How might diabetes organisations address diabetes‐related stigma? Findings from a deliberative democratic case study

Abstract Introduction This study sought to identify how diabetes organisations conceptualize the problem of diabetes‐related stigma and how this shapes the selection of stigma‐reduction interventions. Methods A qualitative deliberative democratic methodology was used to access an informed dialogue about what should be done by diabetes organisations to address diabetes‐related stigma, drawing from the perspectives of board members, healthcare services staff, and communications and marketing staff from a single state‐wide diabetes organisation in Australia (n = 25). Results Participants navigated the stigma concept along two axes: one that drew attention to either disease attributes or personal moral attributes as the object of stigmatisation, and one that positioned stigma as an individual or structural problem. This shaped the selection of stigma‐reduction interventions, which included interventions to: (i) reduce the prevalence of stigmatized attributes, (ii) correct misunderstandings about diabetes, (iii) modify representations of persons with diabetes, (iii) enhance coping amongst persons with diabetes and (iv) make healthcare more person‐centred and democratic. Conclusion This study identified several grievances with ‘diabetes‐related stigma’, which are grievances that can be conceptualized and addressed at both individual and structural levels, and involve correcting misinformation about diabetes or challenging and communicating alternative representations of persons living with diabetes. Patient or Public Contribution The organisation's management and board were consulted throughout all stages of research development, analysis and reporting. The information and vignettes presented to participants drew from illness narratives obtained from earlier research involving adults with type 2 diabetes. Research participants included adults with various diabetes types.


| INTRODUCTION
Stigmatized populations represent particularly vulnerable groups within healthcare systems. They are vulnerable in the sense that perceptions of stigma (self-and anticipated-stigma) contribute to poorer psychological, social and health outcomes [1][2][3] and may result in the avoidance of healthcare services. 4 They are also vulnerable in the sense that stigmatisation is intricately bound-up with social inequality whereby stigmatisation partly emerges from and reproduces existing social inequalities. [5][6][7] In light of these concerns, better understanding and reducing health-related stigma has assumed a prominent position within health policy and research. This is especially true of diabetesrelated stigma, which has emerged as a policy issue for the International Diabetes Federation 8 and is an important area of enquiry for research seeking to improve the mental health and wellbeing of persons with diabetes. 9,10 While diabetes-related stigma has historically been seen as less important than the stigma experienced by persons living with disability, mental illness and human immunodeficiency virus-acquired immunodeficiency syndrome (HIV-AIDS), 11 there is a growing literature that recognizes the pervasive impact that stigma has on the lives of persons living with diabetes, 1,3,12-14 a point that has been explicitly made by those living with diabetes. 15 However, there are two key issues confronting stigma-reduction work within healthcare and public health organisations, both in relation to diabetes and other stigmatized conditions. The first is that there is limited evidence of effectiveness for stigma-reduction interventions. 11,16,17 In their review of diabetes-stigma research in 2013, Schabert et al. 11 were 'unable to identify any literature regarding strategies to reduce, or assist people to cope with, diabetesrelated stigma'. More recently, this paucity of evidence has been recognized in the 2019 Diabetes UK position statement on transforming the mental well-being for people with diabetes, which declared a need to identify 'interventions designed to reduce stigma, learning from existing successful stigma reduction interventions for other stigmatized conditions'. 9 The second issue is that stigma-reduction work tends to draw upon fractured understandings of health-related stigma, which produces a 'mixed bag of anti-stigma interventions' 7 that limits the realisation of stigma-reduction on a population scale.
This fractured understanding of the stigma concept, reflective of the diverse disciplinary and theoretical perspectives used to explain stigmatisation, 18 means that organisations involved in stigmareduction work are likely to require some guidance to navigate the conceptual morass.
The present study seeks to address this second issue by qualitatively mapping how members of a diabetes organisation perceive their role in stigma-reduction work, and what this infers about how they conceptualize diabetes-related stigma. Although existing research has attempted to categorize stigma-reduction interventions, 16,17,19 no study has attempted to examine how these categories relate to different ways of understanding health-related stigma from the standpoint of those involved in stigma-reduction work. Examining stigma reduction from the standpoint of diabetes organisations is important given that diabetes patient advocacy groups and communities have a long history of engaging in stigmareduction work. For example, diabetes organisations have historically approached stigma-reduction work by correcting 'myths' and 'misconceptions' about diabetes, 8,20 using high-profile individuals to communicate the needs and rights of persons living with diabetes, 8 and through political lobbying to address issues raised by those with diabetes, including issues related to inequities in insurance coverage, access to pharmaceuticals, driver's license standards and discrimination. 20,21 In the present study, we draw on the findings from deliberative democratic research performed with board members, healthcare services staff and communications and marketing staff from a single Australian state-wide diabetes organisation. The research specifically sought to identify how staff and board members from this diabetes organisation currently conceptualize the problem of diabetes-related stigma and how these conceptual understandings are used to justify existing stigma-reduction work or envisage future approaches to stigma reduction. For diabetes and other patient organisations, this knowledge is valuable because it will allow them to select and communicate a clear stance on stigmatisation, informed by a coherent understanding of health-related stigma. Doing so will allow patient organisations to more clearly and explicitly 'identify [their] injuries' and 'articulate [their] grievances', 22 something that the social disability movement has excelled at in challenging the medicalisation and stigmatisation of impaired persons. At current, there is a limited sense of precisely what grievances might be raised given feelings of being 'judged, blamed, and shamed' 10 because of one's diabetes.

| Research design
This study adopted a qualitative deliberative democratic methodology to help understand how members of a diabetes organisation construct ideas about stigma-reduction work. Within this approach, different publics are given the opportunity to participate in policy decisions based on an informed and careful (i.e., deliberate) consideration of the issues involved. 23 In relation to the aims of the present study, this methodology offers advantages over interviews and focus groups in two main ways. First, it purposefully uses participant dialogue as a means of explicating and critiquing the reasoning that informs the selection of a given policy option. 24 Second, deliberative methodologies accommodate the provision of the policy or other information to participants to promote a more informed public discussion. 25 Although publics may struggle to freely voice their opinions because of the constraining effects of ideology, operating through understandings of the stigma concept, 26-28 the provision of novel information may help 'individuals see the existing reality in a different light'. 29 The following discussion of the method expands on how these deliberative elements were integrated into the research.

| Participant sampling and recruitment
The organisation (case) examined in this study is an Australian statewide, not-for-profit and member-based diabetes organisation that had previously contributed funding to earlier research (2018-2020) examining the role of critical pedagogy in developing an understanding of diabetes-related stigma amongst adults with type 2 diabetes mellitus (T2DM; manuscript in preparation). Because critical pedagogy seeks engagement between marginalized groups and larger social organisations, 30

| Process of deliberation
Four 2-h-long deliberative groups (see Table 1 for an overview of participant characteristics) were performed 1-2 weeks following the initial presentation of findings. With the exception of one individual that withdrew due to illness, all persons that attended the information sessions also participated in the deliberative groups. Participants with HCS staff randomly allocated into one of two groups given the larger size of this cohort. This grouping strategy was designed to help focus group discussion around stigma-reduction strategies relevant for each role (characteristic of homogenous group sampling) while also ensuring access to a diversity of ideas regarding stigma reduction approaches (characteristic of maximum variation sampling). 32 Facilitation was performed by this paper's author (H. P.), with assistance provided by a second postgraduate researcher experienced in qualitative and deliberative research methods. Three short vignettes were firstly presented to each group, based on data excerpts obtained from the aforementioned case study of eight adults with T2DM who had experienced stigmatisation, all of whom were residing in areas serviced by the diabetes organisation within this study. These vignettes functioned to provide a shared text that could focus discussion on different processes involved in stigmatisation while also allowing participants the freedom to interpret, commu-

| Data collection and analysis
Group discussions were recorded using a digital audio recorder and then professionally transcribed. NVivo qualitative research software (QSR International Pty Ltd, Version 11) was used to organize and support the analysis of all collected data. Data analysis firstly involved PILLEN AND WARD | 2215 a single analyst (H. P.) scanning the transcripts to identify proposed actions that a diabetes organisation might take to reduce diabetesrelated stigma, which were then organized under the typology of stigma-mitigation approaches described by Weiss et al. 34 (i.e., addressing the health problem, stigmatizers, emotional impact of stigmatisation and social policy). To ensure that the analysis would build upon existing conceptual knowledge about health-related stigma and stigma reduction work while allowing for novel insights to be produced, we followed an analytical process involving stages of precoding, conceptual and thematic conceptualisation, and theoretical categorisation. 35

| RESULTS
The following sections provide an overview of the findings of the deliberative discussion, that is, what stigma-reduction interventions (summarized in Table 2) were described by participants and how these interventions drew on tacit understandings of the stigma concept. In reading this presentation of results, it can be helpful to imagine deliberants navigating the stigma concept along two axes: one that draws attention to either disease attributes or personal (moral) attributes as the object of stigmatisation, and one that positions stigma as an individual or structural problem. The headings used in this section are used to illustrate movements around the poles of these conceptual axes. The idea of adopting a neutral communicative stance was also 3. There exists a power-differential between healthcare providers and persons with diabetes, which allows for the reproduction of stigmatizing and blaming practices and discourses. PCC provides a mechanism for disrupting unequal modes of interaction (HCS1).

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Implying that they themselves assume the role of the stig- What the present research adds is that stigma-reduction efforts would likely benefit from addressing multiple grievances in ways that accommodate intervention at individual and structural levels while also focusing on attributes related to diabetes and persons with diabetes. It is likely that interventions to reduce the emotional effects of 'internalised' or 'felt' stigma are likely to be readily subsumed under key policy areas of reducing diabetes-related distress and improving the mental health of persons living with diabetes. 55,56 While these individual-based interventions are not in and of themselves problematic, stigma-reduction work in relation to other stigmatized conditions has experienced movement towards addressing the structural causes of health-related stigma, particularly when seeking to reduce stigma at a population scale. 5,26,[38][39][40]57,58 Given the paucity of literature examining the structural basis of diabetesrelated stigma (with some key exceptions) [51][52][53] and the existence of conceptual barriers to thinking about stigma in structural ways, 58 it would appear that stigma-reduction work needs to actively seek to operate at both individual and structural levels. In this study, actions to challenge stigmatisation at a more structural level were apparent in references to PCC, service codesign and media advocacy work, following broader policy drivers towards public and patient involvement or 'consumer engagement' in healthcare and the democratisation of healthcare planning, implementation and evaluation. 59,60 Likewise, although a focus on both disease stigma and symbolic stigma is warranted given their synergistic effect on the experience of stigmatisation, 41,61 a focus on persons living with diabetes (cf. diabetes itself) is likely to draw greater attention to matters of identity, which is central within the stigma concept. 62 Simply correcting misinformation about diabetes with medico-scientific 'facts' may simply deflect blame away from those 'normal' persons with diabetes while doing little to challenge the production of stigmatized subgroups.
While this conceptual map of stigma-reduction interventions may prove useful in intervention planning and strategy, further interventional research is required to identify the effectiveness of these proposed interventions.
In interpreting results from the deliberative case study, key quality issues relate to how representative the sample was and to what extent findings can be generalized to other diabetes organisations. 24,63 Representativeness in this deliberative research refers to the ability of the research to access a diversity of opinion regarding diabetes-related stigma and stigma-reduction work. Although this study obtained views primarily from what Degeling et al. 64 refer to as an advocate public (as an educated and partisan group), perspectives were not sampled from affected (persons living with diabetes and their families) and lay publics. While this focus is justified given our intention to examine the opinions of those likely to engage most directly with stigma-reduction work, this may have missed important contributions by persons with diabetes who engage with stigmareduction and advocacy work peripheral to or outside of formal organisations. 46 In relation to generalisability, it is recognized that different diabetes organisations will operate within different policy and cultural contexts and have access to different human, financial and informational resources, which will likely shape opinion regarding diabetes-related stigma and viable approaches to stigma-reduction work. However, cross-cultural research has demonstrated that conceptual understandings of diabetes-related stigma are relatively robust, 47,51 meaning that the findings from this study are also likely to have broad national and international relevance at a conceptual level.

| CONCLUSION
Recognizing that existing stigma-reduction work relevant to people with diabetes has been hampered by a lack of conceptual clarity around the stigma concept, this deliberative research sought to characterize how staff and board members within an Australian statewide diabetes organisation currently conceptualize the problem of diabetes-related stigma and how these conceptual understandings are used to justify existing stigma-reduction work or envisage future approaches to stigma-reduction. Findings from this study suggest that stigma-reduction interventions take their form given assumptions about the object of stigmatisation (i.e., the disease vs. persons living with the disease) and the location of stigmatizing processes (i.e., at an individual or structural level). While it may be simpler to conceptualize and act on diabetes-related stigma as an individual-level phenomenon or a community-level phenomenon involving misunderstandings about diabetes, engaging with structural and symbolic understandings of diabetes-related stigma will help ensure that stigma-reduction work engages with existing theorizing about diabetes and health-related stigma in a comprehensive way.