Perceptions of healthcare professionals and people with type 2 diabetes on emotional support: a qualitative study

Themes

For the purpose of this section, people with T2DM will be referred to as ‘PWD’ (person with diabetes). Despite exploring the topic guides in separate groups, the same overall themes emerged from the data: (a) recognition of the emotional impact of T2DM; (b) provision of emotional support in primary care; (c) other sources of emotional support; (d) influences on, and barriers to, emotional support in primary care; and (e) wellbeing versus depression.

Recognition of the emotional impact of type 2 diabetes

Recognition and normalisation of the emotional impact of T2DM was considered essential to holistic diabetes care. HCPs supported that the emotional challenges of living with a chronic condition must be acknowledged and addressed similarly to other long-term conditions, such as cancer:

‘I think it’s almost like people need to realise that it’s quite normal to have these emotions.’

(HCP 1, nurse, female [F])

‘… it’s very often seen as, ”You’ve only got diabetes, whereas, my friend round the corner has got cancer, or … my friend’s got Parkinson’s disease.” It’s “why can’t you cope?” ... It’s a massive issue isn’t it, living with a condition like diabetes on a daily basis.’

(HCP 1, nurse, F)

Day-to-day emotional challenges appeared to be more acceptable for other long-term conditions, but less so for T2DM. Emotional support seemed to be integrated and accessible in many long-term condition services within and outside the NHS; however, this did not seem to be the case for T2DM:

‘There’s lots of support for them [Parkinson’s, stroke], be that physical support, but integrated into that is their wellbeing. There’s more of a peer-group support, as well, carer support. Whereas, when you have diabetes, there doesn’t seem to be any support group … apart from Diabetes UK, but that’s not NHS-led.’

(HCP 3, nurse, F)

Provision of emotional support in primary care

In comparison to other chronic conditions, the availability and acceptability of emotional support in diabetes was limited. PWD had strong views on the provision of (or lack of) emotional support in primary care at the time of diagnosis. One PWD explicitly shared receiving emotional support from their diabetes nurse:

‘I got the support from my diabetic nurse right from the word go. But then that put my mind at rest.’

(PWD 1, F, aged 60–75 years)

However, for most participants this was not the case; many felt they were not provided with the opportunity to have a one-to-one consultation to discuss their concerns and emotions. PWD reported receiving informational support in the form of leaflets instead:

‘They called me and they said ”right, the results have come back, they’re [glucose levels] high, can you come in to the practice and collect your prescription for metformin“ and that was it. The appointment was quick, ”there’s some leaflets here, take whatever you like, off you go”. They [general practice] never called back for a review or anything … ’

(PWD 4, F, aged 40–59 years)

‘And the diagnosis was “you’re diabetic, here’s some pills, take those, see a nurse every 6–12 months” … for the check-ups and the weight, and all that, and it was just a bunch of leaflets as well.’

(PWD 6, male [M], aged 40–59 years)

These views echoed those of the HCPs focus groups; namely, that standard support provided by primary care is indeed comprised mostly of informational support, with little focus on the emotional demands of T2DM:

‘I think we’re very good at the very practical things … so teaching them about targets and numbers, looking at things like driving for instance. I think perhaps we’re not so good at getting into the psyche of the person.’

(HCP 4, nurse, F)

‘Yeah I think we’re good at number crunching, and I don’t think we’re good at talking to people about them, and what’s important to them.’

(HCP 5, nurse, F)

Other sources of emotional support

For many PWD, their main concern was the uncertainties arising from their condition. All participants agreed that emotional support was important in their diabetes care, but the overriding view was that such support was lacking in primary care. Community leaders were reported to be accessible and helpful sources for emotional support. Two HCPs shared positive experiences on how community support can assist people with T2DM emotionally. They spoke specifically about faith leaders and the role they have within the community to support any concerns or worries about T2DM:

‘… interestingly, yesterday we ran a group for faith leaders and they were much more in tune to talk about self-esteem, depression, and their emotional side. That’s never come up with HCPs.’

(HCP 4, nurse, F)

‘So people use the religious leaders perhaps as a way of support, offloading. I mean presume they’ll be getting direction from them.’

(HCP 2, nurse, F)

South-Asian populations were able to address emotional issues of T2DM with their communities, and there seemed to be a sense of trust and openness towards faith leaders. It appeared that PWD may attend primary care for ‘practical’ information, and seek emotional support from their community:

‘So I suppose you could say there’s a cultural side to perhaps who the HCP is, and the patient’s ethnicity, and what they’re able to offer information-wise. It may be they come in [to primary care] just for the practical side, and then outside the NHS … ’

(HCP 3, nurse, F)

To add to this, PWD shared their own experiences of being part of a support group or a physical activity group for people with long-term conditions. These groups, where people are able to talk to others and share personal experiences, can act as a form of peer-support mechanism to PWD. Being able to talk to others in a peer-support setting made them feel confident and relieved:

‘I’ve got [a long-term condition], so I go to the gym, so at least we can talk to each other there.’

(PWD 1, F, aged 60–75 years)

‘You need to talk to some people around you who’ve got similar kind of problems. This is important, because sometimes there’s something bothering you, and they might tell you, “oh, I’ve got this severe itching or something, what do you think it is?” If you just keep it between yourself and the consultant or the doctor, then you’re possibly missing out on this kind of support, which is needed.’

(PWD 5, male, aged 60–75 years)

Influences on, and barriers to, emotional support in primary care

Conversations with HCPs frequently referred back to existing limitations in primary care regarding emotional support; three key reasons emerged to explain why emotional support lacks in primary care.

First, lack of time: HCPs and PWD shared similar views that lack of time can be a fundamental barrier to the provision of emotional support. From both groups personal experience, consultations are either very target-driven or time-restricted, which does not allow time to explore and address issues around the emotional management of diabetes:

‘… I think it’s [consultation] very target-driven. Particularly from my perspective in primary care, there’s certain things you need to do within that time.’

(HCP 4, nurse, F)

‘GPs have 10 minutes. The nurses have the luxury sometimes of 20, but not always. So time and how you use your consultation is really quite vital to that.’

(HCP 3, nurse, F)

‘… for retinal screening, they never have the time to ask you anything. They’re just there to photograph you and say hello and goodbye to you.’

(PWD 2, M, aged 60–75 years)

‘They never ask you any questions at all.’

(PWD 5, M, aged 60–75 years)

Second, lack of confidence: HCPs acknowledged these barriers and agreed that issues must be explored in consultations. However, HCPs expressed fear that such encouragement could ‘open a can of worms’ (HCP 2, nurse, F). There was an overall perception that professionals did not feel prepared to provide the appropriate support to address any upcoming emotional issues or concerns, possibly due to lack of confidence:

‘And “Can I support them? Am I the best person?” It’s having the confidence. Knowing that it’s not our responsibility to sort it out, make them feel better.’

(HCP 2, nurse, F)

Third, lack of training: HCPs acknowledged that not all HCPs would know how to manage such a consultation with a PWD, suggesting that training in consultation skills is essential. One particular HCP shared their experience on how they approach their consultations, by applying their listening skills:

‘And sometimes I can just talk to a patient, or sometimes I don’t talk, I just listen. You don’t change any medication, you don’t talk about their results, you just listen … so maybe there’s a degree of education, needing staff to look again at how we approach, how you’re able to handle the information you’re given.’

(HCP 3, nurse, F)

HCP 3 (nurse, F): ‘So motivational interviewing, counselling skills, those key questions that you can ask … ’

HCP2 (nurse, F): ‘So it’s not being a counsellor, but it’s having those skills.’

HCP3: ‘… it’s the skills yeah, it’s knowing to address that.’

(HCP focus group)

For one HCP, it was important not just to be equipped with the right skills but to also provide emotional support at the ‘right time’. For them it was important that a process is in place whereby the PWD receives emotional support at the time of diagnosis:

‘As a diabetes specialist nurse, it’s maybe 10 years later you’re actually meeting them for the first time, when the diabetes control is way off the scale. So it’s almost, you don’t want to go back and say “well, how are you coping with your diabetes?” because you’re hoping that’s been addressed many years earlier, but probably wasn’t.’

(HCP 4, nurse, F)

Wellbeing versus depression

Language and labelling appeared to have a fundamental impact on the behaviour of PWD. Wellbeing may often be referred to as ‘depression’, and for some people this term was perceived as ‘scary’ and ‘daunting’, reiterating the importance of using appropriate language in consultations and self-management programmes. Participants in both groups believed that emotional support was as important as practical support; however, when emotional wellbeing was constructed as ‘depression’, it elicited a sense of taboo around experiencing emotions other than lowered mood. This ultimately could lead PWD feeling reluctant to disclose their vulnerability due to fears of stigma attached to ‘depression’:

HCP4 (nurse, F): ‘Yeah, because people think ”I’m not depressed”.’

HCP1 (nurse, F): ‘Even if they are!’

HCP5 (nurse, F): ‘The word probably scares people … if you said emotional support or wellbeing …’

HCP3 (nurse, F): ‘And I think people don’t see depression the way we see it in its range. They see depression perhaps as somebody very …’

HCP2 (nurse, F): ‘… who’s on medication.’

HCP3 (nurse, F): ‘Yeah, very tearful, perhaps very down. And low mood, actually, we know there’s a whole spectrum of depression.’

(HCP focus group)

HCPs commented that using the term ‘depression’ did not really encompass the emotional impact that PWD actually feel, and that the majority experience other emotional responses, such as DRD or anxiety:

‘It’s very much a focus on depression, whereas my experience is a lot of people feel very anxious, because the anxiety of thinking “well, am I at increased risk of a heart attack or stroke?”’

(HCP 1, nurse, F)

Despite depression being perceived as a normal emotional reaction, personal reports from HCPs suggest that PWD could not relate to this emotion or refused to construct their experience with such a negative label.