RESUMO
BACKGROUND: Supported self-management has been recommended by asthma guidelines for three decades; improving current suboptimal implementation will require commitment from professionals, patients and healthcare organisations. The Practical Systematic Review of Self-Management Support (PRISMS) meta-review and Reducing Care Utilisation through Self-management Interventions (RECURSIVE) health economic review were commissioned to provide a systematic overview of supported self-management to inform implementation. We sought to investigate if supported asthma self-management reduces use of healthcare resources and improves asthma control; for which target groups it works; and which components and contextual factors contribute to effectiveness. Finally, we investigated the costs to healthcare services of providing supported self-management. METHODS: We undertook a meta-review (systematic overview) of systematic reviews updated with randomised controlled trials (RCTs) published since the review search dates, and health economic meta-analysis of RCTs. Twelve electronic databases were searched in 2012 (updated in 2015; pre-publication update January 2017) for systematic reviews reporting RCTs (and update RCTs) evaluating supported asthma self-management. We assessed the quality of included studies and undertook a meta-analysis and narrative synthesis. RESULTS: A total of 27 systematic reviews (n = 244 RCTs) and 13 update RCTs revealed that supported self-management can reduce hospitalisations, accident and emergency attendances and unscheduled consultations, and improve markers of control and quality of life for people with asthma across a range of cultural, demographic and healthcare settings. Core components are patient education, provision of an action plan and regular professional review. Self-management is most effective when delivered in the context of proactive long-term condition management. The total cost (n = 24 RCTs) of providing self-management support is offset by a reduction in hospitalisations and accident and emergency visits (standard mean difference 0.13, 95% confidence interval -0.09 to 0.34). CONCLUSIONS: Evidence from a total of 270 RCTs confirms that supported self-management for asthma can reduce unscheduled care and improve asthma control, can be delivered effectively for diverse demographic and cultural groups, is applicable in a broad range of clinical settings, and does not significantly increase total healthcare costs. Informed by this comprehensive synthesis of the literature, clinicians, patient-interest groups, policy-makers and providers of healthcare services should prioritise provision of supported self-management for people with asthma as a core component of routine care. SYSTEMATIC REVIEW REGISTRATION: RECURSIVE: PROSPERO CRD42012002694 ; PRISMS: PROSPERO does not register meta-reviews.
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Asma/terapia , Atenção à Saúde/métodos , Autocuidado/métodos , Asma/economia , Asma/epidemiologia , Atenção à Saúde/economia , Custos de Cuidados de Saúde , Hospitalização/economia , Hospitalização/estatística & dados numéricos , Humanos , Qualidade de Vida , Autocuidado/economiaRESUMO
BACKGROUND: Asthma self-management remains poorly implemented in clinical practice despite overwhelming evidence of improved healthcare outcomes, reflected in guideline recommendations over three decades. To inform delivery in routine care, we synthesised evidence from implementation studies of self-management support interventions. METHODS: We systematically searched eight electronic databases (1980 to 2012) and research registers, and performed snowball and manual searches for studies evaluating implementation of asthma self-management in routine practice. We included, and adapted systematic review methodology to reflect, a broad range of implementation study designs. We extracted data on study characteristics, process measures (for example, action plan ownership), asthma control (for example, patient reported control questionnaires, days off school/work, symptom-free days) and use of health services (for example, admissions, emergency department attendances, unscheduled consultations). We assessed quality using the validated Downs and Black checklist, and conducted a narrative synthesis informed by Kennedy's whole systems theoretical approach (considering patient, practitioner and organisational components and the interaction between these). RESULTS: We included 18 studies (6 randomised trials, 2 quasi-experimental studies, 8 with historical controls and 3 with retrospective comparators) from primary, secondary, community and managed care settings serving a total estimated asthma population of 800,000 people in six countries. In these studies, targeting professionals (n = 2) improved process, but had no clinically significant effect on clinical outcomes. Targeting patients (n = 6) improved some process measures, but had an inconsistent impact on clinical outcomes. Targeting the organisation (n = 3) improved process measures, but had little/no effect on clinical outcomes. Interventions that explicitly addressed patient, professional and organisational factors (n = 7) showed the most consistent improvement in both process and clinical outcomes. Authors highlighted the importance of health system commitment, skills training for professionals, patient education programmes supported by regular reviews, and on-going evaluation of implementation effectiveness. CONCLUSIONS: Our methodology offers an exemplar of reviews synthesising the heterogeneous implementation literature. Effective interventions combined active engagement of patients, with training and motivation of professionals embedded within an organisation in which self-management is valued. Healthcare managers should consider how they can promote a culture of actively supporting self-management as a normal, expected, monitored and remunerated aspect of the provision of care. SYSTEMATIC REVIEW REGISTRATION: PROSPERO (registration number: CRD42012002898 ) Accessed 24 May 2015.
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Asma/terapia , Autocuidado/métodos , Feminino , Humanos , Estudos Retrospectivos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Care coordination is defined as good communication between professionals to enable access to services based on need. AIMS: To explore patients' experience of care coordination in order to inform current debates on how best to coordinate care and deliver services in end-of-life for patients with lung cancer and those with chronic obstructive pulmonary disease (COPD). METHODS: A qualitative study involving serial interviews was performed in 18 patients recruited from three hospital outpatient clinics situated in a hospital. Interviews were transcribed verbatim and data were analysed thematically. RESULTS: Data comprised 38 interviews. Patients experiencing services related to lung cancer reported good access enabled by the involvement of a keyworker. This contrasted with COPD patients' experiences of services. The keyworker coordinated care between and within clinical settings, referred patients to community palliative care services, helped them with financial issues, and provided support. CONCLUSIONS: For patients with lung cancer, the keyworker's role augmented access to various services and enabled care based on their needs. The experiences of patients with COPD highlight the importance of providing a keyworker for this group of patients in both secondary and primary care.
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Neoplasias Pulmonares/terapia , Doença Pulmonar Obstrutiva Crônica/terapia , Assistência Terminal/organização & administração , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Índice de Gravidade de DoençaRESUMO
INTRODUCTION: Informal caregivers needs in cancer/advanced disease are largely unmet. The science of carer intervention evaluation is methodologically challenging, and the evidence historically weak. OBJECTIVE: This systematic review updates an earlier effectiveness review to determine both the effectiveness of subsequently published intervention studies, and the current state of science. METHOD: The evidence was identified and appraised using a comprehensive search strategy. Articles were searched from 2001 to 2010 using the following electronic databases: Medline, PsychINFO and CINAHL. Inclusion criteria were studies reporting intervention data for informal adult caregivers of a patient with a diagnosis of cancer or receiving palliative care. The design and evidence rigour were assessed using the Jadad Rating Scale, and the Quality Rating Scale. RESULTS: 33 studies met inclusion criteria. From the original review, an encouraging increase was identified in the number of evaluations (from 8 to 33), in carer-specific interventions (from 6 to 17) and in the robustness of the study design (an increase from 2 to 12 studies with before/after measures, comparison groups and prospective data). CONCLUSIONS: The evidence suggests a rapid increase in the number of robust intervention studies. However, the range of models remains narrow in relation to caregivers' needs and preferences.
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Cuidadores/psicologia , Serviços de Assistência Domiciliar/organização & administração , Neoplasias/enfermagem , Cuidados Paliativos/normas , Apoio Social , Medicina Baseada em Evidências , Necessidades e Demandas de Serviços de Saúde , Serviços de Assistência Domiciliar/normas , HumanosRESUMO
BACKGROUND: Although informal end-of-life care is associated with significant physical and psychological morbidity for caregivers, few interventions have been developed to meet these needs. This study aimed to identify existing coping and support mechanisms among informal cancer caregivers in order to inform intervention development. METHOD: One-to-one semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home palliative care patients. RESULTS: Caregivers' existing coping strategies included distraction, mental stimulation, emotional release, looking for the positive aspects of caregiving, and disengaging from stressful thoughts. The majority of the participants described the importance of support and understanding form family and friends. CONCLUSIONS: The data suggests that feasible and acceptable interventions will be those that are targeted to caregivers to assist them in optimising existing coping strategies and support from family and friends.
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Adaptação Psicológica , Cuidadores/psicologia , Apoio Social , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Papel (figurativo) , Medicina Estatal , Reino UnidoRESUMO
OBJECTIVES: Globally, healthcare policy promotes supported self-management as a strategy for people with long-term conditions. This meta-review aimed to explore how people with hypertension make sense of their condition, to assess the effectiveness of supported self-management in hypertension, and to identify effective components of support. METHODS: From a search of eight databases (January 1993-October 2012; update June 2017) we included systematic syntheses of qualitative studies of patients' experiences, and systematic reviews of randomized controlled trials evaluating the impact of supported self-management on blood pressure and medication adherence. We used meta-ethnography, meta-Forest plots and narrative analysis to synthesise the data. RESULTS: Six qualitative and 29 quantitative reviews provided data from 98 and 446 unique studies, respectively. Self-management support consistently reduced SBP (by between 2 and 6âmmHg), and DBP (by between 1 and 5âmmHg). Information about hypertension and treatment, home BP monitoring (HBPM) and feedback (including telehealth) were widely used in effective interventions. Patients' perceptions of a disease with multiple symptoms contrasted with the professional view of an asymptomatic condition. HBPM, in the context of a supportive patient-professional relationship, changed perceptions of the significance of symptoms and fostered confidence in ability to self-manage hypertension. CONCLUSION: Our systematic qualitative and quantitative meta-reviews tell complementary stories. Supported self-management can improve blood pressure control. Interventions are complex and encompass a broad range of support strategies. HBPM (with or without telehealth) within the context of a supportive patient-professional partnership can bridge the gap between medical and lay perspectives of hypertension and enable effective self-management.
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Hipertensão/reabilitação , Autogestão , Pressão Sanguínea , Determinação da Pressão Arterial , Humanos , Adesão à Medicação , Revisões Sistemáticas como Assunto , TelemedicinaRESUMO
OBJECTIVES: Self-management support aims to give people with chronic disease confidence to actively manage their disease, in partnership with their healthcare provider. A meta-review can inform policy-makers and healthcare managers about the effectiveness of self-management support strategies for people with type 2 diabetes, and which interventions work best and for whom. DESIGN: A meta-review of systematic reviews of randomised controlled trials (RCTs) was performed adapting Cochrane methodology. SETTING AND PARTICIPANTS: Eight databases were searched for systematic reviews of RCTs from January 1993 to October 2016, with a pre-publication update in April 2017. Forward citation was performed on included reviews in Institute for Scientific Information (ISI) Proceedings. We extracted data and assessed quality with the Revised-Assessment of Multiple Systematic Reviews (R-AMSTAR). PRIMARY AND SECONDARY OUTCOME MEASURES: Glycaemic control as measured by glycated haemoglobin (HbA1c) was the primary outcome. Body mass Index, lipid profiles, blood pressure and quality of life scoring were secondary outcomes. Meta-analyses reporting HbA1c were summarised in meta-forest plots; other outcomes were synthesised narratively. RESULTS: 41 systematic reviews incorporating data from 459 unique RCTs in diverse socio-economic and ethnic communities across 33 countries were included. R-AMSTAR quality score ranged from 20 to 42 (maximum 44). Apart from one outlier, the majority of reviews found an HbA1c improvement between 0.2% and 0.6% (2.2-6.5 mmol/mol) at 6 months post-intervention, but attenuated at 12 and 24 months. Impact on secondary outcomes was inconsistent and generally non-significant. Diverse self-management support strategies were employed; no single approach appeared optimally effective (or ineffective). Effective programmes tended to be multi-component and provide adequate contact time (>10 hours). Technology-facilitated self-management support showed a similar impact as traditional approaches (HbA1c MD -0.21% to -0.6%). CONCLUSIONS: Self-management interventions using a range of approaches improve short-term glycaemic control in people with type 2 diabetes including culturally diverse populations. These findings can inform researchers, policy-makers and healthcare professionals re-evaluating the provision of self-management support in routine care. Further research should consider implementation and sustainability.
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Diabetes Mellitus Tipo 2 , Equipe de Assistência ao Paciente , Autogestão , Humanos , Pressão Sanguínea/fisiologia , Índice de Massa Corporal , Assistência à Saúde Culturalmente Competente , Diabetes Mellitus Tipo 2/sangue , Diabetes Mellitus Tipo 2/fisiopatologia , Diabetes Mellitus Tipo 2/psicologia , Diabetes Mellitus Tipo 2/terapia , Hemoglobinas Glicadas/metabolismo , Comportamentos Relacionados com a Saúde , Lipídeos/sangue , Qualidade de Vida , Autoeficácia , Autogestão/métodos , Revisões Sistemáticas como AssuntoRESUMO
BACKGROUND: Supporting self-management is a core response of health care systems globally to the increasing prevalence of long-term conditions. Lack of a comprehensive taxonomy (or classification) of self-management support components hinders characterization and, ultimately, understanding of these frequently complex, multi-component interventions. OBJECTIVE: To develop a comprehensive, descriptive taxonomy of self-management support components. METHODS: Components were derived from the 969 unique randomized controlled trials described in the 102 systematic reviews and 61 implementation trials, examining 14 diverse long-term conditions included in the Practical Reviews in Self-Management Support (PRISMS) project followed by discussion at an expert stakeholder workshop. The utility of the taxonomy was then tested using a self-management support intervention for cancer survivors. RESULTS: The PRISMS taxonomy comprises 14 components that might be used to support self-management (e.g. information about condition/management, provision of equipment, social support), when delivered to someone with a long-term condition or their carer. Overarching dimensions are delivery mode; personnel delivering the support; intervention targeting; and intensity, frequency and duration of the intervention. The taxonomy does not consider the effectiveness or otherwise of the different components or the overarching dimensions. CONCLUSIONS: The PRISMS taxonomy offers a framework to researchers describing self-management support interventions, to reviewers synthesizing evidence and to developers of health services for people with long-term conditions.
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Doença Crônica/terapia , Atenção à Saúde/organização & administração , Autocuidado/classificação , Autocuidado/métodos , Apoio Social , Cuidadores , Humanos , Cooperação do Paciente , Educação de Pacientes como Assunto/organização & administração , Telemedicina/métodosRESUMO
OBJECTIVE: Multimorbidity is increasingly common in the last year of life, and associated with frequent hospital admissions. The epidemiology is well described, but patient perspectives are less understood. We report the experiences and perceptions of people with advanced multimorbidity to inform improvements in palliative and end-of-life care. DESIGN: Multicentre study including serial, multiperspective interviews with patients and their family carers; an interpretive analysis of experiences and understanding of living with advanced multimorbidity. PARTICIPANTS: We recruited patients and their family carers using established UK clinical guidance for the identification of people anticipated to be in their last year of life. SETTINGS: An acute admissions unit in a Scottish regional hospital; a large English general practice; a London respiratory outpatient clinic. RESULTS: We analysed 87 interviews with 37 patients and 17 carers. They struggled with multiple changing medications, multiple services better aligned with single conditions such as cancer, and a lack of coordination and continuity of care. Family carers spoke of physical, mental and emotional exhaustion and feeling undervalued by professionals. Patients and carers frequently saw deteriorating health as part of 'growing old'. Many used a 'day-to-day' approach to self-management that hindered engagement with advance care planning and open discussions about future care. 'Palliative care' and 'dying soon' were closely related concepts for many patients, carers and professionals, so rarely discussed. CONCLUSIONS: Patients with advanced multimorbidity received less care than their illness burden would appear to merit. Some people did restrict their interactions with care providers to preserve autonomy, but many had a limited understanding of their multiple conditions, medications and available services, and found accessing support impersonal and challenging. Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care.
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Cuidadores/psicologia , Comorbidade , Cuidados Paliativos/psicologia , Assistência Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/estatística & dados numéricos , Escócia , Autocuidado/psicologiaRESUMO
BACKGROUND: Dissemination and implementation of health care interventions are currently hampered by the variable quality of reporting of implementation research. Reporting of other study types has been improved by the introduction of reporting standards (e.g. CONSORT). We are therefore developing guidelines for reporting implementation studies (StaRI). METHODS: Using established methodology for developing health research reporting guidelines, we systematically reviewed the literature to generate items for a checklist of reporting standards. We then recruited an international, multidisciplinary panel for an e-Delphi consensus-building exercise which comprised an initial open round to revise/suggest a list of potential items for scoring in the subsequent two scoring rounds (scale 1 to 9). Consensus was defined a priori as 80% agreement with the priority scores of 7, 8, or 9. RESULTS: We identified eight papers from the literature review from which we derived 36 potential items. We recruited 23 experts to the e-Delphi panel. Open round comments resulted in revisions, and 47 items went forward to the scoring rounds. Thirty-five items achieved consensus: 19 achieved 100% agreement. Prioritised items addressed the need to: provide an evidence-based justification for implementation; describe the setting, professional/service requirements, eligible population and intervention in detail; measure process and clinical outcomes at population level (using routine data); report impact on health care resources; describe local adaptations to the implementation strategy and describe barriers/facilitators. Over-arching themes from the free-text comments included balancing the need for detailed descriptions of interventions with publishing constraints, addressing the dual aims of reporting on the process of implementation and effectiveness of the intervention and monitoring fidelity to an intervention whilst encouraging adaptation to suit diverse local contexts. CONCLUSIONS: We have identified priority items for reporting implementation studies and key issues for further discussion. An international, multidisciplinary workshop, where participants will debate the issues raised, clarify specific items and develop StaRI standards that fit within the suite of EQUATOR reporting guidelines, is planned. REGISTRATION: The protocol is registered with Equator: http://www.equator-network.org/library/reporting-guidelines-under-development/#17 .
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Difusão de Inovações , Pesquisa Translacional Biomédica/métodos , Técnica Delphi , Pesquisa sobre Serviços de Saúde/métodos , Humanos , Desenvolvimento de ProgramasRESUMO
BACKGROUND: There is considerable policy interest in promoting self-management in patients with long-term conditions, but it remains uncertain whether these interventions are effective in stroke patients. DESIGN: Systematic meta-review of the evidence for self-management support interventions with stroke survivors to inform provision of healthcare services. METHODS: We searched MEDLINE, EMBASE, CINAHL, PsychINFO, AMED, BNI, Database of Abstracts of Reviews for Effectiveness, and Cochrane Database of Systematic Reviews for systematic reviews of self-management support interventions for stroke survivors. Quality was assessed using the R-AMSTAR tool, and data extracted using a customised data extraction form. We undertook a narrative synthesis of the reviews' findings. RESULTS: From 12,400 titles we selected 13 systematic reviews (published 2003-2012) representing 101 individual trials. Although the term 'self-management' was rarely used, key elements of self-management support such as goal setting, action planning, and problem solving were core components of therapy rehabilitation interventions. We found high quality evidence that supported self-management in the context of therapy rehabilitation delivered soon after the stroke event resulted in short-term (< 1 year) improvements in basic and extended activities of daily living, and a reduction in poor outcomes (dependence/death). There is some evidence that rehabilitation and problem solving interventions facilitated reintegration into the community. CONCLUSIONS: Self-management terminology is rarely used in the context of stroke. However, therapy rehabilitation currently successfully delivers elements of self-management support to stroke survivors and their caregivers with improved outcomes. Future research should focus on managing the emotional, medical and social tasks of long-term survivorship.
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Autocuidado/métodos , Autocuidado/normas , Reabilitação do Acidente Vascular Cerebral , Sobreviventes , Atividades Cotidianas , Cuidadores , Humanos , Avaliação de Resultados em Cuidados de Saúde/métodos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Supporting self-management in stroke patients improves psychological and functional outcomes but evidence on how to achieve this is sparse. We aimed to synthesise evidence from systematic reviews of qualitative studies in an overarching meta-review to inform the delivery and development of self-management support interventions. METHODS: We systematically searched eight electronic databases including MEDLINE, EMBASE and CINAHL for qualitative systematic reviews (published January 1993 to June 2012). We included studies exploring patients', carers' or health care professionals' experiences relevant to self-management support following a stroke, including studies describing the lived experience of surviving a stroke. We meta-synthesised the included review findings using a meta-ethnographic framework. RESULTS: Seven reviews, reporting 130 unique studies, were included. Themes emerging from the reviews were pertinent, consistent and showed data saturation; though explicit mention of self-management support was rare. Our meta-review highlighted the devastating impact of stroke on patients' self-image; the varying needs for self-management support across the trajectory of recovery; the need for psychological and emotional support throughout recovery particularly when physical recovery plateaus; the considerable information needs of patients and carers which also vary across the trajectory of recovery; the importance of good patient-professional communication; the potential benefits of goal-setting and action-planning; and the need for social support which might be met by groups for stroke survivors. CONCLUSIONS: The observed data saturation suggests that, currently, no further qualitative research simply describing the lived experience of stroke is needed; we propose that it would be more useful to focus on qualitative research informing self-management support interventions and their implementation. Our findings demonstrate both the on-going importance of self-management support and the evolving priorities throughout the stages of recovery following a stroke. The challenge now is to ensure these findings inform routine practice and the development of interventions to support self-management amongst stroke survivors.
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Autocuidado , Reabilitação do Acidente Vascular Cerebral , Humanos , Acidente Vascular Cerebral/patologia , Revisões Sistemáticas como AssuntoRESUMO
The complex intervention methodology framework defines the iterative process for developing and evaluating complex interventions in healthcare, but advice on implementation research was not included until the 2008 update. Our recent systematic review of implementation studies identified significant problems with reporting standards, including inconsistent terminology and crucial information that was missing or unclear. Introduction of reporting checklists has standardized the reporting of randomized controlled trials and other types of studies, and there is a need for similar guidance for reporting implementation studies. Key standards might include an explicit evidence base from a randomized controlled trial or guideline recommendation; recruitment to the clinical service, not the research; at least some outcomes at the population level using routinely collected data; and a description of the setting and the process of implementing the service. The complex intervention framework currently illustrates a cycle of development and evaluation, which includes implementation as a final step. We propose that the research underpinning implementation should be visualized as a second interrelated cycle. Just as the "phase III cycle" includes the iterative steps of development and piloting, a similar process may be needed to translate the intervention into a practical service that can be tested in a phase IV implementation study.
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Ensaios Clínicos Fase IV como Assunto/normas , Relatório de Pesquisa/normas , Lista de Checagem , Ensaios Clínicos Fase IV como Assunto/métodos , Humanos , Melhoria de QualidadeRESUMO
OBJECTIVES: To develop a model of care coordination for patients living with advanced progressive illness and their unpaid caregivers, and to understand their perspective regarding care coordination. DESIGN: A prospective longitudinal, multi-perspective qualitative study involving a case-study approach. METHODS: Serial in-depth interviews were conducted, transcribed verbatim and then analyzed through open and axial coding in order to construct categories for three cases (sites). This was followed by continued thematic analysis to identify underlying conceptual coherence across all cases in order to produce one coherent care coordination model. PARTICIPANTS: Fifty-six purposively sampled patients and 27 case-linked unpaid caregivers. SETTINGS: Three cases from contrasting primary, secondary and tertiary settings within Britain. RESULTS: Coordination is a deliberate cross-cutting action that involves high-quality, caring and well-informed staff, patients and unpaid caregivers who must work in partnership together across health and social care settings. For coordination to occur, it must be adequately resourced with efficient systems and services that communicate. Patients and unpaid caregivers contribute substantially to the coordination of their care, which is sometimes volunteered at a personal cost to them. Coordination is facilitated through flexible and patient-centered care, characterized by accurate and timely information communicated in a way that considers patients' and caregivers' needs, preferences, circumstances and abilities. CONCLUSIONS: Within the midst of advanced progressive illness, coordination is a shared and complex intervention involving relational, structural and information components. Our study is one of the first to extensively examine patients' and caregivers' views about coordination, thus aiding conceptual fidelity. These findings can be used to help avoid oversimplifying a real-world problem, such as care coordination. Avoiding oversimplification can help with the development, evaluation and implementation of real-world coordination interventions for patients and their unpaid caregivers in the future.
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Cuidadores/economia , Progressão da Doença , Assistência Centrada no Paciente/métodos , Pesquisa Qualitativa , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Assistência Centrada no Paciente/economiaRESUMO
BACKGROUND: Coordination of care for individuals with advanced progressive conditions is frequently poor. AIM: To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life. DESIGN AND SETTING: A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service. METHOD: Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed. RESULTS: Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators. CONCLUSION: Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly.
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Prestação Integrada de Cuidados de Saúde/organização & administração , Cuidados Paliativos/organização & administração , Adulto , Idoso , Idoso de 80 Anos ou mais , Assistência Ambulatorial/organização & administração , Assistência Ambulatorial/normas , Atitude do Pessoal de Saúde , Feminino , Medicina Geral/organização & administração , Medicina Geral/normas , Hospitalização/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Qualidade da Assistência à Saúde , Apoio SocialRESUMO
OBJECTIVES: To identify and appraise the existing evidence for the needs, experiences, and preferences for palliative and end-of-life (EOL) care in lesbian, gay, bisexual and transgender (LGBT) populations. METHOD: The databases searched were Medline (1950-present), PsycInfo (1806-2010), Cinahl (1982-2010), and ASSIA (1987-2010). RESULTS: Among 4483 articles, 133 papers were chosen for further exploration. Overall, 12 papers were retained in the study. The majority of papers focused on the cancer experience of gay men and lesbian women. Only a few papers had evidence for the bisexual population, while no studies related to transgender people. CONCLUSIONS: Existing evidence is explicit and indeed repetitive in highlighting the educational needs of health care professionals to explore sexual preferences, avoid heterosexist assumptions, and recognize the importance of partners in decision making. There is also a significant need to research LGBT experiences and refine services for patients and their caregivers.
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Homossexualidade , Grupos Minoritários/psicologia , Cuidados Paliativos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Preferência do Paciente/psicologia , Assistência Terminal , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
Background. Recent qualitative research indicates that life events can enhance behaviour change maintenance. if a number of sustaining conditions are met. This study aimed to quantitatively test this theory in the context of weight loss maintenance. Method. Based upon their weight histories participants were classified as either successful (n = 431) or unsuccessful (n = 592) dieters and all completed questionnaires relating to life events, choice, the function of eating and exercise and the model of their weight problem. Findings. Successful dieters reported a higher number of life events than unsuccessful dieters particularly for events such as "clothes did not fit me", "doctor's recommendation" and "reached my heaviest weight". Successful participants also indicated reduced choice over their previous unhealthy diet, more choice over their exercise behaviours and more benefits from the new healthy behaviours. They were also less likely to attribute their previous increased weight to any medical and psychological factors. This was accompanied by a belief about the effectiveness of behavioural solutions to their weight problem. Discussion. Life events can promote behaviour change for some individuals. This change is facilitated by a reduction in choice and disruption of function over the unhealthy behaviours, and a belief that behavioural solutions will be effective.
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The present qualitative study aims to explore the experiences of dieters who successfully maintain their weight loss with a focus on the transition in perception of self from their heaviest to their current reduced weight. Ten successful women from a slimming club who had lost at least 10 per cent of their weight for a minimum of one year participated in the study. The results showed an identity shift from a previous restrained self towards a liberated individual, regarding their social interactions, dietary habits, emotional regulation and self-appraisal. The results are discussed in terms of the process of reinvention and the impact of stigma on an obese person's self-identity.