Stigmatised status

Participants’ shared common stories of how their peer groups behave, look and think. Accounts of peer group norms revealed how participants positioned themselves at the centre and/or margins of such norms rather than the actual perceptions and behaviour of their peers. Participants said:

If I was to walk on the street, no one could actually tell that I had diabetes, unless I actually do something … for example a blood test… (P7, aged 15, T1).

Now at age 15, I have realised that diabetes doesn’t make me different from anybody else (P10, aged 15, T1).

The relationship with self and others is complex and can positively and negatively impact on self-care. One participant explains:

I was sixteen and, on the bus, and I just didn’t feel well, and I did my injection and the woman [passenger] said, ‘oh my god’, and I was, like, sorry yeah? And they’re like, ‘you know it’s not good to take drugs on the bus?’ And I’m like, ‘excuse me’, and my friend just started laughing like. Cos we couldn’t believe it and I’m like ‘it’s not drugs. I’m diabetic’ (P16, aged 17, T1).

Being a young person with diabetes was not the only marker of difference. Participants identified as belonging to ethnic minority groups (or linguistic groups), overlaid with intra group differences based on their gender, as well as lifestyle differences bought on by living with diabetes. Our analysis has shown that the perception of social stigma (eg, disapproval of a person based on perceived social characteristics) is a common feature negotiated in how participants experience building a stable social identity22 23 while managing a chronic disease.24 25

For street-involved participants, the need to not appear vulnerable and to belong is often the reason given to why they might deviate from their health plans in order to navigate territorial stigmatisation of their identity and to increase the likelihood of inclusion by peers and in wider society. Ironically, participants reported feeling a greater sense of well-being, feeling safe and feeling valued in ethnically and/or religiously defined spaces than inside the clinic room, where they felt scrutinised and compartmentalised.

Faith-based identity

Participants who identified as Christian or Muslim reported that their belief system played a significant role in their self-care, which could have both positive and negative consequences for the management of their diabetes. For example, participants gave accounts where religious observance helped them with their self-care. One participant said:

As a Muslim you can’t drink, [and I] don’t smoke anyway, but there are rules like that, and, like, I do go out with friends but it’s [drinking and smoking], not something I majorly think about (P13, aged 18, T1).

In contrast, two participants said:

[Ramadan] is a sacred month for us. So, yeah, I want to be part of that sacred thing as well, so that’s why I feel upset when I can’t do it as well (P7, aged 15, T1).

I had a DKA [diabetic ketoacidosis) over Ramadan. My mother was away and I was at home with my older sister. I wanted to experience fasting and the feast at the end. However, I ended up in hospital (P11, aged 18, T2).

Central to most, but not all, the participants’ accounts was the importance they attached to their faith-based identities and how normative practices shared across their faith communities have been performed and, on occasion, have resulted in positive and negative self-care. Ramadan is an exemplifier of one such practice that can serve to resource identity but can also undermine healthy behaviours, so too are many other festivities and cultural events that require a break from routine eating patterns. Clinical teams should acknowledge the cultural spaces in which CYP inhabit and expect deviations from idealised medical plans.

Supporting a CYP with diabetes in education

In the participants accounts of performing self-care their educational experiences were central features, with a specific focus on how teachers act as proxy healthcare workers. Participants said;

…my tutor helps me a lot cos I have to test at the right time, and sometimes I forget, so my tutor is there to help me if I’m doing it right or I’m doing it wrong (P3, aged 11, T2).

At school I use, like, a special room. I would disappear into it [to do injections].

(P9, aged 15, T1)

They [school] have an insulin register. If anybody is missing on the register, they go and look for them and remind them, have you eaten? (P7, aged 15).

Participants highlighted how policies and procedures in schools in poor communities, have helped to support them in their self-care. However, participants’ accounts show challenges to self-care when transitioning between schools and then onto college and University. Participants mentioned:

Going from primary to secondary school and then college is difficult in relation to the information and knowledge they [educators] have about my diabetes. …you receive less and less help and therefore educators know less and less about diabetes. (P11, aged 18, T2)

I experienced problems moving away from home to university and trying to sort out my studies, prescriptions and doctor appointments. (P2, aged 18, T1)

Participants highlighted the positive and negative features of school-based diabetes support,26 with teachers playing a crucial role.27 However, participants also observed a lack of training opportunities in schools to help teachers to improve their knowledge of diabetes care.28–31 The overly reported challenge has been in transitions, when ironically support tends to tail off.32 What is missing is a coordinated approach led by the health team in preventing the marginalisation of the CYPs health plans especially during stressful life events in their educational journeys, which result in high or imbalanced sugar levels leading to hospitalisation. In practice, participants have tended to figure things out for themselves when the healthcare team could help in a proactive way to produce a smooth transition.

Friendship networks, and not the healthcare team—formed a conceptual bridge between home and school, which was felt to be especially important to CYP with diabetes.33 34 Peers are a central factor in a child’s socialisation whether they have diabetes or not, but there are few studies addressing the role of friends among CYP in the management of the disease. A selection of accounts illustrates the type of support provided by friends in the self-care of participants in this study. Participants said:

I collapsed in the middle of the playground and he [best friend] was taught by my mum what to do. So, then he called my mum, who told him to call 999. (P7, aged 15, T1)

…when I know I’m going out for a drink with friends, I make sure that I have my meal and my sugar levels are good. When you’re drinking, obviously I don’t get in to a state where I don’t know what I’m doing like. I’m scared to be, like, overly drunk and waking up in a diabetic coma or something. (P19, aged 18, T1)

Participants’ accounts reveal how they use friendship networks as a source of support in their self-care, as argued by Salamon et al.35 Yet still, social isolation and loneliness effects CYP and a few of the participant’s experienced weak friendship networks and did not know other CYP in their cohort living with diabetes to relate too. Participants remark:

I think as a child you want to really open up and talk to someone that understands what you’re going through, understands the injections, and the needles. I think when I first got diabetes, I didn’t know anyone with it so your kind of like, you can’t talk about it with anybody. (P16, aged 17, T1)

I guess I don’t get any real support. I have a couple of friends on Facebook, and we basically help each other through anything. (P10, aged 15, T1)

On the surface, healthcare teams appear absent in helping to educate friends or lack knowledge of the support provided by friends for CYP in their care. The home environment was important to understanding how participants made decisions affecting their self-care. The study takes as given the emotional consequences for CYP living in families undergoing sustained economic strain. CYP living in poverty are more likely to feel like a failure and have a sense of hopeless about their future than their more affluent peers. As a result, participants’ choices around their self-care have often been made against the backdrop of health inequalities. In the face of economic hardships participants provided rich descriptions of how family members often serve as a crucial source of support in their self-care. Participants said;

I have lived with diabetes for the last thirteen years. It hasn’t always been under control. It was when my mother took responsibility for me that my diabetes was more controlled, more freedom means less control. (P11, aged 18, T2)

I feel like because they [older family members] were like born with it [diabetes], they don’t really talk to us about it, you know, how it’s affected them or what they do. (P4, aged 12, T1)

I go to the gym with my auntie. It’s like a peace of mind away from home. They have the little TV screens in front of each activity and on the cross trainer and the treadmill, and on the steps and things. So, I can just watch TV (P8, aged 18).

Seldom do studies capture the schooling experience in poor communities and how family circumstances reduce parental ability for active involvement in their child’s self-care in school, especially from ethnic minority families. Evidence suggests that conscientiously caring for the carer helps CYP to reach their full potential in increasing resilience living with diabetes. This is reflected in: psychological models of assessment of care givers; understanding illness belief systems36; interdisciplinary working to help reduce family stress and anxiety37; including fathering a child with diabetes.38 The increasing diversity experienced in urban areas such as London necessitates the cultural competency of the healthcare workers into the needs of families living in economic stress in order to provide the right support at the right time to care givers.

Diabetes self-management

Too often, participants behaviour and attitudes have been wrongly characterised by clinicians as a marker of their disengagement from the service. The markers are hardly ever directly discussed by the healthcare team or voluntarily disclosed in clinical appointments by CYP but loom large over the relationship. Participants said:

At first, I didn’t really take it [diabetes] that seriously, I suppose, but then when you realise it’s going to affect you every day, then I started to take it more seriously. (P9, aged 15, T1)

I try not to eat as much, so that my blood sugar level doesn’t go so high and [it] saves me from having [to] reinject myself with more insulin. (P6, aged 13, T1)

I’ll eat what I want, I’ll drink what I want and that’s when my sugar levels started running high and I was just uncontrolled. So, I was missing appointments sometimes, like, oh, I’m just going to miss, I don’t want to go. (P2, aged 18, T1)

There are certain things you must cut back on. I used to do boxing, which was intense training, for an hour or so, so I think stuff like that I kind of left. I haven't been doing it as much. I feel it’s quite a lot harder to do with diabetes. (P16, aged 17, T1)

In the latter case, no clinical support was provided to the participant to learn how to cope with high intensity exercise, in order to relieve the anger that so many of participants felt living with the condition. We see missed opportunity by healthcare teams to educate and support CYP to build liveable lives. Also, participants, highlight the inherent complications in implementing their health plan. Participants said;

I’m constantly having to remember to do my blood test, and do my injections. Plus, with me, when I do my injection, after doing it, it does hurt. I get a bit frustrated and you don’t want to do it afterwards. (P4, aged 12, T1)

Most of the time, I find [doing injections] easy. Sometimes it’s kind of annoys me that I must keep doing it and doing it, and sometimes it hurts, and, yeah, fear and perceptions of doing injections. (P2, aged 18, T1)

You can’t really tell I’m wearing a pump right now because everything is electronic blue tooth? I know that the pump and the meter will connect, automatically vibrate, so I will know the insulin will get delivered. Whereas, with the pen, I have to pick up my clothes, to open this, put a needle in the pen, do this, it’s like a big long procedure before I actually give myself the injection. (P7, aged 15, T1)

Using technology in self-care is proposed to CYP as a way to promote better self-care; however, this benefit is not borne out in this study. Indeed, Balfe29 highlights how little attention has been paid to the accounts of CYP of the reasons why they may experience difficulties with their diabetes technology. Participants said:

I tried it [pump] for a while, but it’s very painful. It can be an inconvenience practically. I was doing PE, for example, and I had it on, it would just be annoying because I couldn’t play football or anything. (P20, aged 18, T1)

I’m getting use to putting my carb count in the machine so it does the maths for me. I’m not really good at that because I like doing it mentally and, like, turn off the machine straight away. (P7, aged 15, T1)

The benefits of technology (eg, e-health) to aid self-care are inconclusive. Technological determinism is both embraced and resisted in the participants self-care narratives of type 1 participants. More examination needs to be undertaken exploring how today’s CYP from poor and ethnically diverse communities navigate self-care, identity and intimacy in a digital world.

The five principle circumstances or markers that, so far as we have been able to observe, that drive the extent to which CYP with type, and a lesser degree type 2, are able to engage with health services and self-care include: (1) the probability or improbability of achieving normalcy when confronted with social stigma; (2) the easiness or difficulty in integrating faith-based practices into their daily routines; (3) the consistency or inconsistency in the quality of support provided in education; (4) the constancy or inconstancy of family and friends; and (5) the obstacles and practical challenges in balancing medicalised self-care practices in daily live.