"Asthma can take over your life but having the right support makes that easier to deal with." Informing research priorities by exploring the barriers and facilitators to asthma control: a qualitative analysis of survey data.

BACKGROUND: Involving patients and the public in research prioritisation is important. Cochrane Airways works with authors to produce systematic reviews of evidence related to chronic airways disease. Cochrane Airways has undertaken activities to identify research priorities, including workshops with stakeholders and consultation with experts. We present the findings of an online survey, designed to align our work with the priorities of people affected by asthma. METHODS: We promoted a survey comprising open-ended questions via social media to people affected by asthma. We compiled the free-text responses and conducted an exploratory thematic analysis to identify important barriers and facilitators to asthma control. We triangulated findings with other research prioritisation activities to produce new review questions. RESULTS: We received 57 survey responses. Eight main themes emerged, most encompassing both facilitators and barriers: attitudes and knowledge; financial costs; environmental factors and triggers; healthcare systems; lifestyle factors; medication; self-care; and support. Barriers were more frequently mentioned than facilitators and many related to healthcare systems. CONCLUSIONS: These findings offer valuable insights into the challenges faced by individuals affected by asthma in the UK, and possibly further afield. We developed a list of priority reviews based on what was said by people in this survey and at a workshop. This demonstrates the real impact that people affected by asthma have on the research agenda of Cochrane Airways. Over the next 2-3 years we will produce reviews that address some of these questions hopefully leading to health benefits

Client Participation in Moral Case Deliberation: A Precarious Relational Balance

Moral case deliberation (MCD) is a form of clinical ethics support in which the ethicist as facilitator aims at supporting professionals with a structured moral inquiry into their moral issues from practice. Cases often affect clients, however, their inclusion in MCD is not common. Client participation often raises questions concerning conditions for equal collaboration and good dialogue. Despite these questions, there is little empirical research regarding client participation in clinical ethics support in general and in MCD in particular. This article aims at describing the experiences and processes of two MCD groups with client participation in a mental healthcare institution. A responsive evaluation was conducted examining stakeholders’ issues concerning client participation. Findings demonstrate that participation initially creates uneasiness. As routine builds up and client participants meet certain criteria, both clients and professionals start thinking beyond ‘us-them’ distinctions, and become more equal partners in dialogue. Still, sentiments of distrust and feelings of not being safe may reoccur. Client participation in MCD thus requires continuous reflection and alertness on relational dynamics and the quality of and conditions for dialogue. Participation puts the essentials of MCD (i.e., dialogue) to the test. Yet, the methodology and features of MCD offer an appropriate platform to introduce client participation in healthcare institutions

Enacting Ethics: Bottom-up Involvement in Implementing Moral Case Deliberation

In moral case deliberation (MCD), healthcare professionals meet to reflect upon their moral questions supported by a structured conversation method and non-directive conversation facilitator. An increasing number of Dutch healthcare institutions work with MCD to (1) deal with moral questions, (2) improve reflection skills, interdisciplinary cooperation and decision-making, and (3) develop policy. Despite positive evaluations of MCD, organization and implementation of MCD appears difficult, depending on individuals or external experts. Studies on MCD implementation processes have not yet been published. The aim of this study is to describe MCD implementation processes from the perspective of nurses who co-organize MCD meetings, so called ‘local coordinators’. Various qualitative methods were used within the framework of a responsive evaluation research design. The results demonstrate that local coordinators work hard on the pragmatic implementation of MCD. They do not emphasize the ethical and normative underpinnings of MCD, but create organizational conditions to foster a learning process, engagement and continuity. Local coordinators indicate MCD needs firm back-up from management regulations. These pragmatic action-oriented implementation strategies are as important as ideological reasons for MCD implementation. Advocates of clinical ethics support should pro-actively facilitate these strategies for both practical and ethical reasons

The value of active arts engagement on health and well-being of older adults: a nation-wide participatory study

An emerging body of research indicates that active arts engagement can enhance older adults' health and experienced well-being, but scientific evidence is still fragmented. There is a research gap in understanding arts engagement grounded in a multidimensional conceptualization of the value of health and well-being from older participants' perspectives. This Dutch nation-wide study aimed to explore the broader value of arts engagement on older people's perceived health and well-being in 18 participatory arts-based projects (dance, music, singing, theater, visual arts, video, and spoken word) for community-dwelling older adults and those living in long term care facilities. In this study, we followed a participatory design with narrative- and arts-based inquiry. We gathered micro-narratives from older people and their (in)formal caregivers (n = 470). The findings demonstrate that arts engagement, according to participants, resulted in (1) positive feelings, (2) personal and artistic growth, and (3) increased meaningful social interactions. This study concludes that art-based practices promote older people's experienced well-being and increase the quality of life of older people. This study emphasizes the intrinsic value of arts engagement and has implications for research and evaluation of arts engagement.Public Health and primary careGeriatrics in primary car

Using a realist approach to evaluate smoking cessation interventions targeting pregnant women and young people

Background This paper describes a study protocol designed to evaluate a programme of smoking cessation interventions targeting pregnant women and young people living in urban and rural locations in Northeast Scotland. The study design was developed on so-called 'realist' evaluation principles, which are concerned with the implementation of interventions as well as their outcomes. Methods/design A two-phased study was designed based on the Theory of Change (TOC) using mixed methods to assess both process and outcome factors. The study was designed with input from the relevant stakeholders. The mixed-methods approach consists of semi-structured interviews with planners, service providers, service users and non-users. These qualitative interviews will be analysed using a thematic framework approach. The quantitative element of the study will include the analysis of routinely collected data and specific project monitoring data, such as data on service engagement, service use, quit rates and changes in smoking status. Discussion The process of involving key stakeholders was conducted using logic modelling and TOC tools. Engaging stakeholders, including those responsible for funding, developing and delivering, and those intended to benefit from interventions aimed at them, in their evaluation design, are considered by many to increase the validity and rigour of the subsequent evidence generated. This study is intended to determine not only the components and processes, but also the possible effectiveness of this set of health interventions, and contribute to the evidence base about smoking cessation interventions aimed at priority groups in Scotland. It is also anticipated that this study will contribute to the ongoing debate about the role and challenges of 'realist' evaluation approaches in general, and the utility of logic modelling and TOC approaches in particular, for evaluation of complex health interventions

Building blocks for social accountability: a conceptual framework to guide medical schools

Background: This paper presents a conceptual framework developed from empirical evidence, to guide medical schools aspiring towards greater social accountability. Methods: Using a multiple case study approach, seventy-five staff, students, health sector representatives and community members, associated with four medical schools, participated in semi-structured interviews. Two schools were in Australia and two were in the Philippines. These schools were selected because they were aspiring to be socially accountable. Data was collected through on-site visits, field notes and a documentary review. Abductive analysis involved both deductive and inductive iterative theming of the data both within and across cases. Results: The conceptual framework for socially accountable medical education was built from analyzing the internal and external factors influencing the selected medical schools. These factors became the building blocks that might be necessary to assist movement to social accountability. The strongest factor was the demands of the local workforce situation leading to innovative educational programs established with or without government support. The values and professional experiences of leaders, staff and health sector representatives, influenced whether the organizational culture of a school was conducive to social accountability. The wider institutional environment and policies of their universities affected this culture and the resourcing of programs. Membership of a coalition of socially accountable medical schools created a community of learning and legitimized local practice. Communities may not have recognized their own importance but they were fundamental for socially accountable practices. The bedrock of social accountability, that is, the foundation for all building blocks, is shared values and aspirations congruent with social accountability. These values and aspirations are both a philosophical understanding for innovation and a practical application at the health systems and education levels. Conclusions: While many of these building blocks are similar to those conceptualized in social accountability theory, this conceptual framework is informed by what happens in practice - empirical evidence rather than prescriptions. Consequently it is valuable in that it puts some theoretical thinking around everyday practice in specific contexts; addressing a gap in the medical education literature. The building blocks framework includes guidelines for social accountable practice that can be applied at policy, school and individual levels

The capability set for work - correlates of sustainable employability in workers with multiple sclerosis

BACKGROUND: The aim of this study was to examine whether work capabilities differ between workers with Multiple Sclerosis (MS) and workers from the general population. The second aim was to investigate whether the capability set was related to work and health outcomes. METHODS: A total of 163 workers with MS from the MS@Work study and 163 workers from the general population were matched for gender, age, educational level and working hours. All participants completed online questionnaires on demographics, health and work functioning. The Capability Set for Work Questionnaire was used to explore whether a set of seven work values is considered valuable (A), is enabled in the work context (B), and can be achieved by the individual (C). When all three criteria are met a work value can be considered part of the individual's 'capability set'. RESULTS: Group differences and relationships with work and health outcomes were examined. Despite lower physical work functioning (U = 4250, p = 0.001), lower work ability (U = 10591, p = 0.006) and worse self-reported health (U = 9091, p ≤ 0.001) workers with MS had a larger capability set (U = 9649, p ≤ 0.001) than the general population. In workers with MS, a larger capability set was associated with better flexible work functioning (r = 0.30), work ability (r = 0.25), self-rated health (r = 0.25); and with less absenteeism (r = - 0.26), presenteeism (r = - 0.31), cognitive/neuropsychiatric impairment (r = - 0.35), depression (r = - 0.43), anxiety (r = - 0.31) and fatigue (r = - 0.34). CONCLUSIONS: Workers with MS have a larger capability set than workers from the general population. In workers with MS a larger capability set was associated with better work and health outcomes. TRIAL REGISTRATION: This observational study is registered under NL43098.008.12: 'Voorspellers van arbeidsparticipatie bij mensen met relapsing-remitting Multiple Sclerose'. The study is registered at the Dutch CCMO register ( https://www.toetsingonline.nl ). This study is approved by the METC Brabant, 12 February 2014. First participants are enrolled 1st of March 2014

Exercise therapy and cognitive behavioural therapy to improve fatigue, daily activity performance and quality of life in Postpoliomyelitis Syndrome: the protocol of the FACTS-2-PPS trial

Contains fulltext : 88661.pdf (publisher's version ) (Open Access)BACKGROUND: Postpoliomyelitis Syndrome (PPS) is a complex of late onset neuromuscular symptoms with new or increased muscle weakness and muscle fatigability as key symptoms. Main clinical complaints are severe fatigue, deterioration in functional abilities and health related quality of life. Rehabilitation management is the mainstay of treatment. Two different therapeutic interventions may be prescribed (1) exercise therapy or (2) cognitive behavioural therapy (CBT). However, the evidence on the effectiveness of both interventions is limited. The primary aim of the FACTS-2-PPS trial is to study the efficacy of exercise therapy and CBT for reducing fatigue and improving activities and quality of life in patients with PPS. Additionally, the working mechanisms, patients' and therapists' expectations of and experiences with both interventions and cost-effectiveness will be evaluated. METHODS/DESIGN: A multi-centre, single-blinded, randomized controlled trial will be conducted. A sample of 81 severely fatigued patients with PPS will be recruited from 3 different university hospitals and their affiliate rehabilitation centres. Patients will be randomized to one of three groups i.e. (1) exercise therapy + usual care, (2) CBT + usual care, (3) usual care. At baseline, immediately post-intervention and at 3- and 6-months follow-up, fatigue, activities, quality of life and secondary outcomes will be assessed. Costs will be based on a cost questionnaire, and statistical analyses on GEE (generalized estimated equations). Analysis will also consider mechanisms of change during therapy. A responsive evaluation will be conducted to monitor the implementation process and to investigate the perspectives of patients and therapists on both interventions. DISCUSSION: A major strength of the FACTS-2-PPS study is the use of a mixed methods design in which a responsive and economic evaluation runs parallel to the trial. The results of this study will generate new evidence for the rehabilitation treatment of persons with PPS. TRIAL REGISTRATION: Dutch Trial Register NTR1371