The Lived Experience of Informal Caregivers of People Who Have Severe Mental Illness and Coexisting Long-Term Conditions: A Qualitative Study.

BACKGROUND: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. METHODS: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. RESULTS: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care. CONCLUSION: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. PATIENT OR PUBLIC CONTRIBUTION: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.

The lived experience of severe mental illness and long-term conditions: a qualitative exploration of service user, carer, and healthcare professional perspectives on self-managing co-existing mental and physical conditions.

BACKGROUND: People with severe mental illness (SMI), such as schizophrenia, have higher rates of physical long-term conditions (LTCs), poorer health outcomes, and shorter life expectancy compared with the general population. Previous research exploring SMI and diabetes highlights that people with SMI experience barriers to self-management, a key component of care in long-term conditions; however, this has not been investigated in the context of other LTCs. The aim of this study was to explore the lived experience of co-existing SMI and LTCs for service users, carers, and healthcare professionals. METHODS: A qualitative study with people with SMI and LTCs, their carers, and healthcare professionals, using semi-structured interviews, focused observations, and focus groups across the UK. Forty-one interviews and five focus groups were conducted between December 2018 and April 2019. Transcripts were coded by two authors and analysed thematically. RESULTS: Three themes were identified, 1) the precarious nature of living with SMI, 2) the circularity of life with SMI and LTCs, and 3) the constellation of support for self-management. People with co-existing SMI and LTCs often experience substantial difficulties with self-management of their health due to the competing demands of their psychiatric symptoms and treatment, social circumstances, and access to support. Multiple long-term conditions add to the burden of self-management. Social support, alongside person-centred professional care, is a key facilitator for managing health. An integrated approach to both mental and physical healthcare was suggested to meet service user and carer needs. CONCLUSION: The demands of living with SMI present a substantial barrier to self-management for multiple co-existing LTCs. It is important that people with SMI can access person-centred, tailored support for their LTCs that takes into consideration individual circumstances and priorities.

Diabetes management during cardiac surgery in the UK: A survey.

AIM: To determine current practice regarding the diabetes management of people undergoing cardiac surgery in the UK. METHODS: We conducted an online survey of UK cardiothoracic surgeons. All cardiothoracic surgeons listed in the Society of Cardiothoracic Surgery membership directory were invited to participate. The survey, compiled using SurveyMonkey software, comprised 15 closed and open-ended questions about the management of people with diabetes pre- and peri-operatively. RESULTS: Sixty-two cardiothoracic surgeons from all 33 UK cardiac centres completed the survey. Of these, 44% responded that they routinely measure HbA1c preoperatively for all patients, 19% had an HbA1c threshold above which they would not operate and 21% currently undertake a point-of-care HbA1c measurement during the cardiothoracic outpatient visit. A total of 74% of respondents reported that it was 'easy' or 'very easy' to obtain a diabetes team review; diabetes nurse specialists were the members of the diabetes team working most closely with cardiac surgeons. Up to a third of the surgeons did not provide physical activity recommendations prior to admission and over 80% did not have a different preoperative or surgical diabetes protocol. Inconsistency in the responses within centres suggests that differences in practice may depend on individual surgeons rather than local policy. CONCLUSIONS: The study demonstrates there is only limited peri-operative management of diabetes in people undergoing cardiac surgery in the UK. There is an opportunity for greater involvement of the diabetes specialist team both before and during admission for surgery to improve outcomes. (Trial registration: ISRCTN10170306).

Non-attendance at diabetes outpatient appointments: a systematic review.

BACKGROUND: Non-attendance at diabetes outpatient appointments is a sizeable problem worldwide and has been associated with suboptimal health outcomes. We aimed to describe the characteristics, health outcomes and reasons given for non-attendance at doctor- or nurse-led diabetes appointments, and interventions to improve attendance. METHODS: PubMed, EMBASE, CINAHL and PsychInfo were searched from database inception to February 2019. Included articles were peer-reviewed, published in English, related to adults or young people with type 1 or type 2 diabetes, and addressed one of the above aspects of non-attendance. Studies were excluded if reporting on other types of diabetes or reviewing attendance at structured education, retinal screening, paediatric, antenatal, podiatry or dietetic clinics. RESULTS: Thirty-four studies of varied designs were identified (15 observational, 1 randomized control trial, 9 qualitative, 5 surveys, 4 service improvements). The definition of non-attendance varied. Younger adults, smokers and those with financial pressures were less likely to attend. Non-attendance was associated with higher HbA1c ; other outcomes were varied but typically worse in non-attenders. Reasons for non-attendance in qualitative studies fell into three categories: balancing the costs and benefits of attendance, coping strategies, and the relationships between the person with diabetes and healthcare professionals. Interventions included appointment management strategies, service improvements, patient navigators and WebCam appointments. CONCLUSIONS: Non-attendance is only partially explained by logistical issues. Qualitative studies suggest complex psychosocial factors are involved. Interventions have progressed from simple appointment reminders in an attempt to address some of the psycho-social determinants, but more work is needed to improve attendance.

Diabetes in the UK: 2019.

AIM: Diabetes impairs the quality of life of people living with the condition and is a major public health concern. The aim of this paper is to create a state of the nation report of diabetes in the UK. METHODS: Diabetes UK collates information about diabetes from diverse sources. This paper synthesizes these data to create a national report. RESULTS: Some 7% of the UK population are now living with diabetes; approximately one million people have undiagnosed type 2 diabetes, 40 000 children have diabetes and more than 3000 children are diagnosed every year. Forty-nine per cent of people with type 1 diabetes were offered structured education, but only 7.6% attended; the corresponding figures for type 2 diabetes were 90% and 10.4%, respectively. Among people with diabetes, 28% reported having issues obtaining medication or equipment for self-management. Fifty-seven per cent of people with type 1 diabetes and 42% with type 2 diabetes do not receive all eight annual health checks. Around 40% of people with diabetes have diminished psychological well-being. One-third of people have a microvascular complication at the time of diagnosis of type 2 diabetes. Diabetes is responsible for 530 myocardial infarctions and 175 amputations every week. The National Health Service spends at least £10 billion a year on diabetes, equivalent to 10% of its budget; 80% is spent treating complications. One in six hospital inpatients has diabetes. CONCLUSION: Diabetes continues to place a significant burden on the individual with diabetes and wider UK society. This report will be updated annually to understand how diabetes is changing across the UK.

How 25 years of psychosocial research has contributed to a better understanding of the links between depression and diabetes.

This narrative review of the literature provides a summary and discussion of 25 years of research into the complex links between depression and diabetes. Systematic reviews have shown that depression occurs more frequently in people with type 1 or type 2 diabetes compared with people without diabetes. Currently, it remains unclear whether depression is also more common in people with impaired glucose metabolism or undiagnosed type 2 diabetes compared with people without diabetes. More prospective epidemiological research into the course of depression and an exploration of mechanisms in individuals with diabetes are needed. Depression in diabetes is associated with less optimal self-care behaviours, suboptimal glycaemic control, impaired quality of life, incident micro- and macrovascular diseases, and elevated mortality rates. Randomized controlled trails concluded that depression in diabetes can be treated with antidepressant medication, cognitive-behavioural therapy (individual, group-based or web-based), mindfulness-based cognitive therapy and stepped care. Although big strides forward have been made in the past 25 years, scientific evidence about depression in diabetes remains incomplete. Future studies should investigate mechanisms that link both conditions and test new diabetes-specific web- or app-based interventions for depression in diabetes. It is important to determine whether treatment or prevention of depression prevents future diabetes complications and lowers mortality rates.

Transforming mental well-being for people with diabetes: research recommendations from Diabetes UK's 2019 Diabetes and Mental Well-Being Workshop.

AIMS: To identify key gaps in the research evidence base that could help to improve the mental well-being of people with diabetes, and to provide recommendations to researchers and research funders on how best to address them. METHODS: A 2-day international research workshop was conducted, bringing together research experts in diabetes and in mental health, people living with diabetes and healthcare professionals. RESULTS: The following key areas needing increased financial investment in research were identified: understanding the mechanisms underlying depression; understanding the multifactorial impact of social stigma; improving the language used by healthcare professionals; supporting people who find it difficult to engage with their diabetes; supporting significant others; supporting people with diabetes and eating disorders; improving models of care by learning from best practice; the potential benefits of screening and managing diabetes distress in routine diabetes care pathways; primary prevention of mental health issues at the time of diagnosis of diabetes; establishing the effectiveness of diabetes therapies on mood and other mental health issues; and understanding the impact of current diabetes technologies on mental health. Research recommendations as to how to address each of these priority areas were also developed. CONCLUSIONS: This inaugural position statement outlines recommendations to address the urgent unmet need related to the mental well-being of people living with diabetes, and calls on the research community and funders to develop research programmes and strategies to reduce this need.

Emerging adulthood and Type 1 diabetes: insights from the DAWN2 Study.

AIMS: To compare clinical, psychological, education and social variables in emerging adults (aged 18-30 years) with Type 1 diabetes with their adult counterparts aged >30 years. METHODS: A single assessment multinational sample was surveyed as part of the larger second Diabetes Attitudes, Wishes and Needs (DAWN2) study. Participants completed a series of surveys incorporating demographic as well as clinical questions (comorbidities, hypoglycaemia) and validated self-report scales concerning psychosocial (health impact, quality of life, beliefs and attitudes, self-management behaviours, healthcare experience and family support) and diabetes education factors. RESULTS: Emerging adults differed from adults aged >30 years with regard to a number of psychosocial variables. Emerging adults reported better overall quality of life, social support and support from their healthcare team compared with adults aged >30 years of age; however, emerging adults experienced greater diabetes-specific distress and were less engaged in self-management. Diabetes education was related to a number of indicators, while experience of discrimination was harmful, but these impacts did not differ between emerging adults and adults aged >30 years. An analysis of geographical regions suggested that emerging adults in North America and Europe had better well-being than older adults, while the opposite was observed in Asia. CONCLUSIONS: Emerging adults, particularly those in the later phase (ages 25-30 years) are especially at risk in terms of diabetes-specific distress. There is a need for novel interventions to meet the needs of these vulnerable emerging adults more effectively.

Unique challenges of cystic fibrosis-related diabetes.

Individuals with cystic fibrosis and pancreatic insufficiency have a gradual decline in insulin secretion over time, which results in an increase in the prevalence of diabetes with age; up to 50% of adults with cystic fibrosis aged over 35 years have diabetes. Cystic fibrosis-related diabetes differs from Type 1 and Type 2 diabetes in several ways; there is a pattern of insulin deficiency with reduced and delayed insulin response to carbohydrates but a sparing of basal insulin that results in glucose abnormalities, which are frequently characterized by normal fasting glucose and postprandial hyperglycaemia. Insulin deficiency and hyperglycaemia, even at levels which do not reach the threshold for a diagnosis of diabetes, have an adverse impact on lung function and clinical status in people with cystic fibrosis. Although the risk of microvascular complications occurs as in other forms of diabetes, the main reason for treatment is to prevent deterioration in lung function and weight loss; treatment may therefore be required at an earlier stage than for other types of diabetes. Treatment is usually with insulin, but management needs to take into account all the other medical issues that arise in cystic fibrosis.

Language matters: a UK perspective.

AIM: To review the existing evidence regarding the use of language in clinical encounters. BACKGROUND: Awareness of the importance of language in clinical encounters is mostly lacking or located within broader discussions on communication. METHODS: A scoping study was conducted to review existing research that could increase our understanding of the role language plays as well as identify gaps in knowledge and inform the development of a position statement on language in diabetes care. RESULTS: Evidence shows that, although carefully chosen language can have a positive effect, there is a potential negative impact of language on people's experiences of diabetes care. The use of stigmatizing and discriminatory words during communication between healthcare practitioners and people with diabetes can lead to disengagement with health services as well as sub-optimal diabetes self-management. Clinical encounters can be compromised where language barriers exist or where there is limited understanding of cultural differences that may have an impact on diabetes self-management. What little empirical evidence there is shows that training can improve language and communication skills. CONCLUSION: This review raises a number of questions that are being addressed by the NHS England Language Matters Group, which has developed a set of recommendations to support the use of appropriate language in clinical encounters.

Language matters. Addressing the use of language in the care of people with diabetes: position statement of the English Advisory Group.

The language used by healthcare professionals can have a profound impact on how people living with diabetes, and those who care for them, experience their condition and feel about living with it day-to-day. At its best, good use of language, both verbal and written, can lower anxiety, build confidence, educate and help to improve self-care. Conversely, poor communication can be stigmatizing, hurtful and undermining of self-care and can have a detrimental effect on clinical outcomes. The language used in the care of those with diabetes has the power to reinforce negative stereotypes, but it also has the power to promote positive ones. The use of language is controversial and has many perspectives. The development of this position statement aimed to take account of these as well as the current evidence base. A working group, representing people with diabetes and key organizations with an interest in the care of people with diabetes, was established to review the use of language. The work of this group has culminated in this position statement for England. It follows the contribution of Australia and the USA to this important international debate. The group has set out practical examples of language that will encourage positive interactions with those living with diabetes and subsequently promote positive outcomes. These examples are based on a review of the evidence and are supported by a simple set of principles.

Diabetes and depression in Denmark 1996-2010: national data stratified by occupational status and annual income.

AIMS: To assess the socio-economic distribution of comorbid depression and diabetes among the Danish workforce using national registry data. METHODS: Using national registers, all eligible Danish adults aged 18-59 years on 1 January 1996 were followed until 31 December 2010. Diabetes status was obtained from the Danish National Diabetes Register and information on purchase of prescription antidepressants from the Register of Medicinal Product Statistics. Data were also obtained on people's occupational status and gross annual income. The people included in the study were stratified according to their highest occupational group during the study period. Annual incomes were adjusted to 2013 levels and, using the distribution of the study population's incomes, we stratified participants into income quintiles. RESULTS: A total of 3 434 420 individuals met the inclusion criteria at baseline, with 98 006 developing diabetes during follow-up. There were 603 498 new prescriptions of antidepressants during follow-up; 19 849 (20.3%) among people with diabetes and 583 649 (17.5%) among those without. People with diabetes in all income quintiles (risk ratio 1.65; 95% CI 1.62-1.67) and all occupational groups (risk ratio 1.70; 95% CI 1.68- 1.73) had a significantly elevated risk compared with the general population. Risk ratios were significantly higher among the lowest occupational groups and income quintiles. CONCLUSION: Our results provide robust data underlining the associations between diabetes, depression and socio-economic status. They highlight and encourage further focus on the issue of comorbid diabetes and depression, particularly among the most disadvantaged.

Development of an acceptable and feasible self-management group for children, young people and families living with Type 1 diabetes.

AIMS: This study developed an acceptable and feasible self-management intervention that addresses the self-identified needs of children and young people with Type 1 diabetes and their parents. METHODS: Phase 1 reviewed previous interventions and interviewed the clinical team, young people and families. Phase 2 ran three age-matched focus groups with 11 families of children aged 8-16 years. Feedback was used to modify the workshop. Phase 3 evaluated feasibility of delivery, as well as the effects on metabolic control, quality of life and fear of hypoglycaemia, measured at baseline and 1-3 months post intervention. RESULTS: Eighty-nine families were invited to take part. Twenty-two (25%) participated in seven pilot groups (median age of young people 10 years, 36% girls). The intervention comprised a developmentally appropriate workshop for young people and parents addressing: (1) blood glucose control, (2) the potential impact of long-term high HbA1c , (3) the effects of 'hypos' and 'hypers', (4) self-management techniques and (5) talking confidently to people about diabetes. Participants were enthusiastic and positive about the workshop and would recommend it to others. Young people liked sharing ideas and meeting others with diabetes, while parents enjoyed listening to their children talk about their diabetes knowledge. CONCLUSIONS: Families living with Type 1 diabetes participated in developing a self-management group intervention. Although we demonstrated acceptability and feasibility, the pilot study results do not support the development of a randomized control trial to evaluate the effectiveness in improving HbA1c .

Deficiencies in postgraduate training for healthcare professionals who provide diabetes education and support: results from the Diabetes Attitudes, Wishes and Needs (DAWN2) study.

AIMS: To consider the global provision of self-management diabetes education and training for healthcare professionals using data from the second Diabetes Attitudes, Wishes and Needs (DAWN2) study. METHODS: A total of 4785 healthcare professionals caring for people with diabetes were surveyed in 17 countries to assess diabetes healthcare provision, self-management support and training. RESULTS: Of the healthcare professionals surveyed, 33.5% received formal postgraduate training in self-management (19.3-51.4% across countries) and 62.9% received training for medical management of diabetes (47.6-70.6% variation). Training in psychological management was low (19.1%), ranging from 3.6 to 36.5%, while 20.4% (a range of 3.6-36.4% across countries) had received no postgraduate training. Overall, the greatest training need was in the management of psychological aspects of diabetes (59.5%). For some, training in a domain was positively associated with a perceived need for further training. Communication skills, for example, listening (76.9%) and encouraging questions (76.1%), were the skills most widely used. Discussion of emotional issues was limited; 31-60% of healthcare professionals across the different countries reported that this only occurred if initiated by patients. Approximately two-thirds of participants reported a need for major improvements in emotional/psychological support, but few had received training in this area, with consistent findings across professional affiliations. CONCLUSIONS: The present study shows that healthcare professionals report being insufficiently equipped to provide diabetes self-management education, including emotional and psychological aspects of diabetes, and many are not receiving postgraduate training in any part (including medical care) of the management of diabetes. It is paramount that those responsible for the continuing professional development of healthcare professionals address this skills gap.

Correlates of psychological outcomes in people with diabetes: results from the second Diabetes Attitudes, Wishes and Needs (DAWN2(™) ) study.

AIMS: To assess country- and individual-level correlates of psychological outcomes, and differences among countries in the associations of individual characteristics with psychological outcomes among adults with diabetes. METHODS: The second Diabetes Attitudes, Wishes and Needs (DAWN2(™) ) study assessed self-reported characteristics of people with diabetes in 17 countries, including 1368 adults with Type 1 diabetes and 7228 with Type 2 diabetes. In each country, a sample of 500 adults, stratified by diabetes type and treatment, completed a questionnaire incorporating the validated WHO-5 wellbeing index, the WHOQOL-BREF, and the five-item Problem Areas in Diabetes Scale, as well as the newly developed Diabetes Impact on Life Dimensions that assessed impact ranging from very positive to very negative, with no impact as the midpoint. Multilevel regression analyses identified significant (P < 0.05) independent correlates of psychological outcomes. RESULTS: There were significant variations in all outcomes across countries before adjustment for individual-level factors; adjustment reduced between-country disparities. Worse psychological outcomes were associated with more complications, incidence of hypoglycaemia, hypoglycaemic medication, perceived burden of diabetes, family conflict and experience of discrimination. Better psychological outcomes were associated with higher self-rated health, greater access to diabetes education and healthcare, and more psychosocial support from others. The associations of many factors with the outcomes were mediated by modifiable factors. The association of all factors with the outcomes varied across (interacted with) countries, highlighting the need for country-specific analyses. CONCLUSIONS: Improvements in modifiable risk factors (reductions in burden and increases in support) may lead to better psychological outcomes in adults with diabetes.

Correlates of psychological care strategies for people with diabetes in the second Diabetes Attitudes, Wishes and Needs (DAWN2(™) ) study.

AIMS: To assess the ways in which healthcare professionals address psychological problems of adults with diabetes in the second Diabetes Attitudes, Wishes and Needs (DAWN2(™) ) study. METHODS: Approximately 120 primary care physicians, 80 diabetes specialists and 80 nurses and dietitians providing diabetes care participated in each of 17 countries (N=4785). Multiple regression analyses were used to evaluate independent statistically significant associations of respondent attributes concerning psychological care strategies, including assessment of diabetes impact on the patient's life, assessment of depression, provision of psychological assessment and support, and coordination with mental health professionals. RESULTS: Psychological care strategies were positively associated with each other but differed by healthcare practice site and discipline; nurses and dietitians were less likely to assess depression than other healthcare professionals, while primary care physicians were less likely to coordinate with mental health specialists or ask patients how diabetes affects their lives. Psychological care was positively associated with healthcare professionals' beliefs that patients need help dealing with emotional issues and that clinical success depends on doing so, and also with level of psychological care training, multidisciplinary team membership and availability of resources for psychological care. There were significant between-country variations in psychological care strategies, before and after adjustment for individual-level factors, and significant country-by-covariate interactions for almost all individual-level factors investigated. CONCLUSIONS: Improvements in training and resources, recognition and assessment of psychological problems, and increased belief in the efficacy of psychological support may enhance healthcare professionals' efforts to address psychological problems in adults with diabetes.

Correlates of psychological outcomes among family members of people with diabetes in the second Diabetes Attitudes, Wishes and Needs (DAWN2(™) ) study.

AIMS: To conduct a second Diabetes Attitudes, Wishes and Needs (DAWN2(™) ) study, examining the experiences of family members caring for adults with diabetes in order to identify correlates of family member psychological outcomes (generic psychological well-being, perceived quality of life, and diabetes-related burden, impact and distress). METHODS: A total of 2057 family members living with a person with diabetes and involved in their care participated in an online, telephone or in-person survey. Samples of 120 respondents were recruited in each of 17 countries. Significant (P < 0.05) correlates of psychological outcomes were identified by multi-level multiple regression. RESULTS: Outcomes were worse for family members not working because of diabetes or those who had other competing obligations. Outcomes were worse if the person with diabetes was not a partner or parent, used injected diabetes medication, or had more frequent hypoglycaemia. Outcomes were worse for family members who believed that diabetes was more severe, were more involved in diabetes care, had more conflict over diabetes care or were frustrated about not knowing how to help the person with diabetes. Outcomes were better for those who had greater support from others and felt they found good ways to help the person with diabetes. There were significant differences in outcomes among countries before and after adjustment for individual characteristics, and correlates of outcomes varied by country. CONCLUSIONS: Several modifiable risk and protective factors for family member psychological outcomes were identified in this study. Diabetes education and social support were associated with improved outcomes, especially if they were helpful in supporting people with diabetes.