The lockdown and its consequences—Perspectives and needs of people at increased risk of severe illness from COVID-19

A qualitative longitudinal interview study was conducted with individuals from different parts of Austria. Qualitative research is used to explore patients’ perspectives and understand reasons and motivations for behavior as well as preferences and values without imposing a preunderstanding [9]. After the first confirmed cases of COVID-19 in Austria on 25 February 2020, the Austrian government ordered nationwide restriction measures from 16 March 2020 onwards. Until mid-April, public life in Austria remained severely restricted by these measures before the first easing measures were implemented [10].

People older than 65 years and those affected by a chronic health condition, such as heart disease, diabetes, cancer, chronic lung disease and/or any immunodeficiency, were eligible for the current study. Exclusion criteria were insufficient language skills to participate in the interviews (either German or English language) and severe hearing and/or cognitive impairments that would make telephone interviews unfeasible. A maximum variation strategy regarding gender, age, educational level, comorbidity, living situation, and other socio-demographic characteristics was applied [11]. Qualitative research typically uses small sample sizes with a diverse range of participants to explore people’s personal experiences and views on a specific topic in depth [12‐14]. Purposive sampling was used as it focuses on particular characteristics of a population of interest and therefore allows identification and selection of information-rich participants [15, 16].

Eligible individuals were identified by patient organizations, geriatric institutions, health professionals and those who participated in the interviews themselves. Appointments were made for remote interviews with participants. The most widely used principle for determining the appropriate sample size and evaluating its sufficiency in a qualitative study is data saturation [17], defined as “the point in data collection when new data no longer bring additional insights to the research questions” [18]. Data analysis started when the first transcripts were available and proceeded parallel to data collection to determine the point of saturation [19]. Despite different approaches in defining data saturation, researchers agreed on some general principles and concepts: no new data, no new themes, no new coding and the ability to replicate the study [20]. In our study, recruitment continued until data saturation was reached, which was defined as no new concepts coming up in at least 10 subsequent interviews [13, 20, 21].

The study was approved by the Ethics Committee of the Medical University of Vienna (EK Number 1388/2020). Participants were informed about the study’s purpose and procedures and provided written informed consent by postal service or email in accordance with the Declaration of Helsinki [22].

Two remote, semi-structured interviews were held with every participant. The research team, including patient research partners (GS, EL), co-developed, piloted and finalized the semi-structured interview guide for the remote interviews [23]. The interview questions focused on people’s perspectives, needs and preferences regarding the impact of COVID-19 measures on their mental and physical health, autonomy, social connectedness, activities, and work/productivity in daily life (Table 1).

The interviews started during the first lockdown, while the follow-up interviews were conducted in early May 2020 after the government eased measures for the first time. Therefore, the follow-up interview questions were adjusted for the different situation and the initial findings from the first interviews. The first author (EM) experienced in qualitative research data acquisition and analysis, performed the interviews. All interviews were conducted in German, audio recorded, transcribed verbatim, and analyzed centrally in Vienna, Austria, by EM with input from the research team.

Thematic analysis of qualitative data followed a modified form of “meaning condensation” [23], facilitated by using ATLAS.ti software developed by ATLAS.ti Scientific Software Development GmbH, Berlin, Gemany [24] to organize the data. The analysis comprised the following procedures: in a first step, all transcripts were checked against the audio recordings for accuracy and read several times to gain a broad understanding. After familiarization, data were divided into meaning units (defined as specific parts of the text, a few words or a few sentences with a common meaning). Subsequently, initial codes were assigned to these meaning units. Associated codes were then grouped into lower level concepts. In a final step, the lower level concepts were summarized into higher level concepts. Based on the biopsychosocial model proposed in the International Classification of Functioning, Disability and Health (ICF) and used as a frame of reference in this study [25], the concepts that emerged from the qualitative analysis were used to derive proposals for strengthening resilience that might lead to good individual and community health outcomes [26].

Descriptive statistics were calculated to summarize the characteristics of participants by using R (www.​r-project.​org). Metric variables were tested for normal distribution. In the case of non-normally distributed data, we depicted medians and interquartile ranges (IQR) in addition to mean values and standard deviations (SD).

Several strategies were used to enhance the trustworthiness of the qualitative data [27]. Data triangulation was achieved by interviewing persons of different ages, various diseases and disabilities, rural and urban areas and comparing findings to scientific literature and policy documents throughout the project duration [28]. Reflective memos and debriefing notes were recorded after each interview. Moreover, the first four interviews were independently coded by another experienced investigator (VR). After analyzing all interviews, the results were reviewed and discussed with all researchers and patient research partners (GS, EL), who were not involved in the analysis of the transcripts, until consensus was achieved. Original quotes used for publication were translated from German into English by a bilingual native speaker (MA). Following the translation, data were checked to avoid any translation mistakes by the first author (EM). Finally, we reported the results according to the consolidated criteria for reporting qualitative research (COREQ) checklist ([29]; supplemental table A).

Thematic saturation (supplemental table B) was reached after including 33 individuals with a mean age ± standard deviation (SD) of 73.7 (±10.9) years. Two telephone interviews with each participant were conducted between 8 April and 15 May 2020. The typical participant was female (75%), had a cardiovascular (39%) and/or musculoskeletal (45%) disease, and was retired (88%), see Table 2. Key characteristics of each participant are depicted in supplemental table C. In total, 27 h and 30 min of interview time were collected (mean duration was 25 min), resulting in 220 pages of transcript. We extracted 44 lower level concepts and summarized them into six higher level concepts (Table 3).

The participants expressed a general positive attitude towards measures that have been taken to mitigate the spread of COVID-19. Some people felt particularly well protected under strict home isolation and appreciated positive aspects of the crisis that helped them better cope with this exceptional situation. They had been offered support from their families, carers, neighbours, and other people they had not known before. Several participants even experienced increased connectedness and cohesion in times of the pandemic, like a 73-year-old woman (No 9) who said:

And still, I feel better now, because I have much more contact with people, even if it is only by phone. They ask me how I am, what I’m doing. It’s good for my well-being.

Moreover, some people found more time to relax, tried out new activities during home isolation, and supported others to better deal with this exceptional situation. In the absence of regular treatment and therapy, several study participants (8,24%) reported increased self-management regarding their health.

Strict home or community isolation was described as an experience of being “captured and imprisoned”. A 90-year-old man (No 19) living in a geriatric facility experienced this situation as follows:

We all yearn to sit at a table at noon and talk. To be locked up in a room and eating alone is kind of torture.

A woman (No 11) at the age of 79 years who lived independently in an assisted-living facility described a situation in which she felt at the mercy of others as follows:

They lock us up in here and won’t let us out. Security is down there around the clock. We have to stay in our apartments and can’t have any contact with the outside world, except for by phone. That’s no kind of life!

Almost one third of the participants (10, 30.3%) reported a significant deterioration in their health status caused by reduced routine care and therapy during the lockdown. In their view, health care changed dramatically from one day to the next, and there were only a few telehealth offers. A 64-year-old woman (No 5) with a physical disability said:

I notice that the longer this goes on, the more difficult it becomes, physically and mentally. Especially physically. My body doesn’t work that way anymore. I stumble through the cramps more often, although I really do my exercises umpteen times a day at home and I am really active, but I can’t compensate for this alone, I lack the therapy.

People with already existing health problems lacked medical care, treatment, and supply of assistive devices and regular personal contact with their physicians and therapists during this period; however, some people cancelled therapeutic interventions and home care services themselves out of fear of infection with SARS-CoV‑2, which led to an enormous additional burden in everyday life. One woman (No 28) at the age of 81 years, suffering from multiple health conditions herself, described the reasons for cancelling her husband’s care:

We were afraid; the carers have children or go to people who are even worse off than my husband. […] Now I just have to find a way to wash him.

Some people reported that particular adaptations of COVID-19 measures would have made it easier to implement them. More than half of the participants (18, 55%) in this study had problems following basic COVID-19 protection measures due to their functional limitations in daily life. They could not wear masks because of physical impairment, had panic due to past traumatic experiences when wearing masks or experienced breathing difficulties. Moreover, participants described barriers to implementing basic hygiene measures, such as disinfection stands which are often not accessible for people using wheelchairs or persons of small stature. Like a woman (No 5) aged 64 years with restrictions in her mobility, some people also experienced difficulties in enacting physical distancing because of additional support needs.

I need some personal assistance while walking because I feel much safer then, but this is not allowed. So, my only option is the wheelchair or not playing by the rules.

Others also experienced difficulties in communication due to the use of face masks and Plexiglas barriers. One female participant (No 8), who had to stay in hospital for a few days, talked about washbasins that she could not reach:

I am 106 cm tall and have difficulty reaching the sink in the hospital. And then they always tell you to wash your hands. I asked if they could please bring me a bottle of disinfectant, but they said, “No, we can’t do that—no distribution to patients”.

Although most participants in this study (25, 76%) have stayed connected and maintained their social networks in a non-face-to-face way, they still suffered from the ban on meeting others in person. They emphasized the importance of personal contact and closeness. From their perspective, prohibiting physical contact and closeness led to social isolation and deprivation, which constituted a massive threat to people’s physical and mental health. They reported increased confusion, malnutrition, sadness, increasing desperation and lack of physical activity among relatives and friends they were no longer allowed to visit. They felt that especially older adults, people with cognitive impairment, hearing problems, and those who were seriously ill or dying, have been abandoned during the first weeks of the pandemic, and nobody cared. A woman (No 3), 65 years old, gave the following example:

… and then people like my aunt at 103 years die due to isolation or loneliness, or depression because they are so alone. This just can’t go on! Something must be done quickly.

People reported that they repeatedly had to weigh up how much information they needed not to be misinformed or overloaded or become highly concerned about their own health or bored. A 75-year-old man (No 29) expressed his experience in the following statement:

… it gets on my nerves, this constant information about things I already know. I think there are already more experts than corona patients. So I’m switching off immediately.

Some participants felt that the information they received was not sufficiently concise and relevant to their underlying conditions. This was perceived as a potential risk to their personal health. For example, a woman (No 23) at the age of 46 years with severe lung disease, the information provided by the government did not meet her needs.

I think this information about the course of the disease was somehow minimal. I would like to have a more informed discussion of the facts. Instead, we were treated as minors.

Only one third of the participants (11 out of 33) were concerned about possible economic consequences that might affect them personally.

Almost all participants welcomed the easing of measures that took place between the first and subsequent telephone interviews. Over time, however, they experienced (i) an increasing concern about misconduct by others regarding compliance with infection control measures, (ii) increased levels of loneliness and depression, (iii) a feeling of being overwhelmed or bored by the amount of information provided about the pandemic and the measures taken to mitigate its effects and (iv) difficulties in adhering to specific measures due to their functional limitations/disabilities when they started to leave home again.

The higher level concepts were mapped to 29 ICF categories in total; 4 (14%) related to body functions and 1 (3%) to body structure, 17 (59%) to activities and participation, and 7 (24%) to environmental factors (Table 4). The pandemic and the measures to mitigate its impact thus affected all components of functioning and health specified in the ICF classification.

This highlights the importance of adaptations in the physical, social and attitudinal environment in which people live and conduct their lives for better functioning and health of individuals. The participants mentioned several actions that could help increase compliance with the measures (Table 4, far right column). In their opinion, some environmental adaptations, such as more accessible holders for disinfectants in offices and shops for wheelchair users, and user-friendly digital technology to overcome social isolation and maintain access to health care providers despite lockdown, could have a significant impact on the extent to which people at increased risk of severe illness from COVID-19 comply with risk reduction measures. Those actions could help to prevent collateral health deterioration in this group of people.