ORCID Profile
0000-0002-4428-2826
Current Organisations
Macquarie University
,
The University of Texas System
,
University of Riyadh
,
Universitetet i Tromso
,
Bournemouth University
,
Havard University
,
Swansea University
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Publisher: American Psychological Association (APA)
Date: 02-2019
DOI: 10.1037/CCP0000356
Abstract: This group-randomized control trial examined the efficacy of guided coping and emotion regulatory self-reflection as a means to strengthen resilience by testing the effects of the training on anxiety and depression symptoms and perceived stressor frequency after an intensive stressor period. The s le was 226 officer cadets training at the Royal Military College, Australia. Cadets were randomized by platoon to the self-reflection ( There were no significant baseline differences in demographic or outcome variables between the intervention groups. On average, cadets commenced the resilience training with mild depression and anxiety symptoms. Analyses were conducted at the in idual-level after exploring group-level effects. No between-groups differences were observed at initial follow-up. At longer-term follow-up, improvements in mental health outcomes were observed for the self-reflection group, compared with the coping skills group, on depression (Cohen's Findings provide initial support for the use of guided self-reflection as an alternative to coping skills approaches to resilience training. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
Publisher: BMJ
Date: 29-05-2009
Abstract: This paper considers the scope of poetic representation for exploring notions of health and wellbeing in the testimony of Holocaust survivors. The paper is based on the representation, through poetic form, of testimony derived from multiple in-depth interviews with a Holocaust survivor, Anka, in south-east Wales. This paper concentrates on two of those interviews, the first a life story and the second an interview focusing on health, illness and wellbeing. Two poetic representations, one derived from each interview, provide ex les of the principal investigator's response to the oral testimony, and the authors explore how these forms can present authentic and rigorous data distillates without detracting from the emotive, contextualised and powerful messages of the original text. The poetic representations offer an analysis of the survivor's life experiences, especially in Auschwitz concentration c , and her personal perspective on her health and wellbeing. The authors discuss the value of poetic representation as a methodological approach, consider the poetic form for working with survivor stories and suggest how others might judge these pieces, to highlight the strengths and weaknesses of these alternative forms of data representation. They also consider the role of the researcher and Anka in creating the final product and the effect of Anka's voice on the researchers' work.
Publisher: SAGE Publications
Date: 16-02-2022
DOI: 10.1177/19375867221077469
Abstract: The aim of this study was to develop built environment (BE) design knowledge to support resilient healthcare by systematically reviewing the evidence-based design (EBD) literature. Although the EBD literature is vast, it has not made explicit its contribution to resilient healthcare, which is a key component of the highly complex health service. This review followed the steps recommended by the Preferred Reporting Items for Systematic reviews and Meta-Analyses method. After applying the inclusion and exclusion criteria, 43 journal papers were selected. The papers were analyzed in light of five guidelines for coping with complexity, allowing for the development of BE design knowledge that supports resilient healthcare. The design knowledge compiled by the review was structured according to four levels of abstraction: five design-meta principles, corresponding to the five complexity guidelines, seven design principles, 21 design prescriptions, and 58 practical ex les. The design knowledge emphasizes the interactions between the BE as physical infrastructure and the functions that it supports. The design knowledge is expected to be useful not only to architects but also to those involved in the functional design of health services as they interact with the BE. Furthermore, our proposal provides a knowledge template that can be continuously updated based on the experience of practitioners and academic research.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 26-10-2020
DOI: 10.1097/AUD.0000000000000932
Abstract: In this article, we examine ecological validity in hearing science from a qualitative methodological perspective. We present an overview of qualitative methods, presenting their key characteristics and contrasting these techniques with quantitative approaches to enquiry. We argue that ecological validity sits at the heart of the qualitative paradigm and seek to clearly emphasize the methodological gap that could be effectively filled by qualitative or mixed methods. In doing so, we discuss qualitative methods that may work particularly well in enhancing ecological validity in hearing science and explore their range of applications in this field. These approaches can be applied to a wide range of hearing health research questions to present a unique understanding of people’s experiences of disease and disability, indicating gradations of personal health and illness in nuanced ways. We acknowledge and commend the current expansion of qualitative methods within hearing science and present recommendations for increasing ecological validity, both in the design of future studies and in the context of the wider research cycle. We call on qualitative researchers to strive for transparency, rigor, and trustworthiness and highlight challenges to be overcome if qualitative methods are to contribute to effective, efficient research strategies. To facilitate the transference of high-quality research findings into practice, we stress the need for joined-up working to create a research culture that promotes coproduction of ecologically valid research designs, involving not only hearing researchers but also implementation scientists, hearing healthcare professionals and, most importantly, people with hearing loss for whom these efforts could make a difference.
Publisher: BMJ
Date: 03-2022
DOI: 10.1136/BMJOPEN-2021-058406
Abstract: Awareness of the benefits of cochlear implants is low, and barriers such as fear of surgery and ongoing rehabilitation have been noted. Perceived stigma associated with hearing loss also plays a key role, with many adults not wanting to appear old or be identified as a person with a disability. In effect, a cochlear implant makes deafness visible. New technologies have led to a smaller external profile for some types of cochlear implants, but qualitative assessments of benefit have not been explored. This study will examine cochlear implant aesthetics and cosmetics, and its impact on perceived stigma, social interactions, communication and quality of life. A particular focus will be the examination of totally implantable device concepts. A secondary aim is to understand what research techniques are best suited and most appealing for cochlear implant recipients, to assist in future study design and data collection methods. This study utilises a mixed-methods design. Three datasets will be collected from each participant with an expected s le size of 10–15 participants to allow for data saturation of themes elicited. Each participant will complete a demographic questionnaire, a quickfire survey (a short concise questionnaire on a topic of research familiarity and preference) and a semi-structured interview. Questionnaire and quickfire survey data will be analysed using descriptive statistics. Interviews will be transcribed and analysed thematically. All participants will be adults with more than 1 year of experience using cochlear implants. This study has been granted ethical approval from Macquarie University (HREC: 520211056232432) and meets the requirements set out in the National Statement on Ethical Conduct in Human Research. Study findings will be disseminated widely through international peer-reviewed journal articles, public and academic presentations, plain language summaries for participants and an executive summary for the project funder. This work was supported by Cochlear Limited (Cochlear Ltd). The funder will have no role in conducting or reporting on the study.
Publisher: Springer Science and Business Media LLC
Date: 18-04-2015
Publisher: BMJ
Date: 02-2020
DOI: 10.1136/BMJOPEN-2019-032636
Abstract: Sentinel lymph node biopsy (SLNB) is a diagnostic procedure developed in the 1990s. It is currently used to stage patients with primary cutaneous melanoma, provide prognostic information and guide management. The Australian Clinical Practice Guidelines state that SLNB should be considered for patients with cutaneous melanoma mm in thickness (or .8 mm with high-risk pathology features). Until recently, sentinel lymph node (SLN) status was used to identify patients who might benefit from a completion lymph node dissection, a procedure that is no longer routinely recommended. SLN status is now also being used to identify patients who might benefit from systemic adjuvant therapies such as anti-programmed cell death 1 (PD1) checkpoint inhibitor immunotherapy or BRAF-directed molecular targeted therapy, treatments that have significantly improved relapse-free survival for patients with resected stage III melanoma and improved overall survival of patients with unresectable stage III and stage IV melanoma. Australian and international data indicate that approximately half of eligible patients receive an SLNB. This mixed-methods study seeks to understand the structural, contextual and cultural factors affecting implementation of the SLNB guidelines. Data collection will include: (1) cross-sectional questionnaires and semistructured interviews with general practitioners and dermatologists (2) semistructured interviews with other healthcare professionals involved in the diagnosis and early definitive care of melanoma patients and key stakeholders including researchers, representatives of professional colleges, training organisations and consumer melanoma groups and (3) documentary analysis of documents from government, health services and non-government organisations. Descriptive analyses and multivariable regression models will be used to examine factors related to SLNB practices and attitudes. Qualitative data will be analysed using thematic analysis. Ethics approval has been granted by the University of Sydney. Results will be disseminated through publications and presentations to clinicians, patients, policymakers and researchers and will inform the development of strategies for implementing SLNB guidelines in Australia.
Publisher: BMJ
Date: 02-2023
DOI: 10.1136/BMJOPEN-2022-066270
Abstract: To undertake a synthesis of evidence-based research for seven innovative models of care to inform the development of new hospitals. Umbrella review. Interventions delivered inside and outside of acute care settings. Children and adults with one or more identified acute or chronic health conditions. PsycINFO, Ovid MEDLINE and CINAHL. Clinical indicators and mortality, healthcare utilisation, quality of life, self-management and self-care and patient knowledge. A total of 66 reviews were included, synthesising evidence from 1272 primary studies across the 7 models of care. Virtual care was the most common model studied, addressed by 47 (73%) of the reviews. Common outcomes evaluated across reviews were clinical indicators and mortality, healthcare utilisation, self-care and self-management, patient knowledge, quality of life and cost-effectiveness. The findings indicate that the innovative models of healthcare we identified in this review may be effective in managing patients with a range of acute and chronic conditions. Most of the included reviews reported evidence of comparable or improved care. A consideration of local infrastructure and in idual patient characteristics, such as health literacy, may be critical in determining the suitability of models of care for patients and their implementation in local health systems. 10.17605/OSF.IO/PS6ZU.
Publisher: Springer International Publishing
Date: 2019
Publisher: BMJ
Date: 05-2008
Abstract: Up to 30% of people who call for an emergency ambulance are, for various reasons, not conveyed to hospital. Across the UK, the majority of ambulance services have policies and procedures requiring ambulance crews to complete clinical documentation for these patients, as they do for patients who travel to hospital. However, studies have suggested that documentation does not get completed for a large proportion of non-conveyed patients. A qualitative study in one large ambulance service trust used focus groups to explore crew members' attitudes towards clinical documentation and non-conveyed patients. Considerable ambiguity was found: crews were aware of the need to "cover their backs" by completing clinical records, but at the same time expressed doubts about the value of this documentation. There appeared to be two main circumstances in which records were not completed. Firstly, there were the cases where crews may have been unable to obtain necessary information from patients who were intoxicated or otherwise uncooperative. Secondly, there were cases where the crews may not have recognised their encounter with a patient as having a clinical dimension, such as older people who had fallen but were apparently uninjured. These circumstances were combined with a lack of monitoring by managers of whether forms were being completed, and a disinclination on the part of some crew members to do what they regarded as unnecessary work. The low rates of completion of clinical records for non-conveyed patients appeared to result from crew members not believing they were important in every circumstance, combined with a lack of management focus. Low rates of completion may lead in turn to clinical risk and a risk of litigation if things go wrong.
Publisher: Springer Science and Business Media LLC
Date: 11-2013
Publisher: Springer Science and Business Media LLC
Date: 11-2013
Publisher: BMJ
Date: 2021
DOI: 10.1136/BMJOPEN-2020-043553
Abstract: Epilepsy is a common neurological condition affecting between 3% and 3.5% of the Australian population at some point in their lifetime. The effective management of chronic and complex conditions such as epilepsy requires person-centred and coordinated care across sectors, from primary to tertiary healthcare. Internationally, epilepsy nurse specialists are frequently identified as playing a vital role in improving the integration of epilepsy care and enhancing patient self-management. This workforce has not been the focus of research in Australia to date. This multistage mixed-method study examines the role and responsibilities of epilepsy nurses, particularly in primary and community care settings, across Australia, including through the provision of a nurse helpline service. A nationwide s le of 30 epilepsy nurses will be purposively recruited via advertisements distributed by epilepsy organisations and through word-of-mouth snowball s ling. Two stages (1 and 3) consist of a demographic questionnaire and semistructured interviews (in idual or group) with epilepsy nurse participants, with the thematic data analysis from this work informing the areas for focus in stage 3. Stage 2 comprises of a retrospective descriptive analysis of phone call data from Epilepsy Action Australia’s National Epilepsy Line service to identify types of users, their needs and reasons for using the service, and to characterise the range of activities undertaken by the nurse call takers. Ethics approval for this study was granted by Macquarie University (HREC: 52020668117612). Findings of the study will be published through peer-reviewed journal articles and summary reports to key stakeholders, and disseminated through public forums and academic conference presentations. Study findings will also be communicated to people living with epilepsy and families.
Publisher: SAGE Publications
Date: 06-09-2022
DOI: 10.1177/10497323221120501
Abstract: We report a novel approach of amalgamating implementation outcomes of acceptability and fidelity alongside context as a new way of qualitatively evaluating implementation outcomes and context of a precision medicine intervention. A rapid qualitative online proforma was co-designed with stakeholders and sent to a purposive s le of healthcare professionals involved in an early-phase clinical trial intervention. Data were analysed using Framework Analysis. A total of 24 out of 68 proformas were returned. Although some participants raised concerns about drug medication access issues, the main intervention was well accepted and understood across professional groups. Comprehension was enhanced through exposure to specialist multidisciplinary meeting arrangements. In conclusion, a rapid data collection tool and framework are now available to assess readily measurable, qualitative indicators of acceptability, fidelity of receipt and contextual fit within the dynamic precision medicine context.
Publisher: Public Library of Science (PLoS)
Date: 17-10-2018
Publisher: Routledge
Date: 12-05-2022
Publisher: Wiley
Date: 23-02-2012
DOI: 10.1111/J.1365-2648.2011.05938.X
Abstract: To report on the development of a ranked thematic list encompassing the positive and challenging exemplars of patient-centred professionalism in community nursing. There has been little research exploring what 'patient-centred professionalism' means to those working within the healthcare settings. Consensus methods, such as those developed through Nominal Group Work, can help establish the extent of agreement on a particular issue whilst overcoming some of the problems associated with group decision-making. Mixed methods studying through consultation workshops. The study took place in South-west Wales, UK between October 2009-September 2010. Thirty-four participants consisting of community nurses (9), newly qualifying nurses (13), nursing stakeholders (6) and members of the public (6) took part in the study. An adapted Nominal Group Work approach was used in five in idual consultation workshops: two with community nurses, one with newly qualifying nurses, one with stakeholders and one with members of the public followed by a mixed-group Forum event. Each of the five workshops resulted in the production of approximately ten positive and ten challenging exemplars of patient-centred professionalism. The thematization of these exemplars allowed the development of eight broad themes. The Forum event then provided a mechanism for ranking the importance of these themes. The patient, community nurse as a person and nursing ethos were ranked as the most important themes by study participants. The adapted Nominal Group Work approach was a useful method to allow the development of a ranked thematic list that illustrated the important positive and challenging exemplars of patient-centred professionalism in community nursing.
Publisher: BMJ
Date: 11-2022
DOI: 10.1136/BMJOPEN-2021-059330
Abstract: To address the challenges of rapidly changing healthcare, governments and health services are increasingly emphasising healthcare delivery models that are flexible, person centred, cost-effective and integrate hospital services more closely with primary healthcare and social services. In addition, such models increasingly embed consumer codesign, integration of services, and leverage digital technologies such as telehealth and sophisticated medical records systems. This paper provides a study protocol to describe a method to elicit consumer and healthcare provider needs and expectations for the development of innovative care models. A literature review identified six key models of care, supported by a common theme of consumer-focused care, along with the international evidence supporting the efficacy of these models. A mixed-methods study of the needs and expectations of consumer members and health providers who reside or work in the area of a new hospital catchment will be undertaken. They will complete a community-specific and provider-specific, short demographic questionnaire (delivered during the recruitment process) and be assigned to facilitator-coordinated online workshops comprising small focus groups. Follow-up interviews will be offered. Culturally and linguistically erse members and Aboriginal and Torres Strait Islander Elders and their communities will also be consulted. Data will be analysed thematically (qualitative) and statistically (quantitative), and findings synthesised using a triangulated approach. The results will be actively disseminated through peer-reviewed journals, conference presentations and in a report to stakeholders. This study was reviewed and approved by the relevant Ethics Committee in New South Wales, Australia.
Publisher: Wiley
Date: 05-12-2020
DOI: 10.1111/AJD.13518
Abstract: In melanoma management, sentinel lymph node biopsy (SLNB) is used to stage patients and to indicate prognosis. More recently, it has been used to select patients for adjuvant therapy. This study aimed to report knowledge of and attitudes towards SLNB for patients with melanoma among Australian dermatologists. Mixed methods study using cross‐sectional questionnaires ( n = 88) and semi‐structured interviews ( n = 13), May–September 2019. Of the dermatologists surveyed, 56% thought SLNB had an important role in melanoma management, 26% were unsure and 18% thought SLNB unimportant. Of the 92% who would discuss SLNB with their patients, the main stated value of SLNB was for assessing eligibility for adjuvant therapies (79%) only 60% indicated SLNB was of value for providing prognostic information, and just over half (53%) thought it could improve staging. Interview data indicated that attitudes towards SLNB are shifting among dermatologists, driven by data from landmark clinical trials and the influence of professional networks. Accordingly, interviewees adopted one of three positions in relation to SLNB: (a) believed in utility of SLNB and adhered to the guidelines (b) were unconvinced about utility of SLNB but adhered to the guidelines and (c) were unconvinced about utility of SLNB and did not adhere to the guidelines. Although most of the dermatologists surveyed were familiar with and follow the SLNB recommendations, some disagreement with and distrust of the recommendations was evident. Greater acceptance of the SLNB recommendations appeared to be driven by the improved outcomes demonstrated in stage III patients receiving adjuvant systemic therapy.
Publisher: MDPI AG
Date: 03-2018
DOI: 10.3390/SOC8010015
Publisher: Springer Science and Business Media LLC
Date: 15-10-2019
DOI: 10.1186/S12876-019-1085-Y
Abstract: A nested qualitative interview study within the CONSTRUCT trial was conducted to explore experiences and perceptions of patients with acute severe ulcerative colitis following treatment with infliximab or ciclosporin, surgery, or other medication. Two hundred seventy patients with steroid-resistant ulcerative colitis were randomised to either infliximab or ciclosporin. Interviews were conducted with 20 trial participants. Thirty-five data capture events took place in total, 20 interviews conducted 3 months after treatment and a further 15 interviews with the same cohort as second interviews at 12 months. Disease duration varied but similar stories emerged about how people adjusted to living with ulcerative colitis. Issues raised by patients included the debilitating effect of the disease on quality of life, living with the unpredictability of symptoms and treatment, dealing with embarrassment and stigma and the desire to share knowledge of the disease with others to combat the private nature of this debilitating illness and bring greater visibility to patient experience of symptoms and outcomes. Patients were more positive about treatment with infliximab than ciclosporin, mainly due to the cumbersome intravenous regimen required for ciclosporin. Prompt diagnosis is required and early reporting of changes in symptoms is encouraged to ensure appropriate treatment. This trial is registered with the ISRCTN registry number ISRCTN22663589 . The date of registration was 16/05/2008.
Publisher: Elsevier BV
Date: 05-2019
Publisher: Springer Science and Business Media LLC
Date: 16-11-2015
Publisher: Informa UK Limited
Date: 02-2013
Publisher: Wiley
Date: 15-02-2005
Publisher: Elsevier BV
Date: 10-2020
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 26-10-2020
DOI: 10.1097/AUD.0000000000000944
Abstract: Ecological validity is a relatively new concept in hearing science. It has been cited as relevant with increasing frequency in publications over the past 20 years, but without any formal conceptual basis or clear motive. The sixth Eriksholm Workshop was convened to develop a deeper understanding of the concept for the purpose of applying it in hearing research in a consistent and productive manner. Inspired by relevant debate within the field of psychology, and taking into account the World Health Organization’s International Classification of Functioning, Disability, and Health framework, the attendees at the workshop reached a consensus on the following definition: “In hearing science, ecological validity refers to the degree to which research findings reflect real-life hearing-related function, activity, or participation.” Four broad purposes for striving for greater ecological validity in hearing research were determined: A (Understanding) better understanding the role of hearing in everyday life B (Development) supporting the development of improved procedures and interventions C (Assessment) facilitating improved methods for assessing and predicting ability to accomplish real-world tasks and D (Integration and In idualization) enabling more integrated and in idualized care. Discussions considered the effects of variables and phenomena commonly present in hearing-related research on the level of ecological validity of outcomes, supported by ex les from a few selected outcome domains and for different types of studies. Illustrated with ex les, potential strategies were offered for promoting a high level of ecological validity in a study and for how to evaluate the level of ecological validity of a study. Areas in particular that could benefit from more research to advance ecological validity in hearing science include: (1) understanding the processes of hearing and communication in everyday listening situations, and specifically the factors that make listening difficult in everyday situations (2) developing new test paradigms that include more than one person (e.g., to encompass the interactive nature of everyday communication) and that are integrative of other factors that interact with hearing in real-life function (3) integrating new and emerging technologies (e.g., virtual reality) with established test methods and (4) identifying the key variables and phenomena affecting the level of ecological validity to develop verifiable ways to increase ecological validity and derive a set of benchmarks to strive for.
Publisher: Wiley
Date: 06-2010
Publisher: Springer Singapore
Date: 2019
Publisher: Elsevier BV
Date: 02-2018
DOI: 10.1016/J.YEBEH.2017.11.022
Abstract: This study examined the health service utilization and hospital treatment cost of in iduals with epilepsy by age group, mortality within 30days, and surgical outcomes for in iduals with refractory epilepsy in New South Wales (NSW), Australia. A retrospective examination of linked hospitalization and mortality data for in iduals hospitalized with a diagnosis of epilepsy during 2012-2016. Hospitalized incidence rates per 1000 population were calculated, and negative binomial regression was used to examine temporal trends. Mortality within 30days of hospitalization was identified, along with cause of death. There were 44,722 hospitalizations during the five-year period, with a hospitalization rate of 85.6 per 1000 population (95% confidence interval (CI): 84.7-86.4). Total hospital treatment costs were AUD$402.9 million. Children aged ≤17years accounted for 32.0% of hospitalizations. Just over half to two-thirds of hospitalizations for each age group were for a principal diagnosis of epilepsy, with 2976 hospitalizations of in iduals for status epilepticus. The overall mean hospital length of stay (LOS) for epilepsy hospitalizations was 5.1days (standard deviation (SD)=9.0). Thirty-day mortality was highest for in iduals aged ≥65years (6.7%), and epilepsy was identified as the underlying cause of death for 18.2% of deaths. This research has provided insight into the healthcare utilization profiles of in iduals with epilepsy at different ages. Epilepsy hospitalizations constitute a substantial cost to the healthcare system, and better overall management of seizures and comorbid conditions is likely to lead to a reduction in the need for hospitalization.
Publisher: Springer Science and Business Media LLC
Date: 27-05-2020
DOI: 10.1186/S13012-020-00991-3
Abstract: Clinical Practice Guidelines (CPGs) synthesize the best available evidence to guide clinician and patient decision making. There are a multitude of barriers and facilitators to clinicians adhering to CPGs however, little is known about active cancer treatment CPG adherence specifically. This systematic review sought to identify clinician attitudes, and perceived barriers and facilitators to active cancer treatment CPG adherence. A systematic search was undertaken of five databases Ovid Medline, PsychInfo, Embase, Scopus, CINAHL, and PROQUEST. The retrieved abstracts were screened for eligibility against inclusion criteria, and a full text review was conducted of all eligible studies. Data were extracted, and a quality assessment was conducted of all included studies. The qualitative papers were thematically analyzed. Attitudes, barriers, and facilitating factors extracted from the quantitative papers were categorized within the qualitative thematic framework. The search resulted in the identification of 9676 titles. After duplicates were removed, abstracts screened, and full texts reviewed, 15 studies were included. Four themes were identified which related to negative clinician attitudes and barriers to active cancer treatment CPG adherence: (1) concern over CPG content and currency of CPGs (2) concern about the evidence underpinning CPGs (3) clinician uncertainty and negative perceptions of CPGs and (4) organizational and patient factors. The review also identified four themes related to positive attitudes and facilitators to active cancer treatment CPG adherence: (5) CPG accessibility and ease of use (6) endorsement and dissemination of CPGs and adequate access to treatment facilities and resources (7) awareness of CPGs and belief in their relevance and (8) belief that CPGs support decision making, improve patient care, reduce clinical variation, and reduce costs. These results highlight that adherence to active cancer treatment CPG recommendations by oncology clinicians is influenced by multiple factors such as attitudes, practices, and access to resources. The review has also revealed many similarities and differences in the factors associated with general CPG, and active cancer treatment CPG, adherence. These findings will inform tailored implementation strategies to increase adherence to cancer treatment CPGs. PROSPERO (2019) CRD42019125748 .
Publisher: figshare
Date: 2020
Publisher: BMJ
Date: 12-2018
DOI: 10.1136/BMJOPEN-2018-022163
Abstract: Self-management is widely promoted but less attention is focused on the work required from patients. To date, many in iduals struggle to practise self-management. ‘Patient work’, a concept that examines the ‘work’ involved in self-management, is an approach to understanding the tasks, effort, time and context from patient perspective. The purpose of our study is to use a novel approach combining non-obstructive observations via digital devices with in-depth qualitative data about health behaviours and motivations, to capture the full range of patient work experienced by people with type 2 diabetes and chronic comorbidities. It aims to yield comprehensive insights about ‘what works’ in self-management, potentially extending to populations with other chronic health conditions. This mixed-methods observational study involves a (1) prestudy interview and questionnaires, (2) a 24-hour period during which participants wear a camera and complete a time-use diary, and a (3) poststudy interview and study feedback. Adult participants living with type 2 diabetes with at least one chronic comorbidity will be recruited using purposive s ling to obtain a balanced gender ratio and of participants using insulin and those using only oral medication. Interviews will be analysed using thematic analysis. Data captured by digital devices, diaries and questionnaires will be used to analyse the duration, time, context and patterns of health-related behaviours. The study was approved by the Macquarie University Human Research Ethics Committee for Medical Sciences (reference number 5201700718). Participants will carry a wallet-sized card that explains the purpose of the study to third parties, and can remove the camera at any stage. Before the poststudy interview begins, participants will view the camera images in private and can delete any images. Should any images be used in future publications or presentations, identifying features such as human faces and names will be obscured.
Publisher: Springer Science and Business Media LLC
Date: 31-05-2011
Publisher: Springer Science and Business Media LLC
Date: 15-01-2019
Publisher: Elsevier BV
Date: 09-2023
Publisher: Elsevier BV
Date: 04-2020
Publisher: Wiley
Date: 23-08-2001
DOI: 10.1046/J.1365-2648.2001.01853.X
Abstract: This paper is based on the rationale that misuse of methodological notions in research publications lays research studies open to criticism and dismissal. In search of 'best research practice', this paper aims to examine the different qualities of four major qualitative methodologies: ethnography, descriptive phenomenology, interpretative phenomenology/hermeneutics and critical social theory. The study presents a critical overview of methodological decision-making, illustrating the sorts of issues researchers must consider in order to justify to the readership and to themselves the employment of a particular methodology. This is presented alongside a general overview of qualitative research and a précis of each of the major qualitative methodologies. The paper describes the methodologies, salient features, and examines methodological similarities and differences. The paper concludes by examining the need for methodological rigour within the framework of the National Health Service (NHS) Executive's drive for evidence-based practice in health care. It is hoped that the paper will stimulate a deeper exploration of methodological rigour in future research publications.
Publisher: Wiley
Date: 05-05-2009
Publisher: F1000 Research Ltd
Date: 13-02-2014
DOI: 10.12688/F1000RESEARCH.3-42.V1
Abstract: Objective: The purpose of the study was to determine what patients, professionals and significant others regarded as the most important positive- and challenging aspects of Pulmonary Rehabilitation Programmes for patients with Chronic Obstructive Pulmonary Disease (COPD) and to gain insight into how such programmes could be developed and improved. Method: A modified Nominal Group Technique method was used in three consultation workshops (one with COPD patients who had recently undertaken a Pulmonary Rehabilitation Programme one with ‘significant others’ of the same patients one with secondary care professionals who deliver the Pulmonary Rehabilitation Programme). Results: Each of three workshops resulted in the production of approximately ten positive- and ten challenging aspects related to Pulmonary Rehabilitation Programmes. These were further developed by a process of thematisation into seven broad themes. The most important was ‘ the patient ’, followed by ‘ physical health ’ jointly ranked as third were: ‘ mental health ’ and ‘ knowledge and education ’. ‘ The programme ’ and ‘ professional characteristics ’ were jointly ranked as fifth, with ‘ the future ’ being ranked as the least important theme. Conclusions: The modified Nominal Group Technique method allowed the development of a ranked thematic list that illustrated the important positive- and challenging aspects of Pulmonary Rehabilitation Programmes for patients with COPD. These themes should be core to planning future Pulmonary Rehabilitation Programmes, particularly if patients and carer views are to be considered.
Publisher: BMJ
Date: 05-2017
Publisher: No publisher found
Date: 2022
Publisher: BMJ
Date: 06-2020
DOI: 10.1136/BMJOPEN-2019-034522
Abstract: Effective implementation of a research Program requires an actionable plan to guide execution. To assess the actionability and success of that plan, both scientific and implementation elements must be taken into account. The aim of this study is to assess the ‘Zero Childhood Cancer Personalised Medicine Program’ (the Zero Program), an Australian first-ever and most comprehensive personalised medicine programme for children with high-risk or relapsed cancer, in terms of its structure, process and implementational effect. We will assess Program delivery mechanisms. The development of the implementation and evaluation strategy will concentrate on the work of the Zero Program as a complex whole. This includes the structure of collaborative links across stakeholder groups involved in Program development and delivery, changes to collaborative relationships over time and the impact of group working on Program outcomes. We are applying a mixed-methods design including: a rapid ethnography (observations of stakeholder interactions and informal conversations), Program professionals’ completion of a rapid health implementation proforma and a social network analysis. Formative evaluations of the implementation science effects, applying feedback techniques, for ex le, Formative Evaluation Feedback Loops and the Zero Program professionals’ feedback, will determine where Program tailoring may be needed. A repeat of the social network analysis downstream will examine network changes over time, followed by an expert panel using the expert recommendations for implementing change to assess the integration of implementation strategies into the Program structure. A summative evaluation of the Program will bring the research elements together, leading to comprehensive data triangulation and determining the sustainability and implementational effects of Program delivery. Ethical approval for this study has been granted by Hunter New England Research Ethics Committee, New South Wales, Australia (approval ref: 2019/ETH12025). Knowledge translation will be achieved through publications, reports and conference presentations to healthcare professionals, patients, families and researchers. NCT03336931 Pre-results.
Publisher: Wiley
Date: 16-05-2019
DOI: 10.1111/HEX.12912
Publisher: Wiley
Date: 09-12-2022
DOI: 10.1111/JOCN.16582
Abstract: The aim of this study is to enhance the understanding of the core elements and influencing factors on the community‐based epilepsy nurse's role and responsibilities. Internationally, epilepsy nurse specialists play a key role in providing person‐centred care and management of epilepsy but there is a gap in understanding of their role in the community. A national three‐stage, mixed‐method study was conducted. One‐on‐one, in‐depth semi‐structured qualitative interviews were conducted online with 12 community‐based epilepsy nurses (Stage 1) retrospective analysis of data collected from the National Epilepsy Line, a nurse‐led community helpline (Stage 2) and focus group conducted with four epilepsy nurses, to delve further into emerging findings (Stage 3). A thematic analysis was conducted in Stages 1 and 3, and a descriptive statistical analysis of Stage 2 data. Consolidated Criteria for Reporting Qualitative studies checklist was followed for reporting. Three key themes emerged: (1) The epilepsy nurse career trajectory highlighted a lack of standardised qualifications, competencies, and career opportunities. (2) The key components of the epilepsy nurse role explored role ersity, responsibilities, and models of practice in the management of living with epilepsy, and experiences navigating complex fragmented systems and practices. (3) Shifting work practices detailed the adapting work practices, impacted by changing service demands, including COVID‐19 pandemic experiences, role boundaries, funding, and resource availability. Community epilepsy nurses play a pivotal role in providing holistic, person‐centred epilepsy management They contribute to identifying and addressing service gaps through innovating and implementing change in service design and delivery. Epilepsy nurses' person‐centred approach to epilepsy management is influenced by the limited investment in epilepsy‐specific integrated care initiatives, and their perceived value is impacted by the lack of national standardisation of their role and scope of practice. Only epilepsy nurses' perspectives were sought.
Publisher: BMJ
Date: 02-2017
Publisher: BMJ
Date: 04-2014
Publisher: Elsevier BV
Date: 08-2018
DOI: 10.1016/J.JCLINEPI.2018.04.014
Abstract: To develop and undertake initial validation of a patient-reported outcome measure to assess health-related quality of life in patients with breast cancer-related upper limb lymphedema (ULL). We developed and validated the Upper Limb Lymphedema Quality of Life (ULLQoL) scale in two stages: devising the items and pretesting with patients and clinicians longitudinal validation to test its psychometric properties-underlying dimensions, internal consistency, test-retest reliability, construct validity, and responsiveness. Patients with ULL were recruited from two outpatient clinics. We derived the ULLQoL scale from a pool of 98 items generated by patients. After further consultation, we produced the draft ULLQoL scale. For validation, 103 patients with ULL completed the draft scale and two generic health measures: SF-36 and ED-5D-3L. Psychometric analysis identified two components, physical and emotional well-being, with good internal consistency and test-retest reliability. Significant correlations with SF-36, EQ-5D-3L, and percentage excess limb volume confirmed construct validity. The ULLQoL scale showed good responsiveness to change reported by lymphedema patients and moderate to large effect sizes. The 14-item ULLQoL scale is a robust ULL-specific measure that is feasible and valid to use in both the clinical and research settings.
Publisher: BMJ
Date: 08-2021
DOI: 10.1136/BMJOPEN-2021-050377
Abstract: To identify the risk factors associated with complaints, malpractice claims and impaired performance in medical practitioners. Systematic review. Ovid-Medline, Ovid Embase, Scopus and Cochrane Central Register of Controlled Trials were searched from 2011 until March 2020. Reference lists and Google were also handsearched. Sixty-seven peer-reviewed papers and three grey literature publications from 2011 to March 2020 were reviewed by pairs of independent reviewers. Twenty-three key factors identified, which were categorised as demographic or workplace related. Gender, age, years spent in practice and greater number of patient lists were associated with higher risk of malpractice claim or complaint. Risk factors associated with physician impaired performance included substance abuse and burn-out. It is likely that risk factors are interdependent with no single factor as a strong predictor of a doctor’s risk to the public. Risk factors for malpractice claim or complaint are likely to be country specific due to differences in governance structures, processes and funding. Risk factors for impaired performance are likely to be specialty specific due to differences in work culture and access to substances. New ways of supporting doctors might be developed, using risk factor data to reduce adverse events and patient harm. PROSPERO registration number: CRD42020182045.
Publisher: National Institute for Health and Care Research
Date: 06-2016
DOI: 10.3310/HTA20440
Abstract: The efficacy of infliximab and ciclosporin in treating severe ulcerative colitis (UC) is proven, but there has been no comparative evaluation of effectiveness. To compare the clinical effectiveness and cost-effectiveness of infliximab and ciclosporin in treating steroid-resistant acute severe UC. Between May 2010 and February 2013 we recruited 270 participants from 52 hospitals in England, Scotland and Wales to an open-label parallel-group, pragmatic randomised trial. Consented patients admitted with severe colitis completed baseline quality-of-life questionnaires before receiving intravenous hydrocortisone. If they failed to respond within about 5 days, and met other inclusion criteria, we invited them to participate and used a web-based adaptive randomisation algorithm to allocate them in equal proportions between 5 mg/kg of intravenous infliximab at 0, 2 and 6 weeks or 2 mg/kg/day of intravenous ciclosporin for 7 days followed by 5.5 mg/kg/day of oral ciclosporin until 12 weeks from randomisation. Further treatment was at the discretion of physicians responsible for clinical management. The primary outcome was quality-adjusted survival (QAS): the area under the curve (AUC) of scores derived from Crohn’s and Ulcerative Colitis Questionnaires completed by participants at 3 and 6 months, and then 6-monthly over 1–3 years, more frequently after surgery. Secondary outcomes collected simultaneously included European Quality of Life-5 Dimensions (EQ-5D) scores and NHS resource use to estimate cost-effectiveness. Blinding was possible only for data analysts. We interviewed 20 trial participants and 23 participating professionals. Funded data collection finished in March 2014. Most participants consented to complete annual questionnaires and for us to analyse their routinely collected health data over 10 years. The 135 participants in each group were well matched at baseline. In 121 participants analysed in each group, we found no significant difference between infliximab and ciclosporin in QAS [mean difference in AUC/day 0.0297 favouring ciclosporin, 95% confidence interval (CI) –0.0088 to 0.0682 p = 0.129] EQ-5D scores (quality-adjusted life-year mean difference 0.021 favouring ciclosporin, 95% CI –0.032 to 0.096 p = 0.350) Short Form questionnaire-6 Dimensions scores (mean difference 0.0051 favouring ciclosporin, 95% CI –0.0250 to 0.0353 p = 0.737). There was no statistically significant difference in colectomy rates [odds ratio (OR) 1.350 favouring infliximab, 95% CI 0.832 to 2.188 p = 0.223] numbers of serious adverse reactions (event ratio = 0.938 favouring ciclosporin, 95% CI 0.590 to 1.493 p = 0.788) participants with serious adverse reactions (OR 0.660 favouring ciclosporin, 95% CI 0.282 to 1.546 p = 0.338) numbers of serious adverse events (event ratio 1.075 favouring infliximab, 95% CI 0.603 to 1.917 p = 0.807) participants with serious adverse events (OR 0.999 favouring infliximab, 95% CI 0.473 to 2.114 p = 0.998) deaths (all three who died received infliximab p = 0.247) or concomitant use of immunosuppressants. The lower cost of ciclosporin led to lower total NHS costs (mean difference –£5632, 95% CI –£8305 to –£2773 p 0.001). Interviews highlighted the debilitating effect of UC participants were more positive about infliximab than ciclosporin. Professionals reported advantages and disadvantages with both drugs, but nurses disliked the intravenous ciclosporin. Total cost to the NHS was considerably higher for infliximab than ciclosporin. Nevertheless, there was no significant difference between the two drugs in clinical effectiveness, colectomy rates, incidence of SAEs or reactions, or mortality, when measured 1–3 years post treatment. To assess long-term outcome participants will be followed up for 10 years post randomisation, using questionnaires and routinely collected data. Further studies will be needed to evaluate the efficacy and effectiveness of new anti-tumour necrosis factor drugs and formulations of ciclosporin. Current Controlled Trials ISRCTN22663589. This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment Vol. 20, No. 44. See the NIHR Journals Library website for further project information.
Publisher: Elsevier BV
Date: 11-2021
Publisher: Elsevier BV
Date: 04-2015
DOI: 10.1016/J.YEBEH.2015.01.040
Abstract: This review paper makes the case for the usefulness of qualitative research methods in the context of epilepsy research. It begins with an assessment of the current state of epilepsy literature and identifies gaps especially in the following: research in 'developing' countries and research around surgery for adults with epilepsy. It makes the case that disclosure of people's behaviors, actions, and reactions in different, often complex health-care situations can indicate how they bring meaning to their disease experiences and support needs. It shows the value of encouraging work that clarifies how patients manage their illness and how they understand changes in their health and well-being over the life course of their illness and how health-care professionals and other stakeholder groups care for those with epilepsy. The paper suggests a range of methods for addressing gaps in the literature and highlights a range of data collection, data analysis, and data interpretation and synthesis techniques that are appropriate in this context. It pays particular attention to the strengths of qualitative applications in mixed-methods research using an ex le from a recent ulcerative colitis drug trial that indicates how they can be integrated into study findings, add rich description, and enhance study outcomes. Ethnographic methodology is also presented, as a way of offering rare access to the 'lived experience' dimension, before the paper concludes with an assessment of the qualitative criteria of credibility, dependability, transferability, and confirmability for judging a study's 'trustworthiness'. The criteria evidence not only the trustworthiness of data and findings but also the ways in which a study has approached any challenges inherent in its research design.
Publisher: Wiley
Date: 30-10-2008
Publisher: BMJ
Date: 04-2022
DOI: 10.1136/BMJOPEN-2021-057335
Abstract: This scoping review aims to synthesise the current evidence on the inclusion and effectiveness of integrating evidence-based medicine (EBM) and shared decision-making (SDM) into training courses for doctors in training to enhance patient care. Both EBM and SDM appear to be taught separately and their combined role in providing high-quality patient care has not yet been explored. Scoping review of literature from January 2017 to June 2021. Any setting where doctors in training could undertake EBM and/or SDM courses (hospitals, universities, clinics and online). Doctors in training (also known as junior doctors, residents, registrars, trainees, fellows) defined as medical graduates undertaking further training to establish a career pathway. Searches were conducted in the databases Medline, Embase, Scopus and Cochrane Library. Bibliographies of included articles and their cited references were hand searched and assessed for inclusion. Included studies described training and outcomes of either EBM, SDM or both. Reported outcomes included EBM knowledge and skill tests, attitude surveys, SDM checklists and surveys and patient and doctor experience data obtained from surveys, focus groups and interviews. Of the 26 included studies, 15 described EBM training courses, 10 described SDM training courses and 1 course combined both EBM and SDM. Courses were heterogeneous in their content and outcomes, making comparisons difficult. EBM courses prioritised quantitative outcome assessments and linked knowledge and skills, such as critical appraisal, but overlooked other key elements of patient-centred care including SDM. SDM and EBM are taught separately in most training courses. The inclusion of SDM, evaluated by qualitative assessments, is currently omitted, yet could provide a more person-centred care focus in EBM courses and should be investigated to increase our knowledge of the effectiveness of such courses and their role in improving doctors’ skills and patient care. A protocol for this review has been published and contains further details of the methodology.
Publisher: Springer Science and Business Media LLC
Date: 23-08-2009
Publisher: SAGE Publications
Date: 24-07-2016
Abstract: In this article, we explore the role of ‘place’ in shaping people’s illness experiences through a data-led inductive case-study based on experiential data from people living with myalgic encephalomyelitis (ME) in Norway. Our main aim is to understand how they experience, interpret and attach meaning to various places in which they reside, and how they construct the course of a life influenced by chronic illness. The study is based on stories containing photographs and written texts, received from 10 women and men. In their stories, they describe those places where they experience their illness in the least and most taxing ways. Through a narrative and photographic analysis of their stories, we explore how they perceive the relationship between place and illness as experienced, managed and endured. Our analysis is based on a place-sensitive sociology, in which we approach place both as physicality and a symbolic construction. The participants describe how a wide range of places are intimately linked to their illness experiences, and they interpret these links by referring to both physical and symbolic factors. They describe their lives in terms of a need for equilibrium between activity and rest. Risk is a strong underlying theme: whatever they do, they risk losing something. Most of all, the participants describe how they are looking for places to escape to and from. Places to escape to are those places where privacy and peace can be found, which primarily revolve around being at home. Places to escape from are those places that make their energy ‘slowly ebb away’.
Publisher: JMIR Publications Inc.
Date: 15-07-2021
DOI: 10.2196/25992
Abstract: The experiences of patients change throughout their illness trajectory and differ according to their medical history, but digital support tools are often designed for one specific moment in time and do not change with the patient as their health state changes. This presents a fragmented support pattern where patients have to move from one app to another as they move between health states, and some subpopulations of patients do not have their needs addressed at all. This study aims to investigate how patient work evolves over time for those living with type 2 diabetes mellitus and chronic multimorbidity, and explore the implications for digital support system design. In total, 26 patients with type 2 diabetes mellitus and chronic multimorbidity were recruited. Each interview was conducted twice, and interviews were transcribed and analyzed according to the Chronic Illness Trajectory Model. Four unique illness trajectories were identified with different patient work goals and needs: living with stable chronic conditions involves patients seeking to make patient work as routinized and invisible as possible dealing with cycles of acute or crisis episodes included heavily multimorbid patients who sought support with therapy adherence responding to unstable changes described patients currently experiencing rapid health changes and increasing patient work intensity and coming back from crisis focused on patients coping with a loss of normalcy. Patient work changes over time based on the experiences of the in idual, and its timing and trajectory need to be considered when designing digital support interventions. RR2-10.1136/bmjopen-2018-022163
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 09-2018
DOI: 10.1097/AUD.0000000000000553
Abstract: In iduals with hearing loss often report a need for increased effort when listening, particularly in challenging acoustic environments. Despite audiologists’ recognition of the impact of listening effort on in iduals’ quality of life, there are currently no standardized clinical measures of listening effort, including patient-reported outcome measures (PROMs). To generate items and content for a new PROM, this qualitative study explored the perceptions, understanding, and experiences of listening effort in adults with severe-profound sensorineural hearing loss before and after cochlear implantation. Three focus groups (1 to 3) were conducted. Purposive s ling was used to recruit 17 participants from a cochlear implant (CI) center in the United Kingdom. The participants included adults (n = 15, mean age = 64.1 years, range 42 to 84 years) with acquired severe-profound sensorineural hearing loss who satisfied the UK’s national candidacy criteria for cochlear implantation and their normal-hearing significant others (n = 2). Participants were CI candidates who used hearing aids (HAs) and were awaiting CI surgery or CI recipients who used a unilateral CI or a CI and contralateral HA (CI + HA). Data from a pilot focus group conducted with 2 CI recipients were included in the analysis. The data, verbatim transcripts of the focus group proceedings, were analyzed qualitatively using constructivist grounded theory (GT) methodology. A GT of listening effort in cochlear implantation was developed from participants’ accounts. The participants provided rich, nuanced descriptions of the complex and multidimensional nature of their listening effort. Interpreting and integrating these descriptions through GT methodology, listening effort was described as the mental energy required to attend to and process the auditory signal, as well as the effort required to adapt to, and compensate for, a hearing loss. Analyses also suggested that listening effort for most participants was motivated by a need to maintain a sense of social connectedness (i.e., the subjective awareness of being in touch with one’s social world). Before implantation, low social connectedness in the presence of high listening effort encouraged self-alienating behaviors and resulted in social isolation with adverse effects for participant’s well-being and quality of life. A CI moderated but did not remove the requirement for listening effort. Listening effort, in combination with the improved auditory signal supplied by the CI, enabled most participants to listen and communicate more effectively. These participants reported a restored sense of social connectedness and an acceptance of the continued need for listening effort. Social connectedness, effort-reward balance, and listening effort as a multidimensional phenomenon were the core constructs identified as important to participants’ experiences and understanding of listening effort. The study’s findings suggest: (1) perceived listening effort is related to social and psychological factors and (2) these factors may influence how in iduals with hearing loss report on the actual cognitive processing demands of listening. These findings provide evidence in support of the Framework for Understanding Effortful Listening a heuristic that describes listening effort as a function of both motivation and demands on cognitive capacity. This GT will inform item development and establish the content validity for a new PROM for measuring listening effort.
Publisher: Wiley
Date: 28-08-2008
Publisher: Wiley
Date: 04-1997
DOI: 10.1046/J.1365-2648.1997.1997025673.X
Abstract: This paper describes a district nursing study that considered the experiences and responses of primary health care professionals and their patients to changes taking place within the community. As a qualitative study it employed interviews as the main method of data collection and was informed by both ethnography and interpretative phenomenology. Forty-three study participants were interviewed, eliciting opinion on whether care is more than just a hands-on activity, whether patient need is being met and to what extent service policy is in tune with care delivery. Describing the views of primary health care professionals and patients in order to illustrate the complexity of the district nursing service and professional roles, the paper finds little shared vision between staff and managers of each other's responsibilities. It concludes that a more holistic approach to understanding professional roles is needed in order to satisfy the differing agendas of managers, staff and patients. It propounds the need for closer collaborative practice between health care professionals, for it finds that they value the ability to communicate as an essential element of their jobs. It reflects that, without such collaboration, it will be difficult for nurses to take a lead position on changes shaping community care.
Publisher: SAGE Publications
Date: 2022
DOI: 10.1177/16094069221103097
Abstract: Our implementation science study focuses on implementing a new way of practice and offers methodological specificity about how to rapidly investigate an in idually tailored precision medicine intervention. A qualitative study advancing a new methodology for speedily identifying barriers and enablers to implementation in the context of childhood cancer. Data were collected through rapid ethnography, coded using the Consolidated Framework for Implementation Research, and analysed by Sentiment Analysis. Thirty-eight data collection events occurred during 14 multidisciplinary tumour board meetings, 14 curation meetings, and 10 informal conversations. Sentiment Analysis distilled Consolidated Framework for Implementation Research codes to reveal key barriers and enablers to implementation. A traffic light labelling system has been used to present levels of positivity and negativity (green for strong enablers and red for strong barriers), highlighting levels of concern regarding implementation. Within the intervention design characteristics, “Adaptability” was the strongest enabler and “Design quality and safety” the strongest barrier. Among the contextual factors: “Networks and communication” were the strongest enabler, and “Available resources” were the strongest barrier. Overall, there was a higher percentage of negative sentiment towards intervention design characteristics and contextual factors than positive sentiment, while more concerns were raised about intervention design factors than contextual factors. This study offers a rapid qualitative data collection and analytic methodological roadmap for establishing barriers and enablers to a paediatric precision medicine intervention.
Publisher: BMJ
Date: 06-2023
DOI: 10.1136/BMJOPEN-2022-070799
Abstract: Large-scale, multisite hospital improvement initiatives can advance high-quality care for patients. Implementation support is key to adoption of change in this context. Strategies that foster collaboration within local teams, across sites and between initiative developers and users are important. However not all implementation strategies are successful in all settings, sometimes realising poor or unintended outcomes. Our objective here is to develop guiding principles for effective collaborative implementation strategies for multi-site hospital initiatives. Mixed-method realist evaluation. Realist studies aim to examine the underlying theories that explain differing outcomes, identifying mechanisms and contextual factors that may trigger them. We report on collaborative strategies used in four multi-site initiatives conducted in all public hospitals in New South Wales, Australia (n ). Using an iterative process, information was gathered on collaborative implementation strategies used, then initial programme theories hypothesised to underlie the strategies’ outcomes were surfaced using a realist dialogic approach. A realist interview schedule was developed to elicit evidence for the posited initial programme theories. Fourteen participants from 20 key informants invited participated. Interviews were conducted via Zoom, transcribed and analysed. From these data, guiding principles of fostering collaboration were developed. Six guiding principles were distilled: (1) structure opportunities for collaboration across sites (2) facilitate meetings to foster learning and problem-solving across sites (3) broker useful long-term relationships (4) enable support agencies to assist implementers by giving legitimacy to their efforts in the eyes of senior management (5) consider investment in collaboration as effective well beyond the current projects (6) promote a shared vision and build momentum for change by ensuring inclusive networks where everyone has a voice. Structuring and supporting collaboration in large-scale initiatives is a powerful implementation strategy if contexts described in the guiding principles are present.
Publisher: BMJ
Date: 06-2013
Publisher: Wiley
Date: 08-08-2006
Publisher: SAGE Publications
Date: 27-08-2010
Publisher: The Sax Institute
Date: 2020
DOI: 10.17061/PHRP3042025
Publisher: Oxford University Press (OUP)
Date: 29-06-2011
Abstract: There are few systematic studies of the incidence of cross-border fertility care and even fewer reports of qualitative research with those undertaking treatment outside their country of origin. This paper reports findings from a qualitative study of UK residents with experience of cross-border care: the socio-demographic characteristics of UK travellers their reasons for seeking treatment abroad the treatments they sought the destinations they chose and the outcomes of their treatment. Data regarding cross-border fertility treatment were collected from a purposive s le of 51 people by means of in-depth, semi-structured interviews between May 2009 and June 2010. Data were analysed using a systematic thematic coding method and also subjected to quantitative translation. Patient motivations for travelling abroad are complex. A desire for timely and affordable treatment with donor gametes was evident in a high number of cases (71%). However, most people gave several reasons, including: the cost of UK treatment higher success rates abroad treatment in a less stressful environment and dissatisfaction with UK treatment. People travelled to 13 different countries, the most popular being Spain and the Czech Republic. Most organized their own treatment and travel. The mean age of women seeking treatment was 38.8 years (range 29-46 years) and the multiple pregnancy rate was 19%. UK residents have erse reasons for, and approaches to, seeking overseas treatment and do not conform to media stereotypes. Further research is needed to explore implications of cross-border treatment for donors, offspring and healthcare systems.
Publisher: Informa UK Limited
Date: 2006
DOI: 10.1080/14647270500282644
Abstract: This paper presents key findings from the first major study of the provision of infertility services to South Asian communities in the UK. The research aimed to explore the social meanings of infertility and to examine the experiences of couples receiving fertility treatment. Focus groups with people from Pakistani, Bangladeshi and Indian communities (n = 93) revealed a strongly pro-natalist ideology and a relatively limited knowledge of infertility and treatments. Interviews with 50 participants from the same communities revealed a general satisfaction with secondary level infertility services. However, a minority felt inadequately informed about their condition, tests undertaken and treatment options only one-third were given any written information about treatment many were concerned about delays and waiting times a minority felt that staff could be more sympathetic in their response to 'failed' treatment and several couples suggested that additional emotional support would be helpful. No information or resources were available in any South Asian language and the arrangements for communication support for non-English speakers were generally less than adequate. There was little evidence of the use of data on ethnic or religious background in infertility clinics. Recommendations for policy and practice are proposed.
Publisher: BMJ
Date: 06-2005
Abstract: In an editorial in a previous issue of this journal Rapport et al introduced the metaphor of the edgelands, arguing that the area between urban and rural landscapes serves to illustrate some of the difficulties of interdisciplinarity experienced by those who work in the medical humanities. In this paper the authors explore some specific issues of qualitative research methodology in health care research. The paper describes a broadening out of the scope of qualitative inquiry in social scientific research in health and social care. The paper explains why some new methodologies have emerged and how both old and new methodologies are grouped around three interlocking strands: narrative based, arts based, and redefined, methodology. In order to illustrate developments in this field, the authors present three ex les of the use of these methodologies in practice: photo elicitation technique discourse analytic, and interpretive anthropological, method. Finally the authors illustrate how these methodologies can give added value to health services research.
Publisher: Informa UK Limited
Date: 2009
DOI: 10.3109/01421590903193570
Abstract: The Graduate Entry Programme (GEP) in Medicine delivered by Swansea University (currently in collaboration with Cardiff University) accepts students from a erse range of academic backgrounds with no restriction in relation to the field of first degree. There is a growing body of literature, predominantly quantitative in nature, regarding the influence of academic background on student achievement but little published information on students' views. To examine students' views regarding the extent to which previous higher education and wider life experience influence their student experience on the GEP course. Recruitment from three student cohorts and group interview data followed by descriptive thematic analysis of anonymized data. Data themes were: (1) previous study experience and its impact on present student experience (2) the impact of life experience (3) the impact of the present study on life experience (4) skills, status and difference (5) characteristics and expectations of the course (6) finances and (7) next steps. Previous study experience had little impact on present student experience. However, previous life experience, with time between first degree and GEP, clearly enhances the learning experience. Added maturity and early clinical contact enables students to manage the challenges of the course and the NHS environment despite financial strain and heavy coursework. Analysing students' views is informative and provides richer insight into experience and expectations than that accessible from quantitative data alone.
Publisher: Elsevier BV
Date: 1998
DOI: 10.1016/S0277-9536(97)00154-8
Abstract: Innovative approaches to patient management are needed to ensure that only those patients who would benefit most are referred from primary to secondary care. This report describes an exploratory study in which general practitioners adopted the role of reviewing the management of patients who would otherwise be referred to hospital. Patients in eight general practices in South Wales were referred In-house by general practitioners to a colleague in the practice who reviewed the need for hospital care. Qualitative data from interviews and questionnaires is presented. In-house referral appears to be acceptable, practical and of value to both general practitioners and patients.
Publisher: Wiley
Date: 11-06-2003
DOI: 10.1046/J.1365-2648.2003.02670.X
Abstract: To date there are few attitudinal studies of women's experiences of egg donation, motivation to donate or their thoughts about eggs donated. Studies are predominantly discussed in terms of a specific treatment option and the ethical implications of different treatments. These studies are mainly designed by professionals working in assisted reproductive technology in line with a clinical agenda. This study aimed to explore the beliefs and experiences of potential egg share donors using an interpretative phenomenological methodology to equip health care practitioners to deal better with patients' needs and desires. Open-ended interviews were conducted immediately following introductory consultations with 11 potential egg share donors from one fertility centre in the United Kingdom (UK). The s le was opportunistic. Data collection took 8 months and van Manen's interpretative phenomenological method was used. Analysis revealed six themes of egg sharing: motherhood (the predominant theme within which all other themes could be subsumed), context, doubt, coping, exchange and empathy. Themes illustrated women's continuation with the scheme despite fears about giving away eggs, the parenting skills of recipient couples and future repercussions of positive outcomes for donor and recipient. Egg sharing could be seen as a marker of hope. Buoyed up by the possibility of a successful outcome, women are prepared to undertake repetitive treatment attempts despite continued failure to conceive and knowledge of a slim chance of a positive outcome. Implications for practice, policy and ethics result in recommendations for more in-depth interview work by independent researchers to gain a clearer picture of women's responses to reproductive technologies and the development of services in line with patient need and in idual expectation.
Publisher: Elsevier BV
Date: 2020
DOI: 10.1016/J.YEBEH.2019.106721
Abstract: Achieving seizure control through resective brain surgery is a major predictor of improved quality of life (QOL) among people with refractory (drug-resistant) epilepsy. Nevertheless, QOL is a comprehensive and dynamic construct, consisting of broad dimensions such as physical health, psychosocial well-being, level of independence, social relationships, and beyond. This study highlights the interlinkage and complementarity of these erse dimensions, and how in practice, patients, clinicians, and others in a social support system can actively promote QOL among surgery patients. Twenty-one qualitative in-depth interviews with patients with refractory epilepsy who are either undergoing presurgical assessment or postsurgery follow-up were conducted, to consider their perspective on QOL in relation to their experience of illness and surgical treatment. Data were thematically analyzed, resulting in three key thematic findings. (1) A myriad of QOL dimensions are highly interrelated and interdependent with mutual 'spin-off' effects: Uncontrolled seizures impacted beyond physical and cognitive health, disrupting important social identities such as being successful parents, spouses, and career professionals. The desire for good clinical outcomes from surgery was justified against the need to mitigate these social and personal concerns. (2) In postsurgery care, there were complementary effects of clinical interventions and social factors on patients' QOL. Psychosocial well-being was supported by a combination of improved physical health, self-confidence, psychological interventions, and social support from employers and educators who were sensitive to patients' specialized needs. (3) Engaging in education, employment, and government services influenced not only socioeconomic well-being, but also a sense of social inclusion. Advocacy made on behalf of patients by clinicians and family members has helped to better manage patients' eligibility for social services provision. Quality of life is achieved through a comprehensive and interactive social process, and not simply an outcome measure of clinical treatment. The responses and interactions of many others within the patients' life and treatment process, including family members, clinicians, and social service workers, can culminate to influence QOL, highlighting the importance of a relational and social determinants perspective in patient care.
Publisher: BMJ
Date: 06-2019
DOI: 10.1136/BMJOPEN-2019-030988
Abstract: The aged population is increasing rapidly across the world and this is expected to continue. People living in residential aged care facilities (RACFs) represent amongst the sickest and frailest cohort of the aged population, with a high prevalence of chronic conditions and complex comorbidities. Given the vulnerability of RACF residents and the demands on the system, there is a need to determine the extent that care is delivered in line with best practice (‘appropriate care’) in RACFs. There is also a recognition that systems should provide care that optimises quality of life (QoL), which includes support for physical and psychological well-being, independence, social relationships, personal beliefs and a caring external environment. The aims of CareTrack Aged are to develop sets of indicators for appropriate care and processes of care for commonly managed conditions, and then assess the appropriateness of care delivered and QoL of residents in RACFs in Australia. We will extract recommendations from clinical practice guidelines and, using expert review, convert these into sets of indicators for 15 common conditions and processes of care for people living in RACFs. We will recruit RACFs in three Australian states, and residents within these RACFs, using a stratified multistage s ling method. Experienced nurses, trained in the CareTrack Aged methods (‘surveyors’), will review care records of recruited residents within a 1-month period in 2019 and 2020, and assess the care documented against the indicators of appropriate care. Surveyors will concurrently assess residents’ QoL using validated questionnaires. The study has been reviewed and approved by the Human Research Ethics Committee of Macquarie University (5201800386). The research findings will be published in international and national journals and disseminated through conferences and presentations to interested stakeholder groups, including consumers, national agencies, healthcare professionals, policymakers and researchers.
Publisher: Wiley
Date: 24-03-2023
DOI: 10.1111/AJD.14023
Abstract: Skin cancer is a growing global problem and a significant health and economic burden. Despite the practical necessity for skin cancer to be managed in primary care settings, little is known about how quality of care is or should be measured in this setting. This scoping review aimed to capture the breadth and range of contemporary evidence related to the measurement of quality in skin cancer management in primary care settings. Six databases were searched for relevant texts reporting on quality measurement in primary care skin cancer management. Data from 46 texts published since 2011 were extracted, and quality measures were catalogued according to the three domains of the Donabedian model of healthcare quality (structure, process and outcome). Quality measures within each domain were inductively analysed into 13 key emergent groups. These represented what were deemed to be the most relevant components of skin cancer management as related to structure, process or outcomes measurement. Four groups related to the structural elements of care provision (e.g. diagnostic tools and equipment), five related to the process of care delivery (e.g. diagnostic processes) and four related to the outcomes of care (e.g. poor treatment outcomes). A broad range of quality measures have been documented, based predominantly on articles using retrospective cohort designs systematic reviews and randomised controlled trials were limited.
Publisher: Oxford University Press (OUP)
Date: 06-2010
Publisher: Informa UK Limited
Date: 03-2013
DOI: 10.3109/14647273.2013.773091
Abstract: This paper explores 'public' attitudes to the use of donated gametes in infertility treatment amongst members of British South Asian communities in the UK. The study included 14 single-sex focus groups with a total of 100 participants of Indian, Pakistani and Bangladeshi origins in three English cities and 20 in idual semi-structured interviews with key informants. It explores five themes from the data: childlessness and stigma using sperm and using eggs cultural connections choosing gametes religion and the use of donated gametes and disclosure and the management of information. The paper demonstrates that the socio-cultural context of fertility treatment is highly relevant and those delivering services and those consulting the public need to be aware of cultural and gender differences. Third party assisted conception represents a challenge to received ideas of identity and has implications for social reproduction and kinship which go well beyond immediate conjugal relationships.
Publisher: Wiley
Date: 30-10-2008
Publisher: Elsevier BV
Date: 12-2014
DOI: 10.1016/J.JPSYCHORES.2014.09.006
Abstract: The U.K. has one of the highest rates of self harm in Europe at 400 per 100,000 of population. Paramedics and emergency staff may be the first professionals encountered, therefore understanding their views and approaches to care is crucial. The aim of this study was to systematically review published quantitative literature relating to paramedic and emergency workers' perceptions and experiences of caring for people who self harm. CINAHL®, MEDLINE®, OVID ® and Psych INFO® databases were searched, PRISMA guidelines were followed, two researchers independently screened titles, abstracts and full papers against a priori eligibility criteria. Data synthesis was achieved by extracting and descriptively analysing study characteristics and findings. 16 studies met inclusion criteria one included ambulance staff, all used questionnaires. Training, policies and guidelines improved staff knowledge and confidence in caring for people who self harm. Limited access to training was reported, ranging from 75% to 90% of staff lacking any. Limited departmental guidelines were also reported. Staff in acute settings exhibited increased feelings of negativity, becoming less positive closer to front line care. Recent studies report positive attitudes amongst emergency staff. Despite guidelines indicating need for education and policies to guide staff in self harm care, there is limited evidence of this happening in practice. The lack of literature including paramedics suggests a gap in our understanding about care for self harm patients. This gap warrants greater attention in order to improve care for patients who self harm in their first point of contact.
Publisher: BMJ
Date: 07-2019
DOI: 10.1136/BMJOPEN-2018-028881
Abstract: Listening effort may be defined as the cognitive resources needed to understand an auditory message. A sustained requirement for listening effort is known to have a negative impact on in iduals’ sense of social connectedness, well-being and quality of life. A number of hearing-specific patient-reported outcome measures (PROMs) exist currently however, none adequately assess listening effort as it is experienced in the listening situations of everyday life. The Listening Effort Questionnaire-Cochlear Implant (LEQ-CI) is a new, hearing-specific PROM designed to assess perceived listening effort as experienced by adult CI patients. It is the aim of this study to conduct the first psychometric evaluation of the LEQ-CI’s measurement properties. This study is a phased, prospective, multi-site validation study in a UK population of adults with severe-profound sensorineural hearing loss who meet local candidacy criteria for CI. In phase 1, 250 CI patients from four National Health Service CI centres will self-complete a paper version of the LEQ-CI. Factor analysis will establish unidimensionality and Rasch analysis will evaluate item fit, differential item functioning, response scale ordering, targeting of persons and items, and reliability. Classical test theory methods will assess acceptability/data completeness, scaling assumptions, targeting and internal consistency reliability. Phase 1 results will inform refinements to the LEQ-CI. In phase 2, a new s le of adult CI patients (n=100) will self-complete the refined LEQ-CI, the Speech, Spatial and Qualities of Hearing Scale, the Nijmegen Cochlear Implant Questionnaire and the Fatigue Assessment Scale to assess construct validity. This study was approved by the Abertawe Bro Morgannwg University Health Board/Swansea University Joint Study Review Committee and the Newcastle and North Tyneside 2 Research Ethics Committee, Ref: 18/NE/0320. Dissemination will be in high-quality journals, conference presentations and SEH’s doctoral dissertation.
Publisher: Springer Science and Business Media LLC
Date: 10-10-2019
DOI: 10.1007/S11013-019-09654-5
Abstract: Bulimia is an eating disorder characterised primarily by binging and 'inappropriate' compensatory behaviours, such as purging or excessive exercise. Many in iduals with bulimia experience chronic disordered eating, dissatisfaction with treatment, and difficulty establishing a 'new life'. Recovery-oriented practice, which focuses holistically on the person and their own aspirations for treatment, has recently been advocated in the treatment of eating disorders in Australia and other countries. However, questions have been raised about how this practice might be integrated into existing treatment approaches. Taking a social constructionist approach and using a case study of one woman's account, together with literature on patients' treatment experiences, we examined recovery from bulimia. Three themes were identified: bulimia was constructed as 'consuming one's life', an experience protracted through treatment ('treatment and becoming the eating disorder'), which makes life 'beyond treatment and attempting to live without bulimia' challenging. Based on this analysis, we argue that recovery-oriented practice, while seemingly commensurate with patients' needs, may be challenged by long-standing meanings of mental illness and experience of bulimia specifically.
Publisher: MDPI AG
Date: 23-02-2023
Abstract: Agency, defined as the ability to identify one’s goals and act upon them, has been recognized as a prominent strategy to access maternal healthcare services (MHS). The purpose of this study was to synthesize evidence of the association between women’s agency and MHS utilization. A systematic review was performed on five academic databases, comprising Scopus, PubMed, Web of Science, Embase, and ProQuest. Meta-analysis was performed with a random-effects method using the STATA™ Version 17 software. A total of 82 studies were selected following the PRISMA guidelines. The meta-analysis demonstrated that an increase in women’s agency was associated with a 34% increase in the odds of receiving skilled antenatal care (ANC) (OR = 1.34, 95% CI = 1.18–1.52) 7% increase in the odds of initiating the first ANC visit during the first trimester of pregnancy (OR = 1.07, 95% CI = 1.01–1.12) 20% increase in the odds of receiving at least one ANC visit (OR = 1.20, 95% CI = 1.04–1.4) 16% increase in the odds of receiving more than four ANC visits during pregnancy (OR = 1.16, 95% CI = 1.12–1.21) 17% increase in the odds of receiving more than eight ANC visits (OR = 1.17, 95% CI = 1.04–1.32) 13% increase in the odds of facility-based delivery (OR = 1.13, 95% CI = 1.09–1.17) 16% increase in the odds of using skilled birth attendants (OR = 1.16, 95% CI = 1.13–1.19) and 13% increase in the odds of receiving postnatal care (OR = 1.13, 95% CI = 1.08–1.19) compared to low level of agency. Any efforts to improve MHS utilization and reduce maternal morbidity and mortality should include the promotion of women’s agency.
Publisher: American Psychological Association (APA)
Date: 29-11-2019
Publisher: Informa UK Limited
Date: 20-04-2023
Publisher: Informa UK Limited
Date: 14-08-2019
Publisher: Public Library of Science (PLoS)
Date: 02-04-2020
Publisher: Springer Science and Business Media LLC
Date: 16-05-2023
DOI: 10.1186/S13104-023-06356-5
Abstract: Clinical Practice Guidelines (CPGs) are designed to guide treatment decisions, yet adherence rates vary widely. To characterise perceived barriers and facilitators to cancer treatment CPG adherence in Australia, and estimate the frequency of previous qualitative research findings, a survey was distributed to Australian oncologists. The s le is described and validated guideline attitude scores reported for different groups. Differences in mean CPG attitude scores across clinician subgroups and associations between frequency of CPG use and clinician characteristics were calculated with 48 respondents there was limited statistical power to find differences. Younger oncologists ( 50 years) and clinicians participating in three or more Multidisciplinary Team Meetings were more likely to routinely or occasionally use CPGs. Perceived barriers and facilitators were identified. Thematic analysis was conducted on open-text responses. Results were integrated with previous interview findings and presented in a thematic, conceptual matrix. Most barriers and facilitators identified earlier were corroborated by survey results, with minor discordance. Identified barriers and facilitators require further exploration within a larger s le to assess their perceived impact on cancer treatment CPG adherence in Australia, as well as to inform future CPG implementation strategies. This research was Human Research Ethics Committee approved (2019/ETH11722 and 52019568810127, ID:5688).
Publisher: Elsevier BV
Date: 09-2016
Publisher: BMJ
Date: 09-2019
DOI: 10.1136/BMJOPEN-2019-030100
Abstract: Hearing loss is a common chronic problem which can be effectively managed with hearing devices. At present, only a limited number of people with hearing loss use hearing aids (HAs) and cochlear implants (CIs) to improve hearing and sound quality and enhance quality of life. Clinical equipoise, by which we mean healthcare professional uncertainty about which treatment options are the most efficacious due to the lack of evidence-based information, can lead to inconsistent and poorly informed referral processes for hearing devices. A randomised controlled trial (RCT) that offers high-quality, generalisable information is needed to clarify which hearing device (HA or CI) is more suitable for different degrees of hearing loss and for which kinds of patients. Qualitative research can improve this RCT, by gathering the information on patient and provider perspectives, attitudes and values, which can inform design, conduct and information dissemination, either during preparatory stages of an intervention, or as a fully integrated methodology. The Comparison of Outcomes with hearing Aids and Cochlear implants in adults with moderately severe-to-profound bilateral sensorineural Hearing loss (COACH) study is being planned as an RCT with a qualitative arm (the qualitative COACH study, q-COACH), acting as a pretrial intervention examining views of HAs, CIs, equipoise and the impetus for an RCT of this nature. The q-COACH study involves semistructured interviews and a demographic questionnaire which will be collected from four participant cohorts: General Practitioners (GPs) and Ear, Nose and Throat Surgeons (ENTs) audiologists adult HA users and their support networks. Data will be analysed thematically and through descriptive statistics. Macquarie University Human Research Ethics Committee, Australia, granted ethical approval (no. 5201833514848). Peer-reviewed journal articles, research conferences and a final report will present study findings.
Publisher: Springer Science and Business Media LLC
Date: 06-01-2020
DOI: 10.1186/S13063-019-3968-1
Abstract: Randomised controlled trials (RCTs), while still considered the gold standard approach in medical research, can encounter impediments to their successful conduct and the dissemination of results. Pretrial qualitative research can usefully address some of these impediments, including recruitment and retention, ethical conduct, and preferred methods of dissemination. However, pretrial qualitative work is rarely undertaken in audiology. The Comparison of outcomes with hearing aids and cochlear implants in adults with moderately severe-to-profound bilateral sensorineural hearing loss (COACH) is a proposed RCT aiming to clarify when hearing aids (HAs) or cochlear implants (CIs) are the most suitable for different degrees of hearing loss and for which kinds of patients. q-COACH is a pretrial, qualitative study examining stakeholders’ experiences of HAs and CIs, current clinical practices and stakeholders’ perspectives of the design, conduct and dissemination plans for the proposed COACH study. Twenty-four participants including general practitioners, audiologists, adult HA users, and adult support networks undertook either semi-structured in idual or paired interviews and completed demographic questionnaires. Data were analysed thematically. Four key themes arose from this study: 1) rethinking s ling and recruitment strategies, 2) ethical considerations, 3) refining trial conduct, and 4) interconnected, appropriate and accessible methods of results dissemination. This qualitative investigation identified key considerations for the proposed RCT design, conduct and dissemination to help with successful implementation of COACH, and to indicate a plan of action at all RCT stages that would be acceptable to potential participants. By drawing on the perspectives of multiple key stakeholders and including a more general discussion of their experience and opinions of hearing loss, hearing device use and service availability, the study revealed experiential and ethical paradigms in which stakeholders operate. In so doing, q-COACH has exposed the benefits of preliminary qualitative investigations that enable detailed and rich understandings of the phenomenon at stake, forestalling problems and improving the quality of trial design, conduct and dissemination, while informing future RCT development discussions.
Publisher: Springer Science and Business Media LLC
Date: 19-02-2019
Publisher: BMJ
Date: 05-2020
DOI: 10.1136/BMJOPEN-2020-037225
Abstract: Patient-centred care is pivotal to clinical practice and medical education. The practice of evidence-based medicine (EBM) and shared decision-making (SDM) are complementary aspects of patient-centred care, but they are frequently taught and reported as independent entities. To effectively perform all steps of EBM, clinicians need to include patients in SDM conversations, however, the uptake of this has been slow and inconsistent. A solution may be the incorporation of SDM into EBM training programmes, but such programmes do not routinely include SDM skills development. This scoping review will survey the literature on the kinds of EBM and SDM educational programmes that exist for recently qualified doctors, programmes that incorporate the teaching of both EBM and SDM skills, as well as identifying research gaps in the literature. Literature searches will be conducted in the databases Medline, Embase, Scopus and Cochrane Library. Bibliographies of key articles and their citing references will also be hand-searched and assessed for inclusion. Selected grey literature will be included. Papers must be written in English, or provide English abstracts, and date from 1996 to the present day. Two independent reviewers will screen titles and abstracts, check full texts of selected papers for eligibility and extract the data. Any disagreement will be resolved, and consensus reached, if necessary, with the assistance of a third reviewer. Qualitative and quantitative studies that address educational interventions for either EBM, SDM or both will be included. Data extraction tables will present bibliographic information, populations, interventions, context and outcomes. Data will be summarised using tables and figures and a description of findings. This review will synthesise information from publicly available publications and does not require ethics approval. The results will be disseminated via conference presentations and publications in medical journals.
Publisher: Wiley
Date: 16-01-2008
DOI: 10.1111/J.1365-2753.2007.00811.X
Abstract: Patients concerned about a family history of breast cancer can face difficult decisions about screening, prophylactic surgery and genetic testing. Decision aids can facilitate patient decision making and currently include leaflets and computerized tools. These are largely aimed at the North American market. However, no decision aids concerning familial breast cancer exist in the UK. Focus groups were held with 39 women over 18 years of age referred to a cancer genetics clinic, and who had been given a risk assessment for developing breast cancer. Each focus group examined three existing North American decision aids (1 paper-based and 2 CD-ROMs) and explored what a decision aid in a UK context should look like and the information it should contain. There was enthusiasm for the development of decision aids that suit the local context in terms of its health care policy, in paper-based and CD-ROM formats. This paper identifies areas of agreement and disagreement in terms of both content and presentation styles, and also reports some of the suggestions received about where, when and with whom decision aids should be used. Participants suggested that decision aids would be most effective when they allowed a user-selected range of formats. There is still significant unmet demand for information and decision support in the context of publicly funded health care. The patient perspective provides a unique insight into issues of design, style and communication.
Publisher: The Sax Institute
Date: 2022
DOI: 10.17061/PHRP3222218
Publisher: Springer Singapore
Date: 20-12-2017
Publisher: Wiley
Date: 14-02-2022
DOI: 10.5694/MJA2.51424
Publisher: Wiley
Date: 02-01-2020
DOI: 10.1111/HEX.13020
Publisher: Wiley
Date: 18-11-2002
DOI: 10.1046/J.1365-2648.2002.02406.X
Abstract: This paper revisits Richard Titmuss' 1970s blood donation model in the light of its 1997 reprint in order to consider whether we are justified in continuing to accept that the main reason for blood donation (and other donation types) is an altruistic desire to help others. This paper explores how others have examined the notion of altruism, before concentrating on two major elements of Titmuss' work: blood donors' motives to donate and the social implications of gift-giving in relation to the uniqueness of blood donation. Donor motivation is discussed in detail with particular reference to questions 4 and 5 of Titmuss' blood donor survey and through a critical appraisal approach to his work. Methodological inconsistencies are revealed in the design and implementation of the survey, as well as in Titmuss' list of blood donation's unique attributes, bringing into question the rigour of his findings. It may be that blood donors are altruistically motivated, but such conclusions cannot be drawn from this work. It is also unclear if 'altruism' can be shown in the ex le of blood donation or other donation types. We should reconsider the motivation behind gifting in health care in the light of these findings and ensure that evidence-based practice is consistent with methodological rigour. Nurses and other health professionals need to have a clearer understanding of concepts such as altruism in order to appreciate why people seek to donate.
Publisher: Routledge
Date: 12-05-2022
Publisher: Wiley
Date: 07-03-2023
DOI: 10.1111/AJCO.13948
Abstract: Adherence to cancer treatment clinical practice guidelines (CPGs) varies enormously across Australia, despite being associated with improved patient outcomes. This systematic review aims to characterize adherence rates to active‐cancer treatment CPGs in Australia and related factors to inform future implementation strategies. Five databases were systematically searched, abstracts were screened for eligibility, a full‐text review and critical appraisal of eligible studies performed, and data extracted. A narrative synthesis of factors associated with adherence was conducted, and the median adherence rates within cancer streams calculated. A total of 21,031 abstracts were identified. After duplicates were removed, abstracts screened, and full texts reviewed, 20 studies focused on adherence to active‐cancer treatment CPGs were included. Overall adherence rates ranged from 29% to 100%. Receipt of guideline recommended treatments was higher for patients who were younger (diffuse large B‐cell lymphoma [DLBCL], colorectal, lung, and breast cancer) female (breast and lung cancer), and male (DLBCL and colorectal cancer) never smokers (DLBCL and lung cancer) non‐Indigenous Australians (cervical and lung cancer) with less advanced stage disease (colorectal, lung, and cervical cancer), without comorbidities (DLBCL, colorectal, and lung cancer) with good‐excellent Eastern Cooperative Oncology Group performance status (lung cancer) living in moderately accessible places (colon cancer) and treated in metropolitan facilities (DLBLC, breast and colon cancer). This review characterized active‐cancer treatment CPG adherence rates and associated factors in Australia. Future targeted CPG implementation strategies should account for these factors, to redress unwarranted variation particularly in vulnerable populations, and improve patient outcomes (Prospero number: CRD42020222962).
Publisher: BMJ
Date: 12-2005
Publisher: BMJ
Date: 12-2020
DOI: 10.1136/BMJOPEN-2020-044049
Abstract: Value-based healthcare delivery models have emerged to address the unprecedented pressure on long-term health system performance and sustainability and to respond to the changing needs and expectations of patients. Implementing and scaling the benefits from these care delivery models to achieve large-system transformation are challenging and require consideration of complexity and context. Realist studies enable researchers to explore factors beyond ‘what works’ towards more nuanced understanding of ‘what tends to work for whom under which circumstances’. This research proposes a realist study of the implementation approach for seven large-system, value-based healthcare initiatives in New South Wales, Australia, to elucidate how different implementation strategies and processes stimulate the uptake, adoption, fidelity and adherence of initiatives to achieve sustainable impacts across a variety of contexts. This exploratory, sequential, mixed methods realist study followed RAMESES II (Realist And Meta-narrative Evidence Syntheses: Evolving Standards) reporting standards for realist studies. Stage 1 will formulate initial programme theories from review of existing literature, analysis of programme documents and qualitative interviews with programme designers, implementation support staff and evaluators. Stage 2 envisages testing and refining these hypothesised programme theories through qualitative interviews with local hospital network staff running initiatives, and analyses of quantitative data from the programme evaluation, hospital administrative systems and an implementation outcome survey. Stage 3 proposes to produce generalisable middle-range theories by synthesising data from context–mechanism–outcome configurations across initiatives. Qualitative data will be analysed retroductively and quantitative data will be analysed to identify relationships between the implementation strategies and processes, and implementation and programme outcomes. Mixed methods triangulation will be performed. Ethical approval has been granted by Macquarie University (Project ID 23816) and Hunter New England (Project ID 2020/ETH02186) Human Research Ethics Committees. The findings will be published in peer-reviewed journals. Results will be fed back to partner organisations and roundtable discussions with other health jurisdictions will be held, to share learnings.
Publisher: Elsevier BV
Date: 06-2011
DOI: 10.1016/J.RBMO.2011.03.010
Abstract: Cross-border reproductive care (CBRC) has attracted considerable attention in media and professional publications. The aim of this review is to present a critical narrative overview of the published evidence on CBRC. A systematic search of key academic databases was undertaken with no time restrictions set for publication. This was supplemented by additional searches of key websites, reference chaining and enquiries to people working in the field. A total of 54 items are included in the review, including both empirical research studies (18) and debate papers (36). The key themes discussed are: terminology and definitions incidence experiences explanations implications and policy responses. Significant methodological limitations and gaps in the literature are identified. Evidence on incidence is scant, though it suggests that CBRC is increasing. The literature suggests legal, social and political drivers, which vary in importance geographically and between in iduals. Limited findings on patient perceptions suggest a broadly positive patient experience. Suggested policy responses include prohibition, regulatory harmonization and harm minimization. There is a need for better international data collection tools and both quantitative and qualitative work which encompasses views of patients, donors, surrogates and professionals and which explores the implications for healthcare services in sending countries.
Publisher: Informa UK Limited
Date: 02-04-2016
DOI: 10.3109/14647273.2016.1168530
Abstract: Surveys on patients' experiences of cross-border fertility treatment have reported a range of positive and challenging features. However, the number of such studies is limited, and there is no detailed qualitative account of the experiences of UK patients who travel overseas for fertility treatment. The present study used a cross-sectional, qualitative design and in-depth interviews. Fifty-one participants (41 women and 10 men, representing 41 treatment 'cases') participated in semi-structured interviews. The experiences reported were broadly positive with a large proportion of participants (39 cases, 95%) citing a favourable overall experience with only two cases (5%) reporting a more negative experience. Thematic analysis revealed 6 major categories and 20 sub-categories, which described the positive and challenging aspects of cross-border fertility travel. The positive aspects were represented by the categories: 'access', 'control' and 'care and respect'. The more challenging aspects were categorized as 'logistics and coordination of care', 'uncertainty' and 'cultural dissonance'. The study confirms findings from others that despite some challenges, there is a relatively high level of patient satisfaction with cross-border treatment with participants able to extend the boundaries of their fertility-seeking trajectories and in some cases, regain a sense of control over their treatment.
Publisher: SAGE Publications
Date: 04-2006
Abstract: This article presents a study that explores how general practitioners (GPs) reflect on their workspaces and what that tells us about how professional practice is enacted. The study employed biography as its data collection method to enable three pilot and nine other GPs from the Swansea Region in the UK to write about their consulting rooms. Thematic analysis of biographies, employing in idual and group analysis sessions, revealed eleven themes of GP workspace. These indicated that although a minority of the group were totally satisfied with their environments, most of the group spent time and energy finding ways of creating environments of ‘best fit’, thus enabling lack of function to become part of their daily routine.
Publisher: Oxford University Press (OUP)
Date: 10-2016
Publisher: Springer Science and Business Media LLC
Date: 13-03-2015
Publisher: Informa UK Limited
Date: 03-2012
DOI: 10.2147/PI.S19821
Publisher: Royal College of General Practitioners
Date: 15-04-2020
DOI: 10.3399/BJGPOPEN20X101028
Abstract: In Australia, melanoma is managed in primary and secondary care settings. An in idual concerned about a suspicious lesion typically presents first to their GP. To identify factors influencing GPs’ decisions to diagnose, treat, or refer patients with suspected melanoma. Semi-structured interviews were undertaken with 23 GPs working in general practice or skin cancer clinics in Australia. The semi-structured interviews were audio-recorded, de-identified, and professionally transcribed. Thematic analysis was used to analyse the data. Considerable variation existed in GPs’ self-reported confidence and involvement in melanoma management. Multiple factors were identified as influencing GPs’ decisions to diagnose, treat, or refer patients with suspected or confirmed melanoma. Health system level factors included the overlapping roles of GPs and specialists, and access to and/or availability of specialists. Practice level factors included opportunities for formal and informal training, and having a GP with a special interest in skin cancer within their practice. GP and patient level factors included the GP’s clinical interests, the clinical features (for ex le, site and size) and histopathology of the suspected melanoma, eligibility for possible sentinel lymph node biopsy, and patient preferences. For some GPs, concerns over misdiagnosis and the option of referring patients at any stage in the melanoma management continuum appeared to affect their interest and confidence in melanoma management. GP involvement in melanoma patient care can extend well beyond cancer screening, prevention and supportive care roles to include provision of definitive melanoma patient management. GPs with an interest in being involved in melanoma management should be encouraged and supported to develop the skills needed to manage these patients, and to refer when appropriate.
Publisher: Springer Science and Business Media LLC
Date: 03-02-2020
DOI: 10.1186/S12913-020-4938-8
Abstract: Good workspace design is key to the quality of work, safety, and wellbeing for workers, yet we lack vital knowledge about optimal hospital design to meet healthcare workforce needs. This study used novel mobile methods to examine the concept of Work-as-Done and the effect of workspace-use on healthcare professional practice, productivity, health and safety in an Australian university hospital. This pilot study took place in one gastroenterological surgical unit between 2018 and 2019. Data collection involved 50 h of observations and informal conversations, followed by interpretation of five architectural plans and 45 photographs. Fieldnotes were thematically analysed and corroborated by analysis of visual data using a predefined taxonomy. Six themes were identified, revealing spaces that both support and hinder Work-as-Done. Fit-for-purpose spaces facilitated effective communication between staff, patients and families, conferred relative comfort and privacy, and supported effective teamwork. Unfit-for-purpose spaces were characterised by disruptions to work practices, disharmony among team members, and physical discomfort for staff. Staff employed workarounds to manage unfit-for-purpose spaces. The results identified negative impacts of negotiating unfit-for-purpose workspaces on the work and wellbeing of staff. While the use of workarounds and adaptations enable staff to maintain everyday working practices, they can also lead to unexpected consequences. Results indicated the need to identify and support fit-for-purpose spaces and minimize the detrimental qualities of unfit-for-purpose spaces. This study showed that mobile methods were suitable for examining Work-as-Done in a fast-moving, adaptive hospital setting.
Publisher: Springer Science and Business Media LLC
Date: 25-10-2018
Publisher: Public Library of Science (PLoS)
Date: 16-03-2023
DOI: 10.1371/JOURNAL.PONE.0283171
Abstract: Often considered an “invisible disability”, hearing loss is one of the most prevalent chronic diseases and the third leading cause for years lived with disability worldwide. Hearing loss has substantial impacts on communication, psychological wellbeing, social connectedness, cognition, quality of life, and economic independence. The Hearing impairment in Adults: a Longitudinal Outcomes Study (HALOS) aims to evaluate the: (1) impacts of hearing devices (hearing aids and/or cochlear implants), (2) differences in timing of these interventions and in long-term outcomes between hearing aid and cochlear implant users, and (3) cost-effectiveness of early intervention for adult-onset hearing loss among hearing device users. HALOS is a mixed-methods study collecting cross-sectional and longitudinal data on health and social outcomes from 908 hearing aid and/or cochlear implant users aged ≥40 years, recruited from hearing service providers across Australia. The quantitative component will involve an online survey at baseline (time of recruitment), 24-months, and 48-months and will collect audiological, health, psychosocial, functional and employment outcomes using validated instruments. The qualitative component will be conducted in a subset of participants at baseline and involve semi-structured interviews to understand the patient journey and perspectives on the Australian hearing service model. This study has been approved by the Macquarie University Human Research Ethics Committee (ID: 11262) and Southern Adelaide Local Health Network (ID: LNR/22/SAC/88). Dissemination of results: Study findings will be disseminated to participants via a one-page summary, and to the public through publications in peer-reviewed journals and presentations at conferences. Australia New Zealand Clinical Trial Registry (ANZCTR) registration number: ACTRN12622000752763 .
Publisher: BMJ
Date: 12-2010
Publisher: Springer Science and Business Media LLC
Date: 05-09-2013
Publisher: BMJ
Date: 06-2022
DOI: 10.1136/BMJOPEN-2021-059829
Abstract: Australia has the highest incidence of skin cancer in the world, with two out of three Australians expected to be diagnosed with skin cancer in their lifetime. Such incidence necessitates large-scale, effective skin cancer management practices. General practitioners (in mainstream practice and in skin cancer clinics) play an important role in skin cancer care provision, making decisions based on relevant evidence-based guidelines, protocols, experience and training. Diversity in these decision-making practices can result in unwarranted variation. Quality indicators are frequently implemented in healthcare contexts to measure performance quality at the level of the clinician and healthcare practice and mitigate unwarranted variation. Such measurements can facilitate performance comparisons between peers and a standard benchmark, often resulting in improved processes and outcomes. A standardised set of quality indicators is yet to be developed in the context of primary care skin cancer management. This research aims to identify, develop and generate expert consensus on a core set of quality indicators for skin cancer management in primary care. This mixed-methods study involves (1) a scoping review of the available evidence on quality indicators in skin cancer management in primary care, (2) identification and development of a core set of quality indicators through interviews/qualitative proforma surveys with participants, and (3) a focus group involving discussion of quality indicators according to Nominal Group Technique. Qualitative and quantitative data will be collected and analysed using thematic and descriptive statistical analytical methods. Approval was granted by the university’s Research Ethics Committee (HREC no. 520211051532420). Results from this study will be widely disseminated in publications, study presentations, educational events and reports.
Publisher: Wiley
Date: 10-08-2006
DOI: 10.1111/J.1440-1800.2006.00325.X
Abstract: Phenomenology is a well-founded qualitative methodology that is frequently used by nurse researchers and considered of value when addressing research questions in nursing practice and nurse education. However, at present, nurse researchers using phenomenology tend to ide phenomenological methodology into the descriptive and interpretive formats. The nursing literature suggests that there is a deep ide between researchers following the methodological underpinnings and basic precepts pertaining to these two c s. If we are to reach a clearer understanding of the theory underlying phenomenological methods it would be more helpful if we started to recognise that there are also important associations between transcendental and interpretive phenomenology. One such association is that a paradigm of movement exists that is not unique to transcendental and interpretive phenomenology but is common to them, as well as being inherent within a variety of fields of study. If we consider the universality of such imagery, looking to ex les through parallel texts, we can obtain insights into phenomenology and its transposition into a workable scientific method that can be of use to the nurse researcher.
Publisher: SAGE Publications
Date: 2007
Abstract: Little attention has been given to the specific methodological issues that can accompany the use of focus groups with minority ethnic communities in the United Kingdom. In this article, the authors discuss the use of this method in a study of the provision of infertility services to South Asian communities in three English cities. Focus groups are an invaluable research method for working in a erse linguistic and cultural environment, providing interesting, rich, and complex data. However, their use can raise significant methodological and ethical challenges for researchers working with minority ethnic communities. The authors discuss key issues that arose in their exploration of ethnicity and infertility around language and cultural ersity, the role of community facilitators, access and recruitment, infertility as a “sensitive” topic, and reciprocity in research relations.
Publisher: Springer Science and Business Media LLC
Date: 14-11-2018
Publisher: BMJ
Date: 2012
Publisher: BMJ
Date: 06-2014
Publisher: Public Library of Science (PLoS)
Date: 16-12-2022
DOI: 10.1371/JOURNAL.PONE.0279116
Abstract: The burden of cancer is large in Australia, and rates of cancer Clinical Practice Guideline (CPG) adherence is suboptimal across various cancers. The objective of this study is to characterise clinician-perceived barriers and facilitators to cancer CPG adherence in Australia. Semi-structured interviews were conducted to collect data from 33 oncology-focused clinicians (surgeons, radiation oncologists, medical oncologists and haematologists). Clinicians were recruited in 2019 and 2020 through purposive and snowball s ling from 7 hospitals across Sydney, Australia, and interviewed either face-to-face in hospitals or by phone. Audio recordings were transcribed verbatim, and qualitative thematic analysis of the interview data was undertaken. Human research ethics committee approval and governance approval was granted (2019/ETH11722, #52019568810127). Five broad themes and subthemes of key barriers and facilitators to cancer treatment CPG adherence were identified: Theme 1: CPG content Theme 2: In idual clinician and patient factors Theme 3: Access to, awareness of and availability of CPGs Theme 4: Organisational and cultural factors and Theme 5: Development and implementation factors. The most frequently reported barriers to adherence were CPGs not catering for patient complexities, being slow to be updated, patient treatment preferences, geographical challenges for patients who travel large distances to access cancer services and limited funding of CPG recommended drugs. The most frequently reported facilitators to adherence were easy accessibility, peer review, multidisciplinary engagement or MDT attendance, and transparent CPG development by trusted, multidisciplinary experts. CPGs provide a reassuring framework for clinicians to check their treatment plans against. Clinicians want cancer CPGs to be frequently updated utilising a wiki-like process, and easily accessible online via a comprehensive database, coordinated by a well-trusted development body. Future implementation strategies of cancer CPGs in Australia should be tailored to consider these context-specific barriers and facilitators, taking into account both the content of CPGs and the communication of that content. The establishment of a centralised, comprehensive, online database, with living wiki-style cancer CPGs, coordinated by a well-funded development body, along with incorporation of recommendations into point-of-care decision support would potentially address many of the issues identified.
Publisher: SAGE Publications
Date: 04-2007
DOI: 10.1258/135581907780318392
Abstract: In most UK ambulance services, crews attending someone who has phoned the emergency services on ‘999’ will take the patient to hospital, unless the patient makes the decision to stay at home (or wherever they happen to be when the ambulance arrives). Safety concerns have been raised about non-conveyance decisions. Weunder took a study of one UK Ambulance Service to examine ambulance crew members’ views on how decision-making about non-conveyance works in practice in relation to non-urgent calls. A total of 25 paramedics took part in three focus groups. Focus groups were transcribed and analysed thematically. The ambulance service's apparently straight forward guidance on decision-making about non-conveyance proved tricky in the messiness of the real world, for two reasons. The first was to do with the notion of the patient's capacity to make decisions and how this was interpreted. The second was to do with the complexity of the decision-making process, in which the patient, the crew and, in many cases, family or carers often take part in negotiation and de facto joint decision-making. There is a mismatch between policy and practice in relation to non-conveyance decisions. Findings should be built into research and service development in this rapidly changing field of practice in emergency and/or unscheduled care. The commonly accepted perspective on shared decision-making should be extended to include the context of ‘999’ ambulance calls.
Publisher: Springer Netherlands
Date: 2017
Publisher: Routledge
Date: 02-08-2004
Publisher: Elsevier BV
Date: 12-2010
DOI: 10.1016/J.SEIZURE.2010.10.022
Abstract: Investigations into families with a large number of in iduals with epilepsy have led to the discovery of epilepsy-causing (or epilepsy associated) gene mutations. These discoveries offer advantages and insights for the patient, family, healthcare professionals and biomedical scientists. Despite these benefits, there is little evidence about the impact of participation in genetic research for families with epilepsy. Here we report on the reflections of in iduals who have participated in epilepsy genetic research through the Wales Epilepsy Research Network (WERN). Undergoing genetic investigation for inherited epilepsy has extensive emotive impact, both positive and negative, on in iduals and families. Recognising these impacts is imperative to researchers working with families having implications for study design, research consent and the provision of appropriate support.
Publisher: Springer International Publishing
Date: 2017
Publisher: MDPI AG
Date: 09-12-2022
DOI: 10.3390/JPM12122039
Abstract: Background: there is currently limited research examining the QoL of patients with Ulcerative colitis (UC) following treatment of acute severe colitis (ASUC). Objective: to examine the long-term QoL of ASUC patients enrolled in the CONSTRUCT trial following treatment of UC with infliximab or ciclosporin and to compare the differences in the QoL between the two drug treatments over time. Methods: The CONSTRUCT trial examined the cost and clinical effectiveness of infliximab and ciclosporin treatments for acute severe UC. We collected QoL questionnaire data from patients during the active trial period up to 36 months. Following trial completion, we contacted patients postannually for up to a maximum of 84 months. We collected QoL data using a disease-specific (CUCQ, or CUCQ+ for patients who had colectomy surgery) or generic (EQ5D-3L) questionnaire. We analysed QoL scores to determine if there was any difference over time and between treatments in generic or disease-specific QoL. Results: Following initial treatment with infliximab and ciclosporin, patients experienced a statistically significant improvement in both the generic and disease-specific QoL at three months. Generic scores remained fairly static for the whole follow-up period, reducing only slightly up to 84 months. Disease-specific scores showed a much sharper improvement up to 2 years with a gradual reduction in QoL up to 84 months. Generic and disease-specific QoL remained higher than baseline values. There was no significant difference between treatments in any of the QoL scores. Conclusions: Both infliximab and ciclosporin improve QoL following initial treatment for ASUC. QoL scores remain higher than at admission up to 84 months post-treatment.
Publisher: BMJ
Date: 05-2018
Publisher: Springer Science and Business Media LLC
Date: 24-05-2009
DOI: 10.1007/S00127-009-0072-Y
Abstract: Integration of patient views in mental health service planning is in its infancy despite service provision being clearly dominated by narratives from professional consultations and medical records. We wished to clarify perceptions of uncertainty about mental health conditions from a range of provider and user perspectives (patients, carers, parents, mental health service providers) and understand the role of narratives in mental health research. (1) To explore the utility of qualitative research methods, particularly narrative content analysis in mental health research, and (2) identify aspects of uncertainty in mental health service users and providers. Four hundred and six free text responses were considered as one element of an existing questionnaire about uncertainties about mental health treatments, collected from mental healthcare users and providers through charities, the Mental Health Research Network in Wales, health professionals and websites. Free text responses were analysed using narrative content analysis, an elaborate and rigorous research technique that involves groups of analysts working independently and together over extended group sessions. Three main themes emerged across respondent groups: "medication and treatment options", "objectification and marginalisation of patient" and "integrity of service delivery". Within these, patients embraced the opportunity to write about their illness at length, whilst carers' and parents' main concerns were about how patients were dealing with their illnesses, the services they were getting and the side effects of treatments. Carers and patients' parents perceived themselves to be the 'go-between', carrying messages between patients and professionals, in order to enable services to function. Mental health service providers and professionals considered uncertainties surrounding medication and treatment from an 'evidence-base' perspective, concentrating on medication choices and the adoption of new approaches to care rather than patient need and expectation. Patients wanted to know what alternatives were available to the drug regimes they were on and felt their opinions were rarely listened to. As a consequence patients felt marginalised by the health systems there to support them and by society as a whole. Narrative content analysis can help distil large amounts of free text data and enable their successful interpretation. Listening to patients' voices should become an integral part of routine service evaluation and may help bring patient expectation more in line with service organisation and delivery towards an optimal delivery of care.
Publisher: BMJ
Date: 02-2002
DOI: 10.1136/JME.28.1.41
Abstract: Patient-based outcome measures are increasingly important in health care evaluations, often through the use of paper-based questionnaires. The likely impact of questionnaires upon patients is not often considered and therefore, the balance of benefit and harm not fully explored. Harms that might accrue for research staff are even less frequently considered. This paper describes the use of postal questionnaires within a study of breast disease management in primary care. Questionnaire responses are used to describe the nature of discomfort or harms that may occur in such studies. Ethical issues raised by the harms are discussed in relation to the benefits of the study. Practical suggestions for reducing harm to patients are proposed. A secondary consideration, discomfort to the researcher, is also identified and suggestions made to reduce its effect. Finally, the role of research questionnaires as a study intervention is discussed.
Publisher: SAGE Publications
Date: 06-08-2008
Abstract: This paper reviews the literature on “public” perceptions of the practice of gamete (egg and sperm) donation in the treatment of infertility. Despite regular “consultation” exercises in the UK on the manner in which infertility treatments should be regulated, there is little sense of how a range of public groups respond to developments in this area. The key themes from thirty-three articles, chapters and reports are discussed. The review reveals the limited nature of our current knowledge of public understandings of and attitudes towards gamete donation as a form of infertility treatment which has been readily available and widely practiced for many years. The review is critical of the methodological and epistemological basis of much of the work in this area and argues that there is a strong case for social scientific research to attempt to capture the perceptions of a wider range of people who are rarely included in formal public consultations and often similarly excluded from research studies.
Publisher: SAGE Publications
Date: 03-12-2009
Abstract: This article presents four focus groups conducted with health professionals, part of a mixed-method evaluation of modernization of endoscopy services in England catalyzed by the UK National Health Service Modernisation Agency. Transcripts were analyzed adapting van Manen’s “sententious” or “wholistic” approach to thematic analysis. Seven analysts worked to distil lengthy transcripts into summative paragraphs to capture the essentiality of text. Five major themes emerged: lack of senior management understanding and appropriate management systems, inadequate resources, loss of personal autonomy and erosion of professionalism, barriers and facilitators to change, and differences between English and Welsh units—the Welsh perspective . Achieving long-lasting, positive effects of modernization within complex systems demands senior management to actively support innovations, consider staff morale, and provide appropriate levels of funding. However, although professional morale was low, ambition to improve services was strong. The methodological framework offered a comprehensive and applicable approach to data analysis, and our analysis approach was inclusive and collaborative, with far-reaching possibilities for experimental studies and large-scale, mixed-method studies, including trials.
Publisher: Springer Science and Business Media LLC
Date: 12-2011
Publisher: Springer Science and Business Media LLC
Date: 24-05-2020
DOI: 10.1186/S12913-020-05334-Y
Abstract: Cochlear implants (CIs) can provide a sound sensation for those with severe sensorineural hearing loss (SNHL), benefitting speech understanding and quality of life. Nevertheless, rates of implantation remain low, and limited research investigates journeys from traditional hearing aids to implantable devices. Fifty-five adults (≥ 50 years), hearing aid users and/or CI users, General Practitioners, and Australian and United Kingdom audiologists took part in a multi-methods study. Focus groups, interviews, and surveys were thematically analysed. One hundred forty-three data-capture events disclosed 2 themes: 1) “ The burden of hearing loss and the impact of Cochlear Implants ”, and 2) “ Professional Support and Practice, and HCPs Roles and Responsibilities” . Care experience can include convoluted, complex journeys towards cochlear implantation. The significant impact of this, as hearing loss progresses, motivates people to consider implants, but they and healthcare professionals need clear supported with defined referral pathways, and less system complexity.
Publisher: Mark Allen Group
Date: 09-1996
DOI: 10.12968/BJCH.1996.1.5.7360
Abstract: An emotive issue in nursing literature is the Value for Money Unit’s study ‘The Nursing Skill-Mix in the District Nursing Service’ (NHS Executive 1992). Challenged by a variety of respondents, the study is strongly denounced for its conclusions that higher-grade nurses should utilise their roles as managers of care, leaving lower grade nurses to deliver hands-on care. This paper explores the implications of the study’s conclusions, and considers the contribution nursing could make to the debate about changing professional boundaries.
Publisher: Informa UK Limited
Date: 23-07-2019
DOI: 10.1080/09638288.2019.1643418
Abstract: To enhance understanding of access to rehabilitation services in Australian and New Zealand acute care facilities for older adults living with dementia and/or living in residential aged care facilities (RACFs) following a hip fracture. Information on hip fracture rehabilitation was obtained from an online survey of 40 health professionals who were members of the Australian and New Zealand Hip Fracture Registry Network. This information was supplemented with key informant interviews with five geriatricians and five rehabilitation physicians. Availability of hip fracture rehabilitation services differed by region and country. Around one in 10 respondents indicated that their facility had specific rehabilitation protocols for people living in RACFs or who were living with dementia. Barriers to providing hip fracture rehabilitation were commonly related to availability of resources. Rehabilitation pathways were determined according to in idual patient characteristics and perceived potential benefit. Decision making was mainly informed by the patient's pre-fracture morbidity and residence. Three key themes and nine sub-themes emerged from the interviews. The development of consistent decision criteria and pathways for access to hip fracture rehabilitation could provide a standard approach to access to rehabilitation, particularly for patients with cognitive impairment and/or who reside in RACFs.IMPLICATIONS FOR REHABILITATIONNeed to establish evidence-based criteria for patients who will benefit from hip fracture rehabilitation.Consistent decision criteria for access to hip fracture rehabilitation will assist in guiding a standard approach to providing rehabilitation, particularly for patients with cognitive impairment and/or who reside in RACFs.There is a need to ensure the availability of physiotherapy services in RACFs to assist with rehabilitation provision.Rehabilitation provided to patients with cognitive impairment and/or who are living in RACFs should be tailored to their physical and mental ability.
Publisher: BMJ
Date: 30-11-2009
Abstract: This paper presents a novel, qualitative, bio-photographic study with intertextual analysis highlighting the relationship between community pharmacy workspace and practice. Sixteen pharmacists working across pharmacy types such as independent shops, large and small pharmacy chains and multiple pharmacies such as those in supermarkets participated in data capture and feedback consultation. Findings disclosed workspaces unfit for purpose and a workforce ill at ease with their new professional identity, involving increasingly complex tasks in health provision and retail. There was conflict between delegating to others and taking personal responsibility, and there were pressures from a demanding public within the context of a target-driven, litigious society. The study highlights that innovative, mixed methods in this context reveal nuanced, rich data.
Publisher: Informa UK Limited
Date: 06-2008
Publisher: Oxford University Press (OUP)
Date: 04-2022
Abstract: People who live in aged care homes have high rates of illness and frailty. Providing evidence-based care to this population is vital to ensure the highest possible quality of life. In this study (CareTrack Aged, CT Aged), we aimed to develop a comprehensive set of clinical indicators for guideline-adherent, appropriate care of commonly managed conditions and processes in aged care. Indicators were formulated from recommendations found through systematic searches of Australian and international clinical practice guidelines (CPGs). Experts reviewed the indicators using a multiround modified Delphi process to develop a consensus on what constitutes appropriate care. From 139 CPGs, 5609 recommendations were used to draft 630 indicators. Clinical experts (n = 41) reviewed the indicators over two rounds. A final set of 236 indicators resulted, mapped to 16 conditions and processes of care. The conditions and processes were admission assessment bladder and bowel problems cognitive impairment depression dysphagia and aspiration end of life alliative care hearing and vision infection medication mobility and falls nutrition and hydration oral and dental care pain restraint use skin integrity and sleep. The suite of CT Aged clinical indicators can be used for research and assessment of the quality of care in in idual facilities and across organizations to guide improvement and to supplement regulation or accreditation of the aged care sector. They are a step forward for Australian and international aged care sectors, helping to improve transparency so that the level of care delivered to aged care consumers can be rigorously monitored and continuously improved.
Publisher: Oxford University Press (OUP)
Date: 12-1999
Abstract: Methods are needed to ensure that those patients referred from primary to secondary care are those most likely to benefit. In-house referral is the referral of a patient by a general practitioner to another general practitioner within the same practice for a second opinion on the need for secondary care referral. To describe whether in-house referral is practical and acceptable to patients, and the health outcomes for patients. Practices were randomized into an intervention or a control group. In intervention practices, patients with certain conditions who were about to be referred to secondary care were referred in-house. If the second clinician agreed referral was appropriate the patient was referred on to secondary care. In control practices patients were referred in the usual fashion. Patient satisfaction and health status was measured at the time of referral, 6 months and one year. Eight intervention and seven control practices took part. For the 177 patients referred in-house, 109 (61%) were judged to need referral on to secondary care. For patient satisfaction, the only difference between the groups studied was that at 12 months patients who had been referred in-house reported themselves as being more satisfied than those referred directly to hospital. For health status, the only difference found was that at the time of referral, patients who had been referred in-house and judged to need hospital referral reported themselves as being less able on the 'Physical function' subscale of the SF-36 than patients who were referred in-house and judged to not need hospital referral. In-house referral is acceptable to patients and provides a straightforward method of addressing uncertainty over the need for referral from primary to secondary care.
Publisher: BMJ
Date: 18-10-2011
DOI: 10.1136/BMJ.D5801
Publisher: BMJ
Date: 03-2019
DOI: 10.1136/BMJOPEN-2018-025320
Abstract: Effective researcher assessment is key to decisions about funding allocations, promotion and tenure. We aimed to identify what is known about methods for assessing researcher achievements, leading to a new composite assessment model. We systematically reviewed the literature via the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols framework. All Web of Science databases (including Core Collection, MEDLINE and BIOSIS Citation Index) to the end of 2017. (1) English language, (2) published in the last 10 years (2007–2017), (3) full text was available and (4) the article discussed an approach to the assessment of an in idual researcher’s achievements. Articles were allocated among four pairs of reviewers for screening, with each pair randomly assigned 5% of their allocation to review concurrently against inclusion criteria. Inter-rater reliability was assessed using Cohen’s Kappa (ĸ). The ĸ statistic showed agreement ranging from moderate to almost perfect (0.4848–0.9039). Following screening, selected articles underwent full-text review and bias was assessed. Four hundred and seventy-eight articles were included in the final review. Established approaches developed prior to our inclusion period (eg, citations and outputs, h-index and journal impact factor) remained dominant in the literature and in practice. New bibliometric methods and models emerged in the last 10 years including: measures based on PageRank algorithms or ‘altmetric’ data, methods to apply peer judgement and techniques to assign values to publication quantity and quality. Each assessment method tended to prioritise certain aspects of achievement over others. All metrics and models focus on an element or elements at the expense of others. A new composite design, the Comprehensive Researcher Achievement Model (CRAM), is presented, which supersedes past anachronistic models. The CRAM is modifiable to a range of applications.
Publisher: Elsevier BV
Date: 03-2009
DOI: 10.1016/J.HEALTHPLACE.2008.06.002
Abstract: This paper presents research aimed at identifying the extent to which pharmacy spaces are aligned to good professional practice, enhance a professional's sense of self and meet the demands of the public. Findings from a novel, qualitative, mixed-methods approach employing biographic and photographic techniques indicate that UK pharmacy spaces are less accessible than intended by the Department of Health's pharmacy contract. Pharmacists escape to the dispensary to preserve their professional self-identity and to avoid the expectations of a demanding public. Recent innovations such as consultation rooms lack clarity of intent amid the multiple functions that a busy community pharmacy demands.
Publisher: Wiley
Date: 16-09-2002
Publisher: Wiley
Date: 31-03-2017
DOI: 10.1111/JEP.12741
Publisher: BMJ
Date: 03-2020
DOI: 10.1136/BMJOPEN-2019-035448
Abstract: Clinical practice guidelines (CPGs) are designed to reduce inappropriate clinical variation and improve the quality of care. Barriers to CPGs include a lack of awareness of CPGs, access to them, time pressures and concerns regarding the evidence underpinning CPG development, implementation and dissemination. The objectives of this study are to assess clinicians’ attitudes to CPGs for cancer treatment and the perceived barriers to and facilitators of CPG adherence in order to inform the implementation of cancer treatment CPGs. A mixed methods study will be conducted using a three-phase, sequential design, with each phase informing the next. In phase 1, a qualitative study using recorded interviews will investigate clinicians’ attitudes to CPGs for cancer treatment and perceptions of barriers and facilitators to CPG adherence (n=30) interview transcripts will be analysed thematically. In phase 2, a survey will quantify the frequency of attitudes, barriers and facilitators identified in phase 1, in a broader clinical s le (n=200). In phase 3, a workshop forum will be held to facilitate discussions examining the implications of phase 1 and 2 findings for cancer CPG implementation strategies (n=40) leading to recommendations for improvements to practice. The workshop discussion will be recorded, and the transcript will be analysed thematically. This study has received ethics approval in New South Wales, Australia (2019/ETH11722, #52019568810127). Study findings will be published in peer-reviewed journals and will form part of a doctoral thesis and be presented at national and international conferences.
Publisher: Informa UK Limited
Date: 2005
Publisher: BMJ
Date: 06-2004
Publisher: Elsevier BV
Date: 06-2018
DOI: 10.1016/J.YEBEH.2018.03.028
Abstract: Adult patients with refractory epilepsy who are potential candidates for resective surgery undergo a period of presurgical investigation in tertiary epilepsy centers (TECs), where they engage extensively with healthcare professionals and receive a range of treatment-related information. This qualitative study aimed to examine the experiences of adult patients with refractory epilepsy leading up to and during presurgical investigation and how their perceptions of resective surgery are shaped. In-depth interviews with 12 patients and six epilepsy specialist clinicians and 12 observations of routine patient-clinician consultations took place at two TECs in Sydney, Australia. Data were thematically analyzed via group work. Patients reflected on prior experiences of poor seizure control and inadequate antiepileptic drug management and a lack of clarity about their condition before referral to tertiary care. Poor continuity of care and disrupted care transitions affected patients from regional locations. Tertiary referral increased engagement with personalized information about refractory epilepsy, which intensified during presurgical assessments with additional hospital visits and consultations. Experiential information, such as testimonials of other patients, influenced perceptions of surgery and fostered more trust and confidence towards healthcare professionals. Qualitative inquiry detailed multifaceted effects of information on patients' overall treatment trajectory and experience of healthcare. Earlier patient identification for surgical assessments should be accompanied by access to good quality information at primary and community care levels and strengthened referral processes.
Publisher: Elsevier BV
Date: 06-2007
DOI: 10.1016/J.HEALTHPLACE.2006.07.005
Abstract: The paper presents the results of a mixed methods study of British general practitioners' (GPs) reflections on professional space in terms of practice and self-identity. Inter-textual content analysis of 12 biographic and photographic datasets revealed four themes: workspace, re-appropriated space, life space and sacred space. GPs are ambivalent about their working environments, spending time and energy creating 'best fit' spaces, until lack of function becomes an habituated part of daily routine. Whilst some appear helpless in the face of change, others are making their presence felt through embodied, personalized or authorial spaces.
Publisher: Elsevier BV
Date: 03-2019
DOI: 10.1016/J.YEBEH.2018.11.027
Abstract: This paper offers a new way of understanding the course of a chronic, neurological condition through a comprehensive model of patient-reported determinants of health and wellbeing: The Patient Reported ImpleMentation sciEnce (PRIME) model is the first model of its kind to be based on patient-driven insights for the design and implementation of initiatives that could improve tertiary, primary, and community healthcare services for patients with refractory epilepsy, and has broad implications for other disorders PRIME focuses on: patient-reported determinants of health and wellbeing, pathways through care, gaps in treatment and other system delays, patient need and expectation, and barriers and facilitators to high-quality care provision PRIME highlights that in the context of refractory epilepsy, patients value appropriate, clear, and speedy referrals from primary care practitioners and community neurologists to specialist healthcare professionals based in tertiary epilepsy centers. Many patients also want to share in decisions around treatment and care, and gain a greater understanding of their debilitating disease, so as to find ways to self-manage their illness more effectively and plan for the future. Here, PRIME is presented using refractory epilepsy as the exemplar case, while the model remains flexible, suitable for adaptation to other settings, patient populations, and conditions PRIME comprises six critical levels: 1) The In idual Patient Model 2) The Patient Relationships Model 3) The Patient Care Pathways Model 4) The Patient Transitions Model 5) The Pre- and Postintervention Model and 6) The Comprehensive Patient Model. Each level is dealt with in detail, while Levels 5 and 6 are presented in terms of where the gaps lie in our current knowledge, in particular in relation to patients' journeys through healthcare, system intersections, and in iduals adaptive behavior following resective surgery, as well as others' views of the disease, such as family members.
Publisher: BMJ
Date: 10-2017
DOI: 10.1136/BMJOPEN-2017-017372
Abstract: One in five men is likely to receive a diagnosis of prostate cancer (PCa) by the age of 85 years. Men diagnosed with low-risk PCa may be eligible for active surveillance (AS) to monitor their cancer to ensure that any changes are discovered and responded to in a timely way. Communication of risk in this context is more complicated than determining a numerical probability of risk, as patients wish to understand the implications of risk on their lives in concrete terms. Our study will examine how risk for PCa is perceived, experienced and communicated by patients using AS with their health professionals, and the implications for treatment and care. This is a proof of concept study, testing out a multimethod, qualitative approach to data collection in the context of PCa for the first time in Australia. It is being conducted from November 2016 to December 2017 in an Australian university hospital urology clinic. Participants are 10 men with a diagnosis of localised PCa, who are using an AS protocol, and 5 health professionals who work with this patient group (eg, urologists and Pca nurses). Data will be collected using observations of patient consultations with health professionals, patient questionnaires and interviews, and interviews with healthcare professionals. Analysis will be conducted in two stages. First, observational data from consultations will be analysed thematically to encapsulate various dimensions of risk classification and consultation dialogue. Second, interview data will be coded to derive meaning in text and analysed thematically. Overarching themes will represent patient and health professional perspectives of risk communication. Ethical approval for the study has been granted by Macquarie University Human Research Ethics Committee, approval 5201600638. Knowledge translation will be achieved through publications, reports and conference presentations to patients, families, clinicians and researchers.
Publisher: Springer Science and Business Media LLC
Date: 2013
Publisher: JMIR Publications Inc.
Date: 23-11-2020
Abstract: he experiences of patients change throughout their illness trajectory and differ according to their medical history, but digital support tools are often designed for one specific moment in time and do not change with the patient as their health state changes. This presents a fragmented support pattern where patients have to move from one app to another as they move between health states, and some subpopulations of patients do not have their needs addressed at all. his study aims to investigate how patient work evolves over time for those living with type 2 diabetes mellitus and chronic multimorbidity, and explore the implications for digital support system design. n total, 26 patients with type 2 diabetes mellitus and chronic multimorbidity were recruited. Each interview was conducted twice, and interviews were transcribed and analyzed according to the Chronic Illness Trajectory Model. our unique illness trajectories were identified with different patient work goals and needs: living with stable chronic conditions involves patients seeking to make patient work as routinized and invisible as possible dealing with cycles of acute or crisis episodes included heavily multimorbid patients who sought support with therapy adherence responding to unstable changes described patients currently experiencing rapid health changes and increasing patient work intensity and coming back from crisis focused on patients coping with a loss of normalcy. atient work changes over time based on the experiences of the in idual, and its timing and trajectory need to be considered when designing digital support interventions. R2-10.1136/bmjopen-2018-022163
Publisher: Routledge
Date: 26-09-2020
Publisher: Springer Science and Business Media LLC
Date: 21-05-2020
DOI: 10.1186/S12913-020-05289-0
Abstract: The concept of rapid implementation has emerged in the literature recently, but without a precise definition. Further exploration is required to distinguish the concept’s unique meanings and significance from the perspective of implementation science. The study clarifies the concept of rapid implementation and identifies its attributes, antecedents, and consequences. We present a theoretical definition of rapid implementation to clarify its unique meaning and characteristics. Rodgers evolutionary concept analysis method, combined with a systematic integrative review, were used to clarify the concept of rapid implementation. A comprehensive search of four databases, including EMBASE, MEDLINE, SCOPUS, and WEB OF SCIENCE was conducted, as well as relevant journals and reference lists of retrieved studies. After searching databases, 2442 papers were identified from 1963 to 2019 24 articles were found to fit the inclusion criteria to capture data on rapid implementation from across healthcare settings in four countries. Data analysis was carried out using descriptive thematic analysis. The results locate the introduction of rapid implementation, informed by implementation science. Guidance for further conceptualisation to bridge the gap between research and practice and redefine rigour, adapting methods used (current approaches, procedures and frameworks), and challenging clinical trial design (efficacy-effectiveness-implementation pipeline) is provided. It is possible that we are on the cusp of a paradigm shift within implementation brought about by the need for faster results into practice and policy. Researchers can benefit from a deeper understanding of the rapid implementation concept to guide future implementation of rapid actionable results in clinical practice.
Publisher: Wiley
Date: 2004
Publisher: BMJ
Date: 04-2019
DOI: 10.1136/BMJOPEN-2018-027636
Abstract: Workspaces are socially constructed environments where social relationships are produced, reproduced, challenged and transformed. Their primary function is to support high-quality service delivery to the benefit of ‘patients’. They are also settings where employees can work effectively, in a safe and healthy environment, delivering a high-quality service according to a ‘Work-As-Done’ rather than a ‘Work-As-Imagined’ model. However, hospital design is currently based on a managerial understanding of work accomplishments, often falling short of understanding what is actually happening on the ground. Furthermore, the research landscape lacks rigorous assessment of these complex sociological and health research concepts, either within the Australian context where this protocol is set, or internationally. This paper describes an innovative protocol aimed at examining healthcare employees’ and organisations’ concerns and beliefs in workspace design. It outlines research investigating the effect of workspace use on productivity, health and safety and worker satisfaction, to clarify Work-As-Done, while creating healthy and more fulfilling environments. This is a proof-of-concept study, taking place between June 2018 and April 2019, employing a multimethod, qualitative approach for in-depth assessment of one Australian, private, university hospital environment, using as its ‘case’ the Gastroenterology Surgical Unit. It involves (1) observations and informal interviews (shadowing) with employees and patients as they traverse hospital spaces and (2) visual data of spatial use. Fieldnotes will be analysed thematically, and visual data analysed using a predefined schematic framework (a visual taxonomy). Overarching themes and categories will be considered corroboratively, mixing visual and textual data to build an iterative and dynamic picture. Ethical considerations will be discussed, while approval has been granted by the University’s Human Research Ethics Committee (HREC/5201800282), along with Governance approved by the Health Clinical Research Executive (CRG2018005). Study results will be disseminated through publications, research conferences and public reports.
Publisher: Elsevier BV
Date: 2017
DOI: 10.1016/J.IJLP.2016.05.010
Abstract: The UK has one of the highest rates of self harm (SH) in Europe, and almost four times more people die by suicide than in road traffic collisions. Emergency ambulance paramedics are often the first health professionals involved in the care of people who have self-harmed, yet little is known about the care provided or issues raised in these encounters. The aim of this study is to explore paramedics' perceptions and experiences of caring for people who SH, to inform education and policy. Semi structured interviews were conducted with paramedics, and themes generated by constant comparison coding. This paper reports two emerging themes: Firstly, professional, legal, clinical and ethical tensions, linked to limited decision support, referral options and education. The second theme of relationships with police, revealed practices and surreptitious strategies related to care and detention, aimed at overcoming complexities of care. In the absence of tailored education, guidance or support for self-harm care, 'ways and means' have evolved which may negatively influence care and challenge ethical and legal frameworks. There is an urgent need to include evidence from this study in revised guidance and educational materials for paramedics working with people who self-harm in the prehospital emergency setting.
Publisher: Springer Science and Business Media LLC
Date: 11-01-2011
Abstract: Inequalities in health have proved resistant to 'top down' approaches. It is increasingly recognised that health promotion initiatives are unlikely to succeed without strong local involvement at all stages of the process and many programmes now use grass roots approaches. A healthy living approach to community development (HLA) was developed as an innovative response to local concerns about a lack of appropriate services in two deprived communities in Pembrokeshire, West Wales. We sought to assess feasibility, costs, benefits and working relationships of this HLA. The HLA intervention operated through existing community forums and focused on the whole community and its relationship with statutory and voluntary sectors. Local people were trained as community researchers and gathered views about local needs though resident interviews. Forums used interview results to write action plans, disseminated to commissioning organisations. The process was supported throughout through the project. The evaluation used a multi-method before and after study design including process and outcome formative and summative evaluation data gathered through documentary evidence, diaries and reflective accounts, semi-structured interviews, focus groups and costing proformas. Main outcome measures were processes and timelines of implementation of HLA self reported impact on communities and participants community-agency processes of liaison costs. Communities were able to produce and disseminate action plans based on locally-identified needs. The process was slower than anticipated: few community changes had occurred but expectations were high. Community participants gained skills and confidence. Cross-sector partnership working developed. The process had credibility within service provider organisations but mechanisms for refocusing commissioning were patchy. Intervention costs averaged £58,304 per community per annum. The intervention was feasible and inexpensive, with indications of potential impact at in idual, community and policy planning levels. However, it is a long term process which requires sustained investment and must be embedded in planning and service delivery processes.
Publisher: Elsevier BV
Date: 07-2012
DOI: 10.1016/J.SOCSCIMED.2012.02.058
Abstract: Previous research has shown that a majority of people communicate their suicidal ideas and intent prior to the act of suicide, but very little is known about the way in which these suicide communication events are interpreted by relatives, friends and significant others. A suicide communication event (SCE) is defined as a set of circumstances in which a person expresses suicidal feelings, thoughts, intentions or plans, either directly or indirectly, in interaction with other people in their social environment. In a qualitative study conducted in 2008-9 we collected narratives from people bereaved by suicide. Here we examine these narratives using an analytic framework derived from communication pragmatics and face-work theory. We analysed 14 cases of completed suicide drawn from coroner's case files in London, Southwest England and South Wales. We found that the SCEs described were potentially face-threatening situations requiring face-saving strategies, which often resulted in off-record, indirect, ambiguous, humorous and euphemistic communications. Listeners frequently found it difficult to judge the meaning and intention of utterances referring to suicide. The outcome was often misunderstanding and closure of the communication, limiting the possibility of further support and referral for professional help. SCEs are important elements of the suicide process and we conclude that better understanding of how they occur and the challenges they pose for significant others may provide a basis for strengthening public involvement in suicide prevention. We draw our findings together in a model that could inform public awareness c aigns designed to improve the way people communicate with each other about suicide and distress.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 04-05-2021
DOI: 10.1097/AUD.0000000000001059
Abstract: Listening effort may be defined as the attentional and cognitive resources needed to understand an auditory message, modulated by motivation. Despite the use of hearing devices such as hearing aids or cochlear implants (CIs), the requirement for high listening effort remains a challenge for in iduals with hearing loss. The Listening Effort Questionnaire—Cochlear Implant (LEQ-CI) is a hearing-specific patient-reported outcome measure (PROM), which has been designed for use in the CI candidacy and rehabilitation process to assess perceived listening effort in everyday life in adults with severe-profound hearing loss. The LEQ-CI has been developed in line with international consensus-based standards for best practice in PROM construction. The aim of this study was to improve the measurement precision of the LEQ-CI and to assess its psychometric measurement properties. A field test was undertaken with 330 CI patients from five National Health Service auditory implant centers in the United Kingdom. Participants were adults (≥18 years of age), had a severe-profound hearing loss, and met the UK candidacy criteria for cochlear implantation specified by the National Institute for Health and Care Excellence (NICE). Participants completed and returned an anonymized 29-item (each with a 5- or 7-point response option), draft version of the LEQ-CI (LEQ-CI 29 ) and a demographic questionnaire. Rasch analysis was undertaken using Winsteps software and the partial credit model to assess rating scale function and item fit. Results informed refinements to produce a 21-item version (LEQ-CI 21 ), which underwent a further Rasch analysis. The s le was predominantly female: 60.3% (n = 191). Median age of participants was 66 (range 21 to 89) years, with 7.3% (n = 24) of respondents being CI candidates and 92.7% (n = 306) being CI recipients. Mean duration of implantation was 3.8 (SD = 4.8) years. Initial Rasch analysis of the LEQ-CI 29 revealed poor rating scale functioning. Collapsing the 5- and 7-point rating scales to 3- and 4-point scales and removing eight items produced a 21-item PROM (LEQ-CI 21 ). Rasch analysis of the LEQ-CI 21 showed good fit to the Rasch measurement model. No items showed misfit and dimensionality analysis supported the existence of a single Rasch dimension, defined as perceived listening effort in daily life. Person reliability was 0.91 and the person separation index was 3.28, establishing four levels of person ability. The item separation index was 9.69, confirming the item hierarchy. No items showed differential item functioning for gender or age. The item difficulty range was –0.81 to 1.05, the person ability range for nonextreme persons was –3.54 to 2.49, and the mean person ability was –0.31. Overall, the LEQ-CI 21 was found to meet the Rasch model criteria for interval-level measurement. The LEQ-CI 21 is the first PROM to be developed specifically for the measurement of perceived listening effort and one of the first patient-reported outcome measures for use with CI patients to be developed using Rasch analysis. The LEQ-CI 21 has the potential to be used as a research tool and in clinical practice to evaluate perceived listening effort in daily life. Further psychometric evaluation of the LEQ-CI 21 is planned.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 24-07-2019
DOI: 10.1097/AUD.0000000000000762
Abstract: Hearing loss (HL) affects a significant proportion of adults aged years by impairing communication and social connectedness and, due to its high prevalence, is a growing global concern. Cochlear implants (CIs) are effective devices for many people with severe or greater sensorineural HL who experience limited benefits from hearing aids. Despite this, uptake rates globally are low among adults. This multimethod, multicountry qualitative study aimed to investigate the barriers and facilitators to CI uptake among adults aged ≥50 years. Adult CI and hearing aid users with postlingual severe or greater sensorineural HL, general practitioners, and audiologists were recruited in Australia using purposive s ling, and a comparative s le of audiologists was recruited in England and Wales in the United Kingdom. Participants were interviewed in idually, or in a focus group, completed a demographic questionnaire and a qualitative survey. Data were analyzed using thematic analysis. A total of 143 data capture events were collected from 55 participants. The main barriers to CI uptake related to patients’ concerns about surgery and loss of residual hearing. Limited knowledge of CIs, eligibility criteria, and referral processes acted as barriers to CIs assessment referrals by healthcare professionals. Facilitators for CI uptake included patients’ desire for improved communication and social engagement, and increased healthcare professional knowledge and awareness of CIs. There are numerous complex barriers and facilitators to CI uptake. Knowledge of these can inform the development of targeted strategies to increase CI referral and surgery for potential beneficiaries.
Publisher: Elsevier BV
Date: 06-2015
DOI: 10.1016/J.JPSYCHORES.2015.03.007
Abstract: Presentations of self-harm to paramedic and emergency staff are increasing, and despite being the first professionals encountered, patients who self-harm report the quality of care and attitudes from these staff are unsatisfactory. Understanding this care may provide opportunities to improve services. The aim of this study is to enhance knowledge building and theory generation in order to develop practice and policy through a metasynthesis of qualitative research relating to perceptions of paramedic and emergency care for people who self-harm. The metasynthesis draws on Evolved Grounded Theory Methodology (EGTM). A search was undertaken of CINAHL, MEDLINE, OVID and Psych INFO, and grey literature. Subject headings of 'self-harm' were used alongside key words 'suicide', 'paramedic' 'emergency', 'overdose', 'pre-hospital' mental health, ambulance, perceptions of care, emergency. A total of 1103 papers were retrieved 12 were finally included. No papers investigated paramedic care for self-harm. The following metaphors emerged: (a) frustration, futility and legitimacy of care (b) first contact in the pre-hospital environment: talking, immediate and lasting implications of the moral agent (c) decision making in self-harm: balancing legislation, risk and autonomy (d) paramedics' perceptions: harnessing professionalism and opportunities to contribute to the care of self-harm. Paramedics are often the first health professional contact following self-harm, yet limited qualitative literature has explored this encounter. Metaphors revealed in this paper highlight challenges in decision making and legislation, also opportunities to improve care through professionalization and tailored education.
Publisher: American Chemical Society (ACS)
Date: 04-01-2022
Publisher: SAGE Publications
Date: 21-06-2013
Abstract: The study aimed to clarify the notion of patient-centred professionalism through consultation with the public, stakeholders and professionals in order to develop a thematic template within nursing. The paper also examines innovative methodology informing eight template themes developed qualitatively. Patient-centred professionalism has had little coverage in nursing literature, whilst ‘patient-centredness’ is supporting patients through holistic care according to needs and expectations. The study took place in Wales, UK, between October 2009 and September 2010. Data collection entailed consultation workshops with newly qualifying nurses (13 participants), community nurses (nine participants), nursing stakeholders (six participants) and the public (six participants). Analysis involved summative and thematic approaches. Result were revealed through template themes, identified in rank order of significance: the patient, nursing ethos, community nurse as a person, knowledge and skills, working relationships, service delivery, training and information and environment. The patient comes first for nurses and was the major theme of the analysis. This almost goes without saying for nurses, whilst for patients this is a surprise, as they see themselves as marginalised. The patient in patient-centred professionalism has multiple identities, many of which contradict one another – recipient and object of care, a force of resistance and a focus of negotiation. In conclusion, a clearer understanding of the concept should play a central role in policy development for optimal care, informing education and training, and methodological strengths could be explored further by other researchers, across a wide range of contexts.
Publisher: Springer Science and Business Media LLC
Date: 10-2022
DOI: 10.1186/S43058-022-00351-W
Abstract: Sentinel node biopsy (SN biopsy) is a surgical procedure used to accurately stage patients with primary melanoma at high risk of recurrence. Although Australian Melanoma Management Guidelines recommend SN biopsy be considered in patients with melanomas 1 mm thick, SN biopsy rates in Australia are reportedly low. Our objective was to identify factors impacting the acceptance, adoption and adherence to the Australian SN biopsy guideline recommendations. Opinions of Australian key informants including clinicians, representatives from melanoma education and training providers, professional associations and colleges, and melanoma advocacy organisations were collected through semi-structured interviews ( n = 29) and from publicly released statements ( n = 14 news articles). Data analysis involved inductive and deductive thematic analysis using Flottorp’s determinants framework. A complex interplay of contemporary and historical factors was identified as influencing acceptance, adoption and adherence to the SN biopsy guideline recommendations at the in idual, guideline, patient, organisational and social levels. Expert and peer opinion leaders have played an important role in facilitating or inhibiting adoption of guideline recommendations, as have financial incentives driven by healthcare-funding policies and non-financial incentives including professional identity and standing. Of critical importance have been the social and knowledge boundaries that exist between different professional groups to whom the guidelines apply (surgeons, dermatologists and primary care practitioners) with adherence to the guideline recommendations having the potential to shift work across professional boundaries, altering a clinician’s workflow and revenue. More recently, the emergence of effective immunotherapies and targeted therapies for patients at high risk of recurrence, the emergence of new opinion leaders on the topic (in medical oncology), and patient demands for accurate staging are playing crucial roles in overcoming the resistance to change created by these social and knowledge boundaries. Acceptance and adherence to SN biopsy guideline recommendations in Australia over the past 20 years has involved a process of renegotiation and reframing of the evidence for SN biopsy in melanoma by clinicians from different professional groups and networks. This process has helped to refine the evidence for SN biopsy and our understanding of appropriate adoption. New effective systemic therapies have changed the balance towards accepting guideline recommendations.
Publisher: BMJ
Date: 09-2021
DOI: 10.1136/BMJOPEN-2021-050912
Abstract: Clinical practice guidelines (CPGs) synthesise the latest evidence to support clinical and patient decision-making. CPG adherent care is associated with improved patient survival outcomes however, adherence rates are low across some cancer streams in Australia. Greater understanding of specific barriers to cancer treatment CPG adherence is warranted to inform future implementation strategies. This paper presents the protocol for a systematic review that aims to determine cancer treatment CPG adherence rates in Australia across a variety of common cancers, and to identify any factors associated with adherence to those CPGs, as well as any associations between CPG adherence and patient outcomes. Five databases will be searched, Ovid Medline, PsychInfo, Embase, Scopus and Web of Science, for eligible studies evaluating adherence rates to cancer treatment CPGs in Australia. A team of reviewers will screen the abstracts in pairs according to predetermined inclusion criteria and then review the full text of eligible studies. All included studies will be assessed for quality and risk of bias. Data will be extracted using a predefined data extraction template. The frequency or rate of adherence to CPGs, factors associated with adherence to those CPGs and any reported patient outcome rates (eg, relative risk ratios or 5-year survival rates) associated with adherence to CPGs will be described. If applicable, a pooled estimate of the rate of adherence will be calculated by conducting a random-effects meta-analysis. The systematic review will adhere to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Ethics approval will not be required, as this review will present anonymised data from other published studies. Results from this study will form part of a doctoral dissertation (MB), will be published in a journal, presented at conferences, and other academic presentations. CRD42020222962.
Publisher: Wiley
Date: 15-07-2021
DOI: 10.1111/JEP.13600
Abstract: Implementation science (IS) should contribute to maintaining high standards of care across healthcare systems and enhancing care practices. However, despite the evident need for greater and more rapid uptake and integration of evidence in practice, IS design and methodology fall short of the needs of effective translation. In this paper we examine what it is about IS that makes it so appealing for effective uptake of interventions in routine practice, and yet so difficult to achieve. We propose a number of ways that implementation scientists could build mutual relationships with healthcare practitioners and other stakeholders including public members to ensure greater shared care practices, and highlight the value of IS training, collaborative educational events, and co‐designed research. More consideration should be given to IS applications in healthcare contexts. Implementation scientists can make a valuable contribution by mobilizing theory and improving practice. However, goals for an evidence‐based system may be more appropriately achieved through greater outreach and collaboration, with methods that are flexible to support rapid implementation in complex adaptive systems. Collective learning and mutual trust can be cultivated by embedding researchers into healthcare services while offering greater opportunities for practitioners to learn about, and engage in, implementation research. To bridge the worlds of healthcare practice and IS, researchers could be more consistent in the relationships they build with professionals and the public, communicating through a shared language and co‐joining practical approaches to effective implementation. This will build capacity for improved collaboration and foster respectful, interdisciplinary relationships.
Publisher: Elsevier BV
Date: 04-2018
Publisher: Springer Science and Business Media LLC
Date: 11-03-2015
Publisher: Springer Science and Business Media LLC
Date: 29-10-2018
Publisher: Sciencedomain International
Date: 10-01-2013
Publisher: SAGE Publications
Date: 22-09-2017
Abstract: Breast cancer risk classifications are useful for prognosis, yet little is known of their effect on patients. This study clarified women's understandings of risk as they "journeyed" through the health care system. Breast cancer patients and women undergoing genetic investigation were recruited ( N = 25) from a large UK Health Board, 2014-2015, completing a "Book of Experience," and Bio-photographic elicitation interviews. Stakeholder and Participant Feedback Forums were undertaken with key stakeholders, including patients, oncologists, funders, and policy developers, to inform team understanding. Thematic and visual frameworks from multidisciplinary analysis workshops uncovered two themes: "Subjective Understandings of Risk" and "Journeying Toward an Unknown Future." Breast cancer patients and women undergoing investigation experienced risk intuitively. Statistical formulations were often perplexing, erting attention away from concrete life-and-death facts. Following risk classification, care must be co-defined to reduce patients' foreboding about an unknown future, taking into consideration personal risk management strategies and aspirations for a cancer-free future.
Publisher: BMJ
Date: 08-2017
DOI: 10.1136/BMJOPEN-2017-017148
Abstract: One-third of patients with refractory epilepsy may be candidates for resective surgery, which can lead to positive clinical outcomes if efficiently managed. In Australia, there is currently between a 6-month and 2-year delay for patients who are candidates for respective epilepsy surgery from the point of referral for surgical assessment to the eventual surgical intervention. This is a major challenge for implementation of effective treatment for in iduals who could potentially benefit from surgery. This study examines implications of delays following the point of eligibility for surgery, in the assessment and treatment of patients, and the factors causing treatment delays. Mixed methods design: Observations of qualitative consultations, patient and healthcare professional interviews, and health-related quality of life assessments for a group of 10 patients and six healthcare professionals (group 1) quantitative retrospective medical records’ reviews examining longitudinal outcomes for 50 patients assessed for, or undergoing, resective surgery between 2014 and 2016 (group 2) retrospective epidemiological study of all in iduals hospitalised with a diagnosis of epilepsy in New South Wales (NSW) in the last 5 years (2012–2016 approximately 11 000 hospitalisations per year, total 55 000), examining health services’ use and treatment for in iduals with epilepsy, including refractory surgery outcomes (group 3). Ethical approval has been granted by the North Sydney Local Health District Human Research Ethics Committee (HREC/17/HAWKE/22) and the NSW Population & Health Services Research Ethics Committee (HREC/16/CIPHS/1). Results will be disseminated through publications, reports and conference presentations to patients and families, health professionals and researchers.
Publisher: Oxford University Press (OUP)
Date: 14-09-2010
DOI: 10.1111/J.2042-7174.2010.00056.X
Abstract: The study aimed to clarify patient-centred professionalism within and across community pharmacy settings position that knowledge in a modern-day environment, accessing the opinions and experiences of patients and professionals inform the literature on the value of consultation workshops within this context and develop a template of positive and challenging exemplars of patient-centred professionalism within these contexts. Thirty-nine study participants contributed to extended consultation workshops. Sessions were supported by bio-photographic data of healthcare practices across a range of different settings, and a final forum event. Thematic analysis of qualitative data, supported by the Nominal Group Work technique, led to a template containing 11 themes of positive and challenging aspects of patient-centred professionalism: safety, professional characteristics, relationships with patients, confidentiality and privacy, accessibility, training, professional pressures, services, environment, changing professional roles and patient characteristics. Themes, while descriptive and rich, highlight difficulties in defining this notion, which is both nuanced and ambiguous. While study participants were interested in the everyday ex les of practice and interaction, they were strongly influenced by their different agendas and experiences. Patients, for ex le, wanted a quick and efficient dispensing service, where their needs and expectations came first. Pharmacists, on the other hand, found that pressing patient demands and overarching company policies led to professional anxiety that distracted them from what they perceived to be the defining aspect of their professionalism, dispensary work. The study outcomes indicate, in line with international literature, that while proud of supporting patients, many pharmacists feel demoralised, torn between pressing public and professional demands and the expectations of advice-giving in unfamiliar, formal situations within nondescript, corporate workspaces.
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Frances Rapport.