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1.
BMC Health Serv Res ; 20(1): 503, 2020 Jun 04.
Artigo em Inglês | MEDLINE | ID: mdl-32498684

RESUMO

BACKGROUND: More people living into old age with dementia. The complexity of treatment and care, particularly those with multiple health problems, can be experienced as disjointed. As part of an evaluation of a 'healthcare passport' for people living with dementia we undertook a realist review of communication tools within health and social care for people living with dementia. AIMS: To explore how a 'healthcare passport' might work in the 'real world' of people living with dementia through a better understanding of the theoretical issues related to, and the contextual issues that facilitate, successful communication. METHODS: A realist review was considered the most appropriate methodology to inform the further development and evaluation of the healthcare passport. We undertook a purposive literature search related to communication tools to identify (a) underlying programme theories; (b) published reports and papers on their use in various healthcare settings; (c) evidence on barriers and facliitators of their use. RESULTS: Communication tools were noted as a way of improving communication and outcomes through: (1) improvement of service user autonomy; (2) strengthening the therapeutic alliance; and (3) building integrated care. However, while intuitively perceived to of benefit, evidence on their use is limited and key barriers to their acceptance and use include: (1) difficulties in clearly defining purpose, content, ownership and usage; (2) understanding the role of family caregivers; and (3) preparation among healthcare professionsals. CONCLUSION: Patient-held communication tools may be helpful to some people living with dementia but will require considerable preparation and engagement with key stakeholders.


Assuntos
Comunicação , Demência/terapia , Acessibilidade aos Serviços de Saúde , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Relações Profissional-Paciente , Atenção à Saúde , Humanos , Apoio Social
2.
BMC Palliat Care ; 18(1): 39, 2019 Apr 26.
Artigo em Inglês | MEDLINE | ID: mdl-31027498

RESUMO

BACKGROUND: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care. METHODS: Qualitative study involving a convenience sample of 13 bereaved carers recruited using the Northern Ireland MND Register. Data collection consisted of semi-structured interviews with the bereaved carers of patients who had died 3-24 months previously with a diagnosis of MND. Data were analysed using thematic analysis. RESULTS: Findings illuminated variations in relation to the levels of holistic care provided to this cohort of patients. Unmanaged respiratory and psychological symptoms caused perceived distress amongst patients. Participants' experiences additionally highlighted reluctance amongst patients with MND to engage with services such as specialist palliative care. Conversely, for those who received input from specialist palliative care services carers portrayed these services to be of great benefit to the patient. CONCLUSIONS: Patients with MND in Northern Ireland may have many unmet holistic care needs. Key areas that require particular focus in terms of service development include neuromuscular respiratory physiotherapy and psychological services for patients. Future research must explore an optimal model of holistic care delivery for patients with MND and how this can be effectively integrated to best meet this patient cohorts palliative care needs.


Assuntos
Cuidadores/psicologia , Cuidados Paliativos na Terminalidade da Vida/métodos , Doença dos Neurônios Motores/complicações , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Doença dos Neurônios Motores/psicologia , Irlanda do Norte , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Pesquisa Qualitativa
3.
Int J Geriatr Psychiatry ; 33(10): 1346-1354, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-29961948

RESUMO

BACKGROUND: Observational pain tools (OPTs) are widely recommended in health care policies, clinical guidelines, and recommendations for pain assessment and management. However, it is unclear whether and how these tools are used for patients with advanced dementia approaching the end of life. AIM: To explore hospice, secondary, and primary care physicians' and nurses' use of OPTs with patients dying with advanced dementia and their perspectives on practice development and training needs. METHODS: Twenty-three physicians and 24 nurses with experience of caring for people dying with advanced dementia were recruited from primary care surgeries (n = 5), hospitals (n = 6), hospices (n = 4), and nursing homes (n = 10). Semistructured, face-to-face interviews were conducted. Interviews were digitally recorded, transcribed verbatim, and thematic analysis applied to identify core themes. RESULTS: Three key themes emerged: (1) use of OPTs in this vulnerable patient population, (2) barriers to the use of OPTs and lack of perceived "added value", and (3) perspectives on practice development and training in pain assessment in advanced dementia at end of life. Just over one-quarter of participants (n = 13) routinely used OPTs. Reasons for nonuse included perceived limitations of such tools, difficulties with their use and integration with existing practice, and lack of perceived added value. Most participants strongly emphasised a need for ongoing training and development which facilitated transfer of knowledge and multidisciplinary skills across professions and specialties. CONCLUSIONS: Health professionals require ongoing support in developing and integrating change to existing pain assessment protocols and approaches. These findings have important implications for health education, practice, and policy.


Assuntos
Atitude do Pessoal de Saúde , Demência/complicações , Medição da Dor/métodos , Dor/diagnóstico , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Adulto , Competência Clínica , Feminino , Pessoal de Saúde/educação , Hospitais/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Casas de Saúde/estatística & dados numéricos , Manejo da Dor/métodos , Pesquisa Qualitativa , Adulto Jovem
4.
Palliat Med ; 32(2): 571-580, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-28604265

RESUMO

BACKGROUND: Education has been highlighted as fundamental in equipping healthcare professionals with essential knowledge and skills to provide good end-of-life care. Multiprofessional educational programmes have a positive influence on knowledge, attitude and confidence but few have sought to understand the longer term impact on care delivery. The European Certificate in Essential Palliative Care is an 8-week home-study-based programme for healthcare professionals and is currently run in nine centres. Successful candidates have undertaken the course from their own countries around the world. This article describes the evaluation of the European Certificate in Essential Palliative Care which has been evolving over 15 years. AIMS: To evaluate the impact an educational intervention has on participants' confidence in palliative care, to determine whether this is sustained over time and explore participants' perception of the influence of the course on confidence. DESIGN: A mixed-method longitudinal approach. SETTING/PARTICIPANTS: A survey using a self-efficacy scale was emailed to 342 candidates who received an educational intervention and semi-structured interviews to a sub-sample of 15 candidates at baseline, 3 and 6 months. RESULTS: At 3 months, candidates had almost 20 times higher odds of being above any given level of confidence than at baseline which was sustained at 6 months. Qualitative analysis identified examples of increased competence and confidence improving palliative care delivery. CONCLUSION: Findings suggest that the European Certificate in Essential Palliative Care improves confidence in palliative care and that this is sustained over time with evidence of confidence in symptom control, communication and a holistic approach in clinical practice.


Assuntos
Pessoal de Saúde/educação , Cuidados Paliativos , Autoeficácia , Assistência Terminal , Adulto , Feminino , Humanos , Entrevistas como Assunto , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Inquéritos e Questionários
5.
Palliat Med ; 32(5): 930-938, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29431016

RESUMO

BACKGROUND: Constipation is an important issue for patients receiving palliative care within specialist palliative care settings. Questions and ambiguity, however, persist about international best practice and management. AIM: To synthesise the current evidence base on the assessment and management of constipation for palliative care patients within a specialist palliative care setting. DESIGN: This is a systematic review. DATA SOURCES: MEDLINE, Embase, CINAHL, Scopus and Cochrane databases were systematically searched in April 2017 for empirical studies, written in English, on the assessment and management of constipation in specialist palliative care settings, published between 2007 and 2017. Two researchers independently reviewed and critically appraised all studies, conducted data extraction, and undertook a thematic analysis. RESULTS: In total, 13 studies were included in the review comprising randomised trials ( n = 3), observational ( n = 4) and descriptive studies ( n = 6). Most research was conducted in specialist palliative care units, targeting either healthcare professionals or patients. The analysis highlighted a lack of standard definition of constipation, raising questions on the existence and comparability of baseline prevalence figures, the physical and psychological impact on patients, resource impact on staff and service, the subjective and objective methods of assessing constipation, and key aspects of constipation management, including a lack of focus on non-pharmacological management in this setting. CONCLUSION: The results of this review are being used to inform the development of an educational intervention targeting healthcare professionals. Gaps in the evidence base include lack of consistent definition of constipation, constipation prevention, non-pharmacological management, and the consideration of the management of constipation for the dying patient.


Assuntos
Constipação Intestinal/terapia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Administração dos Cuidados ao Paciente , Humanos
6.
BMC Health Serv Res ; 18(1): 228, 2018 04 02.
Artigo em Inglês | MEDLINE | ID: mdl-29606132

RESUMO

BACKGROUND: Pain assessment and management in advanced and end-stage dementia are challenging; patients are at risk of under-diagnosis, under-assessment and under-treatment. Previous research has highlighted the importance of needs-driven training and development in this area for physicians, nurses and healthcare assistants (HCAs) across specialties, disciplines and care settings. This study used teleconferencing technology to connect healthcare professionals across multiple settings and disciplines in real-time clinics, based on the Project ECHO© model. This paper reports the evaluation of the clinics by physicians, nurses and HCAs, including their knowledge and self-efficacy in pain assessment and management for patients with advanced and end-stage dementia. METHODS: A mixed method evaluation comprising quantitative survey of self-reported knowledge and self-efficacy pre- and post-ECHO clinic participation, and qualitative exploration of experiences of the clinics using focus group interviews. A census approach to sampling was undertaken. Pre- and post-ECHO evaluations were administered electronically using Survey Monkey software. Mann-Whitney U tests were used to explore differences in knowledge and self-efficacy scores pre- and post-ECHO clinic participation. Statistical significance was set a-priori at p = 0.05. Focus groups were video- and audio-recorded, transcribed verbatim and analysed using Braun & Clarke's model of thematic analysis. RESULTS: Eighteen healthcare professionals [HCPs] (physicians [n = 7], nurses [n = 10], HCA [n = 1]) and twenty HCPs (physicians [n = 10], nurses [n = 10]) completed pre- and post-ECHO evaluations respectively, reporting improvements in knowledge and self-efficacy on participation in ECHO clinics and perceived utility of the clinics. Seven HCPs (physicians [n = 2], nurses [n = 5]) participated in two focus groups. Four themes emerged: knowledge and skills development and dissemination; protected time; areas for improvement; and the future of ECHO. CONCLUSIONS: Telementoring clinics for HCP education and training in pain assessment and management in advanced and end-stage dementia demonstrate a positive impact on knowledge and self-efficacy of HCPs and highlight the value of a cross-specialty network of practice which spans across disciplines/HCP types, care settings and geographical areas. Further development of ECHO services in this and in other clinical areas, shows significant potential to support delivery of high-quality care to complex patient populations.


Assuntos
Demência/complicações , Educação a Distância/métodos , Pessoal de Saúde/educação , Tutoria/métodos , Dor/prevenção & controle , Pessoal Técnico de Saúde/educação , Assistência Ambulatorial/normas , Atenção à Saúde/normas , Educação Médica/métodos , Educação em Enfermagem/métodos , Grupos Focais , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Manejo da Dor/normas , Medição da Dor/normas , Médicos/normas , Autoeficácia , Autorrelato , Inquéritos e Questionários , Assistência Terminal/métodos
7.
Indian J Palliat Care ; 24(2): 150-155, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29736116

RESUMO

INTRODUCTION: Nepal is beginning to develop palliative care services across the country. Most people live in rural areas, where the Mid-Level Health Workers (MHWs) are the major service providers. Their views on providing palliative care are most important in determining how the service is organized and developed. AIM: This study aims to ascertain the perceptions of MHWs about palliative care in their local community, to inform service development. METHODS: A qualitative descriptive design, using focus group discussions, was used to collect data from a rural district of Makwanpur, 1 of the 75 districts of Nepal. Twenty-eight MHWs participated in four focus group discussions. The data were analyzed using content analysis. RESULT: Four themes emerged from the discussion: (i) suffering of patients and families inflicted by life-threatening illness, (ii) helplessness and frustration felt when caring for such patients, (iii) sociocultural issues at the end of life, and (iv) improving care for patients with palliative care needs. CONCLUSION: MHWs practicing in rural areas reported the suffering of patients inflicted with life-limiting illness and their family due to poverty, poor access, lack of resources, social discrimination, and lack of knowledge and skills of the health workers. While there are clear frustrations with the limited resources, there is a willingness to learn among the health workers and provide care in the community.

8.
Palliat Med ; 31(8): 734-742, 2017 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-28659013

RESUMO

BACKGROUND: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown. AIM: To explore physicians' experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges. DESIGN: Qualitative, semi-structured interview study exploring barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes. SETTING/PARTICIPANTS: A total of 23 physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care ( n = 9), psychiatry ( n = 7) and hospice care ( n = 7). RESULTS: Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialities. Cross-speciality mentoring and the creation of knowledge networks were believed to improve pain management in this patient population. CONCLUSION: Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients' families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.


Assuntos
Atitude do Pessoal de Saúde , Demência/tratamento farmacológico , Demência/patologia , Manejo da Dor , Médicos/psicologia , Assistência Terminal , Adulto , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Pesquisa Qualitativa
9.
BMC Palliat Care ; 16(1): 6, 2017 Jan 19.
Artigo em Inglês | MEDLINE | ID: mdl-28103847

RESUMO

BACKGROUND: Pain assessment and management are key aspects in the care of people with dementia approaching the end of life but become challenging when patient self-report is impaired or unavailable. Best practice recommends the use of observational pain assessments for these patients; however, difficulties have been documented with health professionals' use of these tools in the absence of additional collateral patient knowledge. No studies have explored the role, perspectives and experiences of healthcare assistants in pain assessment and management in dementia; this study provides insight into this important area. METHODS: A qualitative approach was adopted, using key informant interviews with healthcare assistants caring for people with advanced dementia approaching the end of life in hospice, nursing home and acute care settings. Thematic analysis was the analytic approach taken to interpretation of interview data. Data were collected between June 2014 and September 2015. RESULTS: Fourteen participants took part in the study. Participants' average length of caring experience was 15.4 years and most were female. Three key themes emerged: recognising pain, reporting pain, and upskilling. Participants were often the first to notice obvious causes of pain and to detect changes in patient norms which signified hidden causes of pain. Comprehensive knowledge of resident norms enabled participants to observe for behavioural and nonverbal indicators of pain and distinguish these from non-pain related behaviours. Pain reporting was heavily impacted by relationships with professional staff and the extent to which participants felt valued in their role. Positive relationships resulted in comprehensive pain reports; negative relationships led to perfunctory or ambiguous reporting. Participants emphasised a desire for further training and upskilling, including in the use and reporting of basic pain tools. CONCLUSIONS: Healthcare assistants are frontline staff who have a key role in direct patient care, spending a considerable amount of time with patients in comparison to other health professionals. These staff are often first to notice changes in patients that may signify pain and to alert professional staff. However, to ensure the quality of these reports, further efforts must be made in reversing stigma attached to this role and in upskilling these members of the healthcare team.


Assuntos
Pessoal Técnico de Saúde/normas , Demência/terapia , Dor/prevenção & controle , Assistência Terminal/normas , Adulto , Pessoal Técnico de Saúde/educação , Técnicas de Observação do Comportamento , Feminino , Humanos , Capacitação em Serviço , Masculino , Pessoa de Meia-Idade , Irlanda do Norte , Medição da Dor/métodos , Medição da Dor/normas , Papel Profissional , Relações Profissional-Paciente , Adulto Jovem
10.
J Clin Nurs ; 26(9-10): 1234-1244, 2017 May.
Artigo em Inglês | MEDLINE | ID: mdl-27324751

RESUMO

AIMS AND OBJECTIVES: To explore hospice, acute care and nursing home nurses' experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support. BACKGROUND: Pain management in end-stage dementia is a fundamental aspect of end-of-life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care. DESIGN: A qualitative study using semi-structured interviews and thematic analysis to examine data. METHODS: Twenty-four registered nurses caring for people dying with advanced dementia were recruited from 10 nursing homes, three hospices and two acute hospitals across a region of the UK. Interviews were conducted between June 2014-September 2015. RESULTS: Three core themes were identified: challenges administering analgesia, the nurse-physician relationship, and interactive learning and practice development. Patient-related challenges to pain management were universal across care settings; nurse- and organisation-related barriers differed between settings. A need for interactive learning and practice development, particularly in pharmacology, was identified. CONCLUSIONS: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required. RELEVANCE TO CLINICAL PRACTICE: Nurses considered pain management fundamental to end-of-life care provision; however, nurses working in acute care and nursing home settings may be undersupported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology.


Assuntos
Demência/enfermagem , Relações Enfermeiro-Paciente , Manejo da Dor/enfermagem , Medição da Dor/enfermagem , Cuidados Paliativos/métodos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Casas de Saúde , Relações Médico-Enfermeiro , Pesquisa Qualitativa , Assistência Terminal
11.
BMC Health Serv Res ; 16(a): 363, 2016 08 09.
Artigo em Inglês | MEDLINE | ID: mdl-27507250

RESUMO

BACKGROUND: There is an urgent need for the development of simple communication tools that convey the strengths, assets, and healthcare needs of people living with dementia. A Healthcare Passport may improve communication with range of health and social support services, enhancing quality and continuity of care, and to permit a consideration of the challenges and how these might be managed effectively and compassionately. This study aims to evaluate the acceptability and use of this type of intervention for people living with dementia and their carers. METHODS/DESIGN: This is a qualitative longitudinal study informed by a critical realist review. The participants will be individuals identified as having mild-moderate dementia and informal carers. The in-depth interviews will occur at three points over the course of 18 months as they use the passport. This will be supplemented by analysis of the content of the passports and information from health and social care providers on the daily practicalities of using the passport in a range of healthcare settings. DISCUSSION: By using a critical realist review and a qualitative, longitudinal approach, the study allows for the assessment of a complex intervention in a manner which goes beyond evaluating the basic efficacy of the passport, but looking more deeply at how it worked, for whom, and in what context. It has the potential to develop new data on how interventions improve communication across a range of service providers, while encouraging health and social care professionals to respect and encourage the development of self-management and retention of personhood throughout the progression of life-limiting illnesses.


Assuntos
Continuidade da Assistência ao Paciente/organização & administração , Demência/psicologia , Melhoria de Qualidade/organização & administração , Comunicação , Demência/terapia , Empatia , Feminino , Humanos , Estudos Longitudinais , Masculino , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa , Qualidade de Vida , Projetos de Pesquisa , Apoio Social , Reino Unido
12.
BMC Palliat Care ; 14: 14, 2015 Apr 23.
Artigo em Inglês | MEDLINE | ID: mdl-25904016

RESUMO

BACKGROUND: Advance care planning (ACP) facilitates communication and understanding of preferences, nevertheless the use of ACPs in primary care is low. The uncertain course of dementia and the inability to communicate with the patient living with dementia are significant challenges for GPs to initiate discussions on goals of care. METHODS: A cross-sectional survey, using a purposive, cluster sample of GPs across Northern Ireland with registered dementia patients was used. GPs at selected practices received the survey instrument and up to four mail contacts was implemented. RESULTS: One hundred and thirty-three GPs (40.6%) participated in the survey, representing 60.9% of surveyed practices. While most respondents regarded dementia as a terminal disease (96.2%) only 37.6% felt that palliative care applied equally from the time of diagnosis to severe dementia. While most respondents thought that early discussions would facilitate decision-making during advanced dementia (61%), respondents were divided on whether ACP should be initiated at the time of diagnoses. While most respondents felt that GPs should take the initiative to introduce and encourage ACP, most survey participants acknowledged the need for improved knowledge to involve families in caring for patients with dementia at the end of life and that a standard format for ACP documentation was needed. CONCLUSION: Optimal timing of ACP discussions should be determined by the readiness of the patient and family carer to face end of life. ACP discussions can be enhanced by educational strategies directed towards the patient and family carer that enable shared decision-making with their GP when considering options in future care.


Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Demência/psicologia , Clínicos Gerais/organização & administração , Clínicos Gerais/psicologia , Percepção , Adulto , Cuidadores/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Irlanda do Norte , Cuidados Paliativos/psicologia , Relações Médico-Paciente
13.
BMC Palliat Care ; 14: 65, 2015 Nov 24.
Artigo em Inglês | MEDLINE | ID: mdl-26603516

RESUMO

BACKGROUND: For most people, home is the preferred place of care and death. Despite the development of specialist palliative care and primary care models of community based service delivery, people who are dying, and their families/carers, can experience isolation, feel excluded from social circles and distanced from their communities. Loneliness and social isolation can have a detrimental impact on both health and quality of life. Internationally, models of social and practical support at the end of life are gaining momentum as a result of the Compassionate Communities movement. These models have not yet been subjected to rigorous evaluation. The aims of the study described in this protocol are: (1) to evaluate the feasibility, acceptability and potential effectiveness of The Good Neighbour Partnership (GNP), a new volunteer-led model of social and practical care/support for community dwelling adults in Ireland who are living with advanced life-limiting illness; and (2) to pilot the method for a Phase III Randomised Controlled Trial (RCT). DESIGN: The INSPIRE study will be conducted within the Medical Research Council (MRC) Framework for the Evaluation of Complex Interventions (Phases 0-2) and includes an exploratory two-arm delayed intervention randomised controlled trial. Eighty patients and/or their carers will be randomly allocated to one of two groups: (I) Intervention: GNP in addition to standard care or (II) Control: Standard Care. Recipients of the GNP will be asked for their views on participating in both the study and the intervention. Quantitative and qualitative data will be gathered from both groups over eight weeks through face-to-face interviews which will be conducted before, during and after the intervention. The primary outcome is the effect of the intervention on social and practical need. Secondary outcomes are quality of life, loneliness, social support, social capital, unscheduled health service utilisation, caregiver burden, adverse impacts, and satisfaction with intervention. Volunteers engaged in the GNP will also be assessed in terms of their death anxiety, death self efficacy, self-reported knowledge and confidence with eleven skills considered necessary to be effective GNP volunteers. DISCUSSION: The INSPIRE study addresses an important knowledge gap, providing evidence on the efficacy, utility and acceptability of a unique model of social and practical support for people living at home, with advanced life-limiting illness. The findings will be important in informing the development (and evaluation) of similar service models and policy elsewhere both nationally and internationally. TRIAL REGISTRATION: ISRCTN18400594 18(th) February 2015.


Assuntos
Redes Comunitárias/estatística & dados numéricos , Cuidados Paliativos/métodos , Qualidade de Vida , Projetos de Pesquisa , Apoio Social , Adulto , Cuidadores , Análise Custo-Benefício , Feminino , Humanos , Irlanda , Masculino , Projetos Piloto , Características de Residência , Inquéritos e Questionários
14.
Biophys J ; 106(11): 2474-82, 2014 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-24896127

RESUMO

Small-angle neutron and x-ray scattering have become invaluable tools for probing the nanostructure of molecules in solution. It was recently shown that the definite integral of the scattering profile exhibits a scaling (power-law) behavior with respect to molecular mass. We derive the origin of this relationship, and discuss how the integrated scattering profile can be used to identify differing levels of disorder over local ≲30 Šlength scales. We apply our analysis to globular and intrinsically disordered proteins.


Assuntos
Proteínas de Bactérias/química , Proteínas Intrinsicamente Desordenadas/química , Espalhamento a Baixo Ângulo , Difração de Raios X/métodos , Conformação Proteica , Dobramento de Proteína
15.
J Am Chem Soc ; 136(39): 13582-5, 2014 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-25202918

RESUMO

The bilayer bending modulus (Kc) is one of the most important physical constants characterizing lipid membranes, but precisely measuring it is a challenge, both experimentally and computationally. Experimental measurements on chemically identical bilayers often differ depending upon the techniques employed, and robust simulation results have previously been limited to coarse-grained models (at varying levels of resolution). This Communication demonstrates the extraction of Kc from fully atomistic molecular dynamics simulations for three different single-component lipid bilayers (DPPC, DOPC, and DOPE). The results agree quantitatively with experiments that measure thermal shape fluctuations in giant unilamellar vesicles. Lipid tilt, twist, and compression moduli are also reported.


Assuntos
Bicamadas Lipídicas/química , Simulação de Dinâmica Molecular
16.
J Chem Phys ; 139(8): 084706, 2013 Aug 28.
Artigo em Inglês | MEDLINE | ID: mdl-24007028

RESUMO

We investigate the role of lipid chemical potential on the shape, thickness, and molecular orientation (lipid tilting relative to the monolayer surface normal) of lipid bilayers via a continuum-level model. We predict that decreasing the chemical potential at constant temperature, which is associated with an increase in surface tension via the Gibbs-Duhem relation, leads both to the well known reduction in thermal membrane undulations and also to increasing fluctuation amplitudes for bilayer thickness and molecular orientation. These trends are shown to be in good agreement with molecular simulations, however it is impossible to achieve full quantitative agreement between theory and simulation within the confines of the present model. We suggest that the assumption of lipid volume incompressibility, common to our theoretical treatment and other continuum models in the literature, may be partially responsible for the quantitative discrepancies between theory and simulation.


Assuntos
Bicamadas Lipídicas/química , Temperatura , Simulação de Dinâmica Molecular , Tensão Superficial
17.
Phys Rev Lett ; 109(2): 028102, 2012 Jul 13.
Artigo em Inglês | MEDLINE | ID: mdl-23030207

RESUMO

Thermal fluctuations of lipid orientation are analyzed to infer the bending rigidity of lipid bilayers directly from molecular simulations. Compared to the traditional analysis of thermal membrane undulations, the proposed method is reliable down to shorter wavelengths and allows for determination of the bending rigidity using smaller simulation boxes. The requisite theoretical arguments behind this analysis are presented and verified by simulations spanning a diverse range of lipid models from the literature.


Assuntos
Bicamadas Lipídicas/química , Lipídeos de Membrana/química , Modelos Biológicos , Fenômenos Biomecânicos , Simulação por Computador , Membranas/química , Termodinâmica
18.
Health Informatics J ; 28(4): 14604582221135431, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36318245

RESUMO

This study assesses the perceived impact and benefits of Project ECHO (Extension for Community Healthcare Outcomes), a tele-mentoring intervention for health and social care providers, patients and the health system in Northern Ireland. Having access to a specialist, a space to share experiences, and being able to disseminate up-to-date best practice were all cited as improving provider knowledge as well as improving quality of care for patients. Healthcare providers reported being more confident in managing patients and that relationships had been improved between different levels of the health system. ECHO was described as improving access to education and training by removing geographic and time barriers. This is one of the first studies to qualitatively analyse impact across a number of different clinical and social care ECHO networks. The results strongly indicate the perceived benefit of ECHO in improving provider, patient and health system outcomes such as increased healthcare provider knowledge and confidence to manage patients at primary levels of the health system. This has implications for future service design, particularly within the context of COVID-19 in which virtual and online training is necessitated by social distancing requirements.


Assuntos
COVID-19 , Humanos , Irlanda do Norte , Serviços de Saúde Comunitária , Apoio Social , Pessoal de Saúde/educação
19.
BMJ Support Palliat Care ; 12(e6): e767-e770, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32046963

RESUMO

OBJECTIVES: To gain preliminary data regarding the prevalence of proximal deep vein thrombosis (DVT) in those with non-malignant conditions admitted to specialist palliative care units (SPCUs). METHODS: Data were collected as part of a prospective longitudinal observational study in five SPCUs in England, Wales and Northern Ireland (Registration: ISRCTN97567719) to estimate the prevalence of proximal femoral vein DVT in people admitted to SPCUs. The primary outcome for this exploratory substudy was the prevalence of DVT in patients with non-malignant palliative conditions. Consecutive consenting adults underwent bilateral femoral vein ultrasonography within 48 hours of admission. Data were collected on symptoms associated with venous thromboembolism. Patients were ineligible if the estimated prognosis was <5 days. Cross-sectional descriptive analysis was conducted on baseline data and prevalence estimates presented with 95% CIs. RESULTS: 1390 patients were screened, 28 patients had non-malignant disease and all were recruited. The mean age 68·8 (SD 12·0), range 43-86 years; men 61%; survival mean 86 (SD 108.5) range 1-345 days. No patient had a history of venous thromboembolism. Four (14%) were receiving thromboprophylaxis. Of 22 evaluable scans, 8 (36%, 95% CI: 17% to 59%) showed femoral vein DVT. The level of reported relevant symptoms (leg oedema, leg pain, chest pain and breathlessness) was high irrespective of the presence of DVT. CONCLUSIONS: Our exploratory data indicate one in three people admitted to an SPCU with non-malignant disease had a femoral vein DVT. Although definitive conclusions cannot be drawn, these data justify a larger prospective survey.


Assuntos
Hospitais para Doentes Terminais , Tromboembolia Venosa , Trombose Venosa , Adulto , Masculino , Humanos , Idoso , Trombose Venosa/diagnóstico por imagem , Trombose Venosa/epidemiologia , Trombose Venosa/complicações , Projetos Piloto , Estudos Prospectivos , Pacientes Internados , Anticoagulantes/uso terapêutico , Estudos Transversais , Tromboembolia Venosa/complicações , Tromboembolia Venosa/tratamento farmacológico , Fatores de Risco
20.
J Chem Phys ; 135(19): 194701, 2011 Nov 21.
Artigo em Inglês | MEDLINE | ID: mdl-22112091

RESUMO

A numerical scheme based upon established hydrodynamic and elastic considerations is introduced and used to predict the intermediate scattering function for lipid bilayer membranes. The predictions span multiple wavelength regimes, including those studied by dynamic light scattering (DLS; microns) and neutron spin-echo (NSE) spectroscopy (10-100 nm). The results validate a recent theory specific to the NSE regime and expose slight inaccuracies associated with the theoretical results available in the DLS regime. The assumptions that underlie both our numerical methods and the related theoretical predictions are reviewed in detail to explain when certain results can be applied to experiment and where caution must be exercised.


Assuntos
Bicamadas Lipídicas/química , Nanoestruturas/química , Luz , Espalhamento de Radiação , Análise Espectral
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