The psychological and health benefits of using a continuous glucose monitor for a person with type 1 diabetes: A South African higher education context

How CGMs work

According to Russell, a CGM works through a tiny sensor which tests glucose every few minutes is inserted under the person’s skin stomach or arm which measures the glucose found in the fluid between the cells (Russell, 2017). Accordingly, research studies regarding the revolutionary impacts of CGM (Russell, 2017; Hirsch et al., 2008; Pickup, Freeman, & Sutton, 2018), posit that the process entails an in-time reading transmitted from the sensor to the monitor or app displaying blood glucose information. Some systems come with a dedicated monitor, and some now display the information via a smartphone app (Dexcom, 2021; Gonzalez et al., 2016; Hommel et al., 2017), thus there is no need for an extra device to be carried around. The CGM sends alerts regarding fluctuations of blood sugar levels whether rising too high or dropping too low (van Beers et al., 2016). The present study authors posit that it’s not an understatement to say that CGMs have revolutionized diabetes care. Unlike a traditional fingerstick blood glucose meter, which provides just a single glucose reading, CGM systems provide continuous, dynamic glucose information every five minutes. That equates to roughly 288 readings in a day (Healthline, 2005-2021).

Significant psychological and health factors on T1D

Figure 1 displays significant psychological factors impacting on persons with type 1 diabetes which need express attention for normalization.

Figure 1. Psychological - Health factors (Figure has been reproduced with permission from the copyright holders, TYPE1 Foundation).

Experts have largely ignored the psychological aspects of diabetes since the illness was first discovered (Kalra, Jena, & Yeravdekar, 2018). Research suggests that pre-CGM, most people with T1D developed several clinically significant psychological factors e.g., pervasive depression, anxiety, anguish, and unremitting panic attacks due to pervasive fear of “never knowing what their sugar levels were” (Holl et al., 2003; Miller et al., 2015). Further, Pérez-Marín, Gómez-Rico, and Montoya-Castilla (2015) posit that research underscores the following risk factors: situational (stressful life events), personal (additional physical diseases, low self-esteem, emotional disturbances), and interpersonal (family breakdown and conflicts), and protection factors (coping strategies, social support, fluent communication). Recent studies, on couples or family with T1D posit that increasing stressors in isolation from others within an interpersonal or family relations space and communal context negatively impacts on coping mechanisms (Afifi, Basinger, & Kam, 2020; Helgeson, Jakubiak, Van Vleet, & Zajdel, 2018; Buckingham et al., 2005).

Studies in relation to the effects of diabetes on people suggest that episodic and working memory is negatively impacted (Cansino et al., 2021) with the possibilities of debilitating brain damage. Similar findings were observed by other studies of the significant changes in brain functioning, especially executive cognitive activities, due to diabetic disease (Biessels & Despa, 2018; Arenas, Fernández-Apan, Bärtschi, Resendiz-Vera, & Rodríguez-Ortiz, 2013; Daselaar, Dennis, & Cabeza, 2007; Speight et al., 2014).

All participants of a previous study (Choudhary & Amiel, 2018) stated that the finger pricking method exacerbated psychological stress and high blood glucose; given the need for random testing with no material information assisting the individual a process that has been diminished by CGM. The compulsory changes in habits and lifestyles can also lead to psychosocial problems, including eating disorders as the person has no control of blood glucose levels in the process (Gonder-Frederick et al., 2013).

Research (Davis et al., 2005), also shows negative impact of fear and inherent anxiety, also shared by a participant that every visit to the doctor was like “a headmaster visit. What will your HbA1c be?”. The participant, code MP, states that “nonetheless, only the visit to the doctor yielded crucial information regarding diabetes management”. Finger-pricking only reveals the glucose reading as a snapshot. Psychologically, the person with T1D would have to continuously juggle figures in their head regarding whatever they have eaten and what that means, e.g., low or high sugar with resultant physical implications. As one participant in this study shares: “It’s always wondering. Can I do this activity? May I eat or drink this? If I eat this, what should I bolus?” Another would share panic inducing thoughts and fears, “Why am I feeling like this? Is my sugar High or low?” These are serious daily encounters that T1D individuals had to grapple with inherent psychological difficulties viz; isolation, feeling misunderstood, a social misfit, sickly and often not getting invited to social events etc. This has led to the term diabetes fatigue (What is diabetes distress and burnout?, n.d.). For the person living with T1D, it appears to be all consuming and just too much to handle with no breaks, diabetes doesn’t sleep and often impacts family members (Lawton et al., 2014).

Following Necho et al. (2021), the corresponding link between the psyche and the body is an important factor to consider how the effects can lead to physical health problems. Stress, anxiety and depression can lead to bodily harm and immunodeficiency. The current study suggests, that contrary to previous studies that indicated the negative impact of diabetes on daily functioning, technological advances positively impact on the livelihood of people presenting with the disease. Per Engel (1960, p.132; as stated in Stuart et al., 2020), the biopsychosocial model is more appropriate as the biomedical only takes into account the medical determinants of diseases.

With the progressive nature of technology, there’s now an appreciation of evidence-based as well as the biopsychological approach, Engel (1960, p.132; as stated in Stuart et al., 2020), that takes all multiple psychological factors into consideration (Choudhary & Amiel, 2018). CGM has, however, engendered a regenerated ecosystem of T1D individuals. Research studies suggest that the advantage of CGM devices is the provision of real time blood glucose level information (Cleveland Clinic, 2021; Bergenstal et al., 2010). The newest devices display glucose readings on a screen so you can see – in real time - whether glucose levels are rising or falling (Dexcom, 2021). Some systems also contain an alarm to let you know when your glucose reaches high or low levels (Cleveland Clinic, 2021). Some devices can display graphs revealing glucose levels collected over a certain number of hours on its display screen (Cleveland Clinic, 2021). The data collected on all devices may be uploaded and software reviewed to determine trends.

Technology based developments in the treatment of diabetes indicate enhanced quality of life and benefits from the use of a CGM device as depicted in Table 1 available in Extended data (Knowles & Wells, 2023). The CGM benefits complement psychological benefits in that one has synchronous knowledge of a 24/7 knowledge of what’s happening with one’s glucose. If a person eats, drinks, or does some activity they will know what the reaction on their blood glucose is and can react accordingly without wondering what their blood glucose levels are. The ease of CGM suggests multifaceted gains for both T1D individuals and the health system. It is imperative that people with T1D educate themselves about the most appropriate medical aid support they can access to mitigate unintended psychological stresses.

The clinically significant factors for persons with T1D using CGM is that their quality of life is improved significantly and alleviates debilitating cognitive degradation, as indicated in previous studies (Biessels & Despa, 2018; Arenas et al., 2013; Daselaar et al., 2007).

The South African context

While much of the research has been conducted in more developed countries (Motala, 2002; Centre for disease control and prevention, 2022), patients with type 1 diabetes are found worldwide. The present study, which shares similarities of patient issues from these countries, was conducted at the student counselling and career development space, University of South Africa, an open and distance learning (ODL) higher education environment. The Facebook group Type 1 diabetes South Africa is a closed group for people with Type 1 diabetes. However, to meet mandatory ethical imperatives following disclosure with inherent psychological triggers, the respondents were invited for psychotherapy at the student counselling and development centre at an Open Distance Learning institution.

The investigation of the debilitating nature of T1D on the quality of life for people with the condition and its impact on presenting cognitive and psychosocial factors is the main objective of the study while an understanding of the inherent disparities in psycho-social contexts highlights the scope. South Africa as an unequal society creates disparities that determine whether one has adequate financial access to medical aid or not as well as whether medial aid options cater adequately for the use of CGM (Tlali et al., 2022; Ataguba, Akazili, & McIntyre, 2011). The population statistics depict a very skewed socio-economic picture of societal context in that the affluent have access to private medical care excluding poverty of the majority who depend on medical aid support (Harris & Sandal, 2021; Nguse & Wassenaar, 2021; Ataguba, Akazili, & McIntyre, 2011). The health care systems in the country are spread between private (medical aids) and public (government clinics and hospitals) sectors. The amount of trust in the healthcare system had also increased moderately depending on whether or not individuals belonged to ‘vulnerable groups’, i.e., those that belong to economically or socially vulnerable groups, those with underlying diseases or healthcare professionals who have an occupational risk (Harris & Sandal, 2021). Medical aid support has inherent financial constraints creating a double bind for people with diabetes as some do not pay for CGM intervention because it is not cost effective for medical aid companies. Mental and medical healthcare is still not seen as a priority for those who are not able to afford the high cost of it. If individuals require public healthcare, they are expected to wait for a long period to see a specialist or medical practitioner. Currently, only 16-17% (Mumbauer et al., 2021) of South Africans can afford the high cost of medical aids and access to private doctors and specialists. This is due to the high amount of monthly premiums and out-of- pocket fees that are to be paid. Even so, there is still a huge disparity between members who can afford medical schemes which can offer more benefits compared to those that cannot. Urban or rural areas which allow for the use of private infrastructure has been acknowledged as being unequal across the different provinces in South Africa (Tlali et al., 2022).

Due to the high cost of medical aid support, there is an exponential increase in mental health issues at counselling centres as this is a free service, requiring effective psychotherapy in mitigation of negative impacts e.g., cognitive difficulties, motivation, burnout, diminished self-confidence and self-esteem (Unisa - University of South Africa, n.d.), also evidenced in people with T1D (Davis et al., 2005; Kalra, Jena, & Yeravdekar, 2018; Cansino et al., 2021).

Ethics statement

This study was conducted following ethical approval from the University of South Africa ethics committee Ref: 2019/04/17/90197585/09/MC. All ethical considerations were upheld in ensuring confidentiality of the participants’ information. Response data was coded and filed with encryption known only to the researcher to prevent phishing or exposure of any type. The written informed consent which all participants had to complete using an electronic signature for participation in the study was obtained before commencement of the study. Participants were informed of a non-obligation to participate, their right to withdraw from the study at any point, and that the anonymised data resulting from the study could be published. Child participation was excluded from the study as a criterion as they did not form part of the study and also to meet university student counselling environment processes. However, some parents shared clinically significant information regarding their children who had T1D, when this impacted their psychological wellbeing, e.g. anxiety and fatigue.

Implications for T1D

The main implication of our study is that diabetes has a broad effect on several daily psycho-social factors including memory, isolation, financial and medical aid constraints - Table 2 in Underlying data (Knowles & Wells, 2023) - because most demanding processes within each of these variables were diminished in participants with diabetes (Monette, Baird, & Jackson, 2014; Palta et al., 2014). Nguse and Wassenaar (2021) argue that mental health is generally ignored during times of a pandemic, even though these can have long-lasting effects on individuals after the pandemic is over. However, the use of CGM by T1D, with complementary psychotherapy, indicated improved health related quality of life. The extensive effect of using CGM by T1D on quality of life suggests that diabetic individuals can mitigate negative experiences of diabetes, which is further supported by the fact that blood glucose levels are in constant control and are the most essential functions to maintain efficient control of everyday activities and preserve autonomy. The biggest advantage of CGM devices is that they provide information on what is happening to your blood glucose level every few minutes (Cleveland Clinic, 2021).

Limitations and future research

Despite the significant findings, this study is subjected to some limitations. For example, it only involves data of T1D CGM users who were subsequently invited to the student counselling and development directorate in an open distance higher education sector in South Africa (Unisa - University of South Africa, n.d.). The participants in the present study, through the university Facebook page, received information regarding psychotherapy from the counselling centre either face-to-face on a limited basis due to covid-19 restrictions or engage in an online therapeutic intervention. These were identified from the results as needing psychological intervention and in response to the researcher’s ethical obligations. Future studies, in this respect, could include non-medical aid supported T1D CGM users in different geographical settings in South Africa. Next, other developing countries can be selected as the study sample, and a broader comparison can be made. Furthermore, it would be interesting if the sample population could be extended to other medical conditions and social contexts, such as cardiac, disability, visual impairment, hearing impairment, autism spectrum disorder and Alzheimer’s; hence, offering more diverse insights on technology adoption for medical intervention. In terms of the data collection, future research may consider studying the impact of COVID-19, at least after three years to examine the probable adoption changes. Finally, the study’s findings reflect the 21^st-century benefits of T1D CGM usage allowing for improved control of blood glucose levels as well diminished frequency of finger pricking.

One limitation of the study is the time, COVID-19 pandemic, in which the participants were affected by diabetes because this information might be imprecise due to memory mistakes. Another limitation is in the design that does not allow real-time follow-up of the course of the COVID-19 impacts on diabetes and its gradual effects on memory. Although we controlled for the influence of several potential confounders to reliably examine the effects of diabetes on memory, previous research contends that the list of control variables is not exhaustive (Cansino et al., 2021; Choudhary & Amiel, 2018; Daselaar, Dennis, & Cabeza, 2007). These limitations should be considered when interpreting the results of the present study.