Anne MacFarlane

University of Limerick, Luimneach, Munster, Ireland

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Publications (48)153.54 Total impact

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    ABSTRACT: Background: Communication problems occur in general practice consultations when migrants and general practitioners do not share a common language and culture. Migrants' perspectives have rarely been included in the development of guidelines designed to ameliorate this. Considered 'hard-to-reach' on the basis of inaccessibility, language discordance and cultural difference, migrants have been consistently excluded from participation in primary healthcare research. The purpose of this qualitative study was to address this gap. Methods: The study was conducted in the Republic of Ireland, 2009 - 2011. We developed a multi-lingual community-university research team that included seven established migrants from local communities. They completed training in Participatory Learning & Action (PLA) - a qualitative research methodology. Then, as trained service-user peer researchers (SUPERs) they used their access routes, language skills, cultural knowledge and innovative PLA techniques to recruit and engage in research with fifty-one hard-to-reach migrant service-users (MSUs). Results & discussion: In terms of access, university researchers successfully accessed SUPERs, who, in turn, successfully accessed, recruited and retained MSUs in the study. In terms of meaningful engagement, SUPERs facilitated a complex PLA research process in a language-concordant manner, enabling inclusion and active participation by MSUs. This ensured that MSUs' perspectives were included in the development of a guideline for improving communication between healthcare providers and MSUs in Ireland. SUPERs evaluated their experiences of capacity-building, training, research fieldwork and dissemination as positively meaningful for them. MSUs evaluated their experiences of engagement in PLA fieldwork and research as positively meaningful for them. Conclusions: Given the need to build primary healthcare 'from the ground up', the perspectives of diverse groups, especially the hard-to-reach, must become a normative part of primary healthcare research. PLA is a powerful, practical 'fit-for-purpose' methodology for achieving this: enabling hard-to-reach groups to engage meaningfully and contribute with ease to academic research. PLA has significant potential to become a 'standard' or generic approach in building community-based primary health care. Community-university partnerships have a significant role to play in this, with capacity to radically influence the shape of healthcare research, expanding the research agenda to incorporate the views and needs of hard-to-reach and vulnerable populations.
    Preview · Article · Dec 2015 · BMC Health Services Research
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    ABSTRACT: Objective The aim of this research was to involve migrants and other key stakeholders in a participatory dialogue to develop a guideline for enhancing communication in cross-cultural general practice consultations. In this paper, we focus on findings about the use of formal versus informal interpreters because dialogues about these issues emerged as central to the identification of recommendations for best practice. Design This qualitative case study involved a Participatory Learning and Action (PLA) research methodology. Participants The sample comprised 80 stakeholders: 51 from migrant communities; 15 general practitioners (GPs) and general practice staff; 7 established migrants as peer researchers; 5 formal, trained interpreters; and 2 service planners from the national health authority. Setting Galway, Ireland. Results There was 100% consensus across stakeholder groups that while informal interpreters have uses for migrants and general practice staff, they are not considered acceptable as best practice. There was also 100% consensus that formal interpreters who are trained and working as per a professional code of practice are acceptable as best practice. Conclusions Policymakers and service planners need to work in partnership with service providers and migrants to progress the implementation of professional, trained interpreters as a routine way of working in general practice.
    Full-text · Article · Sep 2015 · BMJ Open
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    ABSTRACT: To explore the views and experiences of general practitioners (GPs) in relation to recognition, recording, and treatment of mental health problems of undocumented migrants (UMs), and to gain insight in the reasons for under-registration of mental health problems in the electronic medical records. Qualitative study design with semi-structured interviews using a topic guide. Sixteen GPs in the Netherlands with clinical expertise in the care of UMs. GPs recognized many mental health problems in UMs. Barriers that prevented them from recording these problems and from delivering appropriate care were their low consultation rates, physical presentation of mental health problems, high number of other problems, the UM's lack of trust towards health care professionals, and cultural differences in health beliefs and language barriers. Referrals to mental health care organizations were often seen as problematic by GPs. To overcome these barriers, GPs provided personalized care as far as possible, referred to other primary care professionals such as social workers or mental health care nurses in their practice, and were a little less restrictive in prescribing psychotropics than guidelines recommended. GPs experienced a variety of barriers in engaging with UMs when identifying or suspecting mental health problems. This explains why there is a gap between the high recognition of mental health problems and the low recording of these problems in general practice files. It is recommended that GPs address mental health problems more actively, strive for continuity of care in order to gain trust of the UMs, and look for opportunities to provide mental care that is accessible and acceptable for UMs.
    Full-text · Article · May 2015 · Scandinavian journal of primary health care
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    ABSTRACT: Guidelines and training initiatives (G/TIs) available to support communication in cross-cultural primary health care consultations are not routinely used. We need to understand more about levers and barriers to their implementation and identify G/TIs likely to be successfully implemented in practice. To report a mapping process used to identify G/TIs and to prospectively appraise their implementability, using Normalization Process Theory (NPT). RESTORE is a 4-year EU FP-7 project. We used purposeful and network sampling to identify experts in statutory and non-statutory agencies across Austria, England, Greece, Ireland, Scotland and the Netherlands who recommended G/TI data from the grey literature. In addition, a peer review of literature was conducted in each country. Resulting data were collated using a standardized Protocol Mapping Document. G/TIs were identified for inclusion by (i) initial elimination of incomplete G/TI material; (ii) application of filtering criteria; and (iii) application of NPT. 20 G/TIs met selection criteria: 8 guidelines and 12 training initiatives. Most G/TIs were identified in the Netherlands (n = 7), followed by Ireland (n = 6) and England (n = 5). Fewer were identified in Scotland (n = 2), and none in Greece or Austria. The majority (n = 13) were generated without the inclusion of migrant service users. All 20 were prospectively appraised for potential implementability by applying NPT. NPT is useful as a means of prospectively testing G/TIs for implementability. Results indicate a need to initiate meaningful engagement of migrants in the development of G/TIs. A European-based professional standard for development and assessment of cross-cultural communication resources is advised. © The Author 2015. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.
    Full-text · Article · Apr 2015 · Family Practice
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    ABSTRACT: Background There have been recent important advances in conceptualizing and operationalizing involvement in health research and health-care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine – normalized – way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization – definition, enrolment, enactment and appraisal.Method Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory.FindingsTwenty-six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co-governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals.Conclusion To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co-governance and dissemination of research processes and findings.
    No preview · Article · Jul 2014 · Health expectations: an international journal of public participation in health care and health policy
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    ABSTRACT: Background: This is a time of unprecedented mobility across the globe. Healthcare systems need to adapt to ensure that primary care is culturally and linguistically appropriate for migrants. Evidence-based guidelines and training interventions for cultural competence and the use of professional interpreters are available across European healthcare settings. However, in real-world practice migrants and their healthcare providers 'get by' with a range of informal and inadequate strategies. RESTORE is an EU FP7 funded project, which is designed to address this translational gap. Objectives: The objective of RESTORE is to investigate and support the implementation of guidelines and training initiatives to support communication in cross-cultural consultations in selected European primary care settings. Design: RESTORE is a qualitative, participatory health project running from 2011-2015. It uses a novel combination of normalization process theory and participatory learning and action research to follow and shape the implementation journeys of relevant guidelines and training initiatives. Research teams in Ireland, England, the Netherlands, Austria and Greece are conducting similar parallel qualitative case study fieldwork, with a complementary health policy analysis led by Scotland. In each setting, key stakeholders, including migrants, are involved in participatory data generation and analysis. Expected results: RESTORE will provide knowledge about the levers and barriers to the implementation of guidelines and training initiatives in European healthcare settings and about successful, transferrable strategies to overcome identified barriers. RESTORE will elucidate the role of policy in shaping these implementation journeys; generate recommendations for European policy driving the development of culturally and linguistically appropriate healthcare systems.
    Full-text · Article · Jan 2014 · The European journal of general practice
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    ABSTRACT: There is a well-recognized need for greater use of theory to address research translational gaps. Normalization Process Theory (NPT) provides a set of sociological tools to understand and explain the social processes through which new or modified practices of thinking, enacting, and organizing work are implemented, embedded, and integrated in healthcare and other organizational settings. This review of NPT offers readers the opportunity to observe how, and in what areas, a particular theoretical approach to implementation is being used. In this article we review the literature on NPT in order to understand what interventions NPT is being used to analyze, how NPT is being operationalized, and the reported benefits, if any, of using NPT. Using a framework analysis approach, we conducted a qualitative systematic review of peer-reviewed literature using NPT. We searched 12 electronic databases and all citations linked to six key NPT development papers. Grey literature/unpublished studies were not sought. Limitations of English language, healthcare setting and year of publication 2006 to June 2012 were set. Twenty-nine articles met the inclusion criteria; in the main, NPT is being applied to qualitatively analyze a diverse range of complex interventions, many beyond its original field of e-health and telehealth. The NPT constructs have high stability across settings and, notwithstanding challenges in applying NPT in terms of managing overlaps between constructs, there is evidence that it is a beneficial heuristic device to explain and guide implementation processes. NPT offers a generalizable framework that can be applied across contexts with opportunities for incremental knowledge gain over time and an explicit framework for analysis, which can explain and potentially shape implementation processes. This is the first review of NPT in use and it generates an impetus for further and extended use of NPT. We recommend that in future NPT research, authors should explicate their rationale for choosing NPT as their theoretical framework and, where possible, involve multiple stakeholders including service users to enable analysis of implementation from a range of perspectives.
    Full-text · Article · Jan 2014 · Implementation Science
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    Full-text · Article · Aug 2013 · The Lancet
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    ABSTRACT: The purpose of this paper is to substantiate the importance of research about barriers and levers to the implementation of supports for cross-cultural communication in primary care settings in Europe. After an overview of migrant health issues, with the focus on communication in cross-cultural consultations in primary care and the importance of language barriers, we highlight the fact that there are serious problems in routine practice that persist over time and across different European settings. Language and cultural barriers hamper communication in consultations between doctors and migrants, with a range of negative effects including poorer compliance and a greater propensity to access emergency services. It is well established that there is a need for skilled interpreters and for professionals who are culturally competent to address this problem. A range of professional guidelines and training initiatives exist that support the communication in cross-cultural consultations in primary care. However, these are commonly not implemented in daily practice. It is as yet unknown why professionals do not accept or implement these guidelines and interventions, or under what circumstances they would do so. A new study involving six European countries, RESTORE (REsearch into implementation STrategies to support patients of different ORigins and language background in a variety of European primary care settings), aims to address these gaps in knowledge. It uses a unique combination of a contemporary social theory, normalisation process theory (NPT) and participatory learning and action (PLA) research. This should enhance understanding of the levers and barriers to implementation, as well as providing stakeholders, with the opportunity to generate creative solutions to problems experienced with the implementation of such interventions.
    Full-text · Article · Apr 2013 · Primary Health Care Research & Development
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    Anne Macfarlane · Catherine O'Donnell
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    ABSTRACT: The development of a high-quality primary healthcare system requires multidisciplinary perspectives and collaborations between clinicians and non-clinicians. Academic primary care departments across the United Kingdom and Ireland employ academics from a range of disciplines. However, questions remain about the parity of opportunity for career progression with a consistent trend to focus more on clinicians than non-clinicians. In this paper, we analyse the employment and careers of non-clinical primary care academics working in Ireland and Scotland. We draw on survey data from the island of Ireland and conference workshop discussions among Irish- and Scottish-based academics. We highlight problems with career progression and identify some strategic actions. We argue for a renewed attempt to ensure that all academics who are contributing to the discipline of primary care are appropriately acknowledged and supported to continue their endeavours to develop high-quality primary care health systems.
    Full-text · Article · Feb 2013 · Primary Health Care Research & Development
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    ABSTRACT: Modernization policies in primary care, such as the introduction of out-of-hours general practice cooperatives, signify a marked departure from many service users' traditional experiences of continuity of care. We report on a case study of accounts of service users with chronic conditions and their caregivers of continuity of care in an out-of-hours general practice cooperative in Ireland. Using Strauss and colleagues' Chronic Illness Trajectory Framework, we explored users' and caregivers' experiences of continuity in this context. Whereas those dealing with "routine trajectories" were largely satisfied with their experiences, those dealing with "problematic trajectories" (characterized by the presence of, for example, multimorbidity and complex care regimes) had considerable concerns about continuity of experiences in this service. Results highlight that modernization policies that have given rise to out-of-hours cooperatives have had a differential impact on service users with chronic conditions and their caregivers, with serious consequences for those who have "problematic" trajectories.
    Full-text · Article · Dec 2012 · Qualitative Health Research
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    ABSTRACT: Background The implementation of guidelines and training initiatives to support communication in cross-cultural primary care consultations is ad hoc across a range of international settings with negative consequences particularly for migrants. This situation reflects a well-documented translational gap between evidence and practice and is part of the wider problem of implementing guidelines and the broader range of professional educational and quality interventions in routine practice. In this paper, we describe our use of a contemporary social theory, Normalization Process Theory and participatory research methodology—Participatory Learning and Action—to investigate and support implementation of such guidelines and training initiatives in routine practice. Methods This is a qualitative case study, using multiple primary care sites across Europe. Purposive and maximum variation sampling approaches will be used to identify and recruit stakeholders—migrant service users, general practitioners, primary care nurses, practice managers and administrative staff, interpreters, cultural mediators, service planners, and policy makers. We are conducting a mapping exercise to identify relevant guidelines and training initiatives. We will then initiate a PLA-brokered dialogue with stakeholders around Normalization Process Theory’s four constructs—coherence, cognitive participation, collective action, and reflexive monitoring. Through this, we will enable stakeholders in each setting to select a single guideline or training initiative for implementation in their local setting. We will prospectively investigate and support the implementation journeys for the five selected interventions. Data will be generated using a Participatory Learning and Action approach to interviews and focus groups. Data analysis will follow the principles of thematic analysis, will occur in iterative cycles throughout the project and will involve participatory co-analysis with key stakeholders to enhance the authenticity and veracity of findings. Discussion This research employs a unique combination of Normalization Process Theory and Participatory Learning and Action, which will provide a novel approach to the analysis of implementation journeys. The findings will advance knowledge in the field of implementation science because we are using and testing theoretical and methodological approaches so that we can critically appraise their scope to mediate barriers and improve the implementation processes.
    Full-text · Article · Nov 2012 · Implementation Science
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    P Clerkin · B S Buckley · AW Murphy · A E Macfarlane
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    ABSTRACT: National policies are being developed, which may limit access to patients' records for health research. This could reduce the ability of health research to benefit society as a whole. It is important to develop an in-depth understanding of people's views across demographic groups to inform such policy development. To explore patients' views about the use of their general practice records in health research with attention to gender and age. Qualitative study using focus groups. Six General Practices in the west of Ireland. Focus Group interviews with 35 people who were patients at the practices. Overall, participants were positively inclined towards the idea of information from their records (anonymous and identifiable) being used in research for the ogreater good' although there were some concerns about personal information being oleaked'. Males emphasized risks in relation to employment and finances, whereas females emphasized risks in relation to social discomfort and embarrassment. Participants were supportive of consent models that enable patients to give prior ongoing consent for specific agreed olevels' of data use, affording patients self-determination without the need for consent request on study-by-study basis. Overall male and female patients of different ages are supportive of the use of their general practice records in health research and of general practitioners as data protectors.
    Full-text · Article · Jul 2012 · Family Practice
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    Rachel McEvoy · Anne Macfarlane
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    ABSTRACT: There are now several decades of history of community participation in health, with significant international evidence to suggest that there is much to be gained by primary health services and disadvantaged communities working in partnership.In this paper we provide an overview of community participation in primary care, establishing the policy context in which a recent 'Joint Initiative on Community Participation in Primary Health Care' was developed in Ireland. This Initiative was designed to support the involvement of disadvantaged communities and groups in the development of primary health care services at local level.An independent formative evaluation of the Joint Initiative took place between September 2009 and April 2010. We present a summary of key findings from this evaluation. We pay particular attention to the issue of sustaining community participation in newly developed Primary Care Teams (PCTs) in the current and changing economic climate, an issue considered crucial if the documented positive impacts of the Joint Initiative are to be maintained and the potential for health gains in the longer term are to be realised.We then argue that the Joint Initiative referred to in this paper clearly provides a strong prototype for community participation in PCTs in Ireland. We also ask whether it can be replicated across all PCTs in the country and embedded as a core part of thinking and everyday health care. We highlight the need for research to build knowledge about the ways in which innovations such as this can be embedded into ongoing, routine healthcare practice. This research agenda will have relevance for policy makers, practitioners and evaluators in Ireland and other healthcare jurisdictions.
    Preview · Article · Apr 2012 · Primary Health Care Research & Development
  • Anne Macfarlane · Mary O'Reilly-de Brún
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    ABSTRACT: The role and merits of highly inductive research designs in qualitative health research are well established, and there has been a powerful proliferation of grounded theory method in the field. However, tight qualitative research designs informed by social theory can be useful to sensitize researchers to concepts and processes that they might not necessarily identify through inductive processes. In this article, we provide a reflexive account of our experience of using a theory-driven conceptual framework, the Normalization Process Model, in a qualitative evaluation of general practitioners' uptake of a free, pilot, language interpreting service in the Republic of Ireland. We reflect on our decisions about whether or not to use the Model, and describe our actual use of it to inform research questions, sampling, coding, and data analysis. We conclude with reflections on the added value that the Model and tight design brought to our research.
    No preview · Article · Dec 2011 · Qualitative Health Research
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    ABSTRACT: Implementation researchers have attempted to overcome the research-practice gap in e-health by developing tools that summarize and synthesize research evidence of factors that impede or facilitate implementation of innovation in healthcare settings. The e-Health Implementation Toolkit (e-HIT) is an example of such a tool that was designed within the context of the United Kingdom National Health Service to promote implementation of e-health services. Its utility in international settings is unknown. We conducted a qualitative evaluation of the e-HIT in use across four countries--Finland, Norway, Scotland, and Sweden. Data were generated using a combination of interview approaches (n = 22) to document e-HIT users' experiences of the tool to guide decision making about the selection of e-health pilot services and to monitor their progress over time. e-HIT users evaluated the tool positively in terms of its scope to organize and enhance their critical thinking about their implementation work and, importantly, to facilitate discussion between those involved in that work. It was easy to use in either its paper- or web-based format, and its visual elements were positively received. There were some minor criticisms of the e-HIT with some suggestions for content changes and comments about its design as a generic tool (rather than specific to sites and e-health services). However, overall, e-HIT users considered it to be a highly workable tool that they found useful, which they would use again, and which they would recommend to other e-health implementers. The use of the e-HIT is feasible and acceptable in a range of international contexts by a range of professionals for a range of different e-health systems.
    Full-text · Article · Nov 2011 · Implementation Science
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    ABSTRACT: Normalization Process Theory (NPT) can be used to explain implementation processes in health care relating to new technologies and complex interventions. This paper describes the processes by which we developed a simplified version of NPT for use by clinicians, managers, and policy makers, and which could be embedded in a web-enabled toolkit and on-line users manual. Between 2006 and 2010 we undertook four tasks. (i) We presented NPT to potential and actual users in multiple workshops, seminars, and presentations. (ii) Using what we discovered from these meetings, we decided to create a simplified set of statements and explanations expressing core constructs of the theory (iii) We circulated these statements to a criterion sample of 60 researchers, clinicians and others, using SurveyMonkey to collect qualitative textual data about their criticisms of the statements. (iv) We then reconstructed the statements and explanations to meet users' criticisms, embedded them in a web-enabled toolkit, and beta tested this 'in the wild'. On-line data collection was effective: over a four week period 50/60 participants responded using SurveyMonkey (40/60) or direct phone and email contact (10/60). An additional nine responses were received from people who had been sent the SurveyMonkey form by other respondents. Beta testing of the web enabled toolkit produced 13 responses, from 327 visits to http://www.normalizationprocess.org. Qualitative analysis of both sets of responses showed a high level of support for the statements but also showed that some statements poorly expressed their underlying constructs or overlapped with others. These were rewritten to take account of users' criticisms and then embedded in a web-enabled toolkit. As a result we were able translate the core constructs into a simplified set of statements that could be utilized by non-experts. Normalization Process Theory has been developed through transparent procedures at each stage of its life. The theory has been shown to be sufficiently robust to merit formal testing. This project has provided a user friendly version of NPT that can be embedded in a web-enabled toolkit and used as a heuristic device to think through implementation and integration problems.
    Full-text · Article · Sep 2011 · BMC Health Services Research
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    Hans-Olaf Pieper · Pauline Clerkin · Anne MacFarlane
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    ABSTRACT: Many western countries have policies of dispersal and direct provision accommodation (state-funded accommodation in an institutional centre) for asylum seekers. Most research focuses on its effect on the asylum seeking population. Little is known about the impact of direct provision accommodation on organisation and delivery of local primary care and social care services in the community. The aim of this research is to explore this issue. In 2005 a direct provision accommodation centre was opened in a rural area in Ireland. A retrospective qualitative case study was designed comprising in-depth interviews with 37 relevant stakeholders. Thematic analysis following the principles of framework analysis was applied. There was lack of advance notification to primary care and social care professionals and the community about the new accommodation centre. This caused anxiety and stress among relevant stakeholders. There was insufficient time to plan and prepare appropriate primary care and social care for the residents, causing a significant strain on service delivery. There was lack of clarity about how primary care and social care needs of the incoming residents were to be addressed. Interdisciplinary support systems developed informally between healthcare professionals. This ensured that residents of the accommodation centre were appropriately cared for. Direct provision accommodation impacts on the organisation and delivery of local primary care and social care services. There needs to be sufficient advance notification and inter-agency, inter-professional dialogue to manage this. Primary care and social care professionals working with asylum seekers should have access to training to enhance their skills for working in cross-cultural consultations.
    Full-text · Article · May 2011 · BMC Family Practice
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    Hans-Olaf Pieper · Anne MacFarlane
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    ABSTRACT: It is widely accepted that medical undergraduate and postgraduate education should address issues related to human diversity. Despite the growth of guidelines and training resources, little is known about primary healthcare professionals' perceptions about their work with patients from diverse communities. This research explored GP Registrars' views of their learning needs in relation to delivering effective healthcare to ethnically and culturally diverse patient populations. The study was based on a naturalistic inquiry design, involving qualitative methods. Current GP Registrars of the postgraduate GP Western Training Programme, Galway, Ireland, were invited to participate in focus groups. Three different focus groups were conducted with a total of 31 GP Registrar participants. A thematic analysis following the principles of framework analysis was applied. GP Registrars reported considerable professional uncertainty and occupational stress when consulting with patients from diverse communities. They perceived their training in relation to healthcare for patients from diverse backgrounds as inadequate and desired more training. They identified concrete learning needs, which were mainly related to factual knowledge, with less emphasis on communication skills and attitude awareness. Educators should take GP Registrars' views into account in the development of diversity training in medical education. GP Registrars' attention to specific knowledge related to human diversity may, nonetheless, be too narrow. This training should also encourage acknowledgment of the doctor's professional uncertainty, awareness of the doctor's own attitudes, and development of generic skills such as a patient-centred approach to best meet the needs of diverse population groups.
    Preview · Article · Apr 2011 · Education for Health Change in Learning & Practice
  • Brian S Buckley · Andrew W Murphy · Anne E MacFarlane
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    ABSTRACT: Understanding the views of the public is essential if generally acceptable policies are to be devised that balance research access to general practice patient records with protection of patients' privacy. However, few large studies have been conducted about public attitudes to research access to personal health information. A mixed methods study was performed. Informed by focus groups and literature review, a questionnaire was designed which assessed attitudes to research access to personal health information and factors that influence these. A postal survey was conducted of an electoral roll-based sample of the adult population of Ireland. Completed questionnaires were returned by 1575 (40.6%). Among the respondents, 67.5% were unwilling to allow GPs to decide when researchers could access identifiable personal health information. However, 89.5% said they would agree to ongoing consent arrangements, allowing the sharing by GPs of anonymous personal health information with researchers without the need for consent on a study-by-study basis. Increasing age (by each 10-year increment), being retired and primary level education only were significantly associated with an increased likelihood of agreeing that any personal health information could be shared on an ongoing basis: OR 1.39 (95% CI 1.18 to 1.63), 2.00 (95% CI 1.22 to 3.29) and 3.91 (95% CI 1.95 to 7.85), respectively. Although survey data can be prone to response biases, this study suggests that prior consent agreements allowing the supply by GPs of anonymous personal health information to researchers may be widely supported, and that populations willing to opt in to such arrangements may be sufficiently representative to facilitate valid and robust consent-dependent observational research.
    No preview · Article · Nov 2010 · Journal of medical ethics