“We are more than just a number”: Mental health needs in the context of diabetes healthcare in Ireland

Study aim

The aim of this study was to explore the lived experience of people with diabetes in Ireland regarding their diabetes distress and mental health needs in the context of healthcare. This information will allow us to assess to what extent people feel their mental health needs are met by local healthcare provision.

Sample and procedure

Data were collected as part of larger workshops aiming to discuss latest research findings on diabetes and mental health, and then to extend beyond that to discuss more broadly lived experience with respect to mental health and diabetes. We advertised in-person workshop sessions on Diabetes Ireland social media channels and on Facebook groups for people with diabetes living in Ireland. Two workshop sessions took place in Dublin (the capital of Ireland, on the east coast) and Limerick (a major city, south-west), both lasting for approximately two hours. Attendance was free, and we offered €50 vouchers as compensation for participation. Out of 92 people living with diabetes who signed up, 30 (32.6%) attended the workshops, 19 in Dublin and 11 in Limerick. Before each workshop, voluntary nature, anonymity, and the content of the tasks were explained to the participants. Participants were instructed to provide us with their contact information on an attendance sheet as a sign of their written informed consent.

The workshops were designed based on World Café methodology (Brown & Isaacs, 2001), which emphasizes the natural flow of discussion in a relaxed setting to allow for insightful ideas and strategies to emerge and form. The workshops took place in rented hotel conference rooms. We seated the participants in small groups around multiple tables, each with a facilitator from the research team. After the introduction, we asked the participants several closed- and open-ended questions targeted at lived experience with diabetes, diabetes distress, and mental health. The topic and wording of the questions (see ‘Workshop questions.docx’ in online repository at https://osf.io/v2aw3/) were designed and collectively agreed upon by the research team, whose members included academic researchers as well as representatives from Ireland’s non-profit organizations providing support services for people with diabetes. Facilitators at each table guided the participants in the group discussion on each topic. Participants’ responses were recorded via post-it notes, facilitator notes, and live polling. Towards the end of each workshop, we debriefed the participants and gave them space to voice their feedback on the workshop. As a part of debriefing, we also shared the contacts for two organizations in Ireland which offer diabetes educational and support services – Diabetes Ireland, a national charity organization focused on diabetes support and education services, and Thriveabetes, a civil society focused on providing educational and peer support to people living with type 1 diabetes. The study has been performed in accordance with the Declaration of Helsinki and approved by the University College Dublin ethics committee (approval number: HS-25-04-Power-Deschenes).

Analysis

Live polling answers were assessed using numbered Likert scales. The responses to the open-ended questions typically included one or two short sentences and a qualitative content analysis was selected as the best analytic approach to capture the diverse information, narrative context and subjective meaning. We carried out the inductive content analysis in accordance with standard guidelines (Elo & Kyngäs, 2008; Erlingsson & Brysiewicz, 2017). One team member (JG) did the preliminary open coding to get acquainted with the data and then carried out the first round of qualitative coding, code revision and code grouping, categorization, and themes abstraction. The rest of the team reviewed the conceptual map, which led to refinement and the final coding scheme. We include a summary table listing all themes, categories, and codes, alongside illustrative participants’ quotations in Table 1. The coding was done using Nvivo software (Lumivero, 2022).

Polling answers

Most of the participants reported that diabetes had a strong impact on their own mental health. More broadly, about half (54%) of the participants believed that diabetes strongly impacts mental health and wellbeing, 35% believing the impact was moderate to strong, and 11% believing that the impact was moderate. Additionally, 70% of participants rated having access to psychological support as very important for people with diabetes, 20% rated it as important, and 10% rated it as somewhat important. Thus, participants believed that diabetes had an impact on their mental health and acknowledged the importance of mental health support.

Themes

From participants’ survey and discussion responses, we extracted six categories and two overarching themes. The first theme Diabetes isolates, others do not understand included four categories and centered around the feelings of isolation connected to living with diabetes, and the lack of understanding from healthcare professionals and participants’ social environment. The second theme Diabetes disrupts life and is challenging to control included two categories and encompassed the experience of daily diabetes management and how diabetes affects one’s life. Figure 1 shows the detailed conceptual scheme.

Figure 1. Identified themes, associated categories and codes.

Theme 1: Diabetes isolates, others do not understand

Participants reported that people without diabetes, including healthcare professionals, do not understand their condition and the related mental health burden. Many participants thought misconceptions and stigmatizing views on diabetes were common in public space, and some felt ashamed to reveal they had diabetes to other people. Participants reported that diabetes limited their physical and social activities, caused isolation and loneliness, and made them feel different. In a corresponding manner, participants desired to share their personal diabetes experience with someone who understood and respected it and highly appreciated opportunities for receiving peer support.

Healthcare service approach

Participants reported they had too little time to discuss important things during their checkup meetings with their general practitioners (GPs). Many found the quality of their health and daily life to be reduced to a number (blood glucose level) by their healthcare professionals (“(Doctors should) treat you as a person, rather than numbers.”, “We are more than just a number.”). Some participants felt their GPs did not have sufficient knowledge about non-medical aspects of diabetes management or skills needed to address patients’ concerns with these aspects. These participants wished their GPs would listen more and showed respect, empathy and understanding for their struggles and concerns when it comes to living with diabetes (“(Doctors should) listen to the patient and take on board what they are saying.”, “Usually healthcare professionals are under time constraints so they never ask ‚How are you feeling?‘”). In general, participants leaned towards the opinion that GPs and other healthcare professionals tend to overlook the mental health-related aspects of living with diabetes and that they should invest more time and effort into building a good doctor-patient relationship.

Healthcare service availability

Participants reported that the GP and healthcare consultant waiting times should be shorter. Access to healthcare was seen as significantly worse by those who were not living in the capital (“There are no supports for diabetic mental health and wellbeing in my area.”). Participants considered it important to have access to a healthcare professional or a point of contact, because it gave them a sense of reassurance when they felt uncertain or worried about diabetes management or related problems (“Contact time with the clinic is so important face to face, it gives you confidence and reassurance.”).

(Mis)understanding of diabetes

Participants reported that other people commonly held misconceptions about diabetes, for example, that any type of diabetes must be caused by an unhealthy lifestyle (“There's a lot of painting the illness in broad strokes.”). Participants also reported that diabetes has an associated stigma which made it harder for them to talk openly about it (“(People) can be dismissive.”, “(You can be) embarrassed to tell people you are diabetic.”). Peer support activities were very highly valued among participants, namely for the opportunity to share their lived experience alongside information on diabetes management with others who are in a similar situation and therefore understand the impact of diabetes on daily life (“It's good to meet in person and chat about different experiences.”). Many of the participants indicated their needs for more educational and experience-sharing events on mental health in diabetes, so that their friends and family members could better understand their lived experience (“Bring family and friends to help their understanding.”).

Feelings about diabetes

Diabetes diagnosis was described as a period of shock and confusion. Participants reported being overwhelmed by many emotions and thoughts after they were told they had diabetes. They also thought that being diagnosed with diabetes often lead to distressing thoughts and emotions, and that people recently diagnosed with diabetes are vulnerable and need increased emotional and mental health support (“People diagnosed with diabetes are fragile at that moment of diagnosis, and they'll believe that their life has changed – support within the first year or two to help work with their issues or worries would be very useful.”). After the diagnosis, some participants felt guilt and shame, based on a belief that developing diabetes was their fault. Others mentioned that feeling shame made it harder for them to seek help (“Mental health services are overwhelmed – I feel guilty for even asking.”). Lastly, managing diabetes required participants to make extra adjustments to their regular schedule in order to monitor and control their blood glucose levels. These adjustments complicated participants’ social life, as they could not be spontaneous when meeting with friends but had to plan many of their activities in advance. Consequently, living with diabetes was associated with a sense of isolation due to feeling different (“It can be very isolating.”, “It makes an individual feel different.”).

Theme 2: Diabetes disrupts life and is challenging to manage

Living with diabetes forced the participants to schedule and plan their life around their condition. They reported feeling exhausted, overwhelmed, or worried by the need to frequently monitor and manage their blood glucose levels. Distress was often manifested in worries and being preoccupied with diabetes. Participants thought that diabetes-related physical and mental health problems affected each other in a feedback loop and that managing diabetes was harder for them when they were feeling mentally unwell. Some participants reported experiencing negative thoughts and feelings when they felt they were unable to manage their diabetes. In contrast, some participants viewed diabetes management as a challenge and considered their previous experience of successfully managing diabetes to be a proof of their self-competence and resilience.

Managing diabetes

Most participants agreed that planning ahead was necessary for them to be able to make it through the day. Participants usually planned their daily schedule with a special focus on meals and physical activities, as these have a major impact on blood glucose levels (“(You) need to be so prepared all the time.”). Managing diabetes was found to be tiresome, even exhausting. Some participants felt burned out or overwhelmed by all the tasks and decisions they must make daily (“(There is) stress of planning days out/hanging out with friends.”, “(You are) not being about to turn off because you have to monitor your diabetes.”). Many of the participants were concerned about maintaining control of their daily lives, and the perceived impossibility of meeting all the medical-oriented goals, e.g. blood glucose levels, dietary requirements, or the amount of physical exercise (“(It is) a pressure to get everything right – weight, diet, exercise.”, “(It is) a constant chaos that I’m trying to control. Trying to maintain a perfect balance.”). However, some of the participants felt that living with diabetes made them more determined and resilient, because they considered actively managing diabetes to be a proof of their capability to deal with hardship. Although the negative mental health aspects of diabetes management were more frequently mentioned, living with diabetes gave some participants a positive sense of empowerment (“Diabetes is tough but so are we!!!”).

Diabetes pervasiveness

Participants felt that living with diabetes was constantly demanding (“Diabetes is a full-time job.”, “(You) can’t turn it off.”, “(There is) no break from it.”). The pervasiveness also manifested in mental preoccupation – participants could rarely forget about or ignore their diabetes and had trouble taking their mind off diabetes (“Diabetes is the first and last thing I think of- 24/7- constant.”). This was connected to perpetuated worries about health or how to manage potential diabetes-related complications (“(I) need to know where/when I can get food. All of this affects anxiety.”). Participants felt that diabetes was significantly affecting many aspects of their lives, especially their social life, exercising activities and dietary habits. Lastly, when their wellbeing was low, participants found it harder to manage their diabetes, which in turn made them more susceptible to a further deterioration in physical and mental health, including symptoms such as fatigue, headaches, or irritability (“If you are not in a good place you will not be able to physically look after your diabetes.”).