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BACKGROUND: Scandinavian countries are internationally recognised for leading the way in older adult care and in digitally transforming healthcare. Dignity has become a central value in care for older adults in all three Scandinavian countries. Investigating documents about digitalisation in these countries can offer insights into how the dignity of older adults is impacted by digitally transforming healthcare. This study aims to provide knowledge about digital strategies and eHealth policies concerning older adults' dignity in three Scandinavian countries: Norway, Sweden and Denmark. METHODS: National-level documents by the Norwegian Directorate of eHealth, the Norwegian Directorate of Health, the Swedish Ministry of Health and Social Affairs and the Danish Ministry of Health concerning older adults were used as data sources. In addition, a systematic search of databases, informed by the Joanna Briggs Institute framework for systematic reviews of text and opinion papers, was undertaken to find relevant papers. All extracts concerning national digital strategies or innovative eHealth policies were deductively coded. Thereafter, extracts concerning older adults were inductively coded using a thematic analytic approach. RESULTS: A total of 26 sources satisfied the inclusion criteria, 14 governmental papers and 12 other papers. The three countries' national digital strategies focused on access to digital technologies and continuous learning for digital skills. The included papers describing national eHealth policies underlined the importance of placing the patient at the centre of healthcare and how digital systems can increase feelings of safety. Both types of documents concerned access to data, digital device security and the human dimension of care. CONCLUSION: The findings present evidence on Scandinavian countries' national digital strategies and innovative eHealth policies concerning older adults' dignity. The documents describe a lack of digital competence among older adults, resulting disengagement may put their well-being and human dignity at risk. Findings also underline the importance of security and at the same time the human dimension of care: Use of new digital systems must be meaningfully integrated into digital strategies and eHealth policies. All three Scandinavian countries strategies and policies underline the importance of equal access to healthcare services, as thus they promote a stance of dignified care.
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Análisis de Documentos , Telemedicina , Humanos , Anciano , Respeto , Revisiones Sistemáticas como Asunto , Telemedicina/métodos , Atención a la SaludRESUMEN
This study explored the lived experience of transition from adolescence to adulthood for young people with cerebral palsy to inform occupational therapy practitioners as to what might promote positive life opportunities. A phenomenological methodology was used with six participants, aged 18 to 25 years with cerebral palsy. The findings are presented in the form of hermeneutic stories and three themes: The storm of uncertainty; time, space and the body, Capsizing in a world of others and, Securing anchorage; being heard and understood. Recommendations include service integration across health, social care and education based on partnership and provision of coordinators.
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PURPOSE: Insomnia symptoms are commonly experienced by men after prostate cancer (PCa) treatment. Here we explored how sleep hygiene behaviours and psychological symptoms are associated with insomnia symptoms in PCa patients. METHODS: An online survey was posted on social media and sent to mailing lists of PCa and general cancer organisations. The survey collected information on demographic, sleep hygiene, and psychological symptoms using validated questionnaires. RESULTS: Data from 142 participants were compared based on the absence (age = 68.3 ± 8.9 years) and presence (age = 66.6 ± 9.0 years) of insomnia symptoms. Participants with insomnia symptoms had significantly higher levels of anxiety, depression, fatigue, and sleepiness as well as poorer sleep hygiene than those without insomnia symptoms. Control variables (age, number of comorbidities, and BMI) accounted for 11.9% of the variance in insomnia symptoms. Including treatment history contributed to an additional 1.6% of the variance in insomnia symptoms. Adding sleepiness, fatigue, anxiety, and depressive symptoms to the model explained an additional 44.6% of the variance in insomnia symptoms. Furthermore, including the sleep hygiene item 'I think, plan, or worry when I am in bed' and 'I sleep in an uncomfortable bedroom' explained an additional 3.6% of the variance in insomnia symptoms. CONCLUSIONS: Poor sleep hygiene, fatigue, sleepiness, anxiety, and depressive symptoms were all associated with worse insomnia symptoms in PCa patients. Improving sleep hygiene and treating psychological conditions may potentially help prevent and/or alleviate insomnia symptoms in PCa patients.
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Neoplasias de la Próstata , Trastornos del Inicio y del Mantenimiento del Sueño , Afecto , Anciano , Depresión/epidemiología , Depresión/etiología , Humanos , Masculino , Persona de Mediana Edad , Neoplasias de la Próstata/complicaciones , Sueño , Higiene del Sueño , Trastornos del Inicio y del Mantenimiento del Sueño/complicaciones , Trastornos del Inicio y del Mantenimiento del Sueño/etiologíaRESUMEN
BACKGROUND: Health ministries in Europe are investing increasingly in innovative digital technologies. Older adults, who have not grown up with digital innovation, are expected to keep up with technological shifts as much as other age groups. This is ethically challenging, as it may threaten a sense of dignity and well-being in older adults. RESEARCH OBJECTIVE: To clarify the phenomenon of sense of dignity experienced in older adults, concerning how their expectations and needs are met within the context of digitally led healthcare in Norway. RESEARCH DESIGN: A Reflective Lifeworld Research design was chosen, and purposive, in-depth interviews were conducted. PARTICIPANTS AND RESEARCH CONTEXT: The participants were 13 adults 75 years and older from Northern Norway, living at home and not receiving consistent assistance. ETHICAL CONSIDERATIONS: Followed the principles of the Helsinki Declaration. This study was approved by the Social Science Data Services in Norway (project number 916119). Interviews were conducted carefully within a safe environment chosen by the participants. FINDINGS: Older adults experience that using new digital systems in healthcare makes them become dependent with experiences of helplessness. They feel an increased sense of dependency on other people, and that recognition can assail their experience of personal dignity. Older adults not only expect digitally led healthcare to give them a feeling of safety but also experience feeling insecure concerning privacy and loss of possibilities for dialogue with healthcare providers. They are met by demands from society, which they often struggle to achieve. CONCLUSION: The phenomenon of sense of dignity experienced in older adults, concerning how their expectations and needs are met within digitally led healthcare, indicates a sense of feeling lost in the digital world. Further, innovative healthcare lacks focus on ethical performance. This impacts their perception of dignity, as loss of dignity is noticed especially in its rupture.
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Privacidad , Respeto , Anciano , Atención a la Salud , Humanos , Noruega , Investigación CualitativaRESUMEN
Sexual dysfunction and insomnia are common side effects of prostate cancer (PCa) treatment, but the link between these symptoms has not been explored. We explore here the association between various sexual parameters and insomnia symptoms in PCa patients. Data were collected via an online survey with recruitment through various PCa organizations. One hundred and forty two patients (age = 67.3 ± 8.9 years) completed the survey. The majority were in a relationship (84.6%), of Caucasian ethnicity (83.1%), and 33% had previously received androgen deprivation therapy (ADT). Control variables-age, number of comorbidities, past ADT use, body mass index, depression, anxiety, fatigue and daytime sleepiness-explained 58.2% of the variance for insomnia symptoms. Including orgasm difficulty in the models accounted for an additional 2.1% in the variance in insomnia symptoms. Conversely, the control variables listed above together with insomnia symptoms predicted 37.7% of the overall variance in orgasm difficulty in PCa patients. These data suggest that sexual rehabilitation programs for PCa patients should assess insomnia symptoms, and therapies to improve sexual function or sleep quality may be beneficial in both functions given the relationship between sleep and orgasm functions in this population.
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Neoplasias de la Próstata , Trastornos del Inicio y del Mantenimiento del Sueño , Anciano , Antagonistas de Andrógenos , Humanos , Masculino , Persona de Mediana Edad , Orgasmo , Neoplasias de la Próstata/complicaciones , Neoplasias de la Próstata/terapia , Conducta SexualRESUMEN
BACKGROUND: Demographic changes are leading to an ageing population in Europe. People are becoming more dependent on digital technologies and health ministries invest increasingly in digitalisation. Societal digital demands impact older people and learning to use new telehealth systems and digital devices are seen as a means of securing their needs. METHODS: The present study undertakes a scoping review in order to map relevant evidence about telehealth and digital developments in society involving citizens aged 75 and over in European countries. It focuses on their experiences and the main barriers to, and facilitators of, societal digital demands. A framework proposed by Arksey and O`Malley was used to guide the scoping review process. The studies included in the review covered telehealth, digital technology and digital devices, and the context covered participants` own home or surroundings. A comprehensive search on PubMed/MEDLINE, CINAHL, Scopus, Embase and Open Grey was undertaken. RESULTS: Out of 727 identified citations, 13 sources which met the inclusion criteria (9 original study articles, 2 theses, 1 letter about a product and 1 project report). Few of the studies identified have investigated European citizens 75 years and older separately. The studies included varied in their design, location and focus. Older people have experienced both telehealth and digital devices making life easier and the opposite. The outstanding facilitator found was that technology should be easy to use, and difficulty in remembering the instructions was seen as an important barrier. Interestingly, both social support and lack of social support were found as facilitators of using new devices. CONCLUSIONS: Telehealth may give a sense of security but learning to use a new device often takes extra effort. Older people were more open to new devices if the possible advantages of the new technology outweighed the effort that would be involved in adopting a new strategy. As technology develops rapidly, and life expectancy in Europe is anticipated to rise continually, there is a need for new and additional research among older European citizens. Future research should cover the technical solutions most relevant to older people today, social support and participants` access to the devices.
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Telemedicina , Anciano , Envejecimiento , Europa (Continente) , Humanos , Aprendizaje , TecnologíaRESUMEN
Despite substantial reorganisation of stroke unit provision in the United Kingdom, limited qualitative research has explored how stroke survivors experience the acute stroke unit. This hermeneutic phenomenological study used accounts from four stroke survivors who experienced one of two acute stroke units. Through detailed analysis, the acute stroke unit emerged as a meaningful space, in two distinct but interconnected forms. As holding space, the unit was understood to offer protection and safe haven, as the stroke survivors looked to cope and respond to the temporal, bodily, biographical disruption and significant vulnerability brought about by stroke and by being in hospital. Holding was fulfilled by different people (including their fellow stroke survivors) and reflected a human response to human need and existential vulnerability. This space, and the practices within it, functioned to hold them intimately but also at a distance from their prestroke lifeworld. As such, the acute stroke unit holding space was intertwined with how it supported, encouraged or provoked transition. In the transitional space of the acute stroke unit, stroke survivors described how they survived the hospital-healthcare space, stroke unit and poststroke space. This paper articulates how transition was meaningfully signified through its absence or presence, as they transformed, relinquished or re-asserted their 'self', and in one case, recovered whilst 'in there'. The findings of this study provide phenomenological insight into stroke survivors' lived experience, the meaningful holding and transitional contribution of the unit, and how these spatial forms were intertwined. These insights are discussed in relation to the existing evidence base and stroke unit provision.
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Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Adaptación Psicológica , Hermenéutica , Humanos , Investigación Cualitativa , SobrevivientesRESUMEN
Understanding people's experience of skin ageing as it is lived can enable sensitive approaches to promoting healthy skin and to care in general. By understanding the insider perspective, what it is like for individuals, a way to sensitise practice for more humanly sensitive care is offered. Through interviews with seventeen community-dwelling older people, the essential meaning of living within ageing skin was illuminated as a state of managed inevitability. The skin is inevitably changing, and ageing skin is a marker of change over time but the person within remains. Constituents of the phenomenon comprise the experience of unfamiliar sights and sensations given by ageing skin; facing and accepting bodily changes and seeing this back and forth in family connections; taking care of the skin "to face" the world; and to present oneself to others and a different place in the world, same person, changed body. Findings point to why and how nurses can treat older people as persons by not over emphasising a view on ageing bodies or bodies with aged skin alone, but in tempering this view with deeper existential insights, meeting the older person with a skin care need as a person and not just as a physical entity.
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Envejecimiento/psicología , Calidad de Vida/psicología , Adaptación Psicológica , Anciano , Anciano de 80 o más Años , Femenino , Humanos , MasculinoRESUMEN
There is limited consensus about what constitutes humanly sensitive care, or how it can be sustained in care settings. A new humanised care assessment tool may point to caring practices that are up to the task of meeting persons as humans within busy healthcare environments. This paper describes qualitative development of a tool that is conceptually sensitive to human dimensions of care informed by a life-world philosophical orientation. Items were generated to reflect eight theoretical dimensions that constitute what makes care feel humanly focused. An action research group process in 2014-2015 with researchers, service users, healthcare professionals in two diverse clinical settings (stroke rehabilitation and dermatology) was used. Feedback on conceptual content, transparency of meaning and readability was then gained from a panel in Sweden and third-year student nurses in the UK. The tool can be applied to attune staff to human dimensions of care, offering items which point to concrete examples of humanising and dehumanising features of practice in ways that have not yet been fully captured in the caring literature. Based on theoretically led experiential items, with dedicated focus on what makes people feel more, or less than human, it may offer improvement on available assessments of care.
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Atención a la Salud/normas , Empatía , Evaluación en Enfermería/métodos , Atención a la Salud/tendencias , Humanos , Evaluación en Enfermería/normas , Atención Dirigida al Paciente/métodos , Estudiantes de Enfermería/psicología , Encuestas y Cuestionarios , SueciaRESUMEN
BACKGROUND: Fatigue is one of the most common and debilitating symptoms of multiple sclerosis (MS). The aim was to evaluate the effectiveness at 1-year follow-up of a manualised group-based programme ('FACETS') for managing MS-fatigue. METHODS: One-year follow-up of a pragmatic multi-centre randomised controlled trial. People with MS and significant fatigue were randomised to FACETS plus current local practice (FACETS) or current local practice alone (CLP), using concealed computer-generated randomisation. Participant blinding was not possible. Primary outcome measures were fatigue severity (Global Fatigue Severity subscale of the Fatigue Assessment Instrument), self-efficacy (MS-Fatigue Self-Efficacy) and disease-specific quality of life (MS Impact Scale). RESULTS: Between May 2008 and November 2009, 164 participants were randomised. Primary outcome data were available at 1 year for 131 (80%). The benefits demonstrated at 4-months in the FACETS arm for fatigue severity and self-efficacy largely persisted, with a slight reduction in standardised effect sizes (SES) (-0.29, p = 0.06 and 0.34, p = 0.09, respectively). There was a significant difference on the MS Impact Scale favouring FACETS that had not been present at 4-months (SES -0.24, p = 0.046). No adverse events were reported. CONCLUSIONS: Improvements in fatigue severity and self-efficacy at 4-months follow-up following attendance of FACETS were mostly sustained at 1 year with additional improvements in MS impact. The FACETS programme provides modest long-term benefits to people with MS-fatigue. TRIAL REGISTRATION: ISRCTN76517470.
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Fatiga/terapia , Esclerosis Múltiple/terapia , Adulto , Anciano , Terapia Cognitivo-Conductual/métodos , Fatiga/etiología , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/complicaciones , Calidad de Vida , Años de Vida Ajustados por Calidad de Vida , Autocuidado , Autoeficacia , Resultado del Tratamiento , Adulto JovenRESUMEN
BACKGROUND: Fatigue is a common and troubling symptom for people with multiple sclerosis (MS). AIM: To evaluate the effectiveness and cost-effectiveness of a six-session group-based programme for managing MS-fatigue (Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to lifeStyle (FACETS)). METHODS: Three-centre parallel arm randomised controlled trial with economic evaluation. Patients with MS and significant fatigue were randomised to FACETS plus current local practice (FACETS) or current local practice alone (CLP), using concealed computer-generated randomisation. Participant blinding was not possible. Primary outcomes were fatigue severity (Fatigue Assessment Instrument), self-efficacy (Multiple Sclerosis-Fatigue Self-Efficacy) and disease-specific quality of life (Multiple Sclerosis Impact Scale (MSIS-29)) at 1 and 4 months postintervention (follow-up 1 and 2). Quality adjusted life years (QALYs) were calculated (EuroQoL 5-Dimensions questionnaire and the Short-form 6-Dimensions questionnaire). RESULTS: Between May 2008 and November 2009, 164 patients were randomised; primary outcome data were available for 146 (89%). Statistically significant differences favour the intervention group on fatigue self-efficacy at follow-up 1 (mean difference (MD) 9, 95% CI (4 to 14), standardised effect size (SES) 0.54, p=0.001) and follow-up 2 (MD 6, 95% CI (0 to 12), SES 0.36, p=0.05) and fatigue severity at follow-up 2 (MD -0.36, 95% CI (-0.63 to -0.08), SES -0.35, p=0.01) but no differences for MSIS-29 or QALYs. No adverse events reported. Estimated cost per person for FACETS is £453; findings suggest an incremental cost-effectiveness ratio of £2157 per additional person with a clinically significant improvement in fatigue. CONCLUSIONS: FACETS is effective in reducing fatigue severity and increasing fatigue self-efficacy. However, it is difficult to assess the additional cost in terms of cost-effectiveness (ie, cost per QALY) as improvements in fatigue are not reflected in the QALY outcomes, with no significant differences between FACETS and CLP. The strengths of this trial are its pragmatic nature and high external validity. TRIAL REGISTRATION: Current Controlled Trials ISRCTN76517470.
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Terapia Cognitivo-Conductual/economía , Terapia Cognitivo-Conductual/métodos , Fatiga/economía , Fatiga/rehabilitación , Estilo de Vida , Esclerosis Múltiple Crónica Progresiva/economía , Esclerosis Múltiple Crónica Progresiva/rehabilitación , Esclerosis Múltiple Recurrente-Remitente/economía , Esclerosis Múltiple Recurrente-Remitente/rehabilitación , Psicoterapia de Grupo/economía , Psicoterapia de Grupo/métodos , Adulto , Anciano , Terapia Combinada , Análisis Costo-Beneficio , Evaluación de la Discapacidad , Fatiga/diagnóstico , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Esclerosis Múltiple Crónica Progresiva/diagnóstico , Esclerosis Múltiple Recurrente-Remitente/diagnóstico , Calidad de Vida , Años de Vida Ajustados por Calidad de Vida , Autoeficacia , Medicina Estatal/economía , Encuestas y CuestionariosRESUMEN
AIMS AND OBJECTIVES: To demonstrate the usefulness of a theoretical framework for humanising care of dementia patients. BACKGROUND: The term humanisation of care has been increasingly used to describe an approach to health care that is informed by core dimensions of what it means to be human. Recent developments in dementia care highlight the importance of maintaining personhood in people with dementia. DESIGN: A conceptual framework is proposed by which the humanisation of care can be understood and applied. Eight dimensions that articulate core features of what needs to be attended to in order for a person to feel more deeply 'met' as a human being are discussed. Evidence from an evaluative study of a dementia outreach service is used to illustrate the usefulness of the humanising framework. METHODS: Case study examples demonstrate the value of this framework by describing how a dementia outreach service enables care staff in residential aged care facilities to change their focus in the provision of care to residents with dementia. Each of the eight dimensions of humanisation/dehumanisation is used to illustrate how the dementia outreach service team have led to the improvements in resident care. RESULTS: Positive outcomes can be achieved by providing humanised care to residents with dementia. CONCLUSION: The paper highlights the potential for the humanising framework to be used in dementia care and shows how the framework can be helpfully translated into practice so that carers are supported to adopt an inclusive view of care delivery. RELEVANCE TO CLINICAL PRACTICE: A comprehensive framework, grounded in a strong philosophical foundation, can name a breadth of criteria for humanly sensitive care and can be translated into practice in such a way as to potentially transform the provision of care to residents in residential aged care facilities.
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Hogares para Ancianos/organización & administración , Relaciones Enfermero-Paciente , Australia , Demencia/enfermería , Hogares para Ancianos/normas , HumanosRESUMEN
AIM: This paper introduces the notion of 'Caring science' as a way to delineate and develop particular kinds of knowledge relevant to caring practices in critical care. RELEVANCE FOR PRACTICE: Firstly, one particular development of person centred care, lifeworld led care is offered. Its relevance for critical care nursing is analysed by pointing to examples of studies which describe temporality, spatiality, intersubjectivity and embodiment and how they may manifest with reference to the person as 'body object/body subject' and the matter of technology in critical care environments. Secondly, by use of an imagined practice scenario, the challenge of expanding our traditional notions of evidence to encompass ways of knowing that are more intimately embodied and practice related is discussed. Such knowledge, referred to as 'embodied relational understanding' is particularly relevant to a conception of caring for persons' in a holistic way. CONCLUSION: The paper concludes by pointing to the potential for caring science, grounded in lifeworld led care, to offer some integrating ideas that legitimate the full range of resources, 'head', 'hand' and 'heart', that nurses can draw upon in everyday holistic critical care practice.
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Cuidados Críticos , Empatía , Relaciones Enfermero-Paciente , Atención de Enfermería , Humanos , Teoría de EnfermeríaRESUMEN
Purpose: Using a theory-led action research process test applicability of humanizing care theory to better understand what matters to people and assess how the process can improve human dimensions of health care services. Consideration of the value of this process to guide enhancements in humanly sensitive care and investigate transferable benefits of the participatory strategy for improving human dimensions of health care services. Methods: Action research with service users, practitioners and academics, with participatory processes led through the application of theory via a novel Humanizing Care Framework in two diverse clinical settings. Results: Participants engaged in a theory-led participatory process, understood and valued the framework seeing how it relates to own experiences. Comparative analysis of settings identified transferable processes with potential to enhance human dimensions of care more generally. We offer transferable strategy with contextualized practical details of humanizing processes and outcomes that can contribute to portable pathways to enhance dignity in care through application of humanizing care theory in practice. Conclusion: The theoretical framework is a feasible and effective guide to enhance human dimensions of care. Our rigorous participative process facilitates sharing of patient and staff experience, sensitizing practitioners' understandings and helping develop new ways of providing theoretically robust person-centred care based on lifeworld approaches.
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Servicios de Salud para Ancianos/organización & administración , Atención Dirigida al Paciente/organización & administración , Mejoramiento de la Calidad/organización & administración , Respeto , Anciano , Anciano de 80 o más Años , Investigación sobre Servicios de Salud , Servicios de Salud para Ancianos/normas , HumanosRESUMEN
This hermeneutic phenomenological study was undertaken in response to the recent re-organization of stroke unit provision in the United Kingdom. Through the analysis of four acute stroke unit practitioners' subjective accounts, the acute stroke unit emerged as a dynamic, meaningful space, where they experienced authenticity and belonging. The findings showed how these practitioners navigated their way through the space, thriving, and/or surviving its' associated vulnerabilities. They offer a different gaze on which to attend to the complexity and challenge that is interwoven with health professionals' flourishing, the spatiality of healthcare practice, and perhaps other demanding places of work.
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Personal de Salud/psicología , Accidente Cerebrovascular/terapia , Lugar de Trabajo/psicología , Hermenéutica , Humanos , Investigación Cualitativa , Reino UnidoRESUMEN
INTRODUCTION: People often experience distress following stroke due to fundamental challenges to their identity. OBJECTIVES: To evaluate (1) the acceptability of 'HeART of Stroke' (HoS), a community-based arts and health group intervention, to increase psychological well-being; and (2) the feasibility of a definitive randomised controlled trial (RCT). DESIGN: Two-centre, 24-month, parallel-arm RCT with qualitative and economic components. Randomisation was stratified by centre and stroke severity. Participant blinding was not possible. Outcome assessment blinding was attempted. SETTING: Community. PARTICIPANTS: Community-dwelling adults ≤2 years poststroke recruited via hospital clinical teams/databases or community stroke/rehabilitation teams. INTERVENTIONS: Artist-facilitated arts and health group intervention (HoS) (ten 2-hour sessions over 14 weeks) plus usual care (UC) versus UC. OUTCOMES: The outcomes were self-reported measures of well-being, mood, capability, health-related quality of life, self-esteem and self-concept (baseline and 5 months postrandomisation). Key feasibility parameters were gathered, data collection methods were piloted, and participant interviews (n=24) explored the acceptability of the intervention and study processes. RESULTS: Despite a low recruitment rate (14%; 95% CI 11% to 18%), 88% of the recruitment target was met, with 29 participants randomised to HoS and 27 to UC (57% male; mean (SD) age=70 (12.1) years; time since stroke=9 (6.1) months). Follow-up data were available for 47 of 56 (84%; 95% CI 72% to 91%). Completion rates for a study-specific resource use questionnaire were 79% and 68% (National Health Service and societal perspectives). Five people declined HoS postrandomisation; of the remaining 24 who attended, 83% attended ≥6 sessions. Preliminary effect sizes for candidate primary outcomes were in the direction of benefit for the HoS arm. Participants found study processes acceptable. The intervention cost an estimated £456 per person and was well-received (no intervention-related serious adverse events were reported). CONCLUSIONS: Findings from this first community-based study of an arts and health intervention for people poststroke suggest a definitive RCT is feasible. Recruitment methods will be revised. TRIAL REGISTRATION NUMBER: ISRCTN99728983.
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Arteterapia/métodos , Calidad de Vida , Autoimagen , Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular/psicología , Actividades Cotidianas , Análisis Costo-Beneficio , Atención a la Salud , Estudios de Factibilidad , Femenino , Humanos , Vida Independiente/psicología , Masculino , Medición de Resultados Informados por el Paciente , Sistemas de Apoyo Psicosocial , Accidente Cerebrovascular/economía , Rehabilitación de Accidente Cerebrovascular/métodos , Rehabilitación de Accidente Cerebrovascular/psicologíaRESUMEN
A range of literature has explored the experience of living with a long-term condition (LTC), and frequently treats such experiences and conditions as problematic. In contrast, other research has demonstrated that it may be possible to adapt and achieve well-being, even when living with such a condition. This tends to focus on meaning and the qualitative experience of living with an LTC, and offers alternative perspectives, often of the same or similar conditions. As a result of these conflicting views, this study chose to consider two conditions which, though they may lead to life-threatening illness on occasion, do not appear to impact significantly the lives of all those affected on a daily basis. The aim of this research was to explore and explain how people make sense of two long-term, potentially life-threatening health conditions, namely, thrombophilia and asthma. In doing so, it specifically considered the contribution made by information about the condition. A constructivist grounded theory approach was adopted; this enabled the generation of a theory regarding how people make sense of their LTC, whilst acknowledging the social circumstances in which this was situated. Semi-structured interviews were conducted with 16 participants who had given consent to take part in the research. The findings demonstrate that participants undergo a two-stage process-gaining knowledge and living with a long-term condition. The theory based on these findings indicates that those who are knowledgeable about their condition, making informed decisions in relation to it, and accept their condition are able to live with it, whilst those who do not accept their condition do not fully adapt to it or integrate it into their lives.
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Actividades Cotidianas , Adaptación Psicológica , Asma/psicología , Enfermedad Crónica/psicología , Conocimientos, Actitudes y Práctica en Salud , Calidad de Vida , Trombofilia/psicología , Adulto , Anciano , Femenino , Teoría Fundamentada , Humanos , Aprendizaje , Masculino , Salud Mental , Persona de Mediana Edad , Investigación CualitativaRESUMEN
INTRODUCTION: Over 152,000 people in the UK have strokes annually and a third experience residual disability. Low mood also affects a third of stroke survivors; yet psychological support is poor. While Arts for Health interventions have been shown to improve well-being in people with mild-to-moderate depression post-stroke, their role in helping people regain sense of self, well-being and confidence has yet to be evaluated. The main aim of this study is to explore the feasibility of conducting a pragmatic multicentre randomised controlled trial to assess the effectiveness and cost-effectiveness of an Arts for Health group intervention ('HeART of Stroke' (HoS)) for stroke survivors. HoS is a 10-session artist-facilitated group intervention held in the community over 14 weeks. It offers a non-judgemental, supportive environment for people to explore sense of self, potentially enhancing well-being and confidence. METHODS AND ANALYSIS: Sixty-four people, up to 2 years post-stroke, recruited via secondary care research staff or community stroke/rehabilitation teams in two UK centres will be randomised to either HoS plus usual care or usual care only. Self-reported outcomes, measured at baseline and approximately 5 months postrandomisation, will include stroke-related, well-being, mood, self-esteem, quality of life and process measures. Analyses will focus on estimating key feasibility parameters (eg, rates of recruitment, retention, intervention attendance). We will develop outcome and resource use data collection methods to inform an effectiveness and cost-effectiveness analysis in the future trial. Interviews, with a sample of participants, will explore the acceptability of the intervention and study processes, as well as experiences of the HoS group. ETHICS AND DISSEMINATION: National Health Service (NHS), Research and Development and University ethical approvals have been obtained. Two peer-reviewed journal publications are planned plus one service user led publication. Findings will be disseminated at key national conferences, local stakeholder events and via institutional websites. TRIAL REGISTRATION NUMBER: ISRCTN99728983.
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Arteterapia , Autoimagen , Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular/psicología , Actividades Cotidianas , Afecto , Arteterapia/economía , Análisis Costo-Beneficio , Estudios de Factibilidad , Humanos , Calidad de Vida , Reino UnidoRESUMEN
Understanding the "insider" perspective has been a pivotal strength of qualitative research. Further than this, within the more applied fields in which the human activity of "caring" takes place, such understanding of "what it is like" for people from within their lifeworlds has also been acknowledged as the foundational starting point in order for "care" to be caring. But we believe that more attention needs to be paid to this foundational generic phenomenon: what it means to understand the "insiderness" of another, but more importantly, how to act on this in caring ways. We call this human phenomenon "caring for insiderness." Drawing on existing phenomenological studies of marginal caring situations at the limits of caring capability, and through a process of phenomenologically oriented reflection, we interrogated some existential themes implicit in these publications that could lead to deeper insights for both theoretical and applied purposes. The paper provides direction for practices of caring by highlighting some dangers as well as some remedies along this path.
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Actitud del Personal de Salud , Empatía/fisiología , Relaciones Profesional-Paciente , Investigación Cualitativa , Humanos , Filosofía Médica , Guías de Práctica Clínica como AsuntoRESUMEN
We are interested in the kind of knowledge that is particularly relevant to caring practice and the way in which qualitative research findings can serve such knowledge. As phenomenological researchers we have been engaged with the question of how findings from such research can be re-presented and expressed more aesthetically. Such a movement towards a more aesthetic phenomenology may serve the communicative concern to express phenomena relevant to caring practice in ways that appeal to the 'head, hand and heart'. The paper first offers some thoughts about the complex kind of knowledge relevant to caring that is not only technical or propositional, but actionable and aesthetically moving as well. We call this kind of knowledge 'embodied relational understanding'. Further, the paper outlines the development of one way of serving a more aesthetic phenomenology whereby research findings can be faithfully and evocatively translated into more empathically impactful expressions. We call this process 'embodied interpretation'. It is guided by an epistemological framework grounded in the philosophies of Gadamer and Gendlin. We finally illustrate the process with reference to the experience of living after Stroke, and consider the value of this translational process for nursing education and practice.