RESUMO
BACKGROUND: Recruitment and retention of participants in clinical trials for Parkinson's disease (PD) is challenging. A qualitative study embedded in the PD STAT multi-centre randomised controlled trial of simvastatin for neuroprotection in PD explored the motivators, barriers and challenges of participants, care partners and research staff. OBJECTIVE: To outline a set of considerations informing a patient-centred approach to trial recruitment, retention, and delivery. METHOD: We performed semi-structured interviews and focus groups with a subset of trial participants and their care partners. Quantitative and qualitative data were obtained through surveys circulated among the 235 participants across 23 UK sites at the beginning, middle and end of the 2-year trial. We also interviewed and surveyed research staff at trial closure. RESULTS: Twenty-seven people with PD, 6 care partners and 9 researchers participated in interviews and focus groups. A total of 463 trial participant survey datasets were obtained across three timepoints, and 53 staff survey datasets at trial closure. Trial participants discussed the physical and psychological challenges they faced, especially in the context of OFF state assessments, relationships, and communication with research staff. Care partners shared their insights into OFF state challenges, and the value of being heard by research teams. Research staff echoed many concerns with suggestions on flexible, person-centred approaches to maximising convenience, comfort, and privacy. CONCLUSION: These considerations, in favour of person-centred research protocols informed by the variable needs of participants, care partners and staff, could be developed into a set of recommendations for future trials.
Assuntos
Doença de Parkinson , Humanos , Doença de Parkinson/tratamento farmacológico , Pesquisa Qualitativa , Pesquisadores , Inquéritos e QuestionáriosRESUMO
Climate change will adversely affect the health of populations and the ability of healthcare systems to deliver appropriate and timely care. Furthermore, resource scarcity requires nurses to practice in more sustainable ways. This study investigated the extent to which student nurses reported that they were able to apply their knowledge of sustainability in clinical practice following educational sessions on relevant topics. Students were exposed to scenario-based sustainability education in years 1, 2, and 3 of their 3-year program. Data were collected using a questionnaire that asked participants if they were able to implement sustainable practice. In year 2,121 students, and in year 3, 68 stated they made a change or challenged practice as a consequence of learning about sustainability. Barriers preventing them from challenging unsustainable practice were lack of confidence and resistance to change. Year-3 students were more able to influence unsustainable practice than were those in year 2. This study indicates that sustainability sessions, focused on aspects of clinical relevance, can support nurses to implement change; barriers remain that require confidence building for the students.
Assuntos
Avaliação de Programas e Projetos de Saúde/métodos , Estudantes de Enfermagem/psicologia , Adulto , Mudança Climática , Estudos de Coortes , Currículo/normas , Currículo/tendências , Bacharelado em Enfermagem/métodos , Estudos de Avaliação como Assunto , Feminino , Humanos , Masculino , Avaliação de Programas e Projetos de Saúde/estatística & dados numéricos , Estudantes de Enfermagem/estatística & dados numéricos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: There is limited European literature on nursing and sustainability; nursing students are poorly prepared on the connections between resources, climate change, sustainability, and health, so they must acquire knowledge and develop skills and competencies in this field. The use of digital technologies and teaching via E-learning has grown, and has been widely adopted as a learning method for nursing. OBJECTIVES: The aim of the current study was to test and evaluate digital educational materials on environmental sustainability and health, in the context of university nursing education in different European countries. DESIGN: An observational cross-sectional design. SETTINGS: University of Plymouth, University of Jaén, and University of Esslingen for Nursing Degree Studies. PARTICIPANTS: 299 nursing students: 161 students from University of Jaén; 106 from Plymouth; and 32 from Esslingen. 22 professional evaluators with different profiles were recruited: Teachers, Clinical professionals, Delphi Experts, and Technical Experts. METHODS: We conducted a piloting and validation process. The materials were designed and adapted to the NurSusTOOLKIT Sustainability Literacy and Competency framework. Evaluation was developed by professionals and students. We used the Spanish Standard for the assessment of Digital Educational Material Quality at University level questionnaire. All students provided informed consent prior to taking part in the learning and evaluation. RESULTS: The overall evaluations of materials by students and professionals were 7.98±1.28 and 8.50±1.17, respectively. The Ability to generate learning was scored higher among students (mean difference: 0.84; 0.22-1.47; p=0.008). In the overall assessment by students, statistically significant differences were found between the three universities (Welch: 11.69, p<0.001). CONCLUSIONS: Students, professionals, and technical experts considered the materials to be very good quality, especially regarding the quality of contents, format, and design. For students, these materials can generate reflection and learning regarding environmental and health issues during nursing training.
Assuntos
Mudança Climática , Instrução por Computador/métodos , Saúde Ambiental , Internet , Aprendizagem , Adulto , Conservação dos Recursos Naturais , Estudos Transversais , Bacharelado em Enfermagem , Europa (Continente) , Docentes de Enfermagem , Humanos , Pessoa de Meia-Idade , Estudantes de Enfermagem , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The delivery of healthcare has an impact on the environment and contributes to climate change. As a consequence, the way in which nurses and midwives use and dispose of natural resources in clinical practice, and the subsequent impact on the environment, should be integral component of nursing and midwifery education. Opportunities need to be found to embed such issues into nursing curricula; thus bringing sustainability issues 'closer to home' and making them more relevant for clinical practice. OBJECTIVES: The study was designed to measure the impact of a sustainability-focussed, scenario-based learning educational intervention on the attitudes and knowledge of student nurses and midwives. DESIGN: Pre test/Post test intervention study using scenario-based learning as the educational intervention. The Sustainability Attitudes in Nursing Survey (SANS_2) was used as the outcome measure. SETTINGS: Clinical skills session in a UK University School of Nursing and Midwifery. PARTICIPANTS: 676 second year undergraduate nursing and midwifery students. METHODS: The 7-point scale SANS survey was completed before and after the teaching session; standard non-parametric analysis compared pre and post intervention scores. RESULTS: Changes were observed in attitude towards climate change and sustainability and to the inclusion of these topics within the nursing curricula (p=0.000). Participants demonstrated greater knowledge of natural resource use and the cost of waste disposal following the session (p=0.000). Participants also reported that sessions were realistic, and levels of agreement with statements supporting the value of the session and the interactive nature of delivery were higher following the session. CONCLUSIONS: Using a scenario-based learning approach with nursing and midwifery students can change attitudes and knowledge towards sustainability and climate change. Embedding this approach in the context of clinical skills provides a novel and engaging approach that is both educationally sound and clinically relevant.
Assuntos
Conscientização , Tocologia/educação , Aprendizagem Baseada em Problemas/métodos , Avaliação de Programas e Projetos de Saúde , Estudantes de Enfermagem , Currículo , Feminino , Humanos , Recursos Naturais/provisão & distribuição , Alocação de Recursos/estatística & dados numéricos , Inquéritos e QuestionáriosRESUMO
This article explores how people with progressive multiple sclerosis give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression. This repeat interview study is empirically grounded in 28 interviews with 14 people with progressive multiple sclerosis. We identified gender differences in diagnosis-seeking which impacted subsequent sense-making. Male respondents found a diagnosis of multiple sclerosis difficult to come to terms with, and an enduring sense of loss or anger could inhibit further sense-making. A diagnosis of multiple sclerosis was more difficult to obtain for women respondents, and any sense of certainty that diagnosis provided framed their subsequent sense-making strategies. The complex sequelae of multiple sclerosis require that self-management strategies are both contextual and timely, although even the most accomplished self-managers can lose their sense of self with neurodegeneration. Disease progression can be associated with suicidal ideation, suggesting the need for greater dialogue to ensure that people with multiple sclerosis are adequately supported to fulfil their quality of life at all stages of neurodegeneration. These lay perspectives emphasise the articulation of affect rather than the rendering of a medical diagnosis, although diagnosis may provide a degree of certainty in the short term. The ethos of self-management ensures people attempt to retain their sense of 'normality' and existent social roles for as long as possible, but this ethos can negate both one's ability to self-manage and the management of self.
Assuntos
Adaptação Psicológica , Atitude Frente a Saúde , Esclerose Múltipla Crônica Progressiva/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Qualidade de Vida , Autogestão/psicologia , Adulto , Idoso , Diagnóstico Tardio , Diagnóstico Diferencial , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla Crônica Progressiva/complicações , Esclerose Múltipla Crônica Progressiva/diagnóstico , Esclerose Múltipla Crônica Progressiva/reabilitação , Pesquisa Qualitativa , Autogestão/métodos , Fatores Sexuais , Reino UnidoRESUMO
AIM: To explore the concept of sustainability in nursing using social media as a vehicle for discussion on the topic. BACKGROUND: There is a need for an increased awareness among nurses of the issues that are crucial for the healthcare sector to prepare for climate change and contribute to sustainable development. However, topics about sustainability and climate change are not a requirement of nursing curricula in Europe; social media provides an opportunity to raise issues and promote discussion. DESIGN: A thematic analysis of a Twitter discussion. METHODS: A Twitter discussion session hosted by @WeNurses took place on 24 March 2015 over 1 hour. Data were gathered via this online discussion hosted on Twitter, a social media platform. Following the discussion a thematic analysis of the posted Tweets was conducted. FINDINGS: One hundred and nineteen people posted nine hundred and ninety six Tweets, a reach of 3,306,368. Tweets broadly followed the questions posted by the team. Several threads related to the sustainable use of healthcare resources and the need to reduce waste was evident. A Word Cloud of the Tweets highlighted prominent words in the discussion: sustainability, nursing/nurses, curriculum, important, waste, practice, resources, student, plastic, health, gloves. CONCLUSION: Social media is an effective way of engaging nurses and students in a discussion on challenging issues. Sustainability appears to be important for nurses, with a particular emphasis on resource use and the importance of sustainability topics in nurse education.
Assuntos
Conservação dos Recursos Naturais/métodos , Educação em Enfermagem , Enfermeiras e Enfermeiros/psicologia , Mídias Sociais , Mudança Climática , Currículo , Europa (Continente) , Humanos , Internet , Pesquisa QualitativaRESUMO
INTRODUCTION: Education in sustainable development is a goal recognised by a large number of countries and a vital concept in healthcare. It is therefore important that nurse education incorporates elements of sustainable development into nursing education curricula. However, there is limited research on student nurses' attitudes towards sustainability and no comparison of attitudes towards sustainability and its inclusion in the nursing curriculum across Europe. AIM: This project aims to assess student nurses' attitudes towards sustainability, its relevance to nursing and its inclusion in the nursing curricula. 1. To assess base-line attitudes at the start of nursing and midwifery training; 2. To compare sustainability awareness between students participating in training in a number of European universities. DESIGN: A comparative survey design using the Sustainability Attitudes in Nursing Survey (SANS_2) questionnaire. SETTINGS: Nursing classes of Universities and Nursing Schools in four European countries were investigated using a questionnaire consisting of five sustainability-related items. PARTICIPANTS: 916 nursing students (UK: 450, Germany: 196, Spain: 124, Switzerland: 146). DATA ANALYSIS: Standard descriptive and inferential statistical methods were used to establish psychometric quality (Principal Components Analysis, Cronbach's alpha, Pearson correlations) and compare student nurses from the four countries. RESULTS: The reliability of SANS_2 was good (Cronbach's alpha=.82) and the five items loaded on a single factor which explained 58% of variance. ANOVA of the SANS_2 total score showed significant differences between countries with German nursing students showing more sustainability awareness than students from the UK and Spain. CONCLUSIONS: SANS_2 is a reliable instrument to assess nursing students' sustainability awareness; there are significant differences in sustainability awareness of students of different European countries. Limitations of the study include non-random sampling, possible method effects and social desirability effects. RELEVANCE TO CLINICAL PRACTICE: Sustainability will become increasingly important in clinical practice; greater knowledge about the attitudes of nurses towards sustainability can support the development and testing of sustainability-focused teaching and learning materials.
Assuntos
Mudança Climática , Conservação dos Recursos Naturais , Estudantes de Enfermagem/psicologia , Estudos Transversais , Bacharelado em Enfermagem , Europa (Continente) , Humanos , Pesquisa Metodológica em Enfermagem , Reprodutibilidade dos Testes , Normas Sociais , Inquéritos e QuestionáriosRESUMO
Aim To evaluate attitudes towards embedding sustainability and climate change in nursing curricula among nursing students, some of whom had participated in a sustainability and health skills session, and determine whether the session could improve knowledge of sustainability. Methods Three months after the sustainability session, students who had participated along with a sample of students who had not, completed a Sustainability Attitudes in Nursing Survey questionnaire. This investigated attitudes towards climate change and sustainability in nursing curricula and the costs of clinical and domestic waste disposal. Results Nursing students were positive about sustainability and climate change and its inclusion in the curriculum, irrespective of their participation in the sustainability scenario session. Participants in the sustainability session were more likely to identify correctly the cost of clinical waste disposal in the NHS. Conclusion The sustainability and health skills session has the potential to improve nursing students' knowledge of the cost of clinical waste disposal.
Assuntos
Atitude do Pessoal de Saúde , Conservação dos Recursos Naturais , Eliminação de Resíduos de Serviços de Saúde/economia , Estudantes de Enfermagem/psicologia , Mudança Climática , Humanos , Inquéritos e Questionários , Reino UnidoRESUMO
This study provides an understanding of the experiences and perceptions of phlebotomy in people with infection who have venous damage related to injecting drug use with the aim of improving their care. Narrative interviews were conducted with 10 attendees of a phlebotomy service within an acute Trust in the south-west of England. The participants had hepatitis C infection and poor venous access due to current or former drug use. Interview audiotapes were analyzed, and the themes - conflict, emotional responses, the patient as expert, and offering solutions - were identified. In the context of this study, we discuss the difficulties associated with phlebotomy, which might explain why individuals with hepatitis C infection and venous damage disengage from health services and are less likely to undertake antiviral treatment. This research adds to the literature on phlebotomy for vulnerable groups, and recommends hepatitis C virus clinics within drug agencies, the need to review training and policy, and the development of "phlebotomy passports" to enable continuity of care between services.
Assuntos
Hepatite C/psicologia , Flebotomia/psicologia , Abuso de Substâncias por Via Intravenosa/complicações , Abuso de Substâncias por Via Intravenosa/psicologia , Adulto , Conflito Psicológico , Emoções , Inglaterra , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
Climate change and resource scarcity pose significant threats to healthcare delivery. Nurses should develop the skills to cope with these challenges in the future. Skills sessions using sustainability scenarios can help nursing students to understand the effect climate change and resource scarcity will have on health care. Involving design students in clinical skills sessions can encourage multidisciplinary working and help to find solutions to promote healthcare sustainability.
Assuntos
Mudança Climática/economia , Atenção à Saúde/economia , Recursos Naturais/provisão & distribuição , Planejamento em Desastres/métodos , Humanos , Enfermeiras e Enfermeiros/estatística & dados numéricos , Reino UnidoRESUMO
OBJECTIVES: The uninterrupted supply of essential items for patient care is crucial for organizations that deliver health care. Many products central to health care are derived from natural resources such as oil and cotton, supplies of which are vulnerable to climate change and increasing global demand. The purpose of this study was to identify which items would have the greatest effect on service delivery and patient outcomes should they no longer be available. METHODS: Using a consensus development approach, all items bought by one hospital, over one year, were subjected to a filtering process. Criteria were developed to identify at-risk products and assess them against specific risks and opportunities. Seventy-two items were identified for assessment against a range of potential impacts on service delivery and patient outcomes, from no impact to significant impact. Clinical and non-clinical participants rated the items. RESULTS: In the category of significant impact, consensus was achieved for 20 items out of 72. There were differences of opinion between clinical and non-clinical participants in terms of significant impact in relation to 18 items, suggesting that priority over purchasing decisions may create areas of conflict. Reducing reliance on critically scarce resources and reducing demand were seen as the most important criteria in developing sustainable procurement. CONCLUSION: The method was successful in identifying items vulnerable to supply chain interruption and should be repeated in other areas to test its ability to adapt to local priorities, and to assess how it functions in a variety of public and private settings.
Assuntos
Atenção à Saúde/organização & administração , Equipamentos e Provisões/provisão & distribuição , Medicina Estatal/organização & administração , Humanos , Serviço Hospitalar de Compras/organização & administração , Reino UnidoRESUMO
BACKGROUND: Climate change and resource scarcity pose challenges for healthcare in the future, yet there is little to raise awareness about these issues in the nursing curriculum and nurses are poorly equipped to practice in a changing climate. The aims of this paper are to describe how an evidence-informed 'sustainability and health' scenario based on two sustainability issues (resource depletion and waste management) was introduced into a nursing clinical skills session, and to report the evaluation of the session. METHODS: Based on evidence from our own research on waste management, sustainable procurement and resource scarcity, a practical hands-on skill session was delivered to 30 second year student nurses as part of a scheduled clinical skills day. The session was observed by one of the facilitators and interactions recorded and this was followed by a brief questionnaire completed by participants. FINDINGS: Observations of the group sessions and discussion found that students demonstrated limited knowledge about natural resources (such as oil) used in the production of items used in healthcare; they engaged in discussions following the use of Internet resources, and were able to segregate waste appropriately. Thirty (100%) students completed the evaluation questionnaire, found the resources used in the skill session helpful, and thought that the scenarios were realistic. Nineteen reported being more aware of peak oil; 30 were more aware of risks to patient experience and service delivery if resources become unavailable; 30 reported greater awareness of the management of waste in healthcare. Comments on the questionnaire indicated a high level of engagement and interest in the subject. CONCLUSION: The problem of climate change and resource scarcity can too easily be seen as a distant or intractable problem. However one way to make this topic real for students is through the use of clinically relevant scenarios in skill sessions.
Assuntos
Mudança Climática , Conservação dos Recursos Naturais , Currículo , Educação em Enfermagem , Enfermagem Baseada em Evidências , Modelos de Enfermagem , Ensino/métodos , Gerenciamento de Resíduos , Avaliação Educacional , HumanosRESUMO
PURPOSE: Hereditary Spastic Paraplegia (HSP) is an inherited nervous system disorder characterized by development of leg weakness, spasms and stiffness. While generally acknowledged that health and social care services can minimise symptoms and improve quality of life, there is a lack of research exploring this from the perspective of people affected by HSP. This qualitative study explored the users and providers experience of using rural services. METHOD: Focus groups and interviews were undertaken of people with HSP (n = 14), carers (n = 6) and professionals (n = 12), to describe their experience of service provision and to suggest improvements for care. These were taped, transcribed and analysed. RESULTS: Four themes emerged: (1) Diagnosis, symptoms and finding support; (2) Therapy, treatment and the delivery of care; (3) Managing the disease together; and (4) The way forward. CONCLUSIONS: Rehabilitation and support for self-management is valued by those affected with HSP throughout the disease trajectory from diagnosis onwards. Key to this is the development of a partnership approach which includes carers. Single point, well-informed, gatekeepers may enhance the coordination and delivery of care in rural areas. These findings underline current guidance promoting a holistic approach for people with neurological conditions.
Assuntos
Atenção à Saúde , Qualidade de Vida , Serviços de Saúde Rural/normas , Serviço Social , Paraplegia Espástica Hereditária , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Atenção à Saúde/métodos , Atenção à Saúde/organização & administração , Inglaterra/epidemiologia , Feminino , Grupos Focais , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Melhoria de Qualidade , População Rural , Serviço Social/métodos , Serviço Social/organização & administração , Paraplegia Espástica Hereditária/diagnóstico , Paraplegia Espástica Hereditária/epidemiologia , Paraplegia Espástica Hereditária/fisiopatologia , Paraplegia Espástica Hereditária/psicologia , Paraplegia Espástica Hereditária/reabilitaçãoRESUMO
Objectives:In an effort to reduce costs and respond to climate change, health care providers (Trusts) in England have started to change how they purchase goods and services. Many factors, both internal and external, affect the supply chain. Our aim was to identify those factors, so as to maintain future supply and business continuity in health and social care.Methods:Qualitative interviews with 20 senior managers from private and public sector health service providers and social care providers in south west England. Interviews were recorded, transcribed and thematically analysed.Results:There were four areas of concern: contradictions with government legislation which caused confusion about how best to deliver sustainable solutions; procurement was unclear and created multiple approaches to purchasing bulk items at low cost; internal organizational systems needed to be reconsidered to embed sustainability; and embedding sustainability requires a review of organizational systems. There are examples of sustainability solutions throughout the National Health Service (NHS) but the response continues to be patchy. More research is needed into why some Trusts and some staff do not recognize the benefits of a core approach or find the systems unable to respond.Conclusions:The NHS is one of the major purchasers of goods and services in England and is therefore in an excellent position to encourage sustainable resource management, manufacturing, use and disposal.
RESUMO
The majority of people with degenerative neurological conditions are cared for within their own families. Cognitive impairment can be a significant and increasing symptom of these conditions. In this article we report how a team of experienced researchers carried out a meta-ethnography of qualitative research articles focusing on the impact of caring for a loved one with cognitive impairment. We followed the seven-step process outlined by Noblit and Hare. Synthesized findings from 31 papers suggest emotional impact is complex and uncertain and varies from day to day. The benefit of using meta-ethnography is that the results represent a larger sample size and a reinterpretation of multiple studies can hold greater application for practice. The results of this study offer an opportunity for nurses to be aware of both the positive and negative sides of caring and being cared for. This knowledge can be used to discuss with patients and carers how best to prepare for decreasing cognition and still maintain a worthwhile quality of life.
Assuntos
Antropologia Cultural/métodos , Cuidadores/psicologia , Transtornos Cognitivos/enfermagem , Transtornos Cognitivos/psicologia , Emoções , Assistência Domiciliar/psicologia , Metanálise como Assunto , Adaptação Psicológica , Humanos , Relações Enfermeiro-Paciente , Pesquisa QualitativaRESUMO
WE EXPLORED THE EFFECTS OF LIVING WITH MULTIPLE SCLEROSIS (MS) ON A PRIMARY RELATIONSHIP: that between the person with MS and his or her closest confidant. We anticipated that this would enhance understanding of the meaning of psychosocial support from the perspective of people with MS. Using a phenomenological qualitative approach, we interviewed 33 people with MS and the people they identified as providing psychosocial support to them (their confidants). The results were presented to a range of health-care workers in two focus groups to explore their responses. Two additional focus groups were held with the participants with MS to add depth and clarity to the findings. Three major themes emerged from the interviews: 1) People with MS do not want to be defined by their condition and want to live as normal a life as possible. 2) The confidant helps to maintain this sense of normality. 3) Both the person with MS and the confidant value the relationship and together try to manage the realities of living with MS. The findings indicate the need to raise awareness among MS care professionals about the value of the confidant relationship. Training professionals to discuss emotional issues with clients and increasing collaboration with agencies that provide emotional support will facilitate a more holistic approach to care.