Living with an adult who has diabetes: Qualitative insights from the second Diabetes Attitudes, Wishes and Needs (DAWN2) study.

AIMS: The second Diabetes Attitudes, Wishes and Needs (DAWN2) study identified the experiences of family members who support adults living with diabetes. METHODS: Participants were 2057 adult family members living with the person with diabetes from 17 countries. Qualitative data were responses to open-ended survey questions about how living with a person with diabetes has impacted family members and the ways they choose to be involved in the diabetes care for the person with whom they live. Emergent coding with input from multinational collaborators identified thematic content about psychosocial aspects. RESULTS: Family members wanted to do what was best for the person with diabetes and help in whatever way possible. Four themes branched from that principle: (1) family members worry about day-to-day struggles of the person with diabetes, such as hypoglycemia and employment stability; (2) diabetes negatively affects the person with diabetes-family member relationship, creating an emotional strain and shift in relationship; (3) family members have some support resources to deal with the burdens and lifestyle changes of diabetes, but would like more; and (4) the person with diabetes has provided inspiration to the family member, and helped the family member make positive life changes in eating healthier. CONCLUSIONS: These data provide insight into the ways that family members experience living with diabetes, including their challenges, motivations and intentions in supporting their person with diabetes. Family members speak eloquently and with emotion about their role in a family with diabetes.

What do pharmaceutical industry professionals in Europe believe about involving patients and the public in research and development of medicines? A qualitative interview study.

OBJECTIVES: To explore European-based pharmaceutical industry professionals' beliefs about patient and public involvement (PPI) in medicines research and development (R&D). SETTING: Pharmaceutical companies in the UK, Poland and Spain. PARTICIPANTS: 21 pharmaceutical industry professionals, four based in the UK, five with pan-European roles, four based in Spain and eight based in Poland. METHOD: Qualitative interview study (telephone and face-to-face, semistructured interviews). All interviews were audio taped, translated (where appropriate) and transcribed for analysis using the Framework approach. RESULTS: 21 pharmaceutical industry professionals participated. Key themes were: beliefs about (1) whether patients and the public should be involved in medicines R&D; (2) the barriers and facilitators to PPI in medicines R&D and (3) how the current relationships between the pharmaceutical industry, patient organisations and patients influence PPI in medicines R&D. CONCLUSIONS: Although interviewees appeared positive about PPI, many were uncertain about when, how and which patients to involve. Patients and the public's lack of knowledge and interest in medicines R&D, and the pharmaceutical industry's lack of knowledge, interest and receptivity to PPI were believed to be key challenges to increasing PPI. Interviewees also believed that relationships between the pharmaceutical industry, patient organisations, patients and the public needed to change to facilitate PPI in medicines R&D. Existing pharmaceutical industry codes of practice and negative media reporting of the pharmaceutical industry were also seen as negative influences on these relationships.

"I Do My Best To Listen to Patients": Qualitative Insights Into DAWN2 (Diabetes Psychosocial Care From the Perspective of Health Care Professionals in the Second Diabetes Attitudes, Wishes and Needs Study).

PURPOSE: 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. METHODS: 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. FINDINGS: 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. IMPLICATIONS: 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.

What the public knows and wants to know about medicines research and development: a survey of the general public in six European countries.

OBJECTIVES: To explore public knowledge of, and interest in, learning more about medicines R&D in six European countries. DESIGN: Online survey of 6931 members of the public across Europe. METHODS: The survey formed part of a public omnibus survey. A quota sampling approach was used with quotas set according to national census data on age, gender and government region. The survey explored the public's knowledge and awareness of medicines R&D, their interest in learning more and the perceived influences on this. RESULTS: The survey was completed by 6931 members of the public, over 75% of whom reported having no or less than good knowledge of medicines R&D. Males were more likely than females to report good knowledge (17% vs 15%), and knowledge appeared to decrease with age. Those who were currently or had previously been involved in medical research were almost five times more likely to report good knowledge of medicines R&D overall (43% vs 13%). Participants reported good knowledge of medicines safety and clinical trials but little knowledge of pharmacoeconomics. They were most interested in learning more about medicines safety and personalised and predictive medicine and least interested in pharmacoeconomics. Older people, women and respondents with current good knowledge of medicines R&D were most interested in learning more about medicines R&D. CONCLUSIONS: Experience of medical research appears to play a key role in increasing public awareness of and future interest in medicines R&D. Some groups may need to be specifically targeted to increase their awareness of medicines R&D, for example, women expressed great interest in learning more but reported less knowledge than men. It may be useful to explore further the views of those who are currently uninterested in learning more.

Personal accounts of the negative and adaptive psychosocial experiences of people with diabetes in the second Diabetes Attitudes, Wishes and Needs (DAWN2) study.

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.