Papers by Margaret Douglas
Patient education and counseling, 2011
OBJECTIVE: To explore patients' interpretations of their DNA results for familial hyperchole... more OBJECTIVE: To explore patients' interpretations of their DNA results for familial hypercholesterolemia (FH). METHODS: In-depth interviews were conducted with patients from two lipid clinics in Scotland, who were offered genetic testing as part of a nationwide cascade screening service. RESULTS: Patients were receptive to taking part in genetic screening and most expected a positive result. Receiving a molecular diagnosis of FH could provide reassurance to patients that diet and lifestyle factors were not the primary causes of their condition. Patients who received inconclusive results tended to interpret this as meaning that their high cholesterol was not genetic, which could induce feelings of uncertainty and self-blame. With the exception of newly diagnosed patients, for whom a positive result could provide a useful rationale for initiating statins, most perceived DNA screening to be of little relevance to their own medication use or their own approaches to lifestyle manageme...
British Medical Journal, 2005
Diabetic Medicine, 2006
Aims To explore Pakistani and Indian patients’ experiences of, and views about, diabetes service... more Aims To explore Pakistani and Indian patients’ experiences of, and views about, diabetes services in order to inform the development of culturally sensitive services.Design Qualitative, interview study involving 23 Pakistani and nine Indian patients with Type 2 diabetes recruited from general practices and the local community in Edinburgh, Scotland. Data collection and analysis occurred concurrently and recruitment continued until no new themes emerged from the interviews.Results Respondents expressed gratitude for the availability of free diabetes services in Britain, as they were used to having to pay to access health care on the Indian subcontinent. Most looked to services for the prompt detection and treatment of complications, rather than the provision of advice about managing their condition. As respondents attached importance to receiving physical examinations, they could be disappointed when these were not offered by health-care professionals. They disliked relying on interpreters and identified a need for bilingual professionals with whom they could discuss their diabetes care directly.Conclusions Gratitude for free services in Britain may instil a sense of indebtedness which makes it difficult for Pakistanis and Indians to be critical of their diabetes care. Health-care professionals may need to describe their roles carefully, and explain how different diabetes services fit together, to avoid Pakistani and Indian patients perceiving treatment as unsatisfactory. Whilst linkworker schemes may meet patients’ need to receive culturally sensitive information in their first language, work is needed to assess their effectiveness and sustainability.
Journal of community genetics, 2011
Familial DNA cascade screening for familial hypercholesterolemia (FH) has recently been introduce... more Familial DNA cascade screening for familial hypercholesterolemia (FH) has recently been introduced in Scotland. This study investigated index patients' experiences of DNA testing and mediating cascade screening. Thirty-eight patients with a clinical diagnosis of definite or possible FH who had undergone DNA testing in the lipid clinic took part in semi-structured qualitative interviews. All patients were positive about DNA screening being undertaken by familiar and trusted clinicians within the lipid clinic. Most patients had already cascaded close relatives for serum cholesterol testing following their attendance at the lipid clinic. Identified mutation carriers who had attended the genetics clinic (n = 15) for a cascading appointment described finding this consultation helpful because it identified other at-risk family members and provided them with tailored information for their relatives. Participants who expressed a preference said they favoured indirect (patient-mediated)...
Journal of Epidemiology and Community Health, 2001
Journal of Public Health, 2001
Journal of Public Health, 2001
Journal of Health Psychology, 2005
British Medical Journal, 2007
British Medical Journal, 2005
Diabetic Medicine, 2008
Aims The aims of this study were to examine Type 2 diabetic patients’ expectations, perceptions ... more 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.
Diabetic Medicine, 2005
Aims To explore newly diagnosed Type 2 diabetes patients’ views about Scottish diabetes services... more 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 disliked 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.
Social Science & Medicine, 2005
Patient Education and Counseling, 2004
Articles and Book Chapters by Margaret Douglas
British Medical Journal, Jan 1, 2007
Objective To explore views of patients with type 2 diabetes about self monitoring of blood glucos... more Objective To explore views of patients with type 2 diabetes about self monitoring of blood glucose over time.
Design Longitudinal, qualitative study.
Setting Primary and secondary care settings across Lothian, Scotland.
Participants 18 patients with type 2 diabetes.
Main outcome measures Results from repeat in-depth interviews with patients over four years after clinical diagnosis.
Results Analysis revealed three main themes—the role of health professionals, interpreting readings and managing high values, and the ongoing role of blood glucose self monitoring. Self monitoring decreased over time, and health professionals’ behaviour seemed crucial in this: participants interpreted doctors’ focus on levels of haemoglobin A1c, and lack of perceived interest in meter readings, as indicating that self monitoring was not worth continuing. Some participants saw readings as a proxy measure of good and bad behaviour—with women especially, chastising themselves when readings were
high. Some participants continued to find readings difficult to interpret, with uncertainty about how to respond to high readings. Reassurance and habit were key reasons for continuing. There was little indication that participants were using self monitoring to effect and maintain behaviour change.
Conclusions Clinical uncertainty about the efficacy and role of blood glucose self monitoring in patients with type 2 diabetes is mirrored in patients’ own accounts. Patients tended not to act on their self monitoring results, in part because of a lack of education about the appropriate response to readings. Health professionals should be explicit about whether and when such patients should self monitor and how they should interpret and act upon the results, especially high readings.
Social Science & Medicine, Jan 1, 2008
We undertook a longitudinal qualitative study involving of 20 patients from Scotland who had type... more We undertook a longitudinal qualitative study involving of 20 patients from Scotland who had type 2 diabetes. We looked at their perceptions and understandings of why they had developed diabetes and how, and why, their causation accounts had changed or remained stable over time. Respondents, all of whom were white, were interviewed four times over a 4-year period (at baseline, 6, 12 and 48 months). Their causation accounts often shifted, sometimes subtly, sometimes radically, over the 4 years. The experiential dimensions of living with, observing, and managing their disease over time were central to understanding the continuities and changes we observed. We also highlight how, through a process of removing, adding and/or de-emphasising explanatory factors, causation accounts could be used as “resources” to justify or enable present treatment choices. We use our work to support critiques of social cognition theories, with their emphasis upon beliefs being antecedent to behaviours. We also provide reflections upon the implications of our findings for qualitative research designs and sampling strategies.
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Papers by Margaret Douglas
Articles and Book Chapters by Margaret Douglas
Design Longitudinal, qualitative study.
Setting Primary and secondary care settings across Lothian, Scotland.
Participants 18 patients with type 2 diabetes.
Main outcome measures Results from repeat in-depth interviews with patients over four years after clinical diagnosis.
Results Analysis revealed three main themes—the role of health professionals, interpreting readings and managing high values, and the ongoing role of blood glucose self monitoring. Self monitoring decreased over time, and health professionals’ behaviour seemed crucial in this: participants interpreted doctors’ focus on levels of haemoglobin A1c, and lack of perceived interest in meter readings, as indicating that self monitoring was not worth continuing. Some participants saw readings as a proxy measure of good and bad behaviour—with women especially, chastising themselves when readings were
high. Some participants continued to find readings difficult to interpret, with uncertainty about how to respond to high readings. Reassurance and habit were key reasons for continuing. There was little indication that participants were using self monitoring to effect and maintain behaviour change.
Conclusions Clinical uncertainty about the efficacy and role of blood glucose self monitoring in patients with type 2 diabetes is mirrored in patients’ own accounts. Patients tended not to act on their self monitoring results, in part because of a lack of education about the appropriate response to readings. Health professionals should be explicit about whether and when such patients should self monitor and how they should interpret and act upon the results, especially high readings.
Design Longitudinal, qualitative study.
Setting Primary and secondary care settings across Lothian, Scotland.
Participants 18 patients with type 2 diabetes.
Main outcome measures Results from repeat in-depth interviews with patients over four years after clinical diagnosis.
Results Analysis revealed three main themes—the role of health professionals, interpreting readings and managing high values, and the ongoing role of blood glucose self monitoring. Self monitoring decreased over time, and health professionals’ behaviour seemed crucial in this: participants interpreted doctors’ focus on levels of haemoglobin A1c, and lack of perceived interest in meter readings, as indicating that self monitoring was not worth continuing. Some participants saw readings as a proxy measure of good and bad behaviour—with women especially, chastising themselves when readings were
high. Some participants continued to find readings difficult to interpret, with uncertainty about how to respond to high readings. Reassurance and habit were key reasons for continuing. There was little indication that participants were using self monitoring to effect and maintain behaviour change.
Conclusions Clinical uncertainty about the efficacy and role of blood glucose self monitoring in patients with type 2 diabetes is mirrored in patients’ own accounts. Patients tended not to act on their self monitoring results, in part because of a lack of education about the appropriate response to readings. Health professionals should be explicit about whether and when such patients should self monitor and how they should interpret and act upon the results, especially high readings.
Keywords: diabetes, repeat interviews, qualitative research, research participation
Aim: To explore type 2 diabetes patients’ talk about implementing and sustaining physical activity.
Design of study: Longitudinal, qualitative study using repeat in-depth interviews with 20 patients over 4 years following clinical diagnosis.
Setting: Patients were recruited from 16 general practices and three hospitals across Lothian, Scotland.
Results: Discussion, and salience, of physical activity was marginal in patient accounts of their diabetes management. Patients claimed to have only received vague and non-specific guidance about physical activity from health professionals, and emphasised a perceived lack of interest and encouragement. Aside from walking, physical activities which were adopted tended to attenuate over time. Patients’ accounts revealed how walking a dog assisted this kind of activity maintenance over time. Three main themes are highlighted in the analysis: 1) incidental walking; 2) incremental physical activity gains; and 3) augmenting physical activity maintenance. The problems arising from walking without a dog (for example, lack of motivation) are also examined.
Conclusion: Asking patients about pet preferences might seem tangential to medical interactions. However, encouraging dog walking or identifying another interest that promotes a regular commitment to undertake physical activity may yield long-term health benefits.
Keywords
behaviour change; exercise; patients’ perspectives; physical activity; qualitative study; type 2 diabetes.
Keywords
compliance, diabetic regimen, diet, discourse analysis,
type 2 diabetes
METHODS: A qualitative study was carried out in the Lothian region of Scotland using in-depth interviews of 40 newly diagnosed type 2 diabetes patients recruited from 16 general practices in four Local Health Care Co-operatives and three hospital clinics. Purposive selection ensured that the sample's demographic characteristics were broadly representative of newly diagnosed type 2 diabetes patients in Lothian/Scotland.
RESULTS: Clarity, timing and authority of the diagnosis delivery were highly salient for patients. Many patients perceived their GP as unwilling to deliver/confirm the diagnosis. Patients who were not referred to hospital were unclear why a referral had not taken place. Those referred perceived confirmation of diagnosis by the consultant as a central reason. Waiting for a hospital appointment could be problematic for patients. Most wanted the diagnosis confirmed before they felt confident making lifestyle changes. Input from health services during the period prior to the hospital visit was highly valued. Waiting was taken by some asymptomatic patients to indicate that they did not have the condition. Others used a lengthy period of waiting to confirm their view that they had a 'milder' or 'less serious' form of diabetes than other patients.
CONCLUSIONS: Adequate input from practitioners is needed to ensure that diagnosis is fully exploited as a crucial period in which patients learn to adapt to their condition. Being explicit about the diagnosis at first contact may avoid the problem of patients feeling 'in limbo' or uncertain whether they have type 2 diabetes. Practitioners should convey to patients that post-diagnosis/initial care is a process, stages of this process should be clarified to avoid misunderstanding and services should be integrated during this interim period to best effect.
Design Repeat in-depth interviews with 20 patients over 4 years.
Participants and setting Twenty type 2 diabetes patients recruited from primary- and secondary-care settings across Lothian, Scotland.
Results Patients’ views about their current diabetes care were informed by their previous service contact. The devolvement of diabetes care/reviews to general practice was presented as a ‘mixed blessing’. Patients gained reassurance from their perception that receiving practice-based care/reviews signified that their diabetes was well-controlled. However, they also expressed resentment that, by achieving good control, they received what they saw as inferior care and/or less-frequent reviews to others with poorer control. While patients tended to regard GPs as having adequate expertise to conduct their practice-based reviews, they were more ambivalent about nurses taking on this role. Opportunities to receive holistic care in general practice were not always realized due to patients seeing health-care professionals for diabetes management to whom they would not normally present for other health issues.
Conclusions It is important to educate patients about their care pathways, and to reassure them that frequency of reviews depends more on clinical need than location of care and that similar care guidelines are followed in hospital clinics and general practice. A patients’ history of service contact may need to be taken into account in future studies of service satisfaction.