Bibliotherapy in practice: a person-centred approach to using books for mental health and dementia in the community.

Bibliotherapy is the use of texts to provide support for people with mental and physical health problems. It is widely seen to have beneficial outcomes but there is still disagreement about how best to deliver bibliotherapy in practice. This article explores one method of delivering bibliotherapy which has evolved over the past 20 years in the North of England, the Kirklees approach. Using a multimethod qualitative research design including reflective observations, interviews and document analysis, the article examines how bibliotherapy has been delivered to people with mental health problems and dementia in a volunteer-led scheme. As an inherently flexible and adaptable approach, bibliotherapy in practice in Kirklees is best defined by its ethos, rather than a prescriptive list of its activities, as is the case for many alternative approaches to bibliotherapy. It is an approach to bibliotherapy which is person-centred; avoids value judgements of texts and responses to them; is often co-produced with group participants; is about making a contribution (in a variety of ways); and emphasises social connection. This separates it from other current models of bibliotherapy operating in the UK, and demonstrates how it may be tailored to the requirements of those experiencing diverse mental and physical health conditions. A more responsive form of bibliotherapy, as outlined here, has the potential to provide support across the community.

The potential of educational comics as a health information medium.

OBJECTIVES: To investigate ways in which educational comics might provide support in dealing with feelings and attitudes towards health conditions, as well as improving understanding of factual information and to identify potential weakness of comics as a medium for health information. METHODS: Semi-structured interviewees with eleven university students who either had a mental or physical health condition themselves or had a family member with a health condition. RESULTS: The result highlighted the potential value of comics as a format for health information. In addition to conveying factual information, comics offer opportunities for self-awareness, reassurance, empathy, companionship and a means to explore the impact of illness on family relationships. However, there are notable barriers to the greater use of comics to provide health information, namely, a lack of awareness of, and easy access to, educational comics, along with the perception that comics are exclusively light-hearted and for children. CONCLUSIONS: Currently, the full potential of comics in health settings is not being realised. Health information professionals may be in a position to address this issue through identifying, cataloguing, indexing and promoting comics as a legitimate format for health information.

Multimethod study of a large-scale programme to improve patient safety using a harm-free care approach.

OBJECTIVES: We aimed to evaluate whether a large-scale two-phase quality improvement programme achieved its aims and to characterise the influences on achievement. SETTING: National Health Service (NHS) in England. PARTICIPANTS: NHS staff. INTERVENTIONS: The programme sought to (1) develop a shared national, regional and locally aligned safety focus for 4 high-cost, high volume harms; (2) establish a new measurement system based on a composite measure of 'harm-free' care and (3) deliver improved outcomes. Phase I involved a quality improvement collaborative intended to involve 100 organisations; phase II used financial incentives for data collection. MEASURES: Multimethod evaluation of the programme. In phase I, analysis of regional plans and of rates of data submission and clinical outcomes reported to the programme. A concurrent process evaluation was conducted of phase I, but only data on submission rates and clinical outcomes were available for phase II. RESULTS: A context of extreme policy-related structural turbulence impacted strongly on phase I. Most regions' plans did not demonstrate full alignment with the national programme; most fell short of recruitment targets and attrition in attendance at the collaborative meetings occurred over time. Though collaborative participants saw the principles underlying the programme as attractive, useful and innovative, they often struggled to convert enthusiasm into change. Developing the measurement system was arduous, yet continued to be met by controversy. Data submission rates remained patchy throughout phase I but improved in reach and consistency in phase II in response to financial incentives. Some evidence of improvement in clinical outcomes over time could be detected but was hard to interpret owing to variability in the denominators. CONCLUSIONS: These findings offer important lessons for large-scale improvement programmes, particularly when they seek to develop novel concepts and measures. External contexts may exert far-reaching influence. The challenges of developing measurement systems should not be underestimated.

Explaining engagement in self-monitoring among participants of the DESMOND Self-monitoring Trial: a qualitative interview study.

BACKGROUND: The Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (DESMOND) Self-monitoring Trial reported that people with newly diagnosed type 2 diabetes attending community-based structured education and randomized to self-monitoring of blood glucose (SMBG) or urine monitoring had comparable improvements in biomedical outcomes, but differences in satisfaction with, and continued use of monitoring method, well-being and perceived threat from diabetes. OBJECTIVES: To explore experiences of SMBG and urine monitoring following structured education. We specifically addressed the perceived usefulness of each monitoring method and the associated well-being. METHODS: Qualitative semi-structured interviews with 18 adults with newly diagnosed type 2 diabetes participating in the DESMOND Self-monitoring Trial (SMBG, N=10; urine monitoring, N=8)~12 months into the trial. Analysis was informed by the constant comparative approach. RESULTS: Interviewees reported SMBG as accurate, convenient and useful. Declining use was explained by having established a pattern of managing blood glucose with less frequent monitoring or lack of feedback or encouragement from health care professionals. Many initially positive views of urine monitoring progressively changed due to perceived inaccuracy, leading some to switch to SMBG. Perceiving diabetes as less serious was attributable to lack of symptoms, treatment with diet alone and-in the urine-monitoring group-consistently negative readings. Urine monitoring also provided less visible evidence of diabetes and of the effect of behaviour on glucose. CONCLUSIONS: The findings highlight the importance for professionals of considering patients' preferences when using self-monitoring technologies, including how these change over time, when supporting the self-care behaviours of people with type 2 diabetes.

Consent revisited: the impact of return of results on participants' views and expectations about trial participation.

BACKGROUND: Increasingly, the sharing of study results with participants is advocated as an element of good research practice. Yet little is known about how receiving the results of trials may impact on participants' perceptions of their original decision to consent. OBJECTIVE: We explored participants' views of their decision to consent to a clinical trial after they received results showing adverse outcomes in some arms of the trial. METHOD: Semi-structured interviews were conducted with a purposive sample of 38 women in the UK who participated in a trial of antibiotics in pregnancy. All had received results from a follow-up study that reported increased risk of adverse outcomes for children of participants in some of the trial intervention arms. Data analysis was based on the constant comparative method. RESULTS: Participants' original decisions to consent to the trial had been based on hope of personal benefit and assumptions of safety. On receiving the results, most made sense of their experience in ways that enabled them to remain content with their decision to take part. But for some, the results provoked recognition that their original expectations might have been mistaken or that they had not understood the implications of their decision to participate. These participants experienced guilt, a sense of betrayal by the maternity staff and researchers involved in the trial, and damage to trust. CONCLUSIONS: Sharing of study results is not a wholly benign practice, and requires careful development of suitable approaches for further evaluation before widespread adoption.

How collaborative are quality improvement collaboratives: a qualitative study in stroke care.

BACKGROUND: Quality improvement collaboratives (QICs) continue to be widely used, yet evidence for their effectiveness is equivocal. We sought to explain what happened in Stroke 90:10, a QIC designed to improve stroke care in 24 hospitals in the North West of England. Our study drew in part on the literature on collective action and inter-organizational collaboration. This literature has been relatively neglected in evaluations of QICs, even though they are founded on principles of co-operation and sharing. METHODS: We interviewed 32 professionals in hospitals that participated in Stroke 90:10, conducted a focus group with the QIC faculty team, and reviewed purposively sampled documents including reports and newsletters. Analysis was based on a modified form of Framework Analysis, combining sensitizing constructs derived from the literature and new, empirically derived thematic categories. RESULTS: Improvements in stroke care were attributed to QIC participation by many professionals. They described how the QIC fostered a sense of community and increased attention to stroke care within their organizations. However, participants' experiences of the QIC varied. Starting positions were different; some organizations were achieving higher levels of performance than others before the QIC began, and some had more pre-existing experience of quality improvement methods. Some participants had more to learn, others more to teach. Some evidence of free-riding was found. Benchmarking improvement was variously experienced as friendly rivalry or as time-consuming and stressful. Participants' competitive desire to demonstrate success sometimes conflicted with collaborative aims; some experienced competing organizational pressures or saw the QIC as duplication of effort. Experiences of inter-organizational collaboration were influenced by variations in intra-organizational support. CONCLUSIONS: Collaboration is not the only mode of behavior likely to occur within a QIC. Our study revealed a mixed picture of collaboration, free-riding and competition. QICs should learn from work on the challenges of collective action; set realistic goals; account for context; ensure sufficient time and resources are made available; and carefully manage the collaborative to mitigate the risks of collaborative inertia and unhelpful competitive or anti-cooperative behaviors. Individual organizations should assess the costs and benefits of collaboration as a means of attaining quality improvement.

Humanising illness: presenting health information in educational comics.

Research into the effectiveness of comic books as health education tools overwhelmingly consists of studies evaluating the information learnt as a result of reading the comic, for example using preintervention and postintervention questionnaires. In essence, these studies evaluate comics in the same way in which a patient information leaflet might be evaluated, but they fail to evaluate the narrative element of comics. Health information comics have the potential to do much more than simply convey facts about an illness; they can also support patients in dealing with the social and psychological aspects of a condition. This article discusses how some common elements of educational comics are handled in a selection of comics about diabetes, focusing on the more personal or social aspects of the condition as well as the presentation of factual information. The elements examined include: fears and anxieties; reactions of friends and family; interactions with medical professionals; self-management; and prevention. In conclusion, the article argues that comics, potentially, have many advantages over patient information leaflets, particularly in the way in which they can offer 'companionship', helping patients to address fears and negative feelings. However, empirical studies are required to evaluate educational comics in a way which takes account of their potential role in supporting patients in coming to terms with their condition, as well as becoming better informed.

Primary care quality and safety systems in the English National Health Service: a case study of a new type of primary care provider.

OBJECTIVES: Although the predominant model of general practice in the UK National Health Service (NHS) remains the small partnership owned and run by general practitioners (GPs), new types of provider are emerging. We sought to characterize the quality and safety systems and processes used in one large, privately owned company providing primary care through a chain of over 50 general practices in England. METHODS: Senior staff with responsibility for policy on quality and safety were interviewed. We also undertook ethnographic observation in non-clinical areas and interviews with staff in three practices. RESULTS: A small senior executive team set policy and strategy on quality and safety, including a systematic incident reporting and investigation system and processes for disseminating learning with a strong emphasis on customer focus. Standardization of systems was possible because of the large number of practices. Policies appeared generally well implemented at practice level. However, there was some evidence of high staff turnover, particularly of GPs. This caused problems for continuity of care and challenges in inducting new GPs in the company's systems and procedures. CONCLUSIONS: A model of primary care delivery based on a corporate chain may be useful in standardizing policies and procedures, facilitating implementation of systems, and relieving clinical staff of administrative duties. However, the model also poses some risks, including those relating to stability. Provider forms that retain the long term, personal commitment of staff to their practices, such as federations or networks, should also be investigated; they may offer the benefits of a corporate chain combined with the greater continuity and stability of the more traditional general practice.

Towards a new paradigm in health research and practice? Collaborations for Leadership in Applied Health Research and Care.

PURPOSE: Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) are a new UK initiative to promote collaboration between universities and healthcare organisations in carrying out and applying the findings of applied health research. But they face significant, institutionalised barriers to their success. This paper seeks to analyse these challenges and discuss prospects for overcoming them. DESIGN/METHODOLOGY/APPROACH: The paper draws on in-depth qualitative interview data from the first round of an ongoing evaluation of one CLAHRC to understand the views of different stakeholders on its progress so far, challenges faced, and emergent solutions. FINDINGS: The breadth of CLAHRCs' missions seems crucial to mobilise the diverse stakeholders needed to succeed, but also produces disagreement about what the prime goal of the Collaborations should be. A process of consensus building is necessary to instil a common vision among CLAHRC members, but deep-seated institutional divisions continue to orient them in divergent directions, which may need to be overcome through other means. ORIGINALITY/VALUE: This analysis suggests some of the key means by which those involved in joint enterprises such as CLAHRCs can achieve consensus and action towards a current goal, and offers recommendations for those involved in their design, commissioning and performance management.

"Dude! You mean you've never eaten a peanut butter and jelly sandwich?!?" Nut allergy as stigma in comic books.

This article examines the representation of nut allergy in comics aimed at children and young people. It maps the signification and stigma of nut allergy in comics, and includes an outline of the imagery, stereotypes, and connotations that are created on this condition. Three texts are examined: first, Allergic, a semi-autobiographical story by Adrian Tomine aimed at young adults; second, What's Up With Paulina? from the Medikidz series of comic books that aim to help a pre-teenage audience learn about medical conditions; and third, Peanut, a forthcoming comic book by Ayun Halliday aimed at those in their early to mid teenage years. Using textual analysis, we focus on three principal areas of the texts. First, we consider the way in which the allergic character is represented in relation to examples of felt stigma, typified by feelings of shame and rejection, and compare this representation to common stereotypes of disability. Second, we look at the representation of other characters, drawing attention to the way in which stigma is enacted, highlighting acts of overt discrimination. Last, we examine the way in which the event of an allergic reaction is portrayed, considering how this might be used to help children and young people better understand nut allergy and combat the stigma attached to it. Throughout the article we compare the representation of stigma in comics with that depicted in empirical research on children living with nut allergies.

Unblinding following trial participation: qualitative study of participants' perspectives.

BACKGROUND: The implications of offering unblinding to trial participants to treatment arm after trial completion have been little explored. PURPOSE: We sought to explore trial participants' perspectives on whether they would like to be unblinded as to the treatment arm to which they were allocated following involvement in a large randomised controlled trial (RCT). METHODS: We conducted semi-structured interviews with 38 women who had participated in a trial during suspected preterm labour and had received the results of a long-term follow-up study that identified adverse outcomes for children in some of the treatment groups. Participants were sampled purposively. Analysis was based on the constant comparative method. RESULTS: Most women reported that they wanted to know the treatment arm to which they had been allocated. While the primary motive for some was curiosity, many others wanted to know as part of an attempt to understand or explain their child's current health problems. These women were motivated by a search for a coherent causal narrative, even though unblinding was unlikely to be able to meet their aspirations. Some participants identified potential disadvantages in discovering their treatment allocation, including feeling responsible for their child's health status, and some women were very clear that they did not want to know their treatment group. LIMITATIONS: A purposive sample was used and the extent to which it represents the views of all participants in the study is not established. CONCLUSIONS: Important challenges arise in offering to unblind trial participants, whatever the trial results. Participants may need help and support to understand the limitations of the knowledge they gain through being unblinded and to decide whether they wish to know to which treatment arm they were allocated.

Ten challenges in improving quality in healthcare: lessons from the Health Foundation's programme evaluations and relevant literature.

BACKGROUND: Formal evaluations of programmes are an important source of learning about the challenges faced in improving quality in healthcare and how they can be addressed. The authors aimed to integrate lessons from evaluations of the Health Foundation's improvement programmes with relevant literature. METHODS: The authors analysed evaluation reports relating to five Health Foundation improvement programmes using a form of 'best fit' synthesis, where a pre-existing framework was used for initial coding and then updated in response to the emerging analysis. A rapid narrative review of relevant literature was also undertaken. RESULTS: The authors identified ten key challenges: convincing people that there is a problem that is relevant to them; convincing them that the solution chosen is the right one; getting data collection and monitoring systems right; excess ambitions and 'projectness'; organisational cultures, capacities and contexts; tribalism and lack of staff engagement; leadership; incentivising participation and 'hard edges'; securing sustainability; and risk of unintended consequences. The authors identified a range of tactics that may be used to respond to these challenges. DISCUSSION: Securing improvement may be hard and slow and faces many challenges. Formal evaluations assist in recognising the nature of these challenges and help in addressing them.