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1.
Australas J Ageing ; 38 Suppl 2: 59-67, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31496066

RESUMO

OBJECTIVE: To examine the overlap between priorities expressed by representatives from national and local campaigning organisations and the views of key voices in relation to dementia. METHODS: Semi-structured, in-depth telephone interviews were conducted with 19 representatives from campaigning organisations, including nine countries and six local community initiatives in Australia. Responses were categorised into nine priorities. Views were compared to the voices of people with dementia (n = 19), carers (n = 28), and health-care (n = 21), social work (n = 23) and service professionals (n = 20). RESULTS: Local groups prioritised user-led decision-making and community normalising agendas. National groups were influenced by service frameworks and increasing public awareness. Professional and carer groups focused on increasing understanding and communication skills while people with dementia valued being a normal part of society. CONCLUSION: Future campaigning should use both national and local approaches to changing social relations, through interpersonal connections, advocacy and social mobilisation, to promote a normalising approach to attitude change.


Assuntos
Cuidadores/organização & administração , Demência/terapia , Geriatria/organização & administração , Pessoal de Saúde/organização & administração , Promoção da Saúde/organização & administração , Serviços de Saúde para Idosos/organização & administração , Pacientes , Saúde Pública , Assistentes Sociais , Pessoal Administrativo , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Cuidadores/legislação & jurisprudência , Cuidadores/psicologia , Demência/diagnóstico , Demência/psicologia , Feminino , Geriatria/legislação & jurisprudência , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/legislação & jurisprudência , Pessoal de Saúde/psicologia , Promoção da Saúde/legislação & jurisprudência , Serviços de Saúde para Idosos/legislação & jurisprudência , Humanos , Masculino , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente/organização & administração , Pacientes/legislação & jurisprudência , Pacientes/psicologia , Saúde Pública/legislação & jurisprudência , Parcerias Público-Privadas/organização & administração , Assistentes Sociais/legislação & jurisprudência , Assistentes Sociais/psicologia , Participação dos Interessados
2.
Australas J Ageing ; 38 Suppl 2: 53-58, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31496067

RESUMO

OBJECTIVE: To describe the co-design process in a project that "evaluated how the key worker role can best support people living with dementia in the community setting." METHODS: People with dementia, care-partners, aged-care service experts, policymakers and academics utilised a co-design process to undertake a systematic literature review and a qualitative evaluation study. RESULTS: The development of a successful co-design process that includes people living with dementia and their care-partners ("consumers") at all stages of the research process and addresses their individual needs. CONCLUSIONS: The co-design approach utilised in this project provided support, for consumers living in the community to be fully involved in the research design, conduct and plans for dissemination and implementation of the findings. Consequently, the research outcomes are based on solid evidence and consumer need. Additionally, a successful model for supporting consumers to facilitate their involvement in all aspects of the research process, was developed.


Assuntos
Pessoal Administrativo/organização & administração , Pesquisa Biomédica/organização & administração , Cuidadores/organização & administração , Demência/terapia , Geriatria/organização & administração , Serviços de Saúde para Idosos/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Parcerias Público-Privadas/organização & administração , Adaptação Psicológica , Pessoal Administrativo/psicologia , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Demência/diagnóstico , Demência/psicologia , Humanos , Vida Independente , Comunicação Interdisciplinar , Pesquisa Qualitativa , Apoio Social , Participação dos Interessados
3.
Presse Med ; 48(7-8 Pt 1): e209-e215, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31421945

RESUMO

AIM: Identified Palliative Care Beds (Lits Identifiés Soins Palliatifs - LISPs) is a French specificity. Primarily created to integrate palliative care culture into conventional hospital units, the relevance of this measure became a controversial issue. Nowadays, hospital teams continue to frequently encounter complex situations regarding medical care for palliative patients. To the best of our knowledge, there is only one study, a quantitative one, bridging the gap about that subject. It showed failure in practicing palliative care work around LISP. Our study is based on a qualitative method that complements the quantitative study. It aimed to describe difficulties that limit palliative care practices in managing adult patients in LISP. METHOD: This qualitative exploratory survey was conducted with a sample of health service professionals (n=20), from senior physicians to caregivers. Each semi-structured interview included open questions regarding their experiences, feelings and difficulties with palliative care practices on LISP. It also included closed questions concerning interviewee's demographics and career course. The data for this research were submitted to a two-stage analysis: first, a global review of each interview was performed to identify trends. Then, a detailed breakdown, question by question, was implemented. RESULTS: From a quantitative perspective, the interviews revealed 305 difficulties, indicating the gaps and barriers limiting the implementation of a palliative approach in these services. From a qualitative perspective, five topics raised our attention by their recurrence in discourses: (1) partial knowledge about palliative care definition and legislation mostly due to a lack of training; (2) need for time; (3) need for human resources; (4) need for communication; (5) hard time in transitioning from curative to palliative care. PERSPECTIVE: This survey gives the opportunity to understand health service professionals' difficulties in practicing palliative care in conventional medical services. It raises the central issue of the pricing reform on the health institutes activity. It also provides angles of inquiry to improve LISP effectiveness. This qualitative and descriptive study was designed to explore difficulties in practicing palliative care around LISP. Nevertheless, according to the size of the sample, results will need to be confirmed by a more extensive qualitative survey.


Assuntos
Continuidade da Assistência ao Paciente , Unidades Hospitalares/organização & administração , Cuidados Paliativos/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Padrões de Prática Médica , Qualidade da Assistência à Saúde/organização & administração , Adulto , Atitude do Pessoal de Saúde , Cuidadores/organização & administração , Cuidadores/normas , Barreiras de Comunicação , Continuidade da Assistência ao Paciente/organização & administração , Continuidade da Assistência ao Paciente/normas , Assistência à Saúde/métodos , Assistência à Saúde/organização & administração , Assistência à Saúde/normas , Arquitetura de Instituições de Saúde/normas , França , Conhecimentos, Atitudes e Prática em Saúde , Número de Leitos em Hospital , Unidades Hospitalares/normas , Humanos , Entrevistas como Assunto , Satisfação no Emprego , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Equipe de Assistência ao Paciente/normas , Padrões de Prática Médica/organização & administração , Padrões de Prática Médica/normas , Pesquisa Qualitativa , Qualidade da Assistência à Saúde/normas , Estudos Retrospectivos , Inquéritos e Questionários
4.
Surgery ; 166(5): 769-777, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31285045

RESUMO

BACKGROUND: Active involvement of relatives has the potential to improve postoperative patient outcomes by prevention of complications sensitive to basic care and unplanned readmissions. The aim of this study was to assess the feasibility of a program in which relatives participated in postoperative care. METHODS: A pragmatic feasibility trial conducted at the surgical ward of a University hospital in the Netherlands. Patients undergoing esophageal or pancreatic resection with a relative who was willing and able to participate formed the intervention group (n = 20). A control group (n = 20) received usual postoperative care. The program consisted of the following: (1) information; (2) shared goal setting; (3) task-oriented training; (4) participation in basic care, focusing on mobilization, breathing exercises, cognitive activities and oral hygiene; (5) presence of relatives during ward rounds; and (6) rooming-in. Feasibility criteria were adherence to basic care, caregiver burden, and satisfaction of patients, family, and healthcare professionals. RESULTS: All participants completed the program. Patients in the intervention group mobilized more (estimated difference for walking 170 meters per day, P = .037, and for sitting 109 minutes per day, P < .001), and showed more adherence to breathing exercises (estimated difference per day 1.4, P = .003), oral hygiene (estimated difference 1.52, P = .001), and cognitive activities (estimated difference 2.6, P < .001). Relatives'Care-Related Quality of Life instrument score did not deteriorate over time (P = .64); 96% of relatives would recommend the program and 92% felt better prepared for discharge. Patients in the intervention group were more satisfied with hospital admission. Healthcare professionals valued the program positively. CONCLUSION: This program is feasible and is positively appreciated by patients, family, and healthcare professionals. Patients following the program showed more adherence to basic care activities.


Assuntos
Cuidadores/organização & administração , Esofagectomia/reabilitação , Família , Pancreatectomia/reabilitação , Cuidados Pós-Operatórios/métodos , Idoso , Esofagectomia/efeitos adversos , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Pancreatectomia/efeitos adversos , Cooperação do Paciente/estatística & dados numéricos , Satisfação do Paciente/estatística & dados numéricos , Projetos Piloto , Complicações Pós-Operatórias/etiologia , Complicações Pós-Operatórias/prevenção & controle , Avaliação de Programas e Projetos de Saúde , Qualidade de Vida
5.
PLoS One ; 14(7): e0218597, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31260482

RESUMO

BACKGROUND: Funding shortages and an ageing population have increased pressures on state or insurance funded end of life care for older people. Across the world, policy debate has arisen about the potential role volunteers can play, working alongside health and social care professionals in the community to support and care for the ageing and dying. AIMS: The authors examined self-reported levels of care for the elderly by the public in England, and public opinions of community volunteering concepts to care for the elderly at the end of life. In particular, claimed willingness to help and to be helped by local people was surveyed. METHODS: A sample of 3,590 adults in England aged 45 or more from an online access panel responded to a questionnaire in late 2017. The survey data was weighted to be representative of the population within this age band. Key literature and formative qualitative research informed the design of the survey questionnaire, which was further refined after piloting. RESULTS: Preferences for different models of community volunteering were elicited. There was a preference for 'formal' models with increased wariness of 'informal' features. Whilst 32% of adults said they 'might join' depending on whom the group helped, unsurprisingly more personal and demanding types of help significantly reduced the claimed willingness to help. Finally, willingness to help (or be helped) by local community carers or volunteers was regarded as less attractive than care being provided by personal family, close friends or indeed health and care professionals. CONCLUSION: Findings suggest that if community volunteering to care for elderly people at the end of life in England is to expand it may require considerable attention to the model including training for volunteers and protections for patients and volunteers as well as public education and promotion. Currently, in England, there is a clear preference for non-medical care to be delivered by close family or social care professionals, with volunteer community care regarded only as a back-up option.


Assuntos
Cuidadores/psicologia , Serviços de Saúde Comunitária/ética , Agentes Comunitários de Saúde/provisão & distribução , Assistência Terminal/psicologia , Voluntários/psicologia , Idoso , Idoso de 80 Anos ou mais , Cuidadores/ética , Cuidadores/organização & administração , Serviços de Saúde Comunitária/organização & administração , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Assistência Terminal/ética , Assistência Terminal/organização & administração , Reino Unido
6.
Cien Saude Colet ; 24(5): 1723-1732, 2019 May 30.
Artigo em Português, Inglês | MEDLINE | ID: mdl-31166507

RESUMO

The concepts of health, disease, care and care practices in family units of marketers in Feira de Santana (BA), Brazil, are the object of the study, which aimed to understand the relationships between the concepts of health, disease, care and ways of seeing their care practices. An exploratory research through qualitative approach was conducted with 16 marketers through a semi-structured interview. The corpus was submitted to thematic content analysis. The concepts about health, disease and care are linked to the explanatory models of health-disease process emanating from the professional sector of care and to the socially constructed of action rationales and are coordinated with the ways of daily acting to provide care. The family stands out in the care of its members through solidarity, leveraging resources in order to overcome health problems. Among the therapeutic options, the marketers use the informal sector, especially home care provided by their support network. The family is a network of social support that assumes a moral and solidary duty in the provision of health care to its members without relinquishing the healthcare networks.


Assuntos
Cuidadores/organização & administração , Assistência à Saúde/organização & administração , Família , Apoio Social , Adulto , Idoso , Brasil , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Adulto Jovem
7.
BMC Public Health ; 19(1): 714, 2019 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-31174500

RESUMO

BACKGROUND: In the context of an ageing population and an increase in the appearance of chronic diseases, the commitment of caregivers makes it possible for people confronted with disease to remain at home. Over time, they need support to overcome their difficulties. They also show a need for recognition for their participation in the economic maintenance of the health system. To promote this support, so-called "win/win" partnerships are envisaged. Research is needed to identify the building blocks of an innovative intervention. METHODS: A cross-sectional descriptive study was carried out with health institutions in the canton of Geneva to identify the proportion of institutions with a positive opinion on partnership with caregivers. It has also identified potential partnerships with caregivers of people facing dementia and possible compensation in exchange for the provision of their skills. Descriptive statistics are presented according to their frequencies and relative percentages (categorical variables), as well as by their mean, standard deviation and median (continuous variables). Logistic regression models were used to assess the factors associated with a favorable opinion towards win/win partnerships. RESULTS: The proportion of executives of health-related institutions with a positive opinion of partnership with caregivers is high: 74.7% (95% CI: 64.8-83.1%). Several types of potential partnerships have been identified between health institutions and caregivers. Areas in which certain activities have been identified as being able to be carried out by caregivers include governance, care, provision of services, accompaniment and support, training and research. Types of compensation for caregivers have also been highlighted. CONCLUSION: This study shows that some areas activities of health facilities in the canton of Geneva could be the subject of win-win partnerships with caregivers of people with dementia. Positive view of health executives on partnership with caregivers is encouraging. In the future, innovative projects can emerge to meet the needs of each party.


Assuntos
Cuidadores/organização & administração , Redes Comunitárias , Demência/terapia , Instalações de Saúde , Colaboração Intersetorial , Idoso , Cuidadores/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Suíça
8.
Int J Technol Assess Health Care ; 35(2): 92-98, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30867077

RESUMO

OBJECTIVES: The aim of this study was to develop a feasible and effective strategy to involve patients in the Spanish Network of Agencies of Health Technology Assessment (RedETS). METHODS: The framework for patient involvement (PI) in the assessment activities and processes of RedETS were developed through a research project that included: (i) a systematic search of the international literature describing a strategy and/or a methodology linking health technology assessment (HTA) and PI; (ii) a qualitative study through interviews with RedETS members to analyze the perceptions of PI among HTA managers in the Spanish context; (iii) a Delphi consultation with three large platforms of patients, carers and consumer organizations in Spain about their perspectives of PI; (iv) a consensus process with the members of the RedETS Governing Council to define the final strategy. RESULTS: Three main themes were identified in the literature and Web site review: (i) PI methods for the different HTA phases; (ii) Participant definition and selection; (iii) Resources needed. A three-step implementation strategy was proposed: (i) short-term actions: piloting and testing patient participation in HTA and building patients' capacity; (ii) medium-term actions: broadening the participation of patients, and building internal capacity; (iii) long-term actions: consolidating and mainstreaming patient involvement CONCLUSIONS: Patient participation can be incorporated into almost all the HTA phases and products with greater or lesser degrees of difficulty. However, a progressive implementation strategy is suggested for a feasible PI process.


Assuntos
Participação do Paciente/métodos , Avaliação da Tecnologia Biomédica/organização & administração , Cuidadores/organização & administração , Participação da Comunidade/métodos , Consenso , Técnica Delfos , Humanos , Pesquisa Qualitativa , Projetos de Pesquisa , Espanha , Avaliação da Tecnologia Biomédica/economia , Fatores de Tempo
9.
Public Health Nurs ; 36(2): 199-206, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30549090

RESUMO

OBJECTIVES: This paper provides an overview of the status of dementia care in Mainland China under the framework of the three-tier long-term care system proposed by the Chinese government, and gives the direction for service development. METHODS: Official documents, annual reports of related associations, and studies conducted in Mainland China from 2006 to 2017, published both in English and Chinese were reviewed. RESULTS: With the establishment of the three-tier long-term care system, the Government has invested a lot in long-term care, and improvements have been made. However, specific areas of dementia care still face challenges. DISCUSSION: Strategies in improving the long-term care services have been achieved. These included training for informal caregivers at home settings, increased investment in community health centers, and increased institutional placements, etc. However, these are not enough to fulfill the needs of people with dementia and their caregivers. IMPLICATIONS FOR NURSING AND HEALTH POLICY: Multiple levels of training and interaction within the framework of the three-tier long-term care system as well as more research are recommended for improving dementia care.


Assuntos
Demência/terapia , Acesso aos Serviços de Saúde/organização & administração , Assistência de Longa Duração/organização & administração , Determinação de Necessidades de Cuidados de Saúde/organização & administração , Idoso , Cuidadores/organização & administração , China , Demência/enfermagem , Humanos , Qualidade da Assistência à Saúde
10.
Curr Opin Support Palliat Care ; 13(1): 9-13, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30507631

RESUMO

PURPOSE OF REVIEW: A holistic palliative approach for heart failure care emphasizes supporting nonprofessional informal caregivers. Informal caregivers play a vital role caring for heart failure patients. However, caregiving negatively affects informal caregivers' well being, and in turn heart failure patients' health outcomes. This opinion article proposes that complex adaptive systems (CAS) theory applied to heart failure models of care can support the resiliency of the heart failure patient - informal caregiver dyad. RECENT FINDINGS: Heart failure care is enacted within a complex system composed of patients, their informal caregivers and a variety of health professionals. In a national study, we employed a CAS perspective to explore how all parts of the heart failure team function interdependently in emergent and adaptive ways. Salient in our data were the severe vulnerability of elderly heart failure patients and their long-term partners who suffered from a chronic illness. Novel approaches are needed that can quickly adapt and reorganize care when unpredictable disturbances occur in the couples' functional capacity. SUMMARY: The linear protocol-driven care models that shape heart failure guidelines, training and care delivery initiatives do not adequately capture heart failure patients' social environment. CAS is a powerful theoretical tool that can render visible the most vulnerable members of the heart failure team, and incite robust specialized holistic palliative heart failure care models.


Assuntos
Cuidadores/organização & administração , Insuficiência Cardíaca/epidemiologia , Insuficiência Cardíaca/psicologia , Cuidados Paliativos/organização & administração , Apoio Social , Adaptação Psicológica , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Doença Crônica , Efeitos Psicossociais da Doença , Saúde Holística , Humanos , Cuidados Paliativos/psicologia , Resiliência Psicológica , Meio Social , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologia
11.
Soins ; 63(830): 52-53, 2018 Nov.
Artigo em Francês | MEDLINE | ID: mdl-30449474

RESUMO

Health facilities are today subjected to a drive for profitability, efficiency and performance which go against caregivers' core values of providing help and support. To maintain the necessary focus on care and its difficulties, health managers must favour and reinforce relations between colleagues, and involve teams in the decisions and projects concerning their care activity. Working on the relationship is an essential part of this approach.


Assuntos
Comportamento Cooperativo , Instalações de Saúde/normas , Equipe de Assistência ao Paciente , Cuidadores/organização & administração , Cuidadores/psicologia , Humanos , Recursos Humanos de Enfermagem no Hospital/organização & administração , Recursos Humanos de Enfermagem no Hospital/psicologia , Equipe de Assistência ao Paciente/organização & administração , Equipe de Assistência ao Paciente/normas
12.
Int J Gynecol Cancer ; 28(9): 1722-1727, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-30325785

RESUMO

OBJECTIVES: As gynecologic cancer care shifts to the outpatient setting, caregivers are instrumental in helping patients navigate the demands of the disease and treatment. Through social media, we aimed to understand the needs of caregivers of patients with gynecologic cancers and support services necessary to meet these needs. METHODS: On January 10, 2018, a monthly Twitter discussion session was hosted by the GYNecologic Cancer Social Media community (handle @GYNCSM) using the hashtag #GYNCSM. Five topics regarding caregiver needs and support were discussed. Basic descriptive statistics, including means and frequencies of tweets, and a content analysis of the tweets were performed. RESULTS: Forty-six participants posted a total of 471 tweets, with 1.725 million impressions. Four main themes of caregiver needs emerged, including accepting help from others, a need to care for themselves as caregivers, increased access to information and resources, and a need for the health care team to communicate with caregivers. Themes relating to barriers to obtaining support services included practical barriers, a lack of awareness, negative emotions, and a need to do it all themselves. Participants suggested that caregiver support programs include convenient resources, caregiver peer support programs, support for the "work" of caregiving, and support to improve the emotional and physical health of the caregiver. CONCLUSIONS: Experts, patients, and caregivers effectively engaged in social media to identify a wide range of needs of caregivers of women with gynecologic cancers. Further research is needed to identify specific support services that could meet the priority needs of a broader network of caregivers.


Assuntos
Cuidadores/organização & administração , Cuidadores/psicologia , Neoplasias dos Genitais Femininos/terapia , Necessidades e Demandas de Serviços de Saúde , Feminino , Neoplasias dos Genitais Femininos/psicologia , Humanos , Determinação de Necessidades de Cuidados de Saúde , Mídias Sociais
14.
Implement Sci ; 13(1): 123, 2018 09 24.
Artigo em Inglês | MEDLINE | ID: mdl-30249276

RESUMO

BACKGROUND: Dissemination of clinical practice guidelines alone is insufficient to create meaningful change in clinical practice. Quality improvement collaborative models have potential to address the evidence-practice gap in dementia care because they capitalise on known knowledge translation enablers and incorporate optimal approaches to implementation. Non-pharmacological interventions focused on promoting independence are effective and favoured by people with dementia and their carers but are not routinely implemented. The objective of this translational project is to assess the impact of quality improvement collaboratives (QICs) on adherence to non-pharmacological recommendations from the Clinical Practice Guidelines for Dementia in Australia. METHODS: This project will employ an interrupted time-series design with process evaluation to assess the impact, uptake, feasibility, accessibility, cost, and sustainability of the QICs over 18 months. Thirty clinicians from across Australia will be invited to join the QICs to build their capacity in leading innovation in dementia care. Clinicians will participate in a training program and be supported to develop and implement a quality improvement project unique to their service context using plan-do-study-act cycles. Regular online meetings with their peers in the QIC will facilitate benchmarking and problem-solving. Clinicians will describe their practice via monthly checklists, and guideline adherence will be determined against a set of defined criteria. Phone interviews with up to 180 client dyads will be used to assess satisfaction with care and client outcomes. Clinician interviews and field note data will be used to explore implementation and costs. Involvement of people with dementia and carers will be embedded in the study design, conduct, and reporting, in addition to clinical and industry expertise. DISCUSSION: The quality of dementia care in Australia is largely dependent on the clinician involved and the extent to which they apply best available evidence in their practice. This study will determine the elements of this multifaceted implementation strategy that contributed to guideline adherence and client outcomes. The findings will inform future translational approaches to improving care and outcomes for people with dementia and their carers. TRIAL REGISTRATION: Registered with the Australian New Zealand Clinical Trials Registry 21 February 2018 ( ACTRN12618000268246 ).


Assuntos
Demência/terapia , Fidelidade a Diretrizes/organização & administração , Disseminação de Informação/métodos , Guias de Prática Clínica como Assunto , Melhoria de Qualidade/organização & administração , Austrália , Benchmarking , Cuidadores/educação , Cuidadores/organização & administração , Comportamento Cooperativo , Exercício , Fidelidade a Diretrizes/normas , Pessoal de Saúde/educação , Pessoal de Saúde/organização & administração , Humanos , Ciência da Implementação , Análise de Séries Temporais Interrompida , Liderança , Terapia Ocupacional/organização & administração , Resolução de Problemas , Projetos de Pesquisa
15.
Health Soc Care Community ; 26(6): 819-828, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-30033620

RESUMO

Greater integration of health and social care services is considered vital to ensure sustainable long-term quality provision for the growing numbers of people living with dementia and their families. Integration of services is at the heart of government policy in England. We evaluated a new integrated service for post diagnostic dementia care, funded as a pilot and delivered through a partnership of statutory and voluntary sector health and social care organisations. The service used an adapted Admiral Nursing service model with a workforce of Admiral Nurses (ANs) and Dementia Advisers (DAs). A mixed method approach was used to assess implementation and outcomes. It involved collection of service activity data, carer reported experience survey data, focus group discussions and interviews with the service delivery team, and the management group. Qualitative data was analysed using a framework approach. About 37.8% of the eligible population registered with the service over the 14-month pilot period. The self-referral route accounted for the majority of referrals, and had enabled those not currently receiving specialist dementia care to engage with the service. Carer satisfaction surveys indicated high levels of satisfaction with the service. The caseload management system offered specific benefits. Individual caseloads ensured continuity of care while the integrated structure facilitated seamless transfer between or shared working across AN and DA caseloads. The skill mix facilitated development of the DA role increasing their potential contribution to dementia care. Challenges included managing large workloads and agreeing responsibilities across the skill mix of staff. This model of fully integrated service offers a novel approach to address the problems of fragmented provision by enabling joined-up working across health and social care.


Assuntos
Cuidadores/organização & administração , Prestação Integrada de Cuidados de Saúde/métodos , Equipe de Assistência ao Paciente/organização & administração , Serviço Social/métodos , Administração de Caso/organização & administração , Demência , Inglaterra , Grupos Focais , Humanos , Avaliação de Programas e Projetos de Saúde
16.
BMJ Open ; 8(6): e018977, 2018 06 09.
Artigo em Inglês | MEDLINE | ID: mdl-29886439

RESUMO

BACKGROUND: Shared decision-making is recognised as an important element of person-centred dementia care. OBJECTIVES: The aim of this review was to explore how people living with dementia and cognitive impairment can be included in day-to-day decisions about their health and care in extended care settings. DESIGN: A systematic review including primary research relating to shared decision-making, with cognitively impaired adults in (or transferrable to) extended care settings. Databases searched were: CINAHL, PubMed, the Cochrane Library, NICE Evidence, OpenGrey, Autism Data, Google Scholar, Scopus and Medicines Complete (June to October 2016 and updated 2018) for studies published in the last 20 years. RESULTS: Of the 19 included studies 15 involved people with living dementia, seven in extended care settings. People living with cognitive impairment often have the desire and ability to participate in decision-making about their everyday care, although this is regularly underestimated by their staff and family care partners. Shared decision-making has the potential to improve quality of life for both the person living with dementia and those who support them. How resources to support shared decision-making are implemented in extended care settings is less well understood. CONCLUSIONS: Evidence suggests that people living with cognitive impairment value opportunities to be involved in everyday decision-making about their care. How these opportunities are created, understood, supported and sustained in extended care settings remains to be determined. TRIAL REGISTRATION NUMBER: CRD42016035919.


Assuntos
Disfunção Cognitiva/terapia , Tomada de Decisões , Demência/terapia , Assistência de Longa Duração/métodos , Cuidadores/organização & administração , Cuidadores/psicologia , Disfunção Cognitiva/psicologia , Demência/psicologia , Feminino , Humanos , Masculino , Assistência Centrada no Paciente/organização & administração
17.
BMC Health Serv Res ; 18(1): 508, 2018 Jun 28.
Artigo em Inglês | MEDLINE | ID: mdl-29954403

RESUMO

BACKGROUND: After hospitalization for cardiac disease, older patients are at high risk of readmission and death. Although geriatric conditions increase this risk, treatment of older cardiac patients is limited to the management of cardiac diseases. The aim of this study is to investigate if unplanned hospital readmission and mortality can be reduced by the Cardiac Care Bridge transitional care program (CCB program) that integrates case management, disease management and home-based cardiac rehabilitation. METHODS: In a randomized trial on patient level, 500 eligible patients ≥ 70 years and at high risk of readmission and mortality will be enrolled in six hospitals in the Netherlands. Included patients will receive a Comprehensive Geriatric Assessment (CGA) at admission. Randomization with stratified blocks will be used with pre-stratification by study site and cognitive status based on the Mini-Mental State Examination (15-23 vs ≥ 24). Patients enrolled in the intervention group will receive a CGA-based integrated care plan, a face-to-face handover with the community care registered nurse (CCRN) before discharge and four home visits post-discharge. The CCRNs collaborate with physical therapists, who will perform home-based cardiac rehabilitation and with a pharmacist who advices the CCRNs in medication management The control group will receive care as usual. The primary outcome is the incidence of first all-cause unplanned readmission or mortality within 6 months post-randomization. Secondary outcomes at three, six and 12 months after randomization are physical functioning, functional capacity, depression, anxiety, medication adherence, health-related quality of life, healthcare utilization and care giver burden. DISCUSSION: This study will provide new knowledge on the effectiveness of the integration of geriatric and cardiac care. TRIAL REGISTRATION: NTR6316 . Date of registration: April 6, 2017.


Assuntos
Cardiopatias/enfermagem , Cuidado Transicional/organização & administração , Idoso , Idoso de 80 Anos ou mais , Cuidadores/organização & administração , Feminino , Avaliação Geriátrica/métodos , Cardiopatias/reabilitação , Hospitalização/estatística & dados numéricos , Visita Domiciliar/estatística & dados numéricos , Humanos , Masculino , Países Baixos , Manejo da Dor/enfermagem , Equipe de Assistência ao Paciente/organização & administração , Alta do Paciente/estatística & dados numéricos , Readmissão do Paciente/estatística & dados numéricos , Farmacêuticos/organização & administração , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Medição de Risco , Método Simples-Cego
18.
s.l; NICE; June 2018.
Não convencional em Inglês | BIGG | ID: biblio-966484

RESUMO

This guideline covers diagnosing and managing dementia (including Alzheimer's disease). It aims to improve care by making recommendations on training staff and helping carers to support people living with dementia.


Assuntos
Humanos , Cuidadores/organização & administração , Demência , Doença de Alzheimer , Medição de Risco
19.
Rev Neurol (Paris) ; 174(6): 475-479, 2018 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-29685429

RESUMO

Multiple sclerosis (MS) is a disease with a number of aspects involving cooperation among many caregivers. In France, the organization of care for patients with MS has changed over the past 10 years with the development of specific structures, such as regional networks and expert centers. Their aims are to help improve MS patient care and quality of life. Multiple domains are involved, ranging from MS diagnosis to treatment, and including rehabilitation and the psychological and social impact of the disease. Thus, a personalized plan of care service is set up for each MS patient under the guidance of MS healthcare professionals.


Assuntos
Cuidadores/organização & administração , Pessoal de Saúde/organização & administração , Esclerose Múltipla/terapia , Cuidadores/estatística & dados numéricos , França/epidemiologia , Pessoal de Saúde/estatística & dados numéricos , Humanos , Esclerose Múltipla/epidemiologia , Equipe de Assistência ao Paciente/organização & administração , Equipe de Assistência ao Paciente/estatística & dados numéricos , Qualidade de Vida
20.
BMJ Open ; 8(3): e018883, 2018 03 08.
Artigo em Inglês | MEDLINE | ID: mdl-29523560

RESUMO

INTRODUCTION: Many patients and family members experience a large gap between the protected environment during inpatient medical rehabilitation and life in the community after discharge. They feel insufficiently prepared to cope with the consequences of their disability in daily life. This study protocol describes the design measuring the effectiveness and implementation of family group conferences on the empowerment of patients with a high risk of chronic disability and their significant others. METHODS AND ANALYSIS: A multicentre controlled trial will be carried out in 12 rehabilitation centres in the Netherlands. A total of 328 clinically admitted patients will participate (≥18 years, diagnosed with acquired brain injury, spinal cord injury or leg amputation), and their significant others will be included. During three family group conferences, supported by the social worker, the patient, significant other and their social network will be stimulated in collaboration, to set up participation goals, determine the needed help and make a concrete action plan. Self-reported questionnaires will be collected at baseline, clinical discharge, and 3 months and 6 months following clinical discharge. Empowerment as the primary outcome is operationalised as self-efficacy and participation. Secondary outcome measures are psychological (eg, coping, neuroticism) and environmental (eg, family functioning, social support) factors. This is the first controlled trial evaluating the effectiveness of family group conferences in rehabilitation medicine among adult patients and their significant others, providing us with knowledge in improving rehabilitation care. ETHICS AND DISSEMINATION: This study has been approved by the Medical Ethics Committee of the University Medical Center Utrecht (number 15-617/C). The results will be published in peer-reviewed journals and presented in local, national and international conferences. TRIAL REGISTRATION NUMBER: NTR5742; Pre-results.


Assuntos
Cuidadores/organização & administração , Tomada de Decisões , Pessoas com Deficiência/reabilitação , Família , Participação do Paciente/métodos , Atividades Cotidianas , Estudos de Casos e Controles , Humanos , Estudos Prospectivos , Projetos de Pesquisa , Autoeficácia , Apoio Social , Inquéritos e Questionários
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