Systemic safety inequities for people with learning disabilities: a qualitative integrative analysis of the experiences of English health and social care for people with learning disabilities, their families and carers.

BACKGROUND: Failures in care for people with learning disabilities have been repeatedly highlighted and remain an international issue, exemplified by a disparity in premature death due to poor quality and unsafe care. This needs urgent attention. Therefore, the aim of the study was to understand the care experiences of people with learning disabilities, and explore the potential patient safety issues they, their carers and families raised. METHODS: Two data sources exploring the lived experience of care for people with learning disabilities were synthesised using an integrative approach, and explored using reflexive thematic analysis. This comprised two focus groups with a total of 13 people with learning disabilities and supportive staff, and 377 narratives posted publicly via the feedback platform Care Opinion. RESULTS: The qualitative exploration highlighted three key themes. Firstly, health and social care systems operated with varying levels of rigidity. This contributed to an inability to effectively cater to; complex and individualised care needs, written and verbal communication needs and needs for adequate time and space. Secondly, there were various gaps and traps within systems for this population. This highlighted the importance of care continuity, interoperability and attending to the variation in support provision from professionals. Finally, essential 'dependency work' was reliant upon social capital and fulfilled by paid and unpaid caring roles to divergent extents, however, advocacy provided an additional supportive safety net. CONCLUSIONS: A series of safety inequities have been identified for people with learning disabilities, alongside potential protective buffers. These include; access to social support and advocacy, a malleable system able to accommodate for individualised care and communication needs, adequate staffing levels, sufficient learning disabilities expertise within and between care settings, and the interoperability of safety initiatives. In order to attend to the safety inequities for this population, these factors need to be considered at a policy and organisational level, spanning across health and social care systems. Findings have wide ranging implications for those with learning disabilities, their carers and families and health and social care providers, with the potential for international learning more widely.

Good bedside teaching on secondary care placement: The student perspective.

BACKGROUND: Students' experience of bedside teaching (BST) on clinical placement has significantly decreased, with a shift in teaching away from the bedside. The educational value of teaching on ward rounds (WRs) has also been debated. OBJECTIVE: This research considered what constitutes good BST from the student perspective; guidance to support clinician teachers was produced. METHODS: Semi-structured interviews were conducted with 10 second-year students and 10 fourth- and fifth-year students studying at Leeds Medical School. Data were analysed using thematic analysis. FINDINGS: We identified four themes: (1) benefits of early clinical experience, (2) qualities of good clinical teachers, (3) shift in preference from structured to opportunistic learning and (4) increased valuing of the WR as a site of learning. CONCLUSION: The structure of BST should be adapted to the learners' stage of training with a graduated approach, from a structured preparation for observation to authentic, observed participation with feedback. Students' early lack of clinical knowledge makes it difficult to meaningfully observe and partake in ward activities. During early clinical experience, good teaching is perceived as structured and supported by the clinician. As learners progress, they are better able to engage in opportunistic learning, which actively involves them in patient care. They also valued structured teaching and feedback. While patient contact should be supervised, a more participatory, observed and feedback-driven approach should be adopted in the later years. Teaching must address both knowledge and skills required to be a doctor; this is facilitated by an active role in patient care.

Neoadjuvant treatment of endometrial cancer using anastrozole: a randomised pilot study.

OBJECTIVE: Excessive oestrogenic stimulation is a well-known risk factor for the development and progression of endometrial cancer. Aromatase is the key enzyme which catalyses the conversion of androgens to oestrogens in postmenopausal women. Inhibition of aromatase may therefore be a useful strategy in the management of endometrial cancer. A pilot study was designed to assess the feasibility of a neoadjuvant model and understand the biological effects of anastrozole, an aromatase inhibitor, in the treatment of endometrial cancer. METHODS: Patients with endometrial cancer who consented to participate in the study were randomised to receive anastrozole or placebo for a minimum of 14 days prior to definitive surgery. Endometrial samples were obtained before and after treatment. Immunohistochemistry was performed to ascertain the expression of oestrogen receptor alpha (ERα), progesterone receptor (PR), androgen receptor (AR), ki-67 and Bcl2 before and after treatment in glands and stroma of the endometrium. RESULTS: A total of 16 patients were randomised to the anastrozole arm and 8 to the placebo arm (2:1 randomisation). A significant decrease in the glandular expression of ERα and AR was observed in the anastrozole arm. There was no significant change in the expression of PR or Bcl2. Expression of ki-67, a proliferation marker, also decreased significantly following treatment with anastrozole. CONCLUSIONS: Treatment with anastrozole caused a significant decrease in proliferation as demonstrated by decreased ki-67 expression. A large randomised controlled trial is warranted to fully assess the role of anastrozole in the neoadjuvant treatment of endometrial cancer.

Menopause and healthcare professional education: A scoping review.

OBJECTIVES: There has been a growing discourse regarding menopause, but despite this growth there is little education on this important topic across health professions. This scoping review provides a comprehensive synthesis of how menopause is represented in health professions' education literature, to inform future pedagogy and practice. DESIGN: A scoping review using the framework developed by Arksey and O'Malley (2005). METHODS: In the scoping review, only empirical studies were considered and only those published in the English language were included. Four databases were interrogated using a variety of search terms, including menopause, healthcare, medical and education. RESULTS: Twelve studies were included and mapped independently by the authors onto the internally developed data-extraction tool. Insights into how menopause is understood in educational terms and how it is taught within health professions' education were gained, specifically in relation to knowledge, language used, and learning and educational gaps. CONCLUSION: The review establishes how menopause is understood in educational terms and how it is taught within health professions' education, and develops an understanding of the pedagogy of menopause. There is an urgent need for menopause to be included in mainstream curricula and for an appropriate pedagogy that acknowledges the complexity of the topic, to achieve excellence in education across health professions' education. There is a broader perspective in addressing the challenges for health professions' education in terms of the prioritisation and pedagogy of women's health.

Preparedness is not enough: understanding transitions as critically intensive learning periods.

OBJECTIVES: Doctors make many transitions whilst they are training and throughout their ensuing careers. Despite studies showing that transitions in other high-risk professions such as aviation have been linked to increased risk in the form of adverse outcomes, the effects of changes on doctors' performance and consequent implications for patient safety have been under-researched. The purpose of this project was to investigate the effects of transitions upon medical performance. METHODS: The project sought to focus on the inter-relationships between doctors and the complex work settings into which they transition. To this end, a 'collective' case study of doctors was designed. Key transitions for foundation year and specialist trainee doctors were studied. Four levels of the case were examined, pertaining to: the regulatory and policy context; employer requirements; the clinical teams in which doctors worked, and the doctors themselves. Data collection methods included interviews, observations and desk-based research. RESULTS: A number of problems with doctors' transitions that can all adversely affect performance were identified. (i) Transitions are regulated but not systematically monitored. (ii) Actual practice (as observed and reported) was determined much more by situational and contextual factors than by the formal (regulatory and management) frameworks. (iii) Trainees' and health professionals' accounts of their actual experiences of work showed how performance is dependent on the local learning environment. (iv) The increased regulation of clinical activity through protocols and care pathways helps to improve trainees' performance, whereas the less regulated aspects of work, such as rotas, induction and the making of multiple transitions within rotations, can impede performance during a period of transition. CONCLUSIONS: Transitions may be reframed as critically intensive learning periods (CILPs) in which doctors engage with the particularities of the setting and establish working relationships with other doctors and other professionals. Institutions and wards have their own learning cultures which may or may not recognise that transitions are CILPS. The extent to which these cultures take account of transitions as CILPs will contribute to the performance of new doctors. Thus, these findings have implications for practice and for policy, regulation and research.

Patient involvement in teaching and assessing intimate examination skills: a systematic review.

OBJECTIVES: There are recognised difficulties in teaching and assessing intimate examination skills that relate to the sensitive nature of the various examinations and the anxiety faced by novice learners. This systematic review provides a summary of the evidence for the involvement of real patients (RPs) and simulated patients (SPs) in the training of health care professionals in intimate examination skills. METHODS: For the review, 'intimate examinations' included pelvic, breast, testicular and rectal examinations. Major databases were searched from the start of the database to December 2008. The synthesis of findings is integrated by narrative structured to address the main research questions, which sought to establish: the objectives of programmes involving RPs and SPs as teachers of intimate examination skills; reasons why SPs have been involved in this training; the evidence for the effectiveness of such training programmes; the evidence for measures of anxiety in students learning how to perform intimate examinations; how well issues of sexuality are addressed in the literature; any reported negative effects of involvement in teaching on the patients, and suggestions for practical strategies for involving patients in the teaching of intimate examination skills. RESULTS: A total of 65 articles were included in the review. Involving patients in teaching intimate examination skills offers advantages over traditional methods of teaching. Objective evidence for the effectiveness of this method is demonstrated through improved clinical performance, reduced anxiety and positive evaluation of programmes. Practical strategies for implementing such programmes are also reported. CONCLUSIONS: There is evidence of a short-term positive impact of patient involvement in the teaching and assessment of intimate examination skills; however, evidence of longer-term impact is still limited. The influences of sexuality and anxiety related to such examinations are explored to some extent, but the psychological impact on learners and patients is not well addressed.

Learning practice? Exploring the links between transitions and medical performance.

PURPOSE: The aims of this paper are to understand the links between work transitions and doctors' performance and to identify the implications for policy, regulation, practice and research. DESIGN/METHODOLOGY/APPROACH: The paper explains transitions in terms of the inseparability of learning, practice and performance and introduces the concept of the transition as a critically intensive learning period to draw attention to this phenomenon. It also identifies implications for practice, research and regulation. FINDINGS: Drawing on empirical data in relation to prescribing and case management, the paper will show that, in contrast to current assumptions of, understanding about and practice in doctors' transitions, doctors can never be fully prepared in advance for aspects of their work. ORIGINALITY/VALUE: Transitions are explained in terms of the inseparability of learning, practice and performance and we introduce the concept of the transition as a critically intensive learning period to draw attention to this phenomenon. Also identified are implications for practice, research and regulation.

'Hobson's choice': a qualitative study of consent in acute surgery.

OBJECTIVES: The study aimed to understand through qualitative research what patients considered material in their decision to consent to an acute surgical intervention. PARTICIPANTS, SETTING AND INTERVENTION: The patients selected aged between 18 and 90, having been admitted to a major trauma centre to undergo an acute surgical intervention within 14 days of injury, where English was their first language. Data saturation point was reached after 21 patients had been recruited. Data collection and analysis were conducted simultaneously, through interviews undertaken immediately prior to surgery. The data were coded using NVIVO V.12 software. RESULTS: The key theme that originated from the data analysis was patients were unable to identify any individual risk that would modify their decision-making process around giving consent. The patient's previous experience and the experience of others around them were a further theme. Patients sensed that there were no non-operative options for their injuries. CONCLUSION: This is the first study investigating what patient considered a material risk in the consent process. Patients in this study did attribute significance to past experiences of friends and family as material, prompting us to suggest that the surgeon asks about these experiences as part of the consent process. Concern about functional recovery was important to patients but insufficient to stop them from consenting to surgery, thus could not be classified as material risk.

Strategies and interventions for the involvement of real patients in medical education: a systematic review.

OBJECTIVES: There is increasing emphasis on encouraging more active involvement of patients in medical education. This is based on the recognition of patients as 'experts' in their own medical conditions and may help to enhance student experiences of real-world medicine. This systematic review provides a summary of evidence for the role and effectiveness of real patient involvement in medical education. METHODS: MEDLINE, EMBASE, ERIC, PsychINFO, Sociological Abstracts and CINAHL were searched from the start of the databases to July 2007. Three key journals and reference lists of existing reviews were also searched. Articles published in English and reporting primary empirical research on the involvement of real patients in medical education were included. The synthesis of findings is integrated by narrative structured in such a way to address the research questions. RESULTS: A total of 47 articles were included in the review. The majority of studies reported patients in the role of teachers only; others described patient involvement in assessment or curriculum development or in combined roles. Patient involvement was recommended in order to bring the patient voice into education. There were several examples of how to recruit and train patients to perform an educational role. The effectiveness of patient involvement was measured by evaluation studies and reported improvements in skills. CONCLUSIONS: There was limited evidence of the long-term effectiveness of patient involvement and issues of ethics, psychological impact and influence on education policy were poorly explored. Future studies should address these issues and should explore the practicalities of sustaining such educational programmes within medical schools.

What educators and students really think about using patients as teachers in medical education: a qualitative study.

OBJECTIVES: Patients play an integral part in medical education, either as passive, clinical exemplars or as more active facilitators in the development of skills. In theory, the patient-teacher may enhance the student learning experience by creating an environment similar to that of the medical workplace and encouraging the process of becoming a professional. Although many medical schools have integrated patient-teachers within their curricula, there is little evidence of how those involved in providing or receiving medical education view patient-teachers' contributions to their education. This study investigates the views and experiences of medical tutors and students of involving patients in undergraduate curricula. METHODS: We conducted a cross-sectional survey employing qualitative research methods. Semi-structured focus group interviews were used to elicit participants' views and experiences of patient involvement in medical education. The transcripts were content-analysed using a coding framework. RESULTS: A total of 46 participants consisting of medical educators and medical students took part in nine focus groups. Four themes emerged: the role of the patient in learning and teaching; the impact of the patient-teacher; the impact of being the storyteller, and mechanisms to explain the patient-teacher role in medical training. CONCLUSIONS: There is support for patient involvement in teaching. The logistics involved in supporting programmes of patient involvement and the need to link the teaching to overall course objectives should be addressed.

Learning from interprofessional education: A cautionary tale.

BACKGROUND: Interprofessional education (IPE) is time consuming to develop and sustain and presents many logistical and practical challenges to curriculum developers. Drawing on findings from an evaluation study of an IPE pilot, this paper brings new insights into both positive implications and potentially negative consequences of delivering large scale IPE. OBJECTIVE: The aim of the study was to evaluate a large scale IPE pilot delivered to students in the first year of their training. DESIGN AND SETTING: The IPE pilot took place on campus and was focused on patient safety (human factors). PARTICIPANTS: The study involved 630 first year undergraduates across 10 programmes at a UK university. METHODS: A mixed methods evaluation was conducted comprising a paper-based survey circulated at the end of the taught session followed by uni-professional focus groups (n = 4). Questionnaire data was subject to descriptive statistical analysis and key themes were generated from the focus group data. RESULTS: Three overarching themes emerged from analysis of the qualitative data: Understanding differences in roles, Learning about stereotypes and Unintended perpetuation of stereotypes. CONCLUSIONS: IPE is an important part of the training of all health and social care professionals and the study revealed many benefits of this approach. However, we should be sensitive to the possibility of inadvertently perpetuating negative stereotypes as a consequence of IPE activities. Our work highlights the need for caution when considering the planning and executing IPE activities.

Patients as teachers: a randomised controlled trial on the use of personal stories of harm to raise awareness of patient safety for doctors in training.

BACKGROUND: Patient safety training often provides learners with a health professional's perspective rather than the patient's. Personal narratives of health-related harm allow patients to share their stories with health professionals to influence clinical behaviour by rousing emotions and improving attitudes to safety. AIM: This study measured the impact of patient narratives used to train junior doctors in patient safety. METHODS: An open, multi-centre, two-arm, parallel design randomised controlled trial was conducted in the North Yorkshire East Coast Foundation School (NYECFS). The intervention consisted of 1-h-long patient narratives followed by discussion. The control arm received conventional faculty-delivered teaching. The Attitude to Patient Safety Questionnaire (APSQ) and the Positive and Negative Affect Schedule (PANAS) were used to measure the impact of the intervention. RESULTS: 142 trainees received the intervention; 141 the control teaching. There was no evidence of a difference in post-intervention APSQ scores between the groups. There was a statistically significant difference in the underlying distribution of both post PA (positive affect) and post NA (negative affect) scores between the groups on the PANAS (p<0.001) with indications of both higher PA and NA scores in the intervention group. CONCLUSIONS: Involving patients with experiences of safety incidents in training has an ideological appeal and seems an obvious choice in designing safety interventions. On the basis of our primary outcome measure, we were unable to demonstrate effectiveness of the intervention in changing general attitudes to safety compared to control. While the intervention may impact on emotional engagement and learning about communication, we remain uncertain whether this will translate into improved behaviours in the clinical context or indeed if there are any negative effects. TRIAL REGISTRATION NUMBER: Grant reference no. RP-PG-0108-10049.