“I kind of gave up on it after a while, became too hard, closed my eyes, didn't want to know about it”—adults with type 1 diabetes mellitus describe defeat in the context of low social support

Abstract Background Type 1 diabetes mellitus (T1DM) is a lifelong condition that requires diligent self‐management to avoid complications. Living with T1DM is a considerable challenge and the inability to follow a prescribed regimen is often termed non‐compliance. However, this fails to acknowledge that for some people the barriers to glycaemic control may be insurmountable. Objective This qualitative study explores the structural determinants, social context and lived experience of T1DM with 17 adults to understand influences on patterns of self‐care, engagement with and trust in health‐care services, and health outcomes. Results Their stories tell us that strong social support is vital to disease adaptation and ongoing management. When social support is absent, the story is one of struggling with intensive diabetes management alone and difficulty controlling blood glucose levels. When confronted with suboptimal glycaemic control, participants isolated from social support developed combative relationships with health‐care providers and disengaged from health care. Their subsequent slide to chronic comorbid illness is steep and this study reveals the heartache and loss experienced when difficult life circumstances and low levels of social support have led to irreparable kidney damage. Conclusion Patterns of poor glycaemic control viewed in the health‐care encounter without an understanding of the context or life circumstances in which they are occurring can lead to an inability to engage with health‐care services. Disengagement from services and the absence of specialist care further isolates people, leaving them managing their diabetes alone with limited success.


| INTRODUC TI ON
living with T1DM can be delayed through good concordance with therapeutic regimens but self-management of T1DM over a lifetime is an enormous challenge even in favourable social and environmental circumstances. 1 Social factors that affect health and well-being, described as social determinants of health, are shaped in early childhood environments and set individuals onto life course trajectories that cannot be changed by individual choice alone. 2 Social determinants of health involve a large number of social factors operating in the same direction 3 creating either a negative or a positive social environment. The importance of feeling secure, safe and loved in childhood has strong links to feelings of self-worth, self-efficacy and subsequent adult well-being. 4,5 In addition, our worldview is developed in childhood and a positive early childhood environment leads to a worldview that is characterized by trust in others and the ability to form trusting and intimate adult relationships 6 that foster high levels of social support. Feelings of trust are integral not only to the ability to form close attachment relationships in adulthood, but also to the ability to develop concordant relationships with health-care providers, which is vitally important in relation to the management of lifelong chronic disease. 7,8 Reduced social support in the context of low socioeconomic environments is a multifactorial mechanism that can underlie poor outcomes in health 2 because, even in the context of low socioeconomic status (SES), feeling cared for, valued, belonging and under mutual obligation has a moderating effect on stressful environments. 9 The perception of trust can also be diminished when the person affected by chronic disease is burdened by low socioeconomic status and diminished social support, 10 because these social factors can reduce health literacy and participatory interactions with health-care providers, and hence reduce the individuals capacity for health. The focus of this study was to explore social factors that can affect self-management in T1DM and the mechanisms through which this occurs. This study also describes what is lost when unsupportive social environments lead to the development of health complications at a comparatively young age. The absence of qualitative research with adults who can describe the lived experience of T1DM, and give insights into how health-care services can better meet the needs of the people most vulnerable to dropping out of care, has been one of the most pressing gaps in the literature. 11

| ME THODS
Qualitative research is the exploration of a phenomenon achieved through the deep probing of an individual's perceptions of events, which encourages participants to define their experiences in their own words and on their own terms. This study sought elucidates the psychosocial enablers and barriers to optimum glycaemic control.
The conceptual framework of critical social theory guided the enquiry, which seeks explanation for consequences that are fashioned by social forces. This qualitative enquiry is an exploration of these forces in relation to the self-management of T1DM, and "steps back" from individualism and reflect on the conditions under which people act. The enquiry is centred on social determinants of health which are measured as concepts in the qualitative data. The primary focus is on describing the increased risk or susceptibility to adverse health outcomes related to lack of social and environmental resources and the supportive elements of a favourable environment in relation to disease outcomes. The operationalized measures include employment, income, education, housing and social support including social cohesion, social inclusion and social empowerment. 12,13 Other important factors explored are access to and quality of health care including ease of access, retention to care, engagement with services, patterns of attendance, degree of interpersonal and institutional trust. 8

| Ethical considerations
The researchers obtained ethical approval to conduct this research and all participants in the study gave informed written consent.

| Participants
Participants for this study were purposively sought from an endocrinology and renal department through the placement of posters advertising the study and through clinician support in promoting the study to people attending the clinic. People who expressed an interest in being involved were provided with the participant information and consent form (PICF) to consider and contacted by the researcher one week later by phone. Twenty-two people received the PICF and 17 opted to be involved. This heterogeneous group of adult participants comprised of 10 males and seven females with an age range of 23-62. In addition, the group had a wide range of disease duration from three months to 53 years and were able to share a variety of experiences from recent diagnosis to the challenge of living with T1DM over many years.

| Semi-structured interviews
All interviews were audio recorded, occurred in the health service setting in a private room, were one-hour average duration and transcribed verbatim.

| Data analysis
The interview data were read repeatedly and coded for common expressions and experiences. The codes were then collated and operationalized into common themes. Data were thematically analysed with the support of the software program NVivo (QSR Nvivo10 2014, QSR International, Melbourne, Australia). The analysis occurred in tandem with recruitment to the study in order to collect the most relevant data from the interviews as the emerging themes came to light.
The thematic analysis trended towards data saturation with regard to managing T1DM and engagement with health services by interview ten; however, the mechanisms underlying disengagement from health-care services with resultant severe health complications were difficult to elucidate and data collection continued until this phenomenon could be more fully understood.

| RE SULTS
The results of this study describe the important role of support for adults with T1DM. Support is multifactorial and lies in family, close relationships, but also in the relationships that the person with T1DM is able (or not) to develop with their health-care providers (HCP) which is an integral part of managing a complex health disorder. This research illuminates some of the reasons people with T1DM stop coming to clinic and as such the results are presented to demonstrate the disruptive nature of the diagnosis, family support, social support and the multiplicity of disengagement from health services with resulting catastrophic disease progression. The abrupt and life changing diagnosis of T1DM can be traumatic and highlights the importance of family support during this time.

| The role of family and social support
Fortunately, clinical care and education in T1DM is evolving, never-ending and with constant repetition, practice and support leads to eventual mastery in diabetes management.

*gender substitute
This is an important social factor that leads to withdrawal from care. A theme that emerged from all participants in describing their health-care encounter was the need to be recognized as someone with the capacity to contribute to the discussion in a meaningful way. This ensures that participation in the encounter is active and not passive.
Health literacy as a concept in health care is most often thought of as ability in literacy and numeracy but in fact it encompasses much more.
A vital aspect of health literacy is the ability to engage in a meaningful way with health-care practitioners developing a concordant relationship that enables joint decision making and common goals. Participants emphasized the importance of this, describing a keen need for healthcare practitioners to acknowledge their expertise as the person with the disease and to consult them on changes that needed to be made to the treatment regimen. Participants who were having problems managing their diabetes needed help and did not want to be criticized or blamed, but their inability to articulate this resulted in a passive healthcare encounter from which they received very little;

P 1 "I think if we focused more on the things that I can do and the benefits that it would give me if we did that, then I probably would have accepted it better" (teen onset)
Passive health-care encounters also occurred when the person with diabetes felt they were being blamed for their poor glycaemic control. They did not view this as a personal choice but felt their HCP did, and they became passive and disengaged from the discussion when that occurred;

| Biographical disruption
The diagnosis of a chronic illness can create "biographical disruption" where not only is the physical body affected but the whole life trajectory. 14 The diagnosis of T1DM in a child appeared to induce a sense of grief for parent/s, with childhood onset participants recalling their parent/s being terribly upset, and consequently they them-

| Family and social support
This study has demonstrated that entering adulthood with a strong sense of self-determination fostered by a positive early childhood environment and high levels of social support led to mastery in T1DM.
Social conditions are "fundamental causes" that influence how people are exposed to individually based risk. 17 Maternal attachment is a vital element in the development of self-determination. Participants in this research with a history of strong maternal support described how they adapted more readily to T1DM diagnosis and treatment regimens and reached autonomy in diabetes care in a supportive environment. Family breakdown in relation to parental separation has been described previously as a factor in poor glycaemic control, 18,19 but participants in this study reported this as mediated by strong parental attachment that remained intact during and after the parental split. This early childhood parental attachment appears to increase capacity in developing strong attachment relationships in adulthood subsequently resulting in an environment of good social support.
In the absence of support, individuals struggle with problematic glycaemic control, have difficulty engaging with health-care services and express a sense that management of T1DM is too hard, giving up and having just the very basics of glycaemic care in place. Social support has components of instrumental support, companionship, emotional support, relationships and connections. 20 This research has demonstrated that high levels of social support are also predictive of positive engagement with health-care services and that the absence of social support leads to inability to build active partnerships with HCP to support self-care. In diabetes care, having high resources in relation to social support leads to a higher motivation to do well and it is important therefore to consider the social context that makes choices real and available. 21 People that manage diabetes well are advantaged in their social resources and this support enables them to succeed and to become "health capable". 22

| Capability
The concept of being able to make a rational choice, which arguably underpins contemporary chronic condition self-management, fails to take into account that "agency" refers not only to intent but also to a person's capability and it is necessary to measure both to understand unintended health consequences. 23

| Redefining health-care services
Australia has a well-developed health-care service that offers universal access and it is known that inequalities in diabetes outcomes can disappear after compensation with treatment and education at a tertiary care centre. 26 31 The participants of this study clearly described a need for someone to talk to, without judgement, and this is not described as formalized psychology but as the need to reach out to another person to describe how they were feeling about their health. A novel concept would be to trial the introduction of components of "pastoral" care into diabetes care. Pastoral care has undergone significant reform to meet the needs of modern communities and has evolved into a fundamental component of child education to support healthy emotional, social and personal development with acknowledgement that social isolation can be similar to depression. 32 Components of pastoral care that have been successfully incorporated into diabetes services providing multidisciplinary collaborative models of care include life coaching, group classes and customized feedback. 33 Endocrinology services need to evolve from the traditional didactic model of care to one that has continuity in care, builds patient-provider relationships by incorporating a detailed understanding of the complexity of an individual's social history, and understands that the fear of being judged is a critical concern for people with diabetes and a known barrier to clinic attendance. 34

| CON CLUS ION
This qualitative study has explored the lived experience of T1DM and the impact of the social environment through in-depth interviews with people with T1DM about their clinic experiences allows HCP to learn of the unmet need for a more empathetic encounter that considers individual capacity and capability. Continuity in a tailored approach to care is vital to delay the onset of complications and would involve increased support for self-management, monitoring for those who withdraw from care, and active endeavours to re-engage with young people.

| Limitations
Recruitment and data collection took place in a health-care setting which influenced both the type of respondent and the recall of experiences thereby limiting the generalizability of findings to other community settings.