Psychological impact of COVID-19 on People With Diabetes: Observations from Health Care Practitioners
The COVID-19 pandemic, and the drastic public health measures taken to contain the SARS-CoV-2 virus, have caused global disruption. Early measures in Australia included reducing international and domestic travel, social distancing, compulsory stay at home periods, curfews, school shutdowns, isolation, and quarantine for those travelling from affected areas. Although successful in reducing rates of infection, severe consequences have been evident for economic, health (physical and mental), and education systems. Additionally, the ease with which the virus can re-emerge is now better understood, and it is likely that life will continue to be disrupted for some time to come. At the time of writing, Victoria has just emerged from a lockdown to deal with a second wave, while countries in Europe are locking down or considering lockdown1. Many Asian countries which were lauded for dealing successfully with the first wave of the virus have also had a resurgence2.
Following is a qualitative assessment of the psychological impact of the disease on people with diabetes from the perspective of health care professionals (HCPs). The aim is to use HCPs’ anecdotal reports to show their perspective on service provision during the pandemic. This will include their views of the changing needs of people with diabetes, and the modifications that have needed to be made in the workplace. Suggestions to assist with managing psychological health will be included.
Diabetes Health Services in the COVID-19 pandemic
In Australia, action was taken early on to facilitate health care for people with diabetes3. The National Diabetes Service Scheme (NDSS) took steps to make products more accessible to people with diabetes, hospitals adopted telehealth consultations, and the Medicare Benefits Scheme (MBS) was broadened to include telehealth consultations for a variety of HCPs (including diabetes educators, general practitioners, dietitians, consultant endocrinologists and psychologists). Diabetes organisations collaborated to provide guidelines and communicate important information via social media and electronic messaging.
Impact of the COVID-19 pandemic on population mental health
There has been concern about the short and long–term psychological consequences of the pandemic. The United Nations noted widespread emotional distress in COVID-19 affected populations, and called for action on mental health to be prioritised and addressed urgently4, 5. Studies of the effects of quarantine and isolation in past pandemics have shown high levels of distress in both adults and children. Reactions in adults include anger, low mood, stress, irritability, and insomnia6. Unsurprisingly, an Australian online survey of 5070 individuals during the initial restrictions found that 4 in 5 reported that their mental health had worsened since the outbreak7. High levels of uncertainty about the future were reported, as well as worry about their financial situation and extreme loneliness. Additionally, over half of respondents were very or extremely worried about their family and friends contracting COVID-19. Similarly, children have been shown to experience traumatic stress responses during isolation or quarantine8, 9. Studies of Chinese, Spanish and Italian children have noted significant emotional and behavioural changes in children and adolescents during lockdown10, 11. Reactions ranged from regression and clinginess in younger children to anxiety, anger, restlessness and withdrawal in older children. Increased screen time in children was commonly reported.
Australian mental health services have experienced greater than usual demand. This was particularly evident in Victoria, where lockdowns were extended due to a second wave – a 33% increase of presentations to emergency for self-harm was observed, and calls to Lifeline and Beyond Blue doubled in the initial two week period of reintroducing lockdown restrictions12. This is unsurprising, as longer durations of quarantine are associated with poorer mental health6. As a result, additional mental health services have been made available throughout Australia. For example, Beyond Blue announced a new dedicated service to support mental health through COVID-19, and Mental Health Treatment Plans (MHTP) have been extended from 10 to 20 sessions, available until June 202213, 14.
Psychological distress is expected to continue after the pandemic ends, peaking later and lasting longer than the physical health consequences15, 16. Supports for psychological distress related to the pandemic may therefore need to remain in place for some time, or even increased. Studies of past quarantines have shown medium to long term sequelae such as post-traumatic stress symptoms, alcohol abuse, and continued avoidance behaviours (for example, avoidance of crowds or not reporting to work6). There has been widespread commentary on a projected increase in suicide as vulnerable people experience social isolation, loneliness, or financial stress15, 17. Although to date this has not occurred, this spike may occur later when the impact from economic downturn is evident16.
Impact of COVID-19 on psychological health of people with diabetes
There are now a number of papers addressing the mental health of people with diabetes during the COVID-19 pandemic18. Studies have shown that greater COVID-related distress occurs in both people with pre-existing chronic physical health conditions, and people with pre-existing psychological distress7, 19. People with diabetes fit both categories – diabetes increases risk of psychological distress compared to the general population20, 21, and is a chronic condition that is associated with more severe COVID-19 disease and worse prognosis22. It is therefore unsurprising that people with diabetes have reported increased anxiety23.
In preparation for this article, observations were sought from a range of HCPs. They were asked how the psychological health of people with diabetes had changed during the COVID pandemic. There was general consensus that this has been a difficult period for many. A typical response was “People are anxious, agitated, and easily disturbed. They’re eating more, not exercising, and have less motivation to look after themselves”24. The following observations are not intended to be comprehensive, but simply a snapshot of some HCP’s opinions. I did not speak to any HCPs from Victoria, where a second wave of lockdowns and curfew was in place when comments were sought.
Observations on adapting to service provision during the COVID-19 pandemic
Telehealth and telephone appointments
Prior to the COVID-19 pandemic virtual healthcare was not common, and clinicians reported multiple barriers to its use25. This was despite considerable evidence of benefits in many areas of health. For example, in diabetes care, good client satisfaction and improved glycaemic management has been shown26. Telehealth has now, due to necessity, been adopted rapidly across the world. Quinn et al believe virtual consultations will remain an important part of routine diabetes care in the future, and have laid out recommendations for conducting clinics via telehealth27. Various professional organisations have also published guidance on using this technology, including the Australian Diabetes Educators Association and the Dietitians Association of Australia28, 29.
HCPs report that many people with diabetes appear pleased to have access to virtual appointments30, 31. One Young Adults type 1 diabetes (T1D) Clinic has had higher attendance rates during the pandemic than in the same three week period last year31, 32. Interestingly, many of these young people opted for phone rather than video appointments. Ms Gabriele Berea30, Clinical Psychologist, notes that some people find phone appointments less confronting and anxiety provoking than face-to-face or telehealth appointments, and are more likely to attend them. Ms Grace Bucholtz, Credentialled Diabetes Educator (CDE), agrees, but says that factors of convenience may influence the choice for others31. “We are calling them for the phone call, so they only have to answer the call and I can hear a lot of them are doing other things while they’re on the phone. Whereas a virtual care appointment requires them to be more present at the computer and find the time and effort to log on and join the clinic appointment.”
Success with telehealth has not been limited to young people, with a successful telehealth pump start of a person in their seventies reported24. The availability of cloud-based access to glucose and insulin data has supported virtual consultations, making them a viable method of providing healthcare for people with diabetes33, 34. Dr Kate Marsh, Accredited Practicing Dietitian (APD) and CDE says that clients have found telehealth appointments much more convenient, with no need to miss long periods of work, organise care for children, or pay for travel or parking fees35.
In some cases, only phone appointments have been available, regardless of preference. Sometimes this is due to poor internet connectivity/access, or lack of suitable technology (in hospital or in the home). Other barriers have included hearing/vision impairments, or a lack of technological skill. Phone appointments have been seen as more challenging from the HCP’s perspective, with a common complaint being a lack of visual cues that are normally relied upon in communication36. Additionally, HCPs have found that some clients are taking calls while engaged in other distracting activities, such as driving or supermarket shopping, or that clients lack a private area for the call30, 35.
Although virtual consultations clearly valuable, there are, of course, those with a strong preference for a face-to-face appointment. Ms Sally Beardmore, Clinical Psychologist, reports that their diabetes service has been inundated since they resumed face-to-face appointments, with those who had avoided a telehealth appointment returning in high numbers.
Reluctance to attend medical settings
There is international and Australian evidence that the COVID-19 pandemic has resulted in avoidance of contact with medical services. For example, a United States survey found that 38% of adults delayed medical care in the four weeks prior to being questioned37. A Cancer Australia report has revealed a 30-50% drop in tests and treatments for the most common cancers in Australia38. There is also scientific and anecdotal evidence of a decrease in newly diagnosed T1D accompanied by an increase in severity of ketoacidosis at diagnosis39-42.
Dr Ravind Pandher, Endocrinologist, has noticed that fear is leading to avoidance of routine pathology and screening appointments33. “Because some people are too fearful to have their bloods done, it can be hard to get an accurate snapshot of how diabetes is managed”. Many are also avoiding routine screening appointments, such as foot checks, kidney function, vision, and pathology. He has found it critical to find and allay exaggerated fears, and to emphasise the importance of screening visits. This usually results in a decision to attend.
Need for longer appointment times
Consultations have tended to be longer than usual. Often there is psychological distress that needs to be addressed. Sometimes physical health issues have been exacerbated through avoidance of medical services – one educator reported discovering development of a Charcot Foot in someone who had missed his regular podiatry appointments24. HCPs agree on the need to allocate time to address the complex issues that need attention, “rather than just cutting off and doing a normal consult”24. This is in keeping with generally accepted advice that good psychosocial care should be a routine part of diabetes medical care43.
Observations on effects of lockdown and social distancing
The responses of individuals with diabetes to changed lifestyles has been varied. Some people with T1D had improved glycaemic management during lockdown44-47. Sr Wendy Bryant, CDE, reports, “A small group has embraced the isolation and done much better than if they were going to work. They are loving not having the constraints of travelling and juggling all their other activities” 24. For these people, spending more time on home cooked meals, having more time for family, and reading and sleeping more has been advantageous46. However, for some, this enthusiasm has been short lived. Ms Kylie Alexander, (APD), noticed an initial burst of energy towards diabetes care32. However, this was often not sustainable, and many have now reverted to their normal habits, particularly as restrictions have become less stringent. This seems a universal phenomenon – while many people initially tackled long-neglected tasks with enthusiasm, this has often turned to ennui as the weeks turned into months of long hours at home48.
Disruption to routines – exercise, sleep and nutrition
Maintenance of many health behaviours relies on adherence to routine49, 50, and many routines have been affected by COVID-19 measures. Overall, HCPs found that people were “out of sorts”, and not doing their regular healthy behaviours24, 32. For many, physical activity decreased as a result of working from home (sometimes in addition to managing school or pre-school aged children). Additionally, many regular scheduled activities, such as dance classes or gym sessions were not available. Even though gyms and other centres have now re-opened in many parts of Australia, many people with diabetes are not attending due to risk of contracting the virus. Some people are avoiding leaving the house altogether, so have also ceased their usual walking or running routines.
Sleep routines have been disrupted for others. Reasons include stress and worry, difficulty separating home and work life, or simply because normal routines are disturbed. Poor sleep is of concern as it impacts negatively on glycaemic and psychosocial outcomes51-53.
Healthy eating has also been affected, and weight gain is common. Ms Cheryl Lum, APD, has noticed people with diabetes are anxious about contracting SARS-CoV-2 in crowded places54. They are avoiding shops and supermarkets, resulting in a limited food supply. Working from home also means insufficient breaks during the day, missed meals, excessive snacking, and less activity. This results in increased unhealthy food choices such as takeaway meals. Emotional eating and drinking due to general distress have also been common30. These changes in consumption are in line with Australian surveys during and subsequent to lockdown46, 55, showing that sections of the general population have increased consumption of alcohol and unhealthy food.
When routines are disrupted, it is common for people to feel despondent about getting back on track, particularly if they worked hard to achieve these habits. HCPs can help by giving the message that lapses are normal, and that it is possible to recover. People with diabetes should feel supported with getting back on track when they are ready24. This can include more regular appointments, and small and manageable goals that are agreed on with the HCP. If there are supportive family members, it may be appropriate to set small shared goals with them56.
In addition to the burdens of lockdown and the constraints of a changed world, COVID may impact on mental health and diabetes self-care in numerous other ways. These may include relationship breakdown, domestic violence, unemployment, financial stress, illness and bereavement. These circumstances are likely to lead to psychological distress, as previously mentioned. HCPs may need updated knowledge of local services to assist people with these specific areas.
Observations of raised psychological distress and effects on diabetes care
Diabetes distress and COVID distress
Diabetes distress is emotional distress resulting from the burden of diabetes and its self-management57. The pandemic has added “a new layer of complexity…to the already difficult task of managing…diabetes”23. As a result, HCPs have observed raised distress levels in people with diabetes – diabetes distress intertwined with distress about COVID-19. Following are some specific observations of HCPs regarding areas of distress.
Anxiety and stress
Many people with diabetes have had raised anxiety during the COVID-19 pandemic18, 23, 58. A recent study from Denmark found that most common worries included greater severity of disease if infected, and being unable to manage diabetes if infected59. Anxiety has been observed to lead to avoidance of many routine activities, which then affects both mental and physical health. Ms Lum says, “I have clients with T1D who are very fearful of getting COVID, and are avoiding leaving the house. I encourage them to get a coffee, or go out for a run – getting back in their routine would help their mental health and also their diabetes”54. Ms Alexander has found that women with gestational diabetes have particularly struggled, they are often “too scared to go out for a walk”(32). Some people with diabetes have also insisted that their partners follow stringent measures to avoid SARS-CoV-2, which has caused tension42. HCPs can help by addressing avoidance and encouraging healthy low risk behaviour regardless of the presence of anxiety60.
It is likely that anxiety and stress have been exacerbated by repeated media exposure to the pandemic61. HCPs say that some people with diabetes have noticed this link, and protected themselves by not engaging with media content that causes increased distress30. HCPs can suggest that people with diabetes choose one or two trusted sources and stay abreast of updates with reference to only these sources. Exposure to repetitive media stories should be limited, and scepticism should be employed with social media, unless from trusted organisations61.
Some families of children with diabetes have also been vulnerable to increased anxiety during the pandemic. Worries have included fear of reduced immunity, fluctuations in glucose levels, childrens’ challenging behaviours (including lack of adherence to diabetes routines), and increased consumption of food during the lockdown62. Ms Margaret Shepherd, Clinical Psychologist, reports a mix of responses to COVID in the paediatric clinic63. While some families continued without too much turmoil, others were highly affected by anxiety. There is no current evidence that children with diabetes experience worse outcomes of COVID-19 infection than children without diabetes64, and HCPs can play a role in helping to settle anxiety that is out of proportion to risk, and problem solve diabetes-related behavioural issues.
Depression and related emotions
HCPs have observed that some people with diabetes have found it difficult to engage in their usual self-care behaviour. Many have experienced a sense of listlessness and lack motivation, possibly linked to depression. Some have had losses of loved ones, or economic losses. Others have had important plans cancelled, with devastating results, and have had difficulty finding a new life path. Prioritising health outcomes has seemed pointless32. Some report boredom and hopelessness – being at home more and having fewer activities has led to feeling they have no positives and nothing to look forward to24. Associated with a decrease in usual self-care behaviours has been a sense of guilt and fear about possible future consequences. For some this has swung into a vicious cycle of inaction and hopelessness. In these cases, HCPs can respond by mutually setting meaningful and achievable goals. People with diabetes who are experiencing prolonged and/or severe mood disturbance should be referred to a mental health practitioner.
Isolation and loneliness
Many more people with diabetes are now in situations where they are isolated. Regular short phone calls can be helpful both for diabetes education and for monitoring wellbeing and reducing feelings of isolation. Ms Bryant has found, “it’s really important to call them on time, as they are sitting by the phone waiting”24. Ms Alexander notes that often older people are struggling most, a combination of being high risk, often living alone and isolated, and missing seeing family members, particularly grandchildren. Additionally, they often had travel plans which are now on hold indefinitely32.
Another potentially highly affected group are young people, for example those who have had disruptions to significant years in their education, or who normally socialise in crowded places. Some of these young people are struggling greatly with feelings of loneliness and isolation32. This has been particularly hard for those who were already feeling isolated prior to the pandemic36.
If a person with diabetes appears to be isolated and lonely, it is worth having a discussion on ways they may be able to access support. The HCP can help the person decide on a small and achievable goal, and organise a quick contact in a few days to ensure that this has happened.
Although not mentioned by any HCPs interviewed for this piece, people with eating disorders have struggled during the COVID-19 pandemic, with dramatic increases in calls to support networks65, 66. Eating disorders are both over-represented and under-recognised in people with diabetes67. Diabetes HCPs should be therefore vigilant for clients who are struggling, and refer them for suitable treatment.
Recommendations for HCPs when psychological distress is present
Dealing with psychological distress during the COVID-19 pandemic is not dissimilar to dealing with psychosocial issues in normal times. Allowing sufficient time in an appointment, enquiring about general emotional health, being a good listener, and using appropriate language all combine to create a warm and safe atmosphere for a people with diabetes68. When setting goals, aim to focus on something small and within control, for example, “a daily 10 minute walk“, rather than “no weight gain” or “feel happier”69. Familiarity with the excellent handbook Diabetes and Emotional Health is recommended70 .
COVID-related mental health resources have now been published71, including some specifically for people with diabetes58, 72. It may be useful to direct people to these, or similar, materials when appropriate. HCPs should also be vigilant of the signs indicating referral to a mental health practitioner. This discussion should be carried out skillfully, in order to minimise stigma and maximise the likelihood of the individual with diabetes accepting the referral.
People with diabetes may find it helpful to be in contact with their peer 23, 68, 73, and HCPs can facilitate this by referring them to appropriate online resources. HCPs may sometimes be able to facilitate within-service online support groups of like-minded people with diabetes30. Other creative solutions can also be tried. For example, Diabetes Scotland has worked with a yoga and mindfulness teacher to deliver online sessions. This has been helpful for stress reduction, and has also reached a group who may not have attended face-to-face classes74.
The COVID pandemic will change us all in some way, as we adapt to ongoing change, stress, and loss in our lives. HCPs can use this common humanity as a starting point to bring more empathy, sensitivity and wisdom to their work. Antonio Guterres, the United Nations Secretary General, has said, “There is no health without mental health”5. This is particularly the case with a self-managed condition such as diabetes. People with diabetes want and need to talk about the emotional impact of diabetes75, and facilitating these conversations is now more crucial than ever. It is recommend that every diabetes HCP re-reads their Diabetes and Emotional Health Handbook70, in order to be as effective as possible in these difficult times.
Summary and Recommendations
- The COVID-19 pandemic has greatly impacted the psychological and behavioural functioning of people with diabetes. Many have experienced higher than usual levels of diabetes distress and poor mental health, and also struggled to maintain diabetes self-care. This has impacted upon their glycaemic management.
- HCPs need to adapt to new ways of delivering health care, while staying person-focused. Extra time and attention should be given to exploring the individual’s changed circumstances, and working out possible solutions.
- Diabetes HCPs should be the main professionals involved in navigating diabetes distress. However, some people with diabetes will need more support60, and should be offered a referral to the appropriate mental health or psychosocial services.
- Psychological and physical health may continue to be impacted long after the pandemic has ceased13,61 and HCPs will need to remain aware of these effects into the future.