The pregnancy experiences of amputee women: a qualitative exploration of online posts.

BACKGROUND: This paper seeks to explore the pregnancy experiences of amputee women. Relatively little is known about pregnancy for amputees, but the wider literature on disability and pregnancy shows that the disabled pregnant body is often viewed as 'high risk'. The majority of amputations (90%) involve lower limb amputations; whilst our analytical interest was not limited to lower limb amputations, the sources we explored reflected the prevalence of lower limb amputees. METHODS: Using online blogs and first-person accounts from 6 different sources (3 authors of blogs, 2 authors of websites and 1 author of an information page on a general amputation website), we thematically analyse amputee women's own narratives around their experiences of pregnancy. FINDINGS: Four key themes were identified, which we describe as: The lack of information for the pregnant amputee; Managing risks; The embodied experience of suffering; and 'It's all worth it in the end'. Women amputees faced trade-offs between risks to self and the unborn child and reported physical discomforts due to pregnancy-related bodily changes impacting their prosthesis or residual limb. The challenges of pregnancy as an amputee were, however, all seen to be outweighed by the safe arrival of a healthy baby. CONCLUSIONS: The lack of information on pregnancy for amputees may affect women's resilience to the adaptation challenges they face. Research should further explore the experiences of amputee mothers to ensure adequate information is available to them and their caring professionals, and that the needs of women with more challenging experiences are also addressed.

Co-designing health services for people living with HIV who have multimorbidity: a feasibility study.

This study explored the feasibility of using an experience-based co-design service improvement methodology to develop a new approach to managing multimorbidity in people living with HIV. Patients with HIV and multimorbidity and staff were recruited from five hospital departments and general practice. Staff and patient experiences were gathered through semi-structured interviews, filmed patient interviews, non-participant observation and patient diaries. A composite film developed from interviews illustrated the touchpoints in the patient journey, and priorities for service improvement were identified by staff and patients in focus groups. Twenty-two people living with HIV and 14 staff took part. Four patients completed a diary and 10 a filmed interview. Analysis identified eight touchpoints, and group work pinpointed three improvement priorities: medical records and information sharing; appointment management; and care co-ordination and streamlining. This study demonstrates that experience-based co-design is feasible in the context of HIV and can inform healthcare improvement for people with multimorbidity.

Patient experience data as enacted: Sociomaterial perspectives and 'singular-multiples' in health care quality improvement research.

Over the last three decades, sociomaterial approaches to the study of health care practices have made an important contribution to the sociology of health care. Significant attention has been paid to the role of technology and artefacts in health care and the operation of actor-networks but less space has been given to questions of ontological multiplicity in health care practices. In this paper, we draw upon our study of patient experience data in five acute hospitals in England to illustrate how treating patient experience data as 'singular-multiples' can enable useful insights into patient experience data work in health care organisations. Our data was generated during 12 months of fieldwork at five participating hospitals and included organisational documents, field notes, informal and formal interviews with frontline and managerial staff and patient representatives at the study sites. We use the examples of the Friends and Family Test (FFT) and the National Cancer Patient Experience Survey (NCPES) in England to consider the multiple nature of data as it is enacted in practice and the work data does when coordinated as an entity in the singular. We argue that, and discuss how, the sociomaterial insights we discuss here are relevant to health care quality and improvement research and practice.

'These places are like a godsend': a qualitative analysis of parents' experiences of health visiting outside the home and of children's centres services.

BACKGROUND: In 2011-2012, we carried out a programme of research to inform the Department of Health's strategy for strengthening health visiting services in England. Our research included a study of parents' views of their experiences with health visiting services in two geographical areas in England. Here, we draw upon data from this work to illustrate valuable aspects of family support outside the home reported in parents' accounts of their experiences of health visiting. We also explore the usefulness of relational autonomy as a theoretical lens for understanding the mechanisms through which this support operates. DESIGN: We draw upon data from semi-structured interviews with 44 parents across two 'Early Implementer Sites' of the 'new service vision' in England. Our thematic analysis of the data was informed by grounded theory principles. FINDINGS AND DISCUSSION: Parents valued being able to attend child health clinics and group activities outside the home; this helped them to avoid social isolation and to identify, choose and use the forms of advice and support that best suited them. We suggest that health visiting outside the home and children's centres services may also foster parental autonomy, especially when this is understood in relational terms. CONCLUSIONS: Health visiting outside the home and children's centres services are an important complement to health visiting in the home; both dimensions of family support should be available in the community. Relational readings of autonomy can help illuminate the ways in which these services can foster (or undermine) parents' autonomy.

'It's a delicate topic': Stigma, capabilities and young people's mental health in post-conflict Colombia.

Young people in Colombia present high rates of mental health problems, to which the country's history of armed internal conflict contributes in complex ways. Mental health services in Colombia are fragmented, inadequate, and difficult to access for many. Young people's help-seeking is often hindered by mental health stigma and/or poor experiences with services. This paper presents a thematic analysis of qualitative data from a mixed-methods study aimed at developing and testing a mental health intervention for Colombian youths. We draw upon theoretical lenses from scholarly work on stigma and Sen's 'capabilities approach' to inform our analysis of interviews and group discussions with staff and young people involved in the state-funded human capital building programme 'Jovenes en Acción' (JeA). By illustrating how study participants talked about stigma, vulnerability, mental health services organisation, and the challenges of discussing mental health topics in a learning environment, we illuminate aspects of mental health support and anti-stigma interventions that might need enhancing. In particular, we suggest that more emphasis on 'community competencies' as complementary to and interrelated with individual competencies would strengthen young people's individual and collective resources for mental wellbeing while being in line with the sociocritical principles of existing human capital-enhancing programmes.

Piloting a mental health intervention for young adults in poverty enrolled in post-secondary education in post-conflict regions in Colombia: a study protocol.

Background: Colombia has endured more than five decades of internal armed conflict, which led to substantial costs for human capital and mental health. There is currently little evidence about the impact of incorporating a mental health intervention within an existing public cash transfer program to address poverty, and this project aims to develop and pilot a mental health support intervention embedded within the human capital program to achieve better outcomes among beneficiaries, especially those displaced by conflict and the most socioeconomically vulnerable. Methods: The study will consist of three phases: semi-structured one-to-one interviews, co-design and adaptations of the proposed intervention with participants and pilot of the digital intervention based on cognitive behavioral therapy and transdiagnostic techniques to determine its feasibility, acceptability, efficacy, and usefulness in 'real settings'. Results will inform if the intervention improves clinical, educational and employment prospects among those who use it. Results: Knowledge will be generated on whether the mental health intervention could potentially improve young people's mental health and human capital in conflict-affected areas? We will evaluate of the impact of potential mental health improvements on human capital outcomes, including educational and employment outcomes. Conclusion: Findings will help to make conclusions about the feasibility and acceptability of the intervention, and it will assess its effectiveness to improve the mental health and human capital outcomes of beneficiaries. This will enable the identification of strategies to address mental health problems among socioeconomically vulnerable young people that can be adapted to different contexts in in low and middle-income countries.

Non-Pharmacological Integrated Interventions for Adults Targeting Type 2 Diabetes and Mental Health Comorbidity: A Mixed-Methods Systematic Review.

Objective: Adults living with Type 2 diabetes (T2D) and severe mental illness (SMI) disproportionally experience premature mortality and health inequality. Despite this, there is a limited evidence-base and evaluation of non-pharmacological integrated interventions that may contribute to improved patient experience and outcomes. To improve our understanding of how to optimise integrated care for this group, this review evaluates the effectiveness, acceptability, and feasibility of non-pharmacological integrated interventions for adults with SMI and T2D. Methods: Studies from nine electronic databases were searched. Of the 6750 papers retrieved, seven papers (five quantitative and two qualitative) met the inclusion/exclusion criteria. A convergent integrated approach was used to narratively synthesise data into four main themes: effectiveness, acceptability, feasibility, integrated care. Results: There is moderate evidence to suggest non-pharmacological integrated interventions may be effective in improving some diabetes-related and psychosocial outcomes. Person-centred integrated interventions that are delivered collaboratively by trained facilitators who exemplify principles of integrated care may be effective in reducing the health-treatment gap. Conclusions: Recommendations from this review can provide guidance to healthcare professionals, commissioners, and researchers to inform improvements to non-pharmacological integrated interventions that are evidence-based, theoretically driven, and informed by patient and healthcare professionals' experiences of care.

Tackling diabetes as a team: co-designing healthcare interventions to engage couples living with type 1 diabetes.

AIMS: Couples living with Type 1 diabetes: co-designing interventions to support them. METHODS: This is a qualitative study comprising two phases. Phase I represents the exploratory phase, consisting of semi-structured interviews with persons with Type 1 diabetes (N = 16) and partners (N = 6). In the second phase, co-design principles guided workshops with healthcare professionals, persons with Type 1 diabetes, and partners (N = 7) to facilitate discussion of the key themes identified and solutions to engage couples living with Type 1 diabetes in diabetes care. RESULT: The key themes identified from phase I as priorities to target in future interventions were: (i) Emotional impact of diabetes and (ii) Partners' involvement. Priority (i) captures the impact the emotional burden of diabetes management produces within couples' relationship. Priority (ii) captures the request from partners to be more involved in diabetes management. Characteristics of the interventions suggested during the co-design phase II focused on engaging patients and partners via a counseling point in healthcare settings and tailored help for couples' psychological support needs. CONCLUSIONS: Couples value pro-active intervention and support from their diabetes team or primary care for both the partners to live well with Type 1 diabetes.

Exploring liminality in the co-design of rehabilitation environments: The case of one acute stroke unit.

This paper describes an Experience-based Co-design (EBCD) project that aimed to increase patient activity within an acute stroke unit. We apply the concept of liminality to explore ways in which the EBCD process, a form of Participatory Action Research, may dilute or even dissolve social hierarchies and challenge assumptions about practices and constraints in this care setting, thereby opening up possibilities for transformation that enhances the therapeutic value of the space for patients and care providers alike. By occasioning a liminal phase of possibility for change, the work of one co-design group explored in detail here suggests that, in this process, the sociomaterial interactions involving patients, family members, staff, and the physical space are refashioned and re-inscribed in transformed 'emplaced' relationships of care.

Medical students' views of power in doctor-patient interactions: the value of teacher-learner relationships.

CONTEXT: This paper aims to contribute to the important, and relatively underexplored, area of medical education research that seeks to illuminate the value and meaning of relationships in the undergraduate education of doctors. Here I present new empirical material in which I ground my reflections on some ways in which teacher-learner relationships can help address medical students' often uncritical views of professional practice. The views I illustrate are of particular significance as they contrast sharply with the participative models of practice promoted by current policy, professional and educational discourses. METHODS: My reflections stem from the analysis of data I generated for a larger, broadly ethnographic study exploring students' approaches to their future role as practitioners in one UK medical school. I draw upon this larger body of data and focus here on two examples in particular of the more general uncritical readings of medical professionalism I encountered at Sundown Medical School (an invented name), namely: students' often reductive views of medical power, and their simplistic formulations of patient education. DISCUSSION: I argue for the need to foster richer and more critical understandings of professional power and knowledge among students and educators, and suggest here that teacher-learner interactions could have an important role in fostering such richer understandings. I argue that teacher-learner relationships can model some of the dynamics of the practitioner-patient interaction and thus provide useful opportunities for closer and more critical analysis of power, education and knowledge in the medical school classroom as well as in the consultation room. CONCLUSIONS: I suggest that effective integration of participative and critical pedagogical strategies in medical curricula and more structured involvement of patients in the role of teachers may represent valuable strategies for the development of learning relationships that better promote reflexive and collaborative forms of professionalism.

Exploring, measuring and enhancing the coproduction of health and well-being at the national, regional and local levels through comparative case studies in Sweden and England: the 'Samskapa' research programme protocol.

INTRODUCTION: Cocreation, coproduction and codesign are advocated as effective ways of involving citizens in the design, management, provision and evaluation of health and social care services. Although numerous case studies describe the nature and level of coproduction in individual projects, there remain three significant gaps in the evidence base: (1) measures of coproduction processes and their outcomes, (2) mechanisms that enable inclusivity and reciprocity and (3) management systems and styles. By focusing on these issues, we aim to explore, enhance and measure the value of coproduction for improving the health and well-being of citizens. METHODS AND ANALYSIS: Nine ongoing coproduction projects form the core of an interactive research programme ('Samskapa') during a 6-year period (2019-2024). Six of these will take place in Sweden and three will be undertaken in England to enable knowledge exchange and cross-cultural comparison. The programme has a longitudinal case study design using both qualitative and quantitative methods. Cross-case analysis and a sensemaking process will generate relevant lessons both for those participating in the projects and researchers. Based on the findings, we will develop explanatory models and other outputs to increase the sustained value (and values) of future coproduction initiatives in these sectors. ETHICS AND DISSEMINATION: All necessary ethical approvals will be obtained from the regional Ethical Board in Sweden and from relevant authorities in England. All data and personal data will be handled in accordance with General Data Protection Regulations. Given the interactive nature of the research programme, knowledge dissemination to participants and stakeholders in the nine projects will be ongoing throughout the 6 years. External workshops-facilitated in collaboration with participating case studies and citizens-both during and at the end of the programme will provide an additional dissemination mechanism and involve health and social care practitioners, policymakers and third-sector organisations.

New models to support the professional education of health visitors: A qualitative study of the role of space and place in creating 'community of learning hubs'.

BACKGROUND: In response to a policy-driven workforce expansion in England new models of preparing health visitors for practice have been implemented. 'Community of Learning hubs' (COLHs) are one such model, involving different possible approaches to student support in clinical practice placements (for example, 'long arm mentoring' or 'action learning set' sessions). Such models present opportunities for studying the possible effects of spatiality on the learning experiences of students and newly qualified health visitors, and on team relationships more broadly. OBJECTIVES: To explore a 'community of learning hub' model in health visitor education and reflect on the role of space and place in the learning experience and professional identity development of student health visitors. DESIGN: Qualitative research conducted during first year of implementation. SETTINGS: Three 'community of learning hub' projects based in two NHS community Trusts in London during the period 2013-2015. PARTICIPANTS: Managers and leads (n=7), practice teachers and mentors (n=6) and newly qualified and student health visitors (n=16). METHODS: Semi-structured, audio-recorded interviews analysed thematically. RESULTS: Participants had differing views as to what constituted a 'hub' in their projects. Two themes emerged around the spaces that shape the learning experience of student and newly qualified health visitors. Firstly, a generalised need for a 'quiet place' which allows pause for reflection but also for sharing experiences and relieving common anxieties. Secondly, the role of physical arrangements in open-plan spaces to promote access to support from more experienced practitioners. CONCLUSIONS: Attention to spatiality can shed light on important aspects of teaching and learning practices, and on the professional identities these practices shape and support. New configurations of time and space as part of educational initiatives can surface new insights into existing practices and learning models.

Taking data seriously: the value of actor-network theory in rethinking patient experience data.

Hospitals are awash with patient experience data, much of it collected with the ostensible purpose of improving the quality of patient care. However, there has been comparatively little consideration of the nature and capacities of data itself. Using insights from actor-network theory, we propose that paying attention to patient experience data as having agency in particular hospital interactions allows us to better trace how and in what circumstances data lead (or fail to lead) to quality improvement.

Beneficial effects of gluten free diet in potential coeliac disease in adult population.

BACKGROUND: To date, potential coeliac disease (PCD) occurring in adults remains an almost unexplored condition. AIMS: To explore the prognostic role of Marsh grade in adult PCD patients, and to evaluate the effects of gluten-containing diet (GCD) in asymptomatic PCD patients. METHODS: We retrospectively evaluated all consecutive adult PCD patients followed-up for at least 6 years. Patients were divided into: Group A (patients with Marsh 0 histology) and Group B (Marsh 1 patients). Symptomatic patients were started gluten-free diet (GFD), while asymptomatic subjects were kept on GCD and were followed-up. RESULTS: 56 PCD patients were enrolled (21 in Group A and 35 in Group B). Forty-three patients were symptomatic and started GFD. Of these, none of 15 patients in Group A and 8 of 28 patients in Group B developed immune-mediated disorders (IMD) during follow-up (P=0.03; OR=4.2). The 13 asymptomatic PCD patients were kept on GCD. During the follow-up, 9 patients developed CD-related symptoms, 6 villous atrophy and 8 IMD. At the end, patients kept on GCD were at higher risk of developing IMD than those following a GFD (61% vs 18%, P=0.03, OR=3.3). CONCLUSIONS: Although PCD with normal mucosa seems to be a milder disease, the continuation of GCD places patients at a high risk of developing villous atrophy and IMD compared to commencement of GFD. Adult PCD patients should start GFD even if not symptomatic.

Gluten-free diet does not influence the occurrence and the Th1/Th17-Th2 nature of immune-mediated diseases in patients with coeliac disease.

INTRODUCTION: Coeliac disease (CD) is the most common Th1-mediated enteropathy, frequently associated with other immune-mediated disorders (IMD). AIMS: To evaluate: (1) the prevalence of IMD at the time of and after CD diagnosis; (2) a possible change in immune response to gluten free diet (GFD); (3) the potential role of GFD in reducing and/or preventing IMD in CD. METHODS: Prospective study including all consecutive adult CD patients who underwent investigations for Th1-Th17/Th2-IMD at the time of CD diagnosis and after a 5-year follow-up period. RESULTS: 1255 CD were enrolled. Of these, 257 patients (20.5%) showed IMD at the time of CD diagnosis, with 58.4% presenting a Th1/Th17-IMD. After a 5-year follow-up period, 682 patients (54.3%) showed new IMD despite GFD. Of these, 57.3% presented a Th1/Th17-IMD and 42.7% a Th2-IMD (p=0.8). When compared the prevalence of each type of IMD before and after CD diagnosis, we did not identify any significant "switch" from Th1/Th17- to Th2-IMD or vice versa. The number of patients with Th1/Th17- and/or Th2-IMD increased during the GFD period (20.5% vs 54.3%; p<0.01; OR 1.9). CONCLUSIONS: The prevalence of IMD at the time of CD diagnosis is high and it seems to increase in the follow-up period despite GFD.

Why health visiting? Examining the potential public health benefits from health visiting practice within a universal service: a narrative review of the literature.

INTRODUCTION: There is increasing international interest in universal, health promoting services for pregnancy and the first three years of life and the concept of proportionate universalism. Drawing on a narrative review of literature, this paper explores mechanisms by which such services might contribute to health improvement and reducing health inequalities. OBJECTIVES: Through a narrative review of empirical literature, to identify: (1) What are the key components of health visiting practice? (2) How are they reflected in implementing the universal service/provision envisaged in the English Health Visitor Implementation Plan (HVIP)? DESIGN: The paper draws upon a scoping study and narrative review. REVIEW METHODS: We used three complementary approaches to search the widely dispersed literature: (1) broad, general search, (2) structured search, using topic-specific search terms, (3) seminal paper search. Our key inclusion criterion was information about health visiting practice. We included empirical papers from United Kingdom (UK) from 2004 to February 2012 and older seminal papers identified in search (3), identifying a total of 348 papers for inclusion. A thematic content analysis compared the older (up to 2003) with more recent research (2004 onwards). RESULTS: The analysis revealed health visiting practice as potentially characterized by a particular 'orientation to practice.' This embodied the values, skills and attitudes needed to deliver universal health visiting services through salutogenesis (health creation), person-centredness (human valuing) and viewing the person in situation (human ecology). Research about health visiting actions focuses on home visiting, needs assessment and parent-health visitor relationships. The detailed description of health visitors' skills, attitudes, values, and their application in practice, provides an explanation of how universal provision can potentially help to promote health and shift the social gradient of health inequalities. CONCLUSIONS: Identification of needs across an undifferentiated, universal caseload, combined with an outreach style that enhances uptake of needed services and appropriate health or parenting information, creates opportunities for parents who may otherwise have remained unaware of, or unwilling to engage with such provision. There is a lack of evaluative research about health visiting practice, service organization or universal health visiting as potential mechanisms for promoting health and reducing health inequalities. This paper offers a potential foundation for such research in future.

Different Profile of Efficacy of Thiopurines in Ulcerative Colitis and Crohn's Disease.

BACKGROUND: Thiopurines are effective drugs in treating ulcerative colitis (UC) and Crohn's disease (CD) even if studies that specifically investigate these drugs' profile of efficacy in UC compared with CD are scarce. Our aim was to compare the profile of efficacy of thiopurines in patients with UC and CD. METHODS: We perfomed a longitudinal observational study evaluating steroid-free clinical remission (CR) and mucosal healing (MH) in all patients with UC and CD who would complete 2 years of maintenance treatment with thiopurines. In patients with UC, CR and MH were assessed before starting treatment and 2 years later using the Mayo score (CR = Mayo score <2; MH = Mayo subscore ≤1). In patients with CD, CR and MH were assessed at the same time points using the Crohn's disease activity index (CR = Crohn's disease activity index < 150) and the Simplified Endoscopic Score for Crohn's Disease (MH = Simplified Endoscopic Score for Crohn's Disease < 2). The efficacy of thiopurines was assessed through intention-to-treat and per-protocol analyses. RESULTS: The study included 205 steroid-dependent patients (104 UC; 101 CD), 140 of whom (70 UC; 70 CD) completed the 2-year observation period. Steroid-free CR was recorded in 43 patients with UC and 37 with CD (intention-to-treat: 41% versus 36%; P = 0.6; per-protocol: 61% versus 53%; P = 0.4); MH was obtained in 38 patients with UC and 17 with CD (intention-to-treat: 36% versus 16%; P < 0.01; odds ratio, 2.9; per-protocol: 54% versus 25%; P < 0.01; odds ratio, 3.7). CONCLUSIONS: Thiopurines are effective in maintaining steroid-free CR in both UC and CD although they show a better profile of efficacy in terms of MH in cases of UC.

Researching involvement in health care practices: interrupting or reproducing medicalization?

In this paper we reflect upon and problematize the ways in which 'patient involvement' is interpreted in a substantial proportion of the research literature on involvement and shared decision making. Drawing upon an analysis of this literature we raise concerns about the 'medicalization of involvement' embedded in, and reproduced by, some dominant research lenses, suggesting that this medicalization has powerful discursive and material effects. For example, we suggest that it tends to normalize and arguably trivialize intrinsically problematic and contentious concepts such as 'patient preferences' and, at the same time, to obscure the full range of possibilities for reciprocity in the exchanges between the medical world of the professional and the experiential and narrative world of the patient. We argue that richer conceptualizations of collaboration in clinical work are both possible and very much needed, and we indicate some examples of scholarly resources and perspectives that point towards richer and more defensible accounts of involvement. Overall we call for more attention to the idea of 'epistemic involvement' and much greater cross-fertilization between different epistemological paradigms in this area of research.