Adriana D Ventura

‘I call it the blame and shame disease’: a qualitative study about perceptions of social stigma surrounding type 2 diabetes

Objectives While health-related stigma has been the subject of considerable research in other conditions (obesity and HIV/AIDS), it has not received substantial attention in diabetes. The aim of the current study was to explore the social experiences of Australian adults living with type 2 diabetes mellitus (T2DM), with a particular focus on the perception and experience of diabetes-related stigma. Design A qualitative study using semistructured interviews, which were audio recorded, transcribed and subject to thematic analysis. Setting This study was conducted in non-clinical settings in metropolitan and regional areas in the Australian state of Victoria. Participants were recruited primarily through the state consumer organisation representing people with diabetes. Participants All adults aged ≥18 years with T2DM living in Victoria were eligible to take part. Twenty-five adults with T2DM participated (12 women; median age 61 years; median diabetes duration 5 years). Results A total of 21 (84%) participants indicated that they believed T2DM was stigmatised, or reported evidence of stigmatisation. Specific themes about the experience of stigma were feeling blamed by others for causing their own condition, being subject to negative stereotyping, being discriminated against or having restricted opportunities in life. Other themes focused on sources of stigma, which included the media, healthcare professionals, friends, family and colleagues. Themes relating to the consequences of this stigma were also evident, including participants’ unwillingness to disclose their condition to others and psychological distress. Participants believed that people with type 1 diabetes do not experience similar stigmatisation. Conclusions Our study found evidence of people with T2DM experiencing and perceiving diabetes-related social stigma. Further research is needed to explore ways to measure and minimise diabetes-related stigma at the individual and societal levels, and also to explore perceptions and experiences of stigma in people with type 1 diabetes.

Home-based palliative care: a systematic literature review of the self-reported unmet needs of patients and carers

Background: There have been many studies on the unmet needs of palliative care patients and carers from the perspective of bereaved caregivers. However, the unmet needs of palliative care patients and carers from the perspective of current patients and their carers have received little research attention. Aim: As home-based services have become one of the main delivery models of palliative care, the aim of this review was to describe, evaluate and summarise the literature on the unmet needs of palliative home care patients and carers. Design: The systematic review of qualitative and quantitative studies was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Data sources: PubMed, CINAHL, Embase, MEDLINE, PsycINFO, AMED and CareSearch were searched to find empirical studies on the self-reported unmet needs of palliative home care patients and carers. Results: Nine qualitative studies, three quantitative studies and three mixed-design studies were identified. The most frequently reported unmet need was effective communication with health-care professionals, the lack of which negatively impacted on the care received by patients and carers. Physical care needs were met, which indicates that the examined palliative home care services were delivering satisfactory care in this domain, but lacking in other areas. Conclusions: The focus therefore should be on improving other aspects of patient care, including communication by health professionals to prevent or reduce suffering in areas such as psychosocial domains. Valid and reliable quantitative measures of unmet needs in palliative care are needed to examine this area more rigorously.

‘I'm not a druggie, I'm just a diabetic’: a qualitative study of stigma from the perspective of adults with type 1 diabetes

Objectives While health-related stigma has been the subject of considerable research in other conditions (eg, HIV/AIDS, obesity), it has not received substantial attention in diabetes. Our aim was to explore perceptions and experiences of diabetes-related stigma from the perspective of adults with type 1 diabetes mellitus (T1DM). Design A qualitative study using semistructured interviews, which were audio recorded, transcribed and subject to thematic analysis. Setting All interviews were conducted in non-clinical settings in metropolitan areas of Victoria, Australia. Participants Adults aged ≥18 years with T1DM living in Victoria were eligible to take part. Participants were recruited primarily through the state consumer organisation representing people with diabetes. A total of 27 adults with T1DM took part: 15 (56%) were women; median IQR age was 42 (23) years and diabetes duration was 15 (20) years). Results Australian adults with T1DM perceive and experience T1DM-specific stigma as well as stigma-by-association with type 2 diabetes. Such stigma is characterised by blame, negative social judgement, stereotyping, exclusion, rejection and discrimination. Participants identified the media, family and friends, healthcare professionals and school teachers as sources of stigma. The negative consequences of this stigma span numerous life domains, including impact on relationships and social identity, emotional well-being and behavioural management of T1DM. This stigma also led to reluctance to disclose the condition in various environments. Adults with T1DM can be both the target and the source of diabetes-related stigma. Conclusions Stigmatisation is part of the social experience of living with T1DM for Australian adults. Strategies and interventions to address and mitigate this diabetes-related stigma need to be developed and evaluated.

Suicidal ideation reported by adults with Type 1 or Type 2 diabetes: results from Diabetes MILES-Australia

To examine the prevalence and correlates of suicidal ideation (SI) in a community‐based sample of adults with Type 1 or Type 2 diabetes.

Measuring the Stigma Surrounding Type 2 Diabetes: Development and Validation of the Type 2 Diabetes Stigma Assessment Scale (DSAS-2)

OBJECTIVE To develop and validate a self-report measure of perceived and experienced stigma for use with adults with type 2 diabetes: the Type 2 Diabetes Stigma Assessment Scale (DSAS-2). RESEARCH DESIGN AND METHODS An item pool was drafted based on qualitative data from 25 adults with type 2 diabetes and content from other health-related stigma questionnaires. Thirteen adults with type 2 diabetes completed 57 draft diabetes stigma items and participated in cognitive debriefing interviews. Based on participant feedback, the pool was reduced to 48 items with a 5-point Likert scale (strongly disagree to strongly agree). A total of 1,064 adults with type 2 diabetes completed a survey including these 48 items and other validated measures. Data were subject to principal components analysis and Spearman ρ correlations. RESULTS The scale was reduced to 19 items, with an unforced three-factor solution indicative of three subscales: Treated Differently (6 items, α = 0.88), Blame and Judgment (7 items, α = 0.90), and Self-stigma (6 items, α = 0.90). A forced one-factor solution supported the calculation of a total score (α = 0.95). Satisfactory concurrent, convergent, and discriminant validity were demonstrated. CONCLUSIONS The 19-item DSAS-2 is a reliable and valid measure of type 2 diabetes stigma. A rigorous design and validation process has resulted in a relatively brief measure of perceived and experienced stigma in type 2 diabetes. The novel scale has satisfactory psychometric properties and is now available to facilitate much-needed research in this field.

The lived experience of volunteering in a palliative care biography service

OBJECTIVE Many patients approaching death experience hopelessness, helplessness, and a depressed mood, and these factors can contribute to a difficult end-of-life (EoL) period. Biography services may assist patients in finding meaning and purpose at this time. The aim of our study was to investigate the lived experience of volunteers involved in a biography service in Melbourne, Australia, using a qualitative methodology. METHOD The participants were 10 volunteers who had participated in a biography service within a private palliative care service. Each volunteer was interviewed separately using a study-specific semistructured interview guide. The transcripts of these interviews were then subjected to thematic analysis. RESULTS Analysis yielded the following themes: motivations for volunteering; dealing with death, dying, and existential issues; psychosocial benefits of volunteering; and benefits and challenges of working with patients and their families. Our results indicated that volunteering gave the volunteers a deeper appreciation of existential issues, and helped them to be more appreciative of their own lives and gain a deeper awareness of the struggles other people experience. They also suggested that volunteers felt that their involvement contributed to their own personal development, and was personally rewarding. Furthermore, the results highlighted that volunteers found that encounters with family members were sometimes challenging. While some were appreciative, others imposed time limits, became overly reliant on the volunteers, and were sometimes offended, hurt, and angered by what was included in the final biography. SIGNIFICANCE OF RESULTS It is hoped that the findings of the current study will provide direction for improvements in the biography services that will benefit patients, family members, and volunteers. In particular, our findings highlight the need to provide ongoing support for volunteers to assist them in handling the challenges of volunteering in a palliative care setting.

‘Are you sure you’re going to have another one of those?’: A qualitative analysis of the social control and social support models in type 2 diabetes:

While there is evidence that spouses can impact the self-management of adults with type 2 diabetes mellitus, less is known about the influence of the wider social network. This qualitative study explored the perceived impact of the family as well as friends and work colleagues on type 2 diabetes mellitus self-management. A total of 25 adults with type 2 diabetes mellitus participated in semi-structured interviews regarding their social experiences of living with diabetes. Deductive thematic analysis was applied to the data. Pre-existing themes of health-related social control and social support were identified in the wider social network, with additional themes of non-involvement and unintentional undermining also emerging.

Cohort profiles of the cross-sectional and prospective participant groups in the second Diabetes MILES-Australia (MILES-2) study

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.

Measuring Type 1 diabetes stigma: development and validation of the Type 1 Diabetes Stigma Assessment Scale (DSAS‐1)

To develop and validate a self‐report measure designed to assess perceived and experienced stigma for adults with Type 1 diabetes: the Type 1 Diabetes Stigma Assessment Scale (DSAS‐1).

Diabetes stigma is associated with negative treatment appraisals among adults with insulin-treated Type 2 diabetes: Results from the second Diabetes MILES - Australia (MILES-2) survey

To explore factors associated with negative insulin appraisals among adults with Type 2 diabetes, including perceived and experienced diabetes stigma.