Article

'I wish my health professionals understood that it's not just all about your HbA 1c !'. Qualitative responses from the second Diabetes MILES - Australia (MILES-2) study

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Abstract

Aims: To explore what people with diabetes wish their health professionals understood about living with diabetes. Methods: Thematic analysis was conducted of responses to a single open-ended question, 'What do you wish your health professional understood about living with diabetes?', which was part of the Diabetes MILES-2 survey, assessing the psychological and behavioural aspects of living with type 1 or type 2 diabetes in Australian adults. Results: In total, 1316 responses (56% response rate) were collected, with 1190 responses included for analysis (54% from respondents with type 1 diabetes, 46% from those with type 2 diabetes). Seven major themes emerged; respondents wished their health professional understood: 1) the potential barriers to diabetes management; 2) that it is 'easier said than done'; 3) the social/emotional impact; 4) that they want, need and deserve more; 5) that judgements, assumptions and negative perspective are not helpful; 6) more about diabetes; and 7) that the respondent is the expert in his/her diabetes. Other comments suggested satisfactory experiences with health professionals, highlighting that some respondents had no wish for their health professional to understand more. Conclusions: This study highlights that, although some adults with diabetes are satisfied with their health professionals' understanding of living with diabetes, many report unmet needs and perceive a lack of person-centred care from their health professionals.

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... Sample size targets were N = 50 from each country, based on past studies of QoL in people with diabetes achieving conceptual saturation with similar sample sizes. 11 Purposive sampling was used with the aim of recruiting approximately 50% of the sample with ≥1 severe hypoglycaemic episode in the past year and/or IAH, to ensure that data were being collected from individuals with recent experiences of problematic hypoglycaemia. ...
... The wording of questions was informed by a national survey of people with diabetes in which a single openended question was used to explore participants' wishes for support from healthcare professionals. 11 Participants were encouraged to provide as much detail as possible in their free-text responses. Five adults with type 1 diabetes piloted the survey and provided feedback on the readability, relevance and importance of questions. ...
... The finding that participants wanted more structured clinical support and more understanding from other people is consistent with previous studies of support needs relating to diabetes self management more broadly. 11,20 In addition, this study revealed several novel findings in terms of unmet needs relating specifically to hypoglycaemia. Participants wanted healthcare professionals to address their personal challenges with hypoglycaemia and provide personalised, rather than generic, advice. ...
Article
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Objective: Hypoglycaemic episodes and fear of hypoglycaemia can be burdensome for adults with type 1 diabetes. This study explored unmet support needs relating to hypoglycaemia among adults with type 1 diabetes living in Denmark, Germany, the Netherlands, or the United Kingdom. Research design and methods: Respondents participated in a web-based qualitative study involving four open-ended questions that asked what they wished other people understood about hypoglycaemia and what they wished other people would do differently to support them with hypoglycaemia. Responses were analyzed using reflexive thematic analysis. Results: Participants were 219 adults with type 1 diabetes (mean±SD age 39±13 years; mean±SD diabetes duration 20±14 years). Four themes were identified, describing unmet needs for: 1) Clinical support, including access to new diabetes technologies, training on hypoglycaemia prevention, personalised care, and psychological support; 2) Practical support, including family and friends better supporting the person with diabetes in managing and preventing episodes; 3) Education for other people, including improved awareness of and general knowledge about hypoglycaemia; and 4) An appreciation of the burden, including more understanding of the experience of episodes and their impact, and the burden of living with the risk of hypoglycaemia. Conclusions: Adults with type 1 diabetes report several unmet support needs relating to hypoglycaemia. Service delivery should be person-centred and prioritise the individual's support needs. Clinical conversations could involve open-ended questions that ask about the individual's experiences of hypoglycaemia and identify how their needs can be met with tailored support plans. People with diabetes and their family members should be offered hypoglycaemia-specific education and training.
... 10 However, a recent study found that the recommendations of person-centred care models in guidelines and policies have not yet been implemented and that many people with type 1 and type 2 diabetes report unmet needs and lack of understanding of living with diabetes in relation to their contact with healthcare professionals, for example, the social and emotional impact. 11 The majority of people with type 2 diabetes are treated in a primary care setting whereas people with type 1 diabetes are treated mainly in the secondary sector. 12 Thus, type 1 and type 2 diabetes consultations are presumably not identical, for example, in relation to communication and expectations. ...
... 9,19 Organizational incentives and training and support for diabetes professionals to implement a person-centred approach are key. 9,11 We found that some people with type 1 diabetes wanted to discuss diabetes based on everyday life, including the possibility of addressing psychosocial issues, and not just focus on 'numbers on the computer screen'. This is consistent with previous findings that people with diabetes want to discuss psychosocial issues with diabetes professionals and that doing so can decrease their diabetes distress and increase well-being and glycaemic control. ...
... This is consistent with previous findings that people with diabetes want to discuss psychosocial issues with diabetes professionals and that doing so can decrease their diabetes distress and increase well-being and glycaemic control. [4][5][6]11 Previous studies have also highlighted the need for a shift from the usual clinician role of an information-deliverer and problem-solver to being an active explorer in order to create a person-centred conversation in diabetes consultations. 1 However, our results strongly suggest that not all people with type 1 diabetes want to discuss concerns and worries with their diabetologist. Some participants preferred a diabetes consultation based primarily on 'the numbers' and perceived discussions on everyday life as irrelevant. ...
Article
Aims To explore perceptions of useful routine consultations with diabetologists from the perspective of adults with type 1 diabetes, including preferences for discussing psychosocial issues. Methods We conducted semi‐structured interviews in 2018/2019 with 33 people with type 1 diabetes (age 22–75 years, 20 men and 13 women, median diabetes duration 25 years) recruited from two diabetes clinics in the capital region of Denmark. Interviews were audio recorded, transcribed verbatim and analysed using thematic text condensation. Results Achieving a useful consultation was perceived as a shared responsibility between people with diabetes and diabetologists. Participants’ perspectives of what constitutes a useful consultation and expectations for both consultation and diabetologist varied in relation to perceptions of (1) the interaction between the person with diabetes and diabetologist, including being prepared, being honest, experiencing good rapport and preferring a partnership with the diabetologist or ‘keeping it clinical’ and (2) the diabetologist’s approach to diabetes care, including providing up‐to‐date knowledge and listening and showing understanding. Conclusions Both content and style of diabetes consultations need to be adapted to the individual person with type 1 diabetes. People with diabetes have an important role in expressing their needs and preferences related to both content and style. Diabetologists need to be aware of and attentive to the many individual needs and expectations among people with diabetes, including the desire and need to discuss psychosocial issues. Dialogue tools for preparation and in consultations may enable people with diabetes to voice their needs and expectations and diabetologists to juggle these diversities.
... 8 However, recent studies indicate that healthcare providers (HCPs) still place excessive focus on biomedical outcomes compared to those that people with diabetes find important. 9,10 Guided by the Medical Research Council's framework for developing and evaluating complex interventions, 11 we have designed, feasibility tested and piloted an intervention to address diabetes distress in the Diabetes Patient-Reported Outcome Measures (DiaPROM) trial. [12][13][14] The pilot trial targets young adults (age ≥18 to <40) with type 1 diabetes receiving outpatient follow-up and is described in detail elsewhere. ...
... [19][20][21] Their calls for continuity in care and person-centred, holistic approaches to follow-up extending beyond biomedicine and highlighting motivational and emotional challenges, are also supported in the literature. 9,10,19,22 Biomedical outcomes are undeniably important but do not necessarily reflect aspects most important to people with diabetes. 9,23 In this pilot trial context, participants conveyed appreciation about the PAID's content in addition to how it functioned as an eyeopener and promoted dialogue about important matters. ...
... 9,10,19,22 Biomedical outcomes are undeniably important but do not necessarily reflect aspects most important to people with diabetes. 9,23 In this pilot trial context, participants conveyed appreciation about the PAID's content in addition to how it functioned as an eyeopener and promoted dialogue about important matters. In accordance with PROM literature, it created an opportunity for reflective thinking and validated their narrative, 8,24,25 which in turn seemed to facilitate and enhance the patient-provider dialogue. ...
Article
Full-text available
Aim: To explore young adults' experiences of outpatient follow-up appointments, completing electronic Patient-Reported Outcome Measures (PROMs), and using the Problem Areas In Diabetes (PAID) scale during the Diabetes Patient-Reported Outcome Measures (DiaPROM) pilot trial. Methods: We performed a qualitative study among 19 young adults (aged 22-39 years) with type 1 diabetes who participated in the pilot trial. Between February and June 2019, we conducted individual, semi-structured telephone interviews with participants from the intervention and control arms. We analysed the data using thematic analysis. Results: Our analyses generated three themes, each with two subthemes: (1) Follow-up with limitations; (i) Marginal dialogue about everyday challenges, (ii) Value of supportive relationships and continuity, indicate that previous follow-up had been experienced as challenging and insufficient. (2) New insights and raised awareness; (i) More life-oriented insights, (ii) Moving out of the comfort zone, suggest mostly positive experiences with completing questionnaires and discussing the PAID scores. (3) Addressing problem areas with an open mind; (i) Need for elaboration, (ii) Preparedness for dialogue, indicate that both openness and explanations were vital in the follow-up. Conclusions: Participants characterised the previous follow-up as challenging and insufficient. They described completing and using the PAID as somewhat uncomfortable yet worthwhile. Our findings also suggest that by utilising diabetes distress data alongside health and biomedical outcomes, consultations became more attuned to the young adults' wishes and needs, mainly because the dialogue was more focused and direct. Hence, the PAID has the potential to facilitate person-centredness and improve patient-provider relationships.
... However, previous research suggests that, in practice, people with type 2 diabetes perceive a lack of understanding from health professionals about the difficulties in managing diabetes, including weight management. 6 Other research has found health professionals do not prioritise weight management discussions even in those with weight-related chronic conditions such as type 2 diabetes, leaving the person wondering whether their weight is an issue worth discussing or treating. 7 When discussions do take place, research has found there is a need for additional instructive support beyond the prescription of weight loss. ...
... Some viewed direct communication (e.g. bluntly providing information or directives) as unhelpful or offensive 8 and felt there to be a lack of empathy and emotional support from health professionals 6 ; others viewed the direct style of communication favourably and found it persuasive and motivating. Furthermore, people with type 2 diabetes also report stigmatisation by health professionals, including being judged and shamed for their weight and efforts to manage their weight and their diabetes. ...
... Evidence of health professionals, including dietitians, 24 being insensitive, unsupportive and/or providing incorrect/outdated advice has been reported elsewhere. 6 However, the specific and disproportionate number of comments necessitates further consideration. In our study, the number of perceived negative experiences regarding dietary information and advice being delivered may be symptomatic of the 'digital age' and the increased access to contradictory information, which only continues to expand, about the effectiveness of various dietary approaches. ...
Article
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Aims: To explore preferences of adults with type 2 diabetes regarding the approach to weight management discussions in clinical care. Methods: Online survey of Australian adults with type 2 diabetes, recruited via a national diabetes registry. Three open-ended questions explored participants' experiences and ideal approach to discussing weight management with health professionals. Data subjected to inductive thematic template analysis. Results: Participants were 254 adults, 58% aged 60+ years, 52% women, 35% insulin-treated. Five themes were developed to categorise participants' preferences for, as well as differing experiences of, weight management discussions: (1) Collaborative, person-centred care: working together to make decisions and achieve outcomes, taking personal context into consideration; (2) Balanced communication: open, clear messages encouraging action, empathy and kindness; (3) Quality advice: knowledgeable health professionals, providing specific details or instructions; (4) Weight management intervention: suitable modalities to address weight management; (5) System-wide support: referral and access to appropriate multi-disciplinary care. Conclusions: Participants expressed preferences for discussing weight management in collaborative, person-centred consultations, with quality advice and personalised interventions across the health system, delivered with empathy. By adopting these recommendations, health professionals may build constructive partnerships with adults with type 2 diabetes and foster weight management.
... This serves as a barrier to more widespread adoption and effective use of digital health initiatives. 15 This highlights the increasingly important role digital health initiatives can have within diabetes management, particularly if these barriers to greater widespread adoption are addressed. Therefore, this systematic qualitative literature review was conducted to understand the unmet psychosocial needs of diabetes regarding digital health initiatives used to manage adults with type 2 diabetes. ...
... The strength of this systematic qualitative literature review is that it is based on a focused and comprehensive literature search, screening, study selection, and analysis of the final 10 included studies, completed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, the PRISMA 2020 Statement methodology for undertaking a systematic review. 15 Another strength is the recency of data with most of the final included studies published between 2019 and 2021 (80%). Findings from this review add to the current body of knowledge and complement previous systematic quantitative literature reviews focusing on experiences, evaluations and usability of digital health initiatives aimed at helping adults with type 2 diabetes self-manage their condition. ...
Article
Aims: The rapidly growing number of adults with type 2 diabetes globally means the uses and benefits of digital health initiatives to enhance self-management of diabetes warrant review. This systematic qualitative literature review aimed to understand usability of digital health initiatives for adults with type 2 diabetes. Methods: This systematic qualitative literature review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, the PRISMA 2020 Statement methodology. Three databases were used (SCOPUS, Medline, and CINAHL) to identify studies published from 2016 to 2021 that focused on experiences, evaluations, and usability of digital health initiatives aimed at helping adults with type 2 diabetes to self-manage their condition. Results: From the 407 studies identified, 35 studies were assessed for eligibility with 10 studies included in the final synthesis. Five main themes emerged: (1) unmet emotional needs, (2) enhancing self-management, (3) desire for education, (4) usability/user-experience, and (5) risk of biomedical marker reductionism. Conclusions: This review identified 5 key themes for consideration to understand usability of digital health initiatives. If these unmet psychosocial needs of adults with type 2 diabetes are better addressed in digital health initiatives, enhanced daily self-management will lead to more optimal diabetes management which can increase overall health outcomes, reduce the risk of longer-term complications, enhance quality of life for type 2 diabetes and improve more widespread adoption of digital health initiatives. Keywords digital health, adults with diabetes, adults with type 2 diabetes, self-management
... diabetes language at diagnosis has a lasting impact on the person with diabetes [4,5]. diabetes language is confusing, unrealistic, inaccurate, frustrating, intimidating, and harmful [6][7][8][9]. diabetes language affects continuity of care. This includes attendance and experiences at diabetes clinics and services, including feeling criticised, judged, belittled and patronised, or feeling understood, supported and confident [10][11][12]. ...
... diabetes language affects the glucose levels of people with diabetes [37][38][39]. diabetes language alienates or isolates people affected by diabetes [7,11,21,22,40]; and loneliness is known to be more damaging to health than smoking [41]. diabetes language contributes to diabetes distress and 'burnout' among health professionals [42], and affects trainees' interest in specialising in diabetes [34]. ...
Article
The words used about diabetes affect the physical and emotional health of people living with diabetes. They also affect how individuals and society view people living with, or at risk of, diabetes. People with diabetes, their families, and people at risk of diabetes, need and deserve communications that are clear and accurate, respectful and inclusive, and free from judgement and bias. The aim of this position statement is to help bring about positive change in the language used about diabetes. It is based on 30+ years of research into the experiences of people with diabetes. Changing the language of diabetes can make a powerful and positive difference to the emotional well-being, self-care and health outcomes of people affected by diabetes. It also affects community and government support for funding diabetes care, prevention and research. Diabetes Australia encourages everyone communicating about diabetes, or about people affected by diabetes, to choose and use their words carefully to support all people affected by diabetes. This is intended as a guide for people working in healthcare, the media, government and policy, academia, industry, as well as employers and the community. It may also be helpful for the family and friends of people with diabetes.
... Despite a person-centred care focus, our study highlights the ongoing focus on glycaemia. Other qualitative studies have reported that doctors focus on glycaemic targets, which can be a barrier for people with diabetes to engage in meaningful discussions with healthcare professionals.(24)(25)(26) These studies also found that healthcare professionals communication may cause people with diabetes to disengage from medical care.(25)(26)(27) ...
... Other qualitative studies have reported that doctors focus on glycaemic targets, which can be a barrier for people with diabetes to engage in meaningful discussions with healthcare professionals.(24)(25)(26) These studies also found that healthcare professionals communication may cause people with diabetes to disengage from medical care.(25)(26)(27) Barriers to addressing emotional issues in general practice include difficulties disclosing emotional issues due to perceptions of lack of time to address these issues, embarrassment related to the emotional issues or due to the doctors communication style not facilitating disclosure.(28,29) ...
Article
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Background Diabetes distress, experienced by up to 40% of people with type two diabetes, is the negative emotional response to the burden of living with and managing diabetes. It is associated with sub-optimal glycaemia and diabetes self-management. Research indicates that people with diabetes do not recall being asked about emotional distress by health care professionals. Aim Explore the experiences, needs and expectations of people with type two diabetes regarding emotional support received in Australian general practice. Design & Setting Exploratory qualitative study in Victoria, Australia. Method Semi-structured interviews exploring emotional health and support received in general practice in twelve adults with type two diabetes who primarily attend general practice. Interviews were audio-recorded, transcribed verbatim, and analysed using the framework approach. Results Three major themes were identified: 1) Beneath the surface of diabetes care; 2) Importance of GP-patient relationship; 3) Communication counts. Participants experienced diabetes care as focused primarily on medical management, rather than the emotional aspects of living with type two diabetes. While people’s experiences of diabetes care in general practice primarily focused on physical health, the GP care beyond the presenting complaint has an essential role in identifying emotional issues and enabling support. Emotional issues were more likely to be discussed and acknowledged by the GP where there was a long-standing relationship between GP and patient. Conclusion Pre-existing positive GP-patient relationships and supportive communication enable people with type two diabetes to raise emotional issues as part of diabetes care.
... Både klinikere og personer med diabetes type 1 fremhever at en ensidig fokusering på biomedisinske helseparametere fremfor psykososial helse hindrer diabetesomsorg av høy kvalitet (22,23). Likevel nevnes ikke diabetesrelatert bekymring spesi kt i Helsedirektoratets gjeldende retningslinje for diabetesbehandling og -oppfølging (10). ...
... Videre fant vi at PAID bidro til at konsultasjonene ble mer tilpasset de unge voksnes ønsker og behov, hovedsakelig fordi dialogen med legene ble mer fokusert og direkte. Det støttes av andre studier hvor forfatterne har pekt på behovet for at helsevesenet integrerer psykososial støtte i diabetesoppfølgingen (5,8,22,23). ...
Article
Full-text available
This is an article in Norwegian summing up our studies on using PROMs in diabetes consultations.
... People living with diabetes have highlighted their dissatisfaction with the sole focus on HbA1c. Participants in the MILES-2 study, which surveyed over 1000 people living with diabetes in Australia (54% living with T1D) felt their clinicians focus was too narrow and biomedical (10) and young adults in the DiaPROM study reported that they were reluctant to attend clinic when the focus was only on the (biomedical) numbers (11). We need to shift the focus of clinical encounters from the narrow biomedical focus to one that is inclusive of young adults' own priorities and life context. ...
Article
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Young adults living with type 1 diabetes often struggle to achieve what clinicians consider to be optimal levels of metabolic control. Despite the impact that this can have on a young person’s future risk of complications, there are relatively few studies reporting new ways of organizing or delivering care to this cohort. In this paper we explore some of the reasons why young adult diabetes care is challenging and describe approaches to “re‐imagining” how care might be improved. The work is informed by the “Making Care Fit” collaborative and by a program of research, entitled D1 Now, involving co‐design of a complex person‐centered intervention with young adults.
... Current therapeutic approaches for people with YOT2D are primarily pharmacologic [9]. Equally important however is self-management since most diabetes self-care takes place in the person's own home and relies on daily decisions and health behaviours [10]. People with YOT2D experience unique barriers to optimal diabetes self-management including existing health comorbidities, disproportionate representation among lower socioeconomic and ethnic minority groups, low literacy, low engagement with health services, and experience of a range of diabetes, racial, and obesityrelated stigmas [11][12][13][14]. ...
Article
Full-text available
People with younger-onset type 2 diabetes (YOT2D, diagnosis before 40 years of age) are at higher risk of morbidity and premature mortality compared with their similar-age type 1 diabetes and later-onset type 2 diabetes peers. Despite recommendations for targeted, behavioural, and psychosocial approaches to optimising health outcomes, there are few such interventions for this group. Furthermore, evaluations of health behaviour change interventions targeting this priority population have proven challenging to complete. Despite this, there is little guidance for future behavioural programme developers. The aims of this paper are to synthesise lessons learned and recommendations from published evaluations of YOT2D-focused health behaviour change interventions, and illustrate challenges and solutions using case studies from our own experience. A rapid review of the literature identified 11 trials of behavioural interventions for YOT2D (5 randomised controlled trials, 6 pre/post studies). We sourced related needs assessment and development papers to describe the life course of each programme. We identified two development and two evaluation-related themes impacting successful trial execution. Development recommendations include ensuring appropriate adaptation of existing interventions to the unique challenges and characteristics of the target group, use of theory or theoretical frameworks throughout, and involvement of the priority population and key stakeholders from inception. Evaluation recommendations include planning for meaningful evaluation and development of age-appropriate Core Outcomes Sets. Future programme developers would benefit from closer attention to intervention development guidelines and a focus on supporting those with YOT2D to achieve behaviour change and diabetes self-management goals, ahead of change to biomedical outcomes.
... Young people's expectations of technology often diverge from those of their caregivers, and priorities are set differently (eg, independence versus reduced fear of hypoglycemia and improved sleep). Moreover, stigmatization [56] and judgement [57] by family members or peers can affect relationships and overall diabetes management. Thus, the nature of relationships between young people with T1DM and their caregivers, peers, and health professionals needs to be accounted for in the design of these technologies, particularly the relationship between youth with T1DM and their parents, which is characterized by a fine balance between autonomy and dependence (interdependence, also termed as transactional) [58]. ...
Preprint
(unstructured) An important strategy to understand young people’s needs regarding technologies for Type 1 Diabetes Mellitus (T1DM) management is to examine their day-to-day experiences with these technologies. This study aimed to describe T1DM youth and their caregivers’ experiences and preferences regarding insulin pumps, sensor technologies, and related communication technologies based on a hybrid theoretical foundation, as well as to describe derived ideal device characteristics. Sixteen face-to-face interviews were conducted with young people and their parents. Data analysis included data-driven thematic analysis followed by theory-driven analysis (Unified Theory of Acceptance and Use of Technology; value sensitive design). Initial themes derived from the interviews included aspects of self-management, device use, technological characteristics, and feelings associated with device types. Interview findings were congruent with factors from the two theories. Discussions around ideal devices focused on reliability, flexibility, and automated closed loop systems that enabled an independent life for young people and alleviated parental anxiety. Reality deviated from expectations, with inaccuracy problems and technical failures reported. Technologies for diabetes self-management require continual advancement to meet the needs of young people with T1DM and their caregivers. Understanding experiences and challenges with devices enabled us to identify theory-supported device characteristics useful for the designing of improved technologies. Extended abstract (structured) Background An important strategy to understand young people’s needs and preferences regarding technologies for Type 1 Diabetes Mellitus (T1DM) management is to examine their day-to-day experiences with these technologies. Objective This study aimed to describe T1DM youth and their caregivers’ experiences and preferences regarding insulin pumps, sensor technologies, and related communication technologies based on a hybrid theoretical foundation, as well as to describe derived ideal device characteristics. Materials and Methods Sixteen face-to-face interviews were conducted with young people with T1DM and their parents about their diabetes technology use. A combination of data-driven thematic analysis in a first stage, and theory-driven analysis in a second stage was used to incorporate in-depth study analysis and existing theoretical literature. Relevant literature included technology adoption (Unified Theory of Acceptance and Use of Technology/UTAUT) and value sensitive design (VSD) models. Based on this approach ideal device characteristics for young people with T1DM were summarized. Results Initial themes derived from the interviews included aspects of diabetes self-management, device use, and specific device-related technological characteristics and feelings associated with the specific device types (continuous glucose monitoring, insulin pump, flash glucose monitoring). The interview data delivered information congruent with all UTAUT and VSD factors except for one (privacy). Discussions around ideal diabetes devices focused on reliability, flexibility, and automated closed loop systems that enabled an independent and normal life for adolescents, and alleviated parental anxiety. However, in line with the previous systematic review, the interview analysis showed that reality deviated from these expectations, with inaccuracy problems reported for continuous glucose monitoring devices, and technical failures occurring in both continuous glucose monitoring devices and insulin pumps. Conclusions UTAUT and VSD approaches were found useful as a combined foundation for structuring our study findings. Technologies for diabetes self-management require continual advancement to meet the needs and expectations of young people with T1DM and their caregivers. Understanding their experiences, as well as challenges with the devices, enabled us to identify theory-supported ideal device characteristics that can be useful in the designing and developing of improved technologies.
... As novel therapies are developed with potential for better outcomes, including the possibility of achieving near normoglycemia [21], it is important to understand how people with T2D view the benefits and risks associated with new treatment options. The results of the current study and prior studies suggest that participants have extremely varied experiences and perspectives in terms of their diagnostic and treatment histories and their perceptions of the impact of T2D on their lives [26][27][28][29]. However, to date, there has been very little research on the perceptions and expectations of people with diabetes about their future with the condition. ...
Article
Full-text available
Introduction: Type 2 diabetes (T2D) is extremely burdensome to people with T2D and associated with impaired health-related quality of life. This study explores the impact of T2D and potentially relevant outcomes for new therapies using a unique approach to in-depth qualitative interviews where people with T2D are asked to think about their future with T2D. Methods: A cross-sectional qualitative interview study among people with T2D from the USA and UK. Interviews explored their treatment journey, perceptions of their future with T2D, and the value of achieving normoglycemia (explored through presentation of two vignettes with hypothetical medications that reduced hemoglobin A1c [HbA1c] levels < 7% and < 5.7%). Results: Patients with T2D (N = 50; US n = 25; UK n = 25) were 66.0% male, had a mean body mass index (BMI) of 30.8 ± 6.3 kg/m2, and had a mean of 13.0 ± 10.0 years since diagnosis. Current diabetes treatments included diet and exercise only (8.0%), oral medications only (62.0%), oral plus injections (24.0%), and insulin only (6.0%). Despite being treated, participants reported over 25 different unmet needs related to their T2D across a broad range of domains. The most common concerns were diet, diabetes-related complications, weight changes, and psychological and emotional issues. A large majority of participants indicated that achieving lower HbA1c values would change their life. When reflecting on the value of improved glycemic control, patients primarily anticipated physical improvements and improved psychological well-being. When presented with two hypothetical treatments, about 70% of participants preferred the < 5.7% treatment option over the < 7% HbA1c treatment option. Conclusions: People with T2D have a high disease burden, a broad range of unmet needs, and extremely varied experiences and expectations on the impacts of T2D on their lives and future. Many patients indicated that achieving near normoglycemia would substantially change their lives primarily in terms of their physical and emotional health.
... 23 Another Australian study also found that PWD felt that the psychological impact of living with diabetes was not heard, that care should focus not only on HbA 1c levels, and that they were not being involved enough in their care. 24 Accordingly, in our study PWD themselves emphasised the wish to be empowered and HCPs want to support this independence. However, PWD mentioned that they are not being provided with the tools and education to manage their diabetes. ...
Article
Full-text available
Aim: Globally, type 2 diabetes care is often fragmented and still organised in a provider-centred way, resulting in suboptimal care for many individuals. As healthcare systems seek to implement digital care innovations, it is timely to reassess stakeholders' priorities to guide the redesign of diabetes care. This study aimed to identify the needs and wishes of people with type 2 diabetes, specialist and primary care teams regarding optimal diabetes care to explore how to better support people with diabetes in a metropolitan healthcare service in Australia. Methods: Our project was guided by a Participatory Design approach and this paper reports part of the first step, identification of needs. We conducted four focus groups and 16 interviews (November 2019-January 2020) with 17 adults with type 2 diabetes and seven specialist clinicians from a diabetes outpatient clinic in Brisbane, Australia and seven primary care professionals from different clinics in Brisbane. Data were analysed using reflexive thematic analysis, building on the Capability, Opportunity, Motivation and Behaviour model. Results: People with diabetes expressed the wish to be equipped, supported and recognised for their efforts in a holistic way, receive personalised care at the right time and improved access to connected services. Healthcare professionals agreed and expressed their own burden regarding their challenging work. Overall, both groups desired holistic, personalised, supportive, proactive, and coordinated care pathways. Conclusions: We conclude that there is an alignment of the perceived needs and wishes for improved diabetes care among key stakeholders, however important gaps remain in the healthcare system.
... Young people's expectations of technology often diverge from those of their caregivers, and priorities are set differently (eg, independence versus reduced fear of hypoglycemia and improved sleep). Moreover, stigmatization [56] and judgement [57] by family members or peers can affect relationships and overall diabetes management. Thus, the nature of relationships between young people with T1DM and their caregivers, peers, and health professionals needs to be accounted for in the design of these technologies, particularly the relationship between youth with T1DM and their parents, which is characterized by a fine balance between autonomy and dependence (interdependence, also termed as transactional) [58]. ...
Article
Full-text available
Background In the last decade, diabetes management has begun to transition to technology-based care, with young people being the focus of many technological advances. Yet, detailed insights into the experiences of young people and their caregivers of using technology to manage type 1 diabetes mellitus are lacking. Objective The objective of our study was to describe the breadth of experiences and perspectives on diabetes technology use among children and adolescents with type 1 diabetes mellitus and their caregivers. Methods This systematic literature review used integrated thematic analysis to guide a narrative synthesis of the included studies. We analyzed the perspectives and experiences of young people with type 1 diabetes mellitus and their caregivers reported in qualitative studies, quantitative descriptive studies, and studies with a mixed methods design. Results Seventeen articles met the inclusion criteria, and they included studies on insulin pump, glucose sensors, and remote monitoring systems. The following eight themes were derived from the analysis: (1) expectations of the technology prior to use, (2) perceived impact on sleep and overnight experiences, (3) experiences with alarms, (4) impact on independence and relationships, (5) perceived usage impact on blood glucose control, (6) device design and features, (7) financial cost, and (8) user satisfaction. While many advantages of using diabetes technology were reported, several challenges for its use were also reported, such as cost, the size and visibility of devices, and the intrusiveness of alarms, which drew attention to the fact that the user had type 1 diabetes mellitus. Continued use of diabetes technology was underpinned by its benefits outweighing its challenges, especially among younger people. Conclusions Diabetes technologies have improved the quality of life of many young people with type 1 diabetes mellitus and their caregivers. Future design needs to consider the impact of these technologies on relationships between young people and their caregivers, and the impact of device features and characteristics such as size, ease of use, and cost.
... Although strengthening patient perspectives in diabetes care has been a topic of research interest for many years [6][7][8]16,36], research continues to show a gap between recommendations and patient experiences. Adults with diabetes still describe a lack of person-centered care and a desire for HCPs to understand more about their situation and needs and which actions and approaches of HCPs are most helpful [37]. More structured strategies for incorporating patients' perspectives and encouraging active patient participation in clinical visits are warranted [38]. ...
Article
Background The Diabetes Questionnaire is a digital patient-reported outcome and experience measure for adults living with diabetes. The Diabetes Questionnaire is intended for use in routine clinical visits in diabetes care and to enable patient perspectives to be integrated into the Swedish National Diabetes Register. The Diabetes Questionnaire was developed on the basis of patients’ perspectives, and evidence for its measurement qualities has been demonstrated. Patients receive an invitation to complete the questionnaire before clinical visits, and the patient and health care professional (HCP) can discuss the findings, which are instantly displayed during the visit. Implementation processes for new tools in routine care need to be studied to understand the influence of contextual factors, the support needed, and how patients and HCPs experience clinical use. Objective The aim of this study was to describe patients’ and HCPs’ experiences of initiating the use of the digital Diabetes Questionnaire as a clinical tool in routine diabetes care, supported by a structured implementation strategy involving initial education, local facilitators, and regular follow-ups. Methods In this qualitative study, semistructured focus group discussions were conducted 12 months after the use of the Diabetes Questionnaire was initiated. Participants were diabetes specialist nurses and physicians (20 participants in 4 groups) at hospital-based outpatient clinics or primary health care clinics and adults with type 1 or type 2 diabetes (15 participants in 4 groups). The audiotaped transcripts were analyzed using inductive qualitative content analysis. Results The results revealed 2 main categories that integrated patients’ and HCPs’ experiences, which together formed an overarching theme: While implementation demands new approaches, the Diabetes Questionnaire provides a broader perspective. The first main category (The Diabetes Questionnaire supports person-centered clinical visits) comprised comments expressing that the digital Diabetes Questionnaire can initiate and encourage reflection in preparation for clinical visits, bring important topics to light during clinical visits, and broaden the scope of discussion by providing additional information. The second main category (The process of initiating the implementation of the Diabetes Questionnaire) comprised comments that described differences in engagement among HCPs and their managers, challenges of establishing new routines, experiences of support during implementation, thoughts about the Diabetes Questionnaire, need to change local administrative routines, and opportunities and concerns for continued use. Conclusions The Diabetes Questionnaire can broaden the scope of health data in routine diabetes care. While implementation demands new approaches, patients and HCPs saw potential positive impacts of using the questionnaire at both the individual and group levels. Our results can inform further development of implementation strategies to support the clinical use of the questionnaire.
... Även detta kan upplevas som skamfyllt i mötet med behandlaren. Det finns också studier som visar att patienter med diabetes inte alltid känner sig förstådda av till exempel läkare, diabetessköterskor eller dietister och att kostråden därför blir svåra att följa [119]. En risk är att kostråden av patienten uppfattas som moraliserande och att de ges med målet att patienten ska bli en "bättre människa" snarare än med målet att förändra matvanor till att bli en del av behandlingen [117]. ...
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This report is a sytematic review on diets, foods and methods for treatment of type 1 diabetes, type 2 diabetes and gestational diabetes.
... 10 37 38 Studies have also shown that adults with diabetes value interactions with HCPs that consider their mental well-being 39 and acknowledge the complex multifaceted challenges of living with diabetes. 40 In addition, the value of getting emotional support through peer support has also been highlighted in existent literature. 41 42 Other studies have identified the difficulties and challenges faced by HCPs in providing emotionally therapeutic care, identifying the need to increase the awareness, skills and opportunities of HCPs for delivering such care. ...
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Adults newly diagnosed with type 1 diabetes (T1D) can experience significant psychosocial disruption, leading to maladaptive emotional and behavioral responses which may increase the risk of future complications. The aim of the study was to co-design an intervention with people with diabetes (PWD) and healthcare-professionals (HCPs) to address the psychosocial disruption associated with new onset T1D in adults. We used a co-design approach to stimulate the target populations to reflect on their experiences and generate ideas for the intervention. This involved the use of illustrations depicting common experiences of the time of diagnosis identified in a previous study among PWD and HCPs. Illustrations were used as conversation tools in six parallel workshops exclusively for PWD (n=24) and HCPs (n=55); and four workshops that brought PWD (n=31) and HCPs (n=19) together to prioritize intervention components. Data comprising of transcribed audio recordings and notes from participants were analyzed thematically with a view to intervention development. The workshops identified that the intervention should be phasic, with an initial focus on the psychosocial disruption of diagnosis, followed by the early experience of diabetes and how to adapt positively to a life with it. Participants constructed two integrated intervention components: 1) one-to-one sessions soon after diagnosis, with a HCP trained in using a psychologically modelled conversation tool addressing PWD’s experiences, thoughts and feelings about the diagnosis; and 2) a group-based intervention addressing common diabetes challenges, emotional issues and thinking traps, focusing on normalizing emotions and developing strategies for managing diabetes in day-to-day life. The co-design process revealed the benefit of adopting a bio-psycho-social perspective and introducing methods of support involving both HCPs and peers to activate positive adaptive strategies in adults with new onset T1D. Disclosure M. Due-Christensen: Research Support; Self; Novo Nordisk Foundation. Stock/Shareholder; Self; Novo Nordisk A/S. L.E. Joensen: None. S. Sarre: None. J.L. Wad: None. E. Romanczuk: None. R. Forde: None. I. Willaing: None. A. Forbes: None. Funding National Institute for Health Research (PB-PG-0317-20012); Novo Nordisk Foundation (NNF17OC0028274)
... In the study of 40 Chinese-Canadian adults with type 2 diabetes, the qualitative findings from semi-structured interviews captured aspects of diabetes distress that contradicted some of the quantitative findings, highlighting how both methodologies contribute unique value [8]. Next up is a paper from the Australian MILES2 study describing how some people with diabetes wished that their healthcare professionals understood more about the challenges of diabetes self-management [9]. ...
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Less than six months ago, no‐one had heard of COVID‐19 and few people knew what a coronavirus was, yet today it is on everyone's lips. On 11 March 2020, the WHO declared the outbreak a global pandemic, and the disease has spread to multiple countries across the globe. COVID‐19 is characterized by a fever, dry cough, fatigue and shortness of breath, and for the majority the symptoms will be minor; however, for a few, the illness can progress to pneumonia and multi‐organ failure. While data are emerging, it seems that the mortality rate is of the order of 1–2% [1]. So, what does the epidemic mean for people with diabetes?
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Diabetes mellitus is characterised by hyperglycaemia, requiring strict management regimens to avoid associated health complications. Diagnosis and/or management of diabetes during young adulthood can be particularly challenging, potentially contributing to significant psychological distress and struggles with management, culminating in poor physical and mental health outcomes. This service evaluation sought feedback from young adult patients (19–25 years old) on diabetes service accessibility and to understand the impact of offering virtual appointments during the COVID‐19 pandemic. All young adult patients (n=101) were invited to complete an online questionnaire about their experience of service accessibility and offered the opportunity to discuss their feedback in a telephone interview. Data were collected from 15 patients. Analysis using content and thematic analyses revealed three main themes regarding service accessibility: practical barriers, psychological barriers, and patients’ relationship with the diabetes team. Recommendations are made for several service developments concerning appointment scheduling, appointment set‐up, and developments around service provision more widely. Further research is needed to gain a wider range of feedback to inform future developments and should prioritise patient involvement to increase patient response rate. Copyright
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OBJECTIVE: To develop supportive interventions for adults with new-onset type 1 diabetes (T1D) to facilitate positive adaptive strategies during their transition into a life with diabetes. DESIGN: The study used a co-design approach informed by Design Thinking to stimulate participants’ reflections on their experiences of current care and generate ideas for new supportive interventions. Visual illustrations were used to depict support needs and challenges. Initial discussions of these needs and challenges were facilitated by researchers and people with diabetes in workshops. Data comprising transcribed audio recordings of the workshop discussions and materials generated during the workshops was analyzed thematically. SETTINGS: Specialized diabetes centers in Denmark and the United Kingdom. PARTICIPANTS: Adults with new-onset T1D (n=24) and health care professionals (HCPs) (n=56) participated in six 16 parallel workshops followed by four sequential workshops with adults (n=29) and HCPs (n=24) together. RESULTS: The common solution prioritised by both adults with new-onset T1D and HCP participants was the development of an integrated model of care addressing the psychological and social elements of the diagnosis, alongside information on diabetes self-management. Participants also indicated a need to develop the organisation, provision, and content of care, along with the skills HCPs need to optimally deliver that care. The co-designed intervention included three visual conversation tools that could be used flexibly in the care of adults with new-onset T1D to support physical, psychological, and social adaptation to T1D. CONCLUSION: This co-design study has identified the care priorities for adults who develop T1D, along with some practical conversational tools that may help guide HCPs in attending to the disruptive experience of the diagnosis and support adults in adjusting into a life with diabetes.
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Introduction Achieving glycemic targets and optimizing quality of life (QoL) are important goals of type 1 diabetes care. Hypoglycemia is a common barrier to achieving targets and can be associated with significant distress. However, the impact of hypoglycemia on QoL is not fully understood. The aim of this study was to explore how adults with type 1 diabetes are impacted by hypoglycemia in areas of life that are important to their overall QoL. Research design and methods Participants responded to a web-based qualitative survey involving a novel ‘Wheel of Life’ activity. Responses were analyzed using reflexive thematic analysis. Results The final sample included 219 adults with type 1 diabetes from Denmark, Germany, the Netherlands, and the UK. They had a mean±SD age of 39±13 years and diabetes duration of 20±14 years. Participants identified eight areas of life important to their overall QoL, including relationships and social life, work and studies, leisure and physical activity, everyday life, sleep, sex life, physical health, and mental health. Participants reported emotional, behavioral, cognitive, and social impacts of hypoglycemia within domains. Across domains, participants described interruptions, limited participation in activities, exhaustion, fear of hypoglycemia, compensatory strategies to prevent hypoglycemia, and reduced spontaneity. Conclusions The findings emphasize the profound impact of hypoglycemia on QoL and diabetes self-care behaviors. Diabetes services should be aware of and address the burden of hypoglycemia to provide person-centered care. Clinicians could ask individuals how hypoglycemia affects important areas of their lives to better understand the personal impact and develop tailored management plans.
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To pilot test the proposed DiaPROM trial components and address uncertainties associated with conducting a full-scale randomised controlled trial (RCT) to evaluate whether such a trial is feasible. Two-arm pilot RCT. Adults aged ≥18–39 years, with minimum 1 year type 1 diabetes duration, attending outpatient follow-up. Exclusion criteria were pregnancy, severe cognitive, somatic or psychiatric conditions and impaired vision. All participants completed electronic Patient-Reported Outcome Measures (PROMs) prior to the annual diabetes consultation. Using computer-generated block-randomisation without blinding, we assigned participants in a 1:1 ratio stratified by sex to receive standard care or an intervention. Physicians reviewed diabetes distress scores (Problem Areas In Diabetes scale) and referred individuals with scores ≥30 or single item(s) ≥3 to minimum two diabetes nurse consultations where reported problems were reviewed and discussed. Recruitment and retention rates; participants perceptions about intervention components. Variance and estimated between-group differences in follow-up scores (Diabetes Distress Scale(DDS),WHO 5-Well-being Index,Perceived Competence for Diabetes Scaleandglycaemic control) and DDS correlation with baseline scores, to assist sample size calculations. We randomised 80 participants to the control or intervention arm (one participant was later excluded). 23/39 intervention arm participants qualified for additional consultations and 17 attended. 67/79 attended the 12-month follow-up (15.2% attrition); 5/17 referred to additional consultations were lost to follow-up (29.4% attrition). Participants reported PROMs as relevant (84.6%) and acceptable (97.4%) but rated the usefulness of consultations as moderate to low. Baseline mean±SD DDS score was 2.1±0.69; DDS SD was 0.71 (95% CI: 0.60 to 0.86) at follow-up; correlation between baseline and follow-up DDS scores was 0.8 (95% CI: 0.7 to 0.9). The pilot trial revealed need for intervention modifications ahead of a full-scale trial to evaluate use of PROMs in diabetes consultations. Specifically, participant acceptability and intervention implementation need further investigation. © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
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Aim: To explore nurses’ and physicians’ experiences with diabetes consultations in general and the use of dialogue tools in the Diabetes Patient‐Related Outcome Measures (DiaPROM) pilot trial. Methods: We used a qualitative explorative design by conducting semi‐structured in‐depth interviews with five nurses and nine physicians engaged in the DiaPROM pilot trial. The pilot trial aimed to test an intervention utilizing the patient‐reported Problem Areas In Diabetes (PAID) scale and person‐centred communication skills as dialogue tools in clinical consultations with adults with type 1 diabetes. We used thematic analysis to analyse the data. Results: We generated three themes (each including two subthemes) from the analysis of participants’ experiences: (1) ‘Conflicting demands and priorities’ (subthemes: ‘Balancing guideline recommendations with patients’ main concerns’ and ‘Experiencing that patients need more support to disclose their emotional concerns’); (2) ‘Insights about using dialogue tools’ (subthemes: ‘The benefits and challenges of using the PAID as a dialogue tool’ and ‘Communication techniques are helpful’); and (3) ‘Facilitating new interventions is challenging’ (subthemes: ‘Unclear roles and responsibilities in the multidisciplinary teamwork’ and ‘The capacity sets the limit, not the willingness’). Conclusions: Our findings indicate that the physicians and nurses experienced substantial challenges related to time and resources in the use of dialogue tools to support people’s emotional concerns in clinical diabetes consultations. Thus, there is a need for healthcare organizations to adjust priorities to focus on the emotional burden of diabetes if the multidisciplinary diabetes teams are to successfully integrate psychosocial support into routine diabetes care.
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Aims To explore the relationship between diabetes distress, glucose control and awareness of hypoglycaemia in adults with type 1 diabetes. Methods We performed a cross‐sectional study using data collected from 280 consecutive type 1 diabetes patients who used a routine clinic consultation tool that recorded HbA1c, hypoglycaemia awareness (measured using the Gold score) and diabetes distress (measured using the Diabetes Distress Scale 2 [DDS2]). We assessed correlations between DDS2 and HbA1c and DDS2 and Gold score and performed an ordinal regression analysis to identify factors contributing to distress. Results Diabetes distress was significantly correlated with HbA1c (r = .319, P < .001) and Gold score (r = .258, P < .001) independently and with synergistic effect. Female gender was also associated with diabetes distress, while age, BMI, duration of diabetes, severity of complications and use of CSII pumps were not. Occurrence of severe hypoglycaemia (SH) episodes increased with Gold score in a linear manner throughout the scale. Conclusions This study has identified new evidence of a significant, independent relationship between diabetes distress measured by the DDS2 and reduced awareness of hypoglycaemia in people with type 1 diabetes. It also demonstrates that diabetes distress is significantly associated with HbA1c and female gender independently. The DDS2 identifies distress associated with both hypo‐ and hyperglycaemia and can be a useful creening tool. Additionally, the occurrence of SH increases with increasing Gold score.
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Purpose More research into the psychosocial aspects of diabetes is needed so that the health and quality of life of people with the condition can be improved. To fill this gap, we conducted the second Diabetes MILES—Australia study (MILES-2), a survey focused on psychological, behavioural and social aspects of diabetes. The aim of the MILES-2 study was to provide a (1) longitudinal follow-up of the original MILES 2011 study cohort; (2) cross-sectional assessment of a new cohort. Participants Eligible participants were English-speaking Australians with type 1 or type 2 diabetes, aged 18–75 years. Longitudinal cohort participants were mailed/emailed study invitations directly by researchers. Random sampling (stratified by diabetes type, insulin use, state) of the National Diabetes Services Scheme (NDSS) database and nationwide advertisements were used to recruit new cohort participants. The final sample included N=2342 eligible respondents (longitudinal cohort: n=504; 2015 new cohort: n=1838); 54% had type 2 diabetes. Findings to date Survey respondents were from an advantaged socioeconomic background compared to the general population. Respondents with type 1 diabetes were over-represented in the new cohort (45%) relative to the planned stratification (40% type 1 diabetes, 60% type 2 diabetes). Respondents with insulin-treated type 2 diabetes were under-represented in the new cohort relative to the stratified sampling (42% invited vs 50% response). Participants who completed both the 2011 and 2015 surveys were more likely than those completing the 2011 survey only to have type 1 diabetes, report a higher education and annual income, and live in metropolitan areas. Participant feedback indicated that the survey was perceived as relevant and valuable. Future plans The depth and breadth of the data available in this large sample will highlight unmet needs and priority areas for future investigation and, crucially, will inform policy, programme and intervention development and evaluation in Australia.
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Policy, research and clinical practice need a paradigm shift, focused on human behaviour and psychology.
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Editor's note: This article is adapted from the address of the American Diabetes Association (ADA) President, Health Care and Education, given in June 2015 at the Association's 75th Scientific Sessions in Boston, Mass. A webcast of this speech is available for viewing at the ADA website (http://professional.diabetes.org/webcasts).
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The aim of this study was to describe the perspectives of diabetes care professionals regarding the roles and responsibilities of people with diabetes (PWD), health care professionals (HCPs), and the larger society to improve the provision of person-centered diabetes care. The survey contained open-ended items about challenges of, successes of, and wishes for improvements in treating adults with diabetes. All responses were systematically coded using a schema developed and validated through multinational collaboration. Participants were 4785 diabetes care professionals (physicians, nurses, and dietitians) from 17 countries. The data contained 2 distinct themes. One theme reflected the fact that the roles and responsibilities of HCPs are transitioning from those of one who "tells" to one who "listens" to PWD. Some ways that HCPs can "listen" to PWD and family members is to involve them in goals and to encourage self-management for the improvement of treatment. The second theme identified barriers to successful diabetes care, which include a lack of time and collaboration from HCPs, a lack of availability of resources for treatment, and a lack of psychosocial support. The views of diabetes care professionals are in transition from a conventional hierarchic approach to a PCC approach. Further adoption of this approach would be facilitated by additional psychosocial training and educational/psychological resources, increased teamwork, and societal changes that would make it easier for people to live successfully with diabetes. Copyright © 2015 The Authors. Published by Elsevier Inc. All rights reserved.
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Objective: To identify the psychosocial experiences of diabetes, including negative accounts of diabetes and adaptive ways of coping from the perspective of the person with diabetes. Research design and methods: Participants were 8,596 adults (1,368 with type 1 diabetes and 7,228 with type 2 diabetes) in the second Diabetes Attitudes, Wishes and Needs (DAWN2) study. Qualitative data were responses to open-ended survey questions about successes, challenges, and wishes for improvement in living with diabetes and about impactful experiences. Emergent coding developed with multinational collaborators identified thematic content about psychosocial aspects. The κ measure of interrater reliability was 0.72. Results: Analysis identified two negative psychosocial themes: 1) anxiety/fear, worry about hypoglycemia and complications of diabetes, depression, and negative moods/hopelessness and 2) discrimination at work and public misunderstanding about diabetes. Two psychosocial themes demonstrated adaptive ways of coping with diabetes: 1) having a positive outlook and sense of resilience in the midst of having diabetes and 2) receiving psychosocial support through caring and compassionate family, friends, health care professionals, and other people with diabetes. Conclusions: The personal accounts give insight into the psychosocial experiences and coping strategies of people with diabetes and can inform efforts to meet those needs and capitalize on strengths.
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To explore the impact of patient education on the lives of people with diabetes, including the effect on interactions with doctors and other healthcare professionals. Qualitative user-led study using longitudinal interviews and 146 h of participant observation. Data were analysed using a narrative approach. 21 patients with type 1 diabetes, those either about to attend a patient education course or those who had completed the course in the previous 10 years. Established patient education centres in three UK teaching hospitals teaching the Dose Adjustment for Normal Eating (DAFNE) course. Both postcourse and several years later, most participants spoke of the experience of taking part in education as life-changingly positive. It helped them understand how to gain control over a very complex disease and freed them from dependence on medical advice and restrictive regimes. However, interactions within the health system following patient education could be fraught. Participants emerged from the course with greater condition-specific knowledge than many of the healthcare professionals they encountered. When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients' ability to continue effective self-management. Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field. Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully. There is a role for those involved in primary and hospital care, including those supporting and training healthcare professionals, to recognise these problems and find ways to acknowledge and respect chronic patients' biomedical and practical expertise.
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Thematic analysis is a poorly demarcated, rarely acknowledged, yet widely used qualitative analytic method within psychology. In this paper, we argue that it offers an accessible and theoretically flexible approach to analysing qualitative data. We outline what thematic analysis is, locating it in relation to other qualitative analytic methods that search for themes or patterns, and in relation to different epistemological and ontological positions. We then provide clear guidelines to those wanting to start thematic analysis, or conduct it in a more deliberate and rigorous way, and consider potential pitfalls in conducting thematic analysis. Finally, we outline the disadvantages and advantages of thematic analysis. We conclude by advocating thematic analysis as a useful and flexible method for qualitative research in and beyond psychology.
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Background The chronic care model (CCM) has been widely used in a variety of health care settings to guide system improvement for chronic illness care, including diabetes care. However, the evidence base for the specific components of the model has not been systematically reviewed. This review aimed at examining the extent to which interventions featuring the CCM components improve diabetes care and determining the relative effectiveness of different CCM components. Methods We systematically searched MEDLINE (1966 to December 2004), the Cochrane Effective Practice and Organisation of Care and the Cochrane Controlled Trials Register to identify interventions featuring one or more system components of the CCM for diabetes care. Outcome measures included HbA1c, blood pressure and blood lipid control. We used random-effects meta-analysis and meta-regression for quantitative synthesis of data. Results In all, 69 studies (43 randomized controlled trials and 26 controlled before–after studies) met inclusion criteria and were included in this review. Overall, included studies reported a mean reduction of 0.46% (95% CI 0.38, 0.54) in HbA1c, mean reduction of 2.2 (95% CI 0.9, 3.5) mmHg in systolic blood pressure, mean reduction of 1.3 (95% CI 0.6, 2.1) mmHg in diastolic blood pressure and mean reduction of 0.24 (95% CI 0.06, 0.41) mmol/L in total cholesterol. For specific CCM components, interventions that addressed delivery system design reported the largest improvements in patient outcomes, followed by those employing a self-management support component. Interventions involving decision support or clinical information systems reported relatively smaller effect sizes. Conclusions Interventions featuring CCM components for diabetes care produced small-to-moderate improvements in a range of patient intermediate outcomes. The findings support the concept of the CCM in which the state of development of various aspects of primary care service systems defined in this model appear to be important factors in the quality of care provided to people with diabetes.
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The aim of this paper is to report the findings of a study that elucidated the experiences and reflections of people with type 2 diabetes about clinical encounters. Several patient satisfaction surveys have focused on privacy, cheerfulness and amenities rather than on how the care was delivered. A great deal of research has also focused on communication and various consultation styles, particularly within health promotion and diabetes care, but how these factors tie up with patient satisfaction has rarely been discussed. This study was performed in order to elucidate patients' perspectives about clinical encounters in diabetes care. Interviews were carried out during 2001 with 44 patients with diabetes. The transcribed interviews were analysed using qualitative content analysis. Five themes were connected to patient satisfaction and dissatisfaction, namely 'being in agreement vs. in disagreement about the goals'; 'autonomy and equality vs. feeling forced into adaptation and submission'; 'feeling worthy as a person vs. feeling worthless'; 'being attended to and feeling welcome vs. ignored'; and, lastly, 'feeling safe and confident vs. feeling unsafe and lacking confidence'. Despite efforts to individualize diabetes care and find ways to communicate with patients, many people have experiences of clinical encounters that they find dissatisfying. Experiences of dissatisfying encounters have elements that may threaten their perception of self and identity, while elements included in satisfying encounters are those characterizing patient-centred care.
Article
In a special issue of this Journal in 1994, a Working Group of the WHO IDF St Vincent’s Declaration Action Programme for Diabetes published a seminal guideline [1] that made seven recommendations for encouraging psychological well‐being among people living with diabetes (Table 1). Our key observation is that the guideline has stood the test of time, and is as commendable today as it was 25 years ago. Most, if not all, contemporary clinical diabetes guidelines include a focus on psychological care (Table 2). However, whereas the 1994 guideline focused on encouraging and monitoring ‘psychological well‐being’, today’s guidelines focus on psychological problems. The key exception is the International Diabetes Federation (IDF) publication Global Guideline for Type 2 Diabetes [2]. Perhaps, it is the nature of resource‐limited health systems to take a problem‐focused approach.
Article
Aims To identify challenges and solutions to integrating psychosocial support into routine diabetes care from the perspective of stakeholders with an expertise in diabetes self‐management education and support. Methods Ninety‐four people attended the annual international Diabetes Self‐management Alliance meeting in 2016, including plenary sessions and workshops around self‐management education, support and prevention. One workshop focused on how to integrate psychosocial support into routine diabetes care, which was run four times consecutively allowing all conference participants to attend the workshops in groups of 20‐25 people. Results Challenges and solutions to integrating psychosocial support into routine diabetes care concern the patient‐provider relationship, the health care system and the community. Challenges identified were lack of time, skills and resources to deal with psychological well‐being; a culture of patient blame and care expectations; the complexity of person‐centered assessment of psychological issues; and the substantial health care system focus on productivity and biomedical indicators. Lack of involvement of local communities and of inclusion of social determinants of health were also highlighted as challenging. Solutions identified were more patient‐provider dialogue; more training and better skills among care providers; system incentives for psychosocial outcomes; and targeting social determinants of health and involvement of family and peers. Conclusions From the perspective of international stakeholders with an expertise in diabetes self‐management and support attending the conference in Denmark, substantial new incentives and systematic cultural changes are needed in health care systems to integrate psychosocial support in routine diabetes care as recommended in international guidelines. This article is protected by copyright. All rights reserved.
Article
Objective To review studies examining the experience of self-management support in patient–provider interactions and the shaping of goals through interactions. Methods We undertook a systematic review and thematic synthesis of the qualitative literature. We searched six databases (2004–2015) for published studies on the provision of self-management support in one-to-one, face-to-face, patient–provider interactions for obesity, type 2 diabetes mellitus and chronic obstructive pulmonary disease, with 14 articles meeting inclusion criteria. Results Themes identified from studies were (1) dominance of a traditional model of care, encompassing the provision of generic information, exclusion of the psychosocial and temporal nature of interactions and (2) a context of individual responsibility and accountability, encompassing self-management as patients’ responsibility and adherence, accountability and the attribution of blame. Interactions were constrained by consultation times, patient self-blame and guilt, desire for autonomy and beliefs about what constitutes ‘effective’ self-management. Discussion Encounters were oriented towards a traditional model of care delivery and this limited opportunity for collaboration. These findings suggest that healthcare professionals remain in a position of authority, limiting opportunities for control to be shared with patients and shared understandings of social context to be developed.
Article
Jones and colleagues recently made a plea for the prioritization of psychological well-being in diabetes care [1]. Such calls to action began over 20 years ago with the 'St Vincent Declaration' guidelines [2]. A 'plea' two decades later emphasizes that this paradigm shift is a long, slow burn. In the 21st century, people with diabetes are now adding their powerful voices via social media, advocating for better psychological support, as active consumers (and constructive critics) of health care [3]. We can learn considerably from organizations such as Cancer Voices (www.cancervoicesaustralia.org) - they demonstrate how consumer representation and involvement in research agendas, policy and service provision play an integral part in shaping holistic health care. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
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Diabetes patients with limited resources often experience suboptimal care. Less is known about the role of effective health communication (HC) in caring for low income diabetes patients. Ten health department clinics in TN participated in a trial evaluating a literacy-sensitive communication intervention. We assessed the quality of baseline HC and measured associations with diabetes outcomes. Assessments included: demographics, measures of HC, health literacy, self-care behaviors, self-efficacy, medication non-adherence, treatment satisfaction, and A1C. Unadjusted and adjusted multivariable regression models were used to test associations. Participants (N=411) were 49.7±9.5 years, 61% female, uninsured (96%), with A1C 9.6±2.1. In unadjusted analyses, better communication, was associated with lower medication non-adherence (OR 0.40-0.68, all p<0.05), higher treatment satisfaction (OR 1.76-1.96, all p<0.01), portion size reduction (OR 1.43, p<0.05), diabetes self-efficacy (OR 1.41, p<0.05), and lower A1C (β=-0.06, p<0.01). In adjusted analyses, communication quality remained associated with lower medication non-adherence (AOR 0.39-0.68, all p<0.05), and higher treatment satisfaction (AOR 1.90-2.21, all p<0.001). Better communication between low-income patients and providers was independently associated with lower medication non-adherence and higher treatment satisfaction. Communication quality may be an important modifiable approach to improving diabetes care for vulnerable populations. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.
Article
AimsThe second Diabetes Attitudes, Wishes and Needs (DAWN2) study aimed to assess psychosocial outcomes in people with diabetes across countries for benchmarking. Methods Surveys included new and adapted questions from validated questionnaires that assess health-related quality of life, self-management, attitudes/beliefs, social support and priorities for improving diabetes care. Questionnaires were conducted online, by telephone or in person. ResultsParticipants were 8596 adults with diabetes across 17 countries. There were significant between-country differences for all benchmarking indicators; no one country's outcomes were consistently better or worse than others. The proportion with likely depression [WHO-5 Well-Being Index (WHO-5) score ≤ 28] was 13.8% (country range 6.5–24.1%). Diabetes-related distress [Problem Areas in Diabetes Scale 5 (PAID-5) score ≥ 40] was reported by 44.6% of participants (17.2–67.6%). Overall quality of life was rated ‘poor’ or ‘very poor’ by 12.2% of participants (7.6–26.1%). Diabetes had a negative impact on all aspects investigated, ranging from 20.5% on relationship with family/friends to 62.2% on physical health. Approximately 40% of participants (18.6–64.9%) reported that their medication interfered with their ability to live a normal life. The availability of person-centred chronic illness care and support for active involvement was rated as low. Following self-care advice for medication and diet was most common, and least common for glucose monitoring and foot examination, with marked country variation. Only 48.8% of respondents had participated in diabetes educational programmes/activities to help manage their diabetes. Conclusions Cross-national benchmarking using psychometrically validated indicators can help identify areas for improvement and best practices to drive changes that improve outcomes for people with diabetes.
Article
Usual medical care often fails to meet the needs of chronically ill patients, even in managed, integrated delivery systems. The medical literature suggests strategies to improve outcomes in these patients. Effective interventions tend to fall into one of five areas: the use of evidence-based, planned care; reorganization of practice systems and provider roles; improved patient self-management support; increased access to expertise; and greater availability of clinical information. The challenge is to organize these components into an integrated system of chronic illness care. Whether this can be done most efficiently and effectively in primary care practice rather than requiring specialized systems of care remains unanswered.
Article
To identify the determinants of patient preferences for participation in medical decision making. Data were analyzed for 2,197 patients from the Medical Outcomes Study, a 4-year observational study of patients with chronic disease (hypertension, diabetes, myocardial infarction, congestive heart failure, and depression). Multivariate logistic regression models estimated the effects of patients' sociodemographic, clinical, psychosocial, and lifestyle characteristics on their decision-making preferences. A majority of the patients (69%) preferred to leave their medical decisions to their physicians. The odds for preferring an active role significantly decreased with age and increased with education. Women were more likely to be active than men (odds ratio [OR] = 1.44, P < 0.001). Compared with patients who only suffered with unsevere hypertension, those with severe diabetes (OR = 0.62, P = 0.04) and unsevere heart disease (OR = 0.45, P = 0.02) were less likely to prefer an active role. Patients with clinical depression were more likely to be active (OR = 1.64, P = 0.01). Patients pursuing active coping strategies had higher odds for an active role than "passive" copers, while those who placed higher value on their health were less likely to be active than those with low health value (OR = 0.59, P < 0.001). Although a majority of patients prefer to delegate decision making to physicians, preferences vary significantly by patient characteristics. Approaches to enhancing patient involvement will need to be flexible and accommodating to individual preferences in order to maximize the benefits of patient participation on health outcomes.
I Do My Best To Listen to Patients': Qualitative Insights Into DAWN2 (Diabetes Accepted Article This article is protected by copyright
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