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242 result(s) for "MacFarlane, Anne"
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Perspectives of people with aphasia post-stroke towards personal recovery and living successfully: A systematic review and thematic synthesis
There is increased focus on supporting people with chronic conditions to live well via person-centred, integrated care. There is a growing body of qualitative literature examining the insider perspectives of people with post-stroke aphasia (PWA) on topics relating to personal recovery and living successfully (PR-LS). To date no synthesis has been conducted examining both internal and external, structural influences on living well. In this study, we aimed to advance theoretical understanding of how best to promote and support PR-LS by integrating the perspectives of PWA on a wide range of topics relating to PR-LS. This is essential for planning and delivering quality care. We conducted a systematic review, following PRISMA guidelines, and thematic synthesis. Following a search of 7 electronic databases, 31 articles were included and critically appraised using predetermined criteria. Inductive and iterative analysis generated 5 analytical themes about promoting PR-LS. Aphasia occurs in the context of a wider social network that provides valued support and social companionship and has its own need for formal support. PWA want to make a positive contribution to society. The participation of PWA is facilitated by enabling environments and opportunities. PWA benefit from access to a flexible, responsive, life-relevant range of services in the long-term post-stroke. Accessible information and collaborative interactions with aphasia-aware healthcare professionals empower PWA to take charge of their condition and to navigate the health system. The findings highlight the need to consider wider attitudinal and structural influences on living well. PR-LS are promoted via responsive, long-term support for PWA, friends and family, and opportunities to participate autonomously and contribute to the community. Shortcomings in the quality of the existing evidence base must be addressed in future studies to ensure that PWA are meaningfully included in research and service development initiatives. International Prospective Register of Systematic Reviews PROSPERO 2017: CRD42017056110.
Optimising individual and community involvement in health decision-making in general practice consultations and primary care settings: A way forward
The World Health Organisation Alma-Ata Declaration on Primary Healthcare, and the more recent Astana Declaration from the Global Conference on Primary Healthcare, emphasise the involvement of individuals and communities in health decision-making about their individual health care, service delivery and policy development. Increasingly, health funding agencies and academic publishers like the BMJ require Public and Patient Involvement in health research. These imperatives cover health decision-making about different issues in different settings. In this position paper, I argue that individual and community involvement in health decision-making are core to, and useful for, the discipline of general practice but may not be equally familiar or routinised practices in European primary care settings. I use the social science concept of participatory spaces, to describe three overlapping forms of involvement - shared decision-making (SDM) in clinical care, community participation to develop services and Public and Patient Involvement in research. I refer to evidence of implementation challenges for these forms of involvement and provide insights about how to routinise them with reference to the need for these practices to make more sense to general practitioners, for general practitioners to have more time and resources to incorporate them into their daily work and for more research to understand the power dynamics involved. We need leadership in our discipline, and partnership working with policymakers, patient and community organisations, to progress these issues and enable us to optimise benefits for general practitioners, patients and the broader practice population.
Translational framework for implementation evaluation and research: a normalisation process theory coding manual for qualitative research and instrument development
Background Normalisation Process Theory (NPT) is frequently used to inform qualitative research that aims to explain and evaluate processes that shape late-stage translation of innovations in the organisation and delivery of healthcare. A coding manual for qualitative researchers using NPT will facilitate transparent data analysis processes and will also reduce the cognitive and practical burden on researchers. Objectives (a) To simplify the theory for the user. (b) To describe the purposes, methods of development, and potential application of a coding manual that translates normalisation process theory (NPT) into an easily usable framework for qualitative analysis. (c) To present an NPT coding manual that is ready for use. Method Qualitative content analysis of papers and chapters that developed normalisation process theory, selection and structuring of theory constructs, and testing constructs against interview data and published empirical studies using NPT. Results A coding manual for NPT was developed. It consists of 12 primary NPT constructs and conforms to the Context-Mechanism-Outcome configuration of realist evaluation studies. Contexts are defined as settings in which implementation work is done, in which strategic intentions, adaptive execution, negotiating capability, and reframing organisational logics are enacted. Mechanisms are defined as the work that people do when they participate in implementation processes and include coherence-building, cognitive participation, collective action, and reflexive monitoring. Outcomes are defined as effects that make visible how things change as implementation processes proceed and include intervention mobilisation, normative restructuring, relational restructuring, and sustainment. Conclusion The coding manual is ready to use and performs three important tasks. It consolidates several iterations of theory development, makes the application of NPT simpler for the user, and links NPT constructs to realist evaluation methods. The coding manual forms the core of a translational framework for implementation research and evaluation.
‘I hated being ghosted’ – The relevance of social participation for living well with post‐stroke aphasia: Qualitative interviews with working aged adults
Background In the context of increasing incidence of stroke in working aged adults, there is a specific need to explore the views of working aged adults with post‐stroke aphasia, whose communication difficulties may result in restricted social participation, loss of employment and changed relationship and parenting roles. This study aimed to explore the perspectives of working aged adults with post‐stroke aphasia in relation to social participation and living well with aphasia (LWA). Design and participants We conducted qualitative interviews with 14 people with post‐stroke aphasia (PWA). Data were analysed following principles of reflexive, thematic analysis. Patient or Public Contribution: A Public and Patient Involvement aphasia advisory group inputted into the study design and interpretation of data. Results Social participation spanned 5 themes: Relationships and roles; Social support; Peer network, Aphasia awareness; and Employment and training. Meaningful, interesting social participation for LWA is individually defined. Working aged PWA may require flexible support with parenting, accessing a diverse social network and finding opportunities for meaningful social connection, training and employment. Conclusions The findings extend knowledge of social participation in the context of LWA for working aged adults by elucidating the individually defined nature of meaningful participation and how PWA may need flexible support with parenting, accessing a diverse social network and training and employment. For aphasia research, policy and services to be relevant, it is crucial that working aged PWA are meaningfully involved in setting the aphasia agenda.
Normalisation process theory: a framework for developing, evaluating and implementing complex interventions
Background The past decade has seen considerable interest in the development and evaluation of complex interventions to improve health. Such interventions can only have a significant impact on health and health care if they are shown to be effective when tested, are capable of being widely implemented and can be normalised into routine practice. To date, there is still a problematic gap between research and implementation. The Normalisation Process Theory (NPT) addresses the factors needed for successful implementation and integration of interventions into routine work (normalisation). Discussion In this paper, we suggest that the NPT can act as a sensitising tool, enabling researchers to think through issues of implementation while designing a complex intervention and its evaluation. The need to ensure trial procedures that are feasible and compatible with clinical practice is not limited to trials of complex interventions, and NPT may improve trial design by highlighting potential problems with recruitment or data collection, as well as ensuring the intervention has good implementation potential. Summary The NPT is a new theory which offers trialists a consistent framework that can be used to describe, assess and enhance implementation potential. We encourage trialists to consider using it in their next trial.
‘Participation is integral’: understanding the levers and barriers to the implementation of community participation in primary healthcare: a qualitative study using normalisation process theory
Background Many international health policies recognise the World Health Organization’s (2008) vision that communities should be involved in shaping primary healthcare services. However, researchers continue to debate definitions, models, and operational challenges to community participation. Furthermore, there has been no use of implementation theory to study how community participation is introduced and embedded in primary healthcare in order to generate insights and transferrable lessons for making this so. Using Normalisation Process Theory (NPT) as a conceptual framework, this qualitative study was designed to explore the levers and barriers to the implementation of community participation in primary healthcare as a routine way of working. Methods We conducted two qualitative studies based on a national Initiative designed to support community participation in primary care in Ireland. We had a combined multi-stakeholder purposeful sample ( n  = 72), utilising documentary evidence (study 1), semi-structured interviews (studies 1 and 2) and focus groups (study 2). Data generation and analysis were informed by Participatory Learning and Action (PLA) Research Methodology and NPT. Results For many stakeholders, community participation in primary healthcare was a new way of working. Stakeholders did not always have a clear, shared understanding of the aims, objectives and benefits of this way of working and getting involved in a specific project sometimes provided this clarity. Drivers/champions, and strong working partnerships, were considered integral to its initiation and implementation. Participants emphasised the benefits of funding, organisational support, training and networking to enact relevant activities. Health-promoting activities and healthcare consultation/information events were generally successful, but community representation on interdisciplinary Primary Care Teams proved more challenging. Overall, participants were broadly positive about the impacts of community participation, but were concerned about the scope to sustain the work without the ‘protected’ space and resources that the national Initiative afforded. Conclusions Despite the success of specific activities undertaken as part of a community process in Irish primary healthcare, the likelihood of this becoming a routine way of working in Ireland is low. Analysing the learning from this process using NPT provides theoretically informed recommendations that are transferrable to other settings and can be used to prospectively design and formatively evaluate community participation processes.
Assessing the facilitators and barriers of interdisciplinary team working in primary care using normalisation process theory: An integrative review
Interdisciplinary team working is of paramount importance in the reform of primary care in order to provide cost-effective and comprehensive care. However, international research shows that it is not routine practice in many healthcare jurisdictions. It is imperative to understand levers and barriers to the implementation process. This review examines interdisciplinary team working in practice, in primary care, from the perspective of service providers and analyses 1 barriers and facilitators to implementation of interdisciplinary teams in primary care and 2 the main research gaps. An integrative review following the PRISMA guidelines was conducted. Following a search of 10 international databases, 8,827 titles were screened for relevance and 49 met the criteria. Quality of evidence was appraised using predetermined criteria. Data were analysed following the principles of framework analysis using Normalisation Process Theory (NPT), which has four constructs: sense making, enrolment, enactment, and appraisal. The literature is dominated by a focus on interdisciplinary working between physicians and nurses. There is a dearth of evidence about all NPT constructs apart from enactment. Physicians play a key role in encouraging the enrolment of others in primary care team working and in enabling effective divisions of labour in the team. The experience of interdisciplinary working emerged as a lever for its implementation, particularly where communication and respect were strong between professionals. A key lever for interdisciplinary team working in primary care is to get professionals working together and to learn from each other in practice. However, the evidence base is limited as it does not reflect the experiences of all primary care professionals and it is primarily about the enactment of team working. We need to know much more about the experiences of the full network of primary care professionals regarding all aspects of implementation work. International Prospective Register of Systematic Reviews PROSPERO 2015: CRD42015019362.
Understanding the evolution of trust in a participatory health research partnership: A qualitative study
Introduction Advancements in evaluating the impact of participatory health research (PHR) have been made through comprehensive models like the community‐based participatory research (CBPR) conceptual model, which provides a useful framework for exploring how context and partnership processes can influence health research design and interventions. However, challenges in operationalising aspects of the model limit our understanding and evaluation of the PHR process. Trust is frequently identified as an important component of the CBPR model, which supports the development of key partnership outcomes, such as partnership synergy. However, trust continues to be limited to a binary view (as present or absent), which is problematic given its inherently dynamic and temporal nature. Study Aim The aim of this qualitative study is to understand the evolution of trust in the national public and patient involvement (PPI) network in Ireland. Setting and Participants Participants from the PPI network (n = 15/21) completed a semistructured interview discussing the evolution of trust by reviewing four social network maps derived from a previous longitudinal study. Analysis Following Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data. Results Participants described the evolution of trust as a function of three contextual factors: (1) the set‐up and organisation of the network, (2) how people work together and (3) reflection on the process and outcomes. Their descriptions across these themes seemed to vary depending on partnership type with National Partners and Site Leads having more opportunities to demonstrate trust (e.g., via leadership roles or more resources), compared to Local. Thus, visibility and the opportunity to be visible, depending on the set‐up and organisation of the network and how people work together, seemingly play an important role in the evolution of trust over time. Based on these findings, we provide important questions for reflection across themes that could be considered for future PHR partnerships. Discussion Given that the opportunity and visibility to build and maintain trust over time may not be equally available to all partners, it is important to find ways to invest in and commit to equitable relationships as the key to the success (i.e., longevity) of partnerships. We reflect on/offer important implications for those engaging in PHR partnerships and those who fund such research. Patient or Public Contribution A Research Advisory Group comprising four research partners (representing academic, service and community organisations) from the PPI Ignite Network provided input and approval for the research objectives of this study as well as previously published work informing this study. Informal consultation occurred with members of this group to discuss findings from this study, assisting with the way findings are presented and described, to be accessible for diverse audiences. Two Research Advisory Group members were involved in the interpretation of the results, and one is a co‐author of this manuscript (Zoe Hughes).
The role of music and singing as research methods to improve migrants’ involvement in health research and policy-making
This commentary explores the potential of arts-based research methods, particularly music and singing, to address issues of participatory inequity and the structural bias this creates in health research systems and policies. Focusing on migration as a pressing public health issue in resettlement countries in the Global North, this commentary’s objective is to investigate the use of such creative methods as a means of improving migrants’ participation in health research, knowledge translation and the development of health policy. In doing so, it challenges the overreliance on cognitively and verbally oriented methods in the Global North, which fail to harness the participatory potential of the whole-body sensorium. Drawing on Palmer et al.’s explanatory theoretical model of change and centralizing the concept of participatory space, it advances this discussion within a participatory health research paradigm. The exploration is further informed by a recent scoping review on the use of music as an arts-based method in migrant health research, as well as two case studies using the Irish World Music Café method. It concludes with the proposal that further exploration of music and singing as mechanisms of change in health research is essential if we are to fully understand whether/how music and singing for participatory space-making may reset the health research agenda, putting meaningful, whole-person engagement at the heart of research to inform systems and policies.