Diabetes service provision:a qualitative study of newly diagnosed Type 2 diabetes patients' experiences and views

Aims: To explore newly diagnosed Type 2 diabetes patients' views about Scottish diabetes services at a time when these services are undergoing a major reorganization. To provide recommendations to maximize opportunities brought by the devolvement of services from secondary to primary healthcare settings. Methods: Qualitative panel study with 40 patients newly diagnosed with Type 2 diabetes, recruited from hospital clinics and general practices in Lothian, Scotland. Patients were interviewed three times over 1 year. The study was informed by grounded theory, which involves concurrent data collection and analysis. Results: Patients were generally satisfied with diabetes services irrespective of the types of care received. Most wanted their future care/review to be based in general practice for reasons of convenience and accessibility, although they dis-liked it when appointments were scheduled for different days. Many said they lacked the knowledge/confidence to know how to manage their diabetes in particular situations, and needed access to healthcare professionals who could answer their questions promptly. Patients expressed a need for primary care professionals who had diabetes expertise, but who had more time and were more accessible than general practitioners. Patients who had encountered practice lead nurses for diabetes spoke particularly positively of these professionals. Conclusions: Nurses with diabetes training are particularly well placed to provide information and support to patients in primary care. Ideally, practices should run 'one-stop' diabetes clinics to provide structured care, with easily accessible dietetics, podiatry and retinopathy screening. Newly diagnosed patients may benefit from being made more aware of specific services provided by charitable organizations such as Diabetes UK. © 2005 Diabetes UK.

Patients’ and health professionals’ views and experiences of atrial fibrillation and oral-anticoagulant therapy:a qualitative meta-synthesis

Objective - Atrial fibrillation (AF) patients are prescribed oral-anticoagulant (OAC) therapy, often warfarin, to reduce stroke risk. We explored existing qualitative evidence about patients’ and health professionals’ experiences of OAC therapy. Methods - Systematic searches of eight bibliographic databases were conducted. Quality was appraised using the Critical Appraisal Skills Programme tool and data from ten studies were synthesised qualitatively. Results - Four third-order constructs, emerged from the final step in the analysis process: (1) diagnosing AF and the communication of information, (2) deciding on OAC therapy, (3) challenges revolving around patient issues, and (4) healthcare challenges. Synthesis uncovered perspectives that could not be achieved through individual studies. Conclusion - Physicians’ and patients’ experiences present a dichotomy of opinion on decision-making, which requires further exploration and changes in practice. Outcomes of workload pressure on both health professionals and patients should be investigated. The need for on-going support and education to patients and physicians is critical to achieve best practice and treatment adherence. Practice implications - Such research could encourage health professionals to understand and attend better to the needs and concerns of the patient. Additionally these findings can be used to inform researchers and healthcare providers in developing educational interventions with both patients and health professionals.

Patients’ and physicians’ experiences of atrial fibrillation and anticoagulation therapy:a qualitative journey

Background: Oral anticoagulation (OAC) reduces stroke risk in patients with atrial fibrillation (AF) however it is often underutilized and sometimes refused by patients. This programme of work included a meta-synthesis and two inter-linking studies aiming to explore patients’ and physicians’ experiences of AF and OAC. Methods: A meta-synthesis of qualitative evidence was conducted which informed the empirical work. Semi-structured individual interviews were utilised. Study 1: Three AF patient sub-groups were interviewed; accepted (n=4), refused (n=4), or discontinued (n=3) warfarin. Study 2: Four physician sub-groups (n=4 each group) prescribing OAC to AF patients were interviewed: consultant cardiologists, consultant general physicians, general practitioners and cardiology registrars. Data was analysed using interpretative phenomenological analysis. Results: Study 1: Three over-arching themes comprised patients’ experiences: (1) the initial consultation, (2) life after the consultation, and (3) patients’ reflections. Patients commented on the relief and reassurance experienced during the consultation but they perceived the decision making process mostly led by the physician. Lack of education and take-home materials distributed during the initial consultation was highlighted. Patients who had experienced stroke themselves or were caregivers, were more receptive to education aimed towards stroke risk reduction rather than bleeding risk. Warfarin monitoring was challenging for patients, however some patients perceived it as beneficial as it served to enhance patient-physician relationship. Study 2: Two over-arching themes emerged from physicians’ experiences: (1) communicating information and (2) challenges with OAC prescription for AF. Physicians’ approach to the consultation style shifted through a continuum of compliance-adherence-concordance during the consultation. They aimed for concordance, however challenges such as time and the perceived patient trust in them as the expert, led to physicians adopting a paternalistic approach. Physicians also pointed out challenges associated with guideline adherence and the need to adopt a multi-disciplinary approach, where other health professionals could provide on-going education. Conclusion: This programme of work has illustrated the benefit of taking an in depth phenomenological approach to understanding the lived experience of the physician-patient consultation. Together with the meta-synthesis, this work has strengthened the evidence base and demonstrated that there is a need to target patients' and physicians' ability to communicate with each other in a comprehensible way.

Patients' and physicians' experiences of atrial fibrillation consultations and anticoagulation decision-making:a multi-perspective IPA design

OBJECTIVE: To explore patients' and physicians' experiences of atrial fibrillation consultations and oral anticoagulation decision-making. DESIGN: Multi-perspective interpretative phenomenological analyses. METHODS: Participants included small homogeneous subgroups: AF patients who accepted (n=4), refused (n=4), or discontinued (n=3) warfarin, and four physician subgroups (n=4 each group): consultant cardiologists, consultant general physicians, general practitioners and cardiology registrars. Semi-structured interviews were conducted. Transcripts were analysed using multi-perspective IPA analyses to attend to individuals within subgroups and making comparisons within and between groups. RESULTS: Three themes represented patients' experiences: Positioning within the physician-patient dyad, Health-life balance, and Drug myths and fear of stroke. Physicians' accounts generated three themes: Mechanised metaphors and probabilities, Navigating toward the 'right' decision, and Negotiating systemic factors. CONCLUSIONS: This multi-perspective IPA design facilitated an understanding of the diagnostic consultation and treatment decision-making which foregrounded patients' and physicians' experiences. We drew on Habermas' theory of communicative action to recommend broadening the content within consultations and shifting the focus to patients' life contexts. Interventions including specialist multidisciplinary teams, flexible management in primary care, and multifaceted interventions for information provision may enable the creation of an environment that supports genuine patient involvement and participatory decision-making.

Patients’ perceptions and experiences of cardiovascular disease and diabetes prevention programmes:a systematic review and framework synthesis using the Theoretical Domains Framework

Background - This review provides a worked example of ‘best fit’ framework synthesis using the Theoretical Domains Framework (TDF) of health psychology theories as an a priori framework in the synthesis of qualitative evidence. Framework synthesis works best with ‘policy urgent’ questions. Objective - The review question selected was: what are patients’ experiences of prevention programmes for cardiovascular disease (CVD) and diabetes? The significance of these conditions is clear: CVD claims more deaths worldwide than any other; diabetes is a risk factor for CVD and leading cause of death. Method - A systematic review and framework synthesis were conducted. This novel method for synthesizing qualitative evidence aims to make health psychology theory accessible to implementation science and advance the application of qualitative research findings in evidence-based healthcare. Results - Findings from 14 original studies were coded deductively into the TDF and subsequently an inductive thematic analysis was conducted. Synthesized findings produced six themes relating to: knowledge, beliefs, cues to (in)action, social influences, role and identity, and context. A conceptual model was generated illustrating combinations of factors that produce cues to (in)action. This model demonstrated interrelationships between individual (beliefs and knowledge) and societal (social influences, role and identity, context) factors. Conclusion - Several intervention points were highlighted where factors could be manipulated to produce favourable cues to action. However, a lack of transparency of behavioural components of published interventions needs to be corrected and further evaluations of acceptability in relation to patient experience are required. Further work is needed to test the comprehensiveness of the TDF as an a priori framework for ‘policy urgent’ questions using ‘best fit’ framework synthesis.

Oral anticoagulation in atrial fibrillation, the patients and physicians experiences of the consultation:a qualitative study

Background: Oral anticoagulation (OAC) reduces stroke risk in patients with atrial fibrillation (AF), however it is still underutilized and sometimes refused by patients. This project was divided in two inter-related studies. Study 1 explored the experiences that influence prescription of OAC by physicians. Study 2 explored the experiences which influence patients' decisions to accept, decline or discontinue OAC. Methods: Semi-structured individual interviews were conducted in both studies. In Study 1four sub-groups of physicians (n = 16) experienced with OAC in AF were interviewed: consultant cardiologists, consultant general physicians, general practitioners and cardiology registrars. In Study 2 three sub-groups of patients (n = 11) diagnosed with AF were interviewed; those who accepted, refused, and who discontinued warfarin. Results: Study 1: Two over-arching themes emerged from doctors' experiences: (1) communicating information and (2) challenges with OAC prescription for AF. Physicians still adopt a paternalistic approach to decision-making. They should instead motivate patients to take part in treatment discussions and choices should reflect the patient's needs and concerns. Physician education should focus more on communication skills, individualised care and time-management as these are critical for patient adherence. Continuous OAC education for AF should adopt a multi-disciplinary approach. Further, interpreters should also be educated on medical communication skills. Study 2: Three over-arching themes comprised patients' experiences: (1) the initial consultation, (2) life after the consultation, and (3) patients' reflections. Patient education during the initial consultation was critical in increasing patient's knowledge of OAC. On-going patient education is imperative to maintain adherence. Patients valued physicians' concern for their needs during decision-making. Patients who had experience of stroke were more receptive to education aimed towards stroke risk reduction rather than bleeding risk. Patients' perceptions of warfarin are also influenced by the media. Comment: Qualitative research is crucial in exploring barriers to treatment as it provides an excellent insight into patients' experiences of healthcare. A patient-centred approach should be adopted and incorporated into physicians' education. Education and patient involvement in the decision-making process is essential to promote treatment acceptance and long-term adherence

'Urine testing is a waste of time': newly diagnosed Type 2 diabetes patients' perceptions of self-monitoring

Aims To date, there is no convincing evidence that non-insulin treated patients who undertake self-blood glucose monitoring (SBGM) have better glycaemic control than those who test their urine. This has led to a recommendation that non-insulin dependent patients undertake urine testing, which is the cheaper option. This recommendation does not take account of patients' experiences and views. This study explores the respective merits of urine testing and SBGM from the perspectives of newly diagnosed patients with Type 2 diabetes. Methods Qualitative study using repeat in-depth interviews with 40 patients. Patients were interviewed three times at 6-monthly intervals over 1 year. Patients were recruited from hospital clinics and general practices in Lothian, Scotland. The study was informed by grounded theory, which involves concurrent data collection and analysis. Results Patients reported strongly negative views of urine testing, particularly when they compared it with SBGM. Patients perceived urine testing as less convenient, less hygienic and less accurate than SBGM. Most patients assumed that blood glucose meters were given to those with a more advanced or serious form of diabetes. This could have implications for how they thought about their own disease. Patients often interpreted negative urine results as indicating that they could not have diabetes. Conclusions Professionals should be aware of the meanings and understandings patients attach to the receipt and use of different types of self-monitoring equipment. Guidelines that promote the use of consistent criteria for equipment allocation are required. The manner in which negative urine results are conveyed needs to be reconsidered.

'I'd like to know what causes it, you know, anything I've done?' Are we meeting the information and support needs of patients with macular degeneration? A qualitative study

Objective: To examine patients' experiences of information and support provision for age-related macular degeneration (AMD) in the UK. Study design: Exploratory qualitative study investigating patient experiences of healthcare consultations and living with AMD over 18 months. Setting: Specialist eye clinics at a Birmingham hospital. Participants: 13 patients diagnosed with AMD. Main outcome measures: Analysis of patients' narratives to identify key themes and issues relating to information and support needs. Results: Information was accessed from a variety of sources. There was evidence of clear information deficits prior to diagnosis, following diagnosis and ongoing across the course of the condition. Patients were often ill informed and therefore unable to self-advocate and recognise when support was needed, what support was available and how to access support. Conclusions: AMD patients have a variety of information needs that are variable across the course of the condition. Further research is needed to determine whether these experiences are typical and identify ways of translating the guidelines into practice. Methods of providing information need to be investigated and improved for this patient group.

Psychological influence of the media on patients commencing oral anticoagulation in atrial fibrillation:a qualitative analysis

Background: Oral anticoagulation (OAC) reduces stroke risk in patients with atrial fibrillation (AF); however it is still underutilized and sometimes refused by patients. Two inter-related studies were undertaken to understand the experiences and what influences this un- derutilisation of warfarin treatment in AF patients. These studies explored physician and patient experiences of AF and OAC treatment. The paper focuses on specific sub-themes from the study that explored patients’ experiences will be discussed. Aim: The study in question aimed to explore the experiences which influence patients’ decisions to accept, decline or discontinue OAC. Methods: Semi-structured individual interviews with patients were con- ducted. Three sub-groups of patients (n = 11) diagnosed with AF were interviewed; those who accepted, refused, and who discontinued war- farin. Interpretative phenomenological analysis (IPA) was used to examine the data. IPA is a qualitative method that focuses on how participants make sense of an experiences phenomenon Results: Three over-arching themes comprised patients’ experiences: (i)the initial consultation, (ii) life after the consultation, and (iii) patients’reflections. In the last theme, patients reflected on their perceptions ofaspirin and warfarin. Aspirin was perceived as a natural wonder-drugwhile warfarin was perceived as a dangerous drug usually given to peo-ple at the end of their life. Interestingly they perceive both drugs as‘old’. However, for aspirin it had a positive association, old meaningtried and tested. While for warfarin, old meant ‘has been around fortoo long’.Conclusion: Media had an important role in how patients’ perceptionsof these two drugs were influenced. Literature shows that framingtechniques, i.e. using certain words or phrases such as ‘rat poison’, areprocesses adopted by media to alter medical knowledge into lay per-son’s language. Patients in turn form negative cognitive schemas,between the word ‘poison’ and warfarin, leading to the negative per-ception of warfarin which could influence non-adherence to treatment.This qualitative research highlighted the potential influences of themedia on AF patient perceptions commencing OAC treatment. Theassociation between media stimuli and patient perceptions on OACshould be further explored. The influential power of lay-media couldalso be instrumental in disseminating appropriate educational materialto the public

Patient experiences of a bariatric group programme for managing obesity:a qualitative interview study

Objectives: People with obesity experience a range of physical and psychological ill-health outcomes. This study examined patients’ experiences of a group-based programme for the management of morbid obesity delivered within the UK National Health Service. The focus of the study was on the emerging dynamic of the group and patients’ perceptions of its impact on health outcomes. Design: A qualitative interview study was conducted and involved patients recruited from a Tier 3 bariatric service in South West England. Verbatim transcripts were analysed using thematic analysis. Methods: Twenty patients (12 females) with a BMI ≥ 35 kg/m2 participated in a semi-structured one-to-one interview. Participants had been registered with the bariatric service for at least 6 months. None of the participants had had bariatric surgery. Results: Most participants felt that they had benefited from participating in the group programme and talked about the group as a resource for lifestyle change. Participants’ narratives centred on the emergence of a sense of self based upon their participation in the group: establishing psychological connections to other patients, or shared social identity, was regarded as a key mechanism through which the programme's educational material was accessed, and underpinned the experience of social support within the group. Through interaction with other patients, involving the sharing of personal experiences and challenges, participants came to experience their weight ‘problem’ through a collective lens that they felt empowered them to initiate and sustain individual lifestyle change. Discussion: Bariatric care groups have the potential to support lifestyle change and weight loss and may help address the psychological needs of patients. Nurturing a sense of shared social identity amongst patients with morbid obesity should be a core aim of the care pathway and may provide the foundation for successful translation of dietetic content in group programmes.

Perceived quality of health care in macular disease:A survey of members of the Macular Disease Society

Aim: To investigate the experiences of people with macular disease within the British healthcare system. Method: The Macular Disease Society Questionnaire, a self completion questionnaire designed to survey the experiences of people with macular disease, was sent to 2000 randomly selected members of the Macular Disease Society. The questionnaire incorporated items about people's experiences with health professionals and the information and support provided by them at the time of diagnosis and thereafter. Results: Over 50% thought their consultant eye specialist was not interested in them as a person and 40% were dissatisfied with their diagnostic consultation. 185 people thought their general practitioner (GP) was well informed about macular disease but twice as many people thought their GP was not well informed. About an equal number of people thought their GP was supportive as those who thought their GP was not supportive. A total of 1247 people were told "nothing can be done to help with your macular disease." A number of negative emotional reactions were experienced by those people as a result, with 61% of them reporting feeling anxious or depressed. Of 282 people experiencing visual hallucinations after diagnosis with macular disease, only 20.9% were offered explanations for them. Concluslons: Many people with macular disease have unsatisfactory experiences of the healthcare system. Many of the reasons for dissatisfaction could be resolved by healthcare professionals if they were better informed about macular disease and had a better understanding of and empathy with patients' experiences.

From words to action:visibility of management in supporting interdisciplinary team working in an acute rehabilitative geriatric hospital

Purpose: The following case study aims to explore management's, health professionals' and patients' experiences on the extent to which there is visibility of management support in achieving effective interdisciplinary team working, which is explicitly declared in the mission statement of a 60-bed acute rehabilitative geriatric hospital in Malta. Design/methodology/approach: A total of 21 semi-structured interviews were conducted with the above-mentioned key stakeholders. Findings: Three main distinct yet interdependent themes emerged as a result of thematic analysis: "managing a team-friendly hospital", "interdisciplinary team components", and "interdisciplinary team processes". The findings show that visibility of management support and its alignment with the process and content levels of interdisciplinary teamwork are key to integrated care for acute rehabilitative geriatric patients. Research limitations/implications: The emerging phenomena may not be reproducible in a different context; although many of the emerging themes could be comfortably matched with the existing literature. Practical implications: The implications are geared towards raising the consciousness and conscientiousness of good practice in interdisciplinary teamwork in hospitals, as well as in emphasizing organizational and management support as crucial factors for team-based organizations. Social implications: Interdisciplinary teamwork in acute rehabilitative geriatrics provides optimal quality and integrated health care delivery with the aim that the older persons are successfully discharged back to the community. Originality/value: The authors draw on solid theoretical frameworks - the complexity theory, team effectiveness model and the social identity theory - to support their major finding, namely the alignment of organizational and management support with intra-team factors at the process and content level. © Emerald Group Publishing Limited.

Be SMART:examining the experience of implementing the NHS Health Check in UK primary care

Background: The NHS Health Check was designed by UK Department of Health to address increased prevalence of cardiovascular disease by identifying risk levels and facilitating behaviour change. It constituted biomedical testing, personalised advice and lifestyle support. The objective of the study was to explore Health Care Professionals' (HCPs) and patients' experiences of delivering and receiving the NHS Health Check in an inner-city region of England. Methods: Patients and HCPs in primary care were interviewed using semi-structured schedules. Data were analysed using Thematic Analysis. Results: Four themes were identified. Firstly, Health Check as a test of 'roadworthiness' for people. The roadworthiness metaphor resonated with some patients but it signified a passive stance toward illness. Some patients described the check as useful in the theme, Health check as revelatory. HCPs found visual aids demonstrating levels of salt/fat/sugar in everyday foods and a 'traffic light' tape measure helpful in communicating such 'revelations' with patients. Being SMART and following the protocolrevealed that few HCPs used SMART goals and few patients spoke of them. HCPs require training to understand their rationale compared with traditional advice-giving. The need for further follow-up revealed disparity in follow-ups and patients were not systematically monitored over time. Conclusions: HCPs' training needs to include the use and evidence of the effectiveness of SMART goals in changing health behaviours. The significance of fidelity to protocol needs to be communicated to HCPs and commissioners to ensure consistency. Monitoring and measurement of follow-up, e.g., tracking of referrals, need to be resourced to provide evidence of the success of the NHS Health Check in terms of healthier lifestyles and reduced CVD risk.

Help-seeking for medically unexplained hearing difficulties:a qualitative study

Aims - Up to 10% of audiology patients report diffi culties hearing speech in noise even though clinical investigation reveals normal hearing thresholds, in other words, no evidence of physical pathology. The diagnostic category applied to these patients is known as King-Kopetzky Syndrome (KKS). This study aimed to gather descriptions of patients' experiences of the clinical encounter involving their KKS diagnosis and analyse the themes of help-seeking, as part of a larger study into the process of coping with medically unexplained hearing diffi culties. Method - A qualitative approach was employed, comprising unstructured interviews in the homes of 25 patients who had attended audiology services (and received a diagnosis of KKS) in Bath and Cardiff. Thematic analysis of transcripts was undertaken, infl uenced by grounded theory techniques. Findings - Informants characterized the clinical encounter as either negative or positive. Negative consultations were those in which patients' illness claims were dismissed and as such not validated. Positive encounters were typifi ed by the provision of meaningful information that reconciled clinical information with the patients' experiences of hearing loss. Conclusion - Successful management of medically unexplained illnesses requires the adoption of a patient-centred approach, rather than focusing on the absence of observable pathology

Patients' perceptions and experiences of taking oral glucose-lowering agents: a longitudinal qualitative study

Aims The aims of this study were to examine Type 2 diabetic patients' expectations, perceptions and experiences of oral glucose-lowering agents (OGLAs), including their reasons for taking/not taking these drugs as prescribed and to provide recommendations for developing interventions to improve OGLA adherence. Methods Longitudinal, qualitative study using repeat in-depth interviews with patients (n = 20) over 4 years following clinical diagnosis. Respondents were recruited from primary and secondary care settings across Lothian, Scotland, UK. Results Despite experiences of side-effects, dislikes and concerns about taking multiple drugs and a belief that OGLAs could themselves cause one's diabetes to progress, most respondents appeared motivated to take these drugs as prescribed. This motivation seemed to arise from respondents' experiences of taking OGLAs and observing them to 'work'. Some respondents described feeling better after taking OGLAs, others, typically those who were asymptomatic, used blood glucose self-monitoring and/or glycated haemoglobin results to observe and evidence the effects of their OGLAs. Most respondents demonstrated a 'passive' expectation that health professionals should be responsible for decisions about medications. Hence, non-adherence typically resulted from forgetfulness rather than ambivalence about either medication or consultation style. Respondent concern about OGLA's largely centred upon lack of knowledge about the medication and what to do when doses were missed. Conclusion The findings call for multifaceted strategies to promote adherence. These could include education to address misconceptions and advise patients how to respond to missed doses; reminders to help patients remember to take their drugs; and structured feedback on the impact of OGLAs on glycaemic control.