamento Antecipado de Cuidados , Adulto , Masculino , Pessoal de Saúde , FemininoRESUMO
AIM: To outline the organisation and responsibility for health and social care provided to older people in Denmark, Finland and Sweden. METHODS: Non-quantifiable data on the care systems were collated from the literature and expert consultations. The responsibilities for primary healthcare, specialised healthcare, prevention and health promotion, rehabilitation, and social care were presented in relation to policy guidance, funding and organisation. RESULTS: In all three countries, the state issues policy and to some extent co-funds the largely decentralised systems; in Denmark and Sweden the regions and municipalities organise the provision of care services - a system that is also about to be implemented in Finland to improve care coordination and make access more equal. Care for older citizens focuses to a large extent on enabling them to live independently in their own homes. CONCLUSIONS: Decentralised care systems are challenged by considerable local variations, possibly jeopardising care equity. State-level decision and policy makers need to be aware of these challenges and monitor developments to prevent further health and social care disparities in the ageing population.
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Atenção à Saúde , Organizações , Humanos , Idoso , Finlândia , Suécia , DinamarcaRESUMO
BACKGROUND: In Norrtälje municipality, within Region Stockholm, there is a joint integrated care organisation providing health and social care, which may have facilitated a more coordinated response to the covid-19 pandemic compared to the otherwise decentralised Swedish system. This study compares the risk of covid-19 mortality among persons 70 years and older, in the municipalities of Stockholm, Södertälje, and Norrtälje, while considering area and individual risk factors. METHODS: A population-based study using linked register data to examine covid-19 mortality among those 70 + years (N = 127,575) within the municipalities of interest between the periods March-August 2020 and September 2020-February 2021. The effect of individual and area level variables on covid-19 mortality among inhabitants in 68 catchment areas were examined using multi-level logistic models. RESULTS: Individual factors associated with covid-19 mortality were sex, older age, primary education, country of birth and poorer health as indicated by the Charlson Co-morbidity Index. The area-level variables associated were high deprivation (OR: 1.56, CI: 1.18-2.08), population density (OR: 1.14, CI: 1.08-1.21), and usual care. Together, this explained 85.7% of the variation between catchment areas in period 1 and most variation was due to individual risk factors in period 2. Little of the residual variation was attributed to differences between catchment areas. CONCLUSION: Integrated care in Norrtälje may have facilitated a more coordinated response during period 1, compared to municipalities with usual care. In the future, integrated care should be considered as an approach to better protect and meet the care needs of older people during emergency situations.
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COVID-19 , Prestação Integrada de Cuidados de Saúde , Humanos , Idoso , COVID-19/epidemiologia , Pandemias , Suécia/epidemiologiaRESUMO
BACKGROUND: Health and social sector organizations are increasingly working together to mitigate socioeconomic adversity within their communities. We sought to learn about the motivations, experiences, and perspectives of organizations engaged in these collaborations. METHODS: We conducted semi-structured, 60-minute interviews with 34 leaders from 25 health and social sector organizations between January-April 2021. Interviews explored motivations, benefits and challenges, and ways in which health sector organizations can most effectively address community-level socioeconomic adversity. Interviews were audio recorded and transcribed; themes were coded using Dedoose software. RESULTS: Partnerships were primarily motivated by mission-driven organizations and key health sector leaders who were interested in addressing root causes of poor health; policies such as certificate of need laws and value-based care incentives that aligned community-level investments with health sector organizations' financial interests facilitated these efforts. While partnerships were mostly regarded as mutually beneficial ways to increase impact (for the health sector) and resource access (for the social sector), social sector organizations voiced frustrations regarding the outsized expectations, unsustained interest, and lack of partnership from their health sector collaborators. Despite these frustrations, both health and social sector interviewees supported the health sector's continued involvement in community-level socioeconomic initiatives and expansion of policy and systems efforts. CONCLUSIONS: Cross-sector, community-level socioeconomic initiatives were mutually beneficial, but social sector organizations experienced more frustrations. Policy and organizational changes within the health sector can further mobilize and sustain support for these efforts.
Assuntos
Pesquisa Qualitativa , Humanos , Entrevistas como Assunto , Fatores Socioeconômicos , Comportamento Cooperativo , Masculino , FemininoRESUMO
BACKGROUND: To facilitate safety-net healthcare system partnerships with community social service providers, the Los Angeles County Department of Health Services (LAC DHS) created a new collaboration team to spur cross-agency social and medical referral networks and engage communities affected by health disparities as part of a Sect. 1115 Medicaid waiver in Los Angeles County entitled Whole Person Care-Los Angeles (WPC-LA). METHODS: This observational research reviews three years of collaboration team implementation (2018-2020) through Medicaid-reportable engagement reports, a collaboration team qualitative survey on challenges, facilitators, and recommendations for community engagement. Member reflections for survey findings were conducted with the collaboration team and LAC DHS WPC-LA leadership. RESULTS: Collaboration team Medicaid engagement reports (n = 144) reported > 2,700 events, reaching > 70,000 individuals through cross-agency and community-partnered meetings. The collaboration team survey (n = 9) and member reflection sessions portrayed engagement processes through outreach, service assessments, and facilitation of service partnerships. The collaboration team facilitated community engagement processes through countywide workgroups on justice-system diversion and African American infant and maternal health. Recommendations for future safety net health system engagement processes included assessing health system readiness for community engagement and identifying strategies to build mutually beneficial social service partnerships. CONCLUSIONS: A dedicated collaboration team allowed for bi-directional knowledge exchange between county services, populations with lived experience, and social services, identifying service gaps and recommendations. Engagement with communities affected by health disparities resulted in health system policy recommendations and changes.