Living with Parkinson’s in England during and beyond COVID-19 restrictions: a longitudinal qualitative study

Abstract

Objectives

Government-enforced lockdown restrictions associated with preventing the spread of the COVID-19 virus had a series of unintended, negative effects. One group of individuals whose physical and mental health was significantly and disproportionately impacted were those with Parkinson’s. However, research has been mainly cross-sectional, with no previous study qualitatively following up participants through both lockdowns and the easing of restrictions. Consequently, this study aimed to provide a detailed understanding of the experience of lockdowns and the easing of restrictions on the physical and mental health of people with Parkinson’s.

Method

Data from semi-structured interviews collected at four time points across an 18-month period (May 2020 – September 2021) from the same participants (six men and four women) were analysed using interpretative phenomenological analysis.

Results

Three themes were derived: (1) Wrestling with a Parkinson’s identity, agency and control during the pandemic; (2) The encroachment and acceleration of a Parkinson’s future; and (3) Recalibrating priorities from COVID-19 to Parkinson’s.

Conclusion

As currently the only published study to provide an in-depth longitudinal analysis with this population, we used a more dynamic theoretical account, Strauss and Corbin’s theory of illness trajectories, to understand the findings and suggest ways of supporting individuals with Parkinson’s in this stage of the pandemic. The scale and breadth of the support needed is a significant challenge for current statutory systems.

Keywords:

• Parkinson’s disease
• qualitative
• COVID-19
• longitudinal
• illness trajectories

Introduction

To prevent the spread of SARS-CoV-2 (henceforth COVID-19), travel and movement restrictions were implemented globally at the start of the pandemic, although the strictness of lockdowns varied between countries (Papadopoulos et al., 2020). In England, where the present research was conducted, by March 26^th, 2020, all non-essential shops were closed, as were schools. Social distancing restrictions were enforced, with the public permitted to a daily walk for exercise, and individuals were required to wear face masks when in public places (such as when shopping) (Baker et al., 2021). A gradual easing of restrictions occurred during May (people who could not work from home could return to the workplace but were encouraged to avoid public transport), June (phased re-opening of schools in England, non-essential shops reopen), July (reopening of pubs, restaurants, hairdressers), and August (including reopening indoor theatres and bowling alleys). In September 2020, indoor and outdoor social gatherings above six were banned in England, there was a return to working from home and a 10 pm curfew for the hospitality sector. A second national lockdown came into force in England on 5th November, this ended 4 weeks later on 2nd December. On January 6th, 2001, England entered a third national lockdown. In early March 2021, schools in England reopened for primary and secondary school students. Recreation in outdoor public spaces was allowed between two people but a ‘stay at home’ order remained in place. By mid-July 2021, most legal limits on social contact were removed and the final closed sectors of the economy reopened (e.g. nightclubs).

In addition to the above restrictions for general members of the public, individuals who were categorised as ‘clinically extremely vulnerable’ due to the severity of their health condition were advised to stay at home and receive help from others for any needs, such as shopping or medication (The Health Foundation, 2021). A further group, whose illnesses were less severe, were seen as ‘moderately vulnerable’. Additional social distancing was advised for this group but, at least at the start of the pandemic, guidance was otherwise unclear and additional help was not immediately available.

While these restrictions were difficult for many, for those with chronic illnesses the restrictions posed much greater challenges due to disruption to healthcare appointments and routine daily activities (Topriceanu et al., 2021). One chronic illness for which restrictions were particularly hard to manage was Parkinson’s disease (henceforth Parkinson’s). An estimated 121,000 people have Parkinson’s in England (Parkinson’s UK, 2018). It is a progressive neurological condition which initially affects motor function (e.g. muscle stiffness, tremors, and slowness of movement). Other difficulties, for example with mood, cognition and physical functions such as sleep and eating, can also occur. As there is no cure, people with Parkinson’s focus on managing their physical symptoms (e.g. tremors, stiffness, slowed movement) and the associated psychological distress through a mix of professional health care support, physical activity, and social and informal support (Soilemezi et al., 2023). People with Parkinson’s become experts in developing routines to optimise their physical and mental health (van der Eijk et al., 2013). However, as Parkinson’s progresses, they must amend their daily routine and medication regimes; medication regimes lose their effectiveness and physical abilities deteriorate (Lamont et al., 2012; Oliveira de Carvalho et al., 2018). Therefore, it is important for people with Parkinson’s to monitor all aspects of their health and routines to manage most effectively their Parkinson’s symptoms and wellbeing.

When lockdowns were initiated, many people with Parkinson’s reported reduced physical exercise and social activity (Simpson et al., 2020), and lost access to healthcare to amend their medication as needed, as well as the general support and guidance offered by healthcare professionals, friends and family (Brooks et al., 2021). This had a predictable and rapid effect on symptoms internationally. For example, in Italy, a survey reported that, of 162 people with Parkinson’s, 28% reported a worsening in their Parkinson’s symptoms (e.g. tremors) within 2 weeks of lockdown being implemented (Schirinzi et al., 2020). Similarly, in France, Fabbri et al. (2021) reported that 45.5% of people with Parkinson’s (from a sample of 2653) reported worsening of at least one symptom during the first lockdown. Findings by Simpson et al. (2020) also reported a worsening in Parkinson’s symptoms (39% of the sample reported slowed movement and stiffness) within the first month of the UK lockdown. While deterioration is an expected outcome for those with a neurodegenerative condition such as Parkinson’s, the consistent reporting of this level of deterioration in such a short time period is strongly suggestive of the major impact of the lockdown restrictions.

Given the above, it is, therefore, perhaps unsurprising that a quantitative study by Dommershuijsen et al. (2021) in the Netherlands found that during COVID-19 feelings of anxiety and depression were prominent in people with Parkinson’s, especially for those with severe and/or multiple Parkinson’s symptoms. In India, a quantitative study by Kumar and Dwivedi (2020) also reported high levels of anxiety and depression by people with Parkinson’s. Similarly, a survey by Simpson et al. (2020) on a large UK sample reported that feelings of anxiety and depression were common in people with Parkinson’s, who also reported lower levels of wellbeing during lockdown compared to the general population.

Additionally, Simpson et al. (2020) reviewed free-text responses from their survey to understand the experiences of people with Parkinson’s for the early period of lockdown (the first two months after lockdown was initiated). While some people with Parkinson’s with severe disease fell into the ‘clinically extremely vulnerable’ category, most did not, so did not receive any immediate help. Participants described how the lack of access to health and statutory services left them feeling ‘abandoned’, ‘invisible’, and/or ‘ignored’. They also relayed their difficulties in accessing everyday necessities (e.g. shopping) and the anxiety caused by the uncertainty surrounding COVID-19 and how it would affect their Parkinson’s. Similarly, Cavallieri et al. (2021), using open-ended survey questions for people with Parkinson’s living in Italy, found they struggled to access healthcare appointments, and expressed feelings of fear and anger about going through lockdown and being unsure if they would receive the necessary care if they contracted COVID-19. Moreover, in Canada, Anghelescu et al.’s (2021) thematic analysis of 22 semi-structured interviews, found that people with Parkinson’s experienced limited and uncertain access to healthcare, exercise loss, isolation, and worsening Parkinson’s symptoms during lockdown.

The above findings illustrate the varied and significant effects of lockdown on people with Parkinson’s symptoms and wellbeing, but do not show if or how the experience of lockdown changed for them as lockdown progressed and restrictions started to ease. This is an important empirical omission as understanding the lived experience of those with a chronic progressive condition, in a highly variable and fluctuating context, is clearly limited by a single time-point assessment (Wildman et al., 2022). Consequently, the current study aimed to address this issue by exploring the lived experiences of people with Parkinson’s in England on four occasions across 24 months, and to understand how participants’ sense-making of events developed over time.

Method

Design

This study aimed to explore how people with Parkinson’s in England experienced and made sense of living with Parkinson’s during the most severe COVID-19 restrictions and how this evolved as these restrictions eased, then strengthened, then eased again. To achieve this, the methodological approach taken was interpretative phenomenological analysis (IPA, Smith et al., 2009). The philosophical underpinnings of IPA are principally derived from phenomenology (elucidating lived experience) and hermeneutics (emphasising the interpretative activity of participants and researchers). IPA has an idiographic focus that explores commonalities and divergences in the experiences and sense-making of small, well-defined, homogenous samples (Smith & Osborn, 2008). However, IPA is also an approach which understands experiences and sense-making as temporally grounded and orientated: ‘our personal accounts are concerned with human potential and development, with making our lives by connecting the past with the present and future’ (Eatough & Smith, 2008, p.185, emphasis added).

Although IPA often involves a single point of data collection, where the material circumstances (here, lockdown and other restrictions and the progressive nature of Parkinson’s) that underpin the phenomenon of interest are dynamic, then longitudinal IPA (LIPA) (involving multiple data collection points) can help identify any experiential and sense-making changes over time (Farr & Nizza, 2019). For the present study, which sought to understand the experience and meaning-making of living with Parkinson’s during COVID-19 restrictions, a LIPA approach was adopted as it was important to be able to capture any changes in lived experience that were occasioned by changes in these restrictions.

Sampling and participants

The idiographic focus of IPA, in which phenomena are explicated in depth for a small number of cases, makes homogeneity within the sample a fundamental requirement of IPA (Smith & Osborn, 2008). The key parameters regarding this for recruitment in the present study were that participants were adults, living in England (to minimise variation of lockdown restrictions) and had been diagnosed with Parkinson’s prior to the pandemic.

Participants were recruited through the Parkinson’s UK Research Network. Recruitment took place over a 6-week period and the first interviews were completed within two weeks of agreeing to take part. Twelve individuals initially showed an interest in taking part but two could not be included as one lived with a diagnosis different from Parkinson’s, and the other could not be further contacted. Ten participants took part in the study (6 males, 4 females—see Table 1). All participants were White British and living at home, with one participant receiving paid care for support for their Parkinson’s. The mean age of participants was 63.8 years, with an average of eight years since their Parkinson’s diagnosis. All interviews took place via telephone due to the restrictions in place at the time of interviewing.

Table 1. Participant demographic information.

Pseudonym	Age	Gender	Time since Onset (Years)	Living Status	Main Reported PD Symptoms
Jack	67	Male	13.5	Lives alone (carer 24/7)	Poor balance, shuffling, hallucinations
Andrew	60	Male	6	Lives alone	Resting and action tremor, impaired fine motor skills
Josh	59	Male	5	Lives with wife (and daughter during lockdown)	Resting tremor
Caroline	63	Female	6	Lives with husband	Rigidity, shuffling, freezing
Derek	66	Male	11	Lives with wife	Shuffling, fatigue, difficulty walking, falls, loss of smell, memory problems.
Alice	65	Female	12	Lives with husband	Tremor, falls, freezing, dyskinesia.
Brian	62	Male	3	Lives alone	Loss of strength in left leg and hand, loss of synchronisation in the left leg and hand, rigidity, fatigue
George	63	Male	Unable to pinpoint	Lives with wife (and daughter during lockdown)	Posture problems, pain, shuffling
Beth	71	Female	7	Lives alone	Tremor, freezing, pain, poor movement coordination, poor blood circulation
Sarah	62	Female	Unable to pinpoint	Lives with husband	Falls, freezing, poor movement coordination.

Data collection

Participants were interviewed at four different time points. At time 1 (T1), interviews were completed in May 2020, two months after COVID-19 lockdown restrictions were first initiated (restrictions were at their strictest during this time period, with all non-essential organisations closed and hospital appointments cancelled). At time 2 (T2), interviews were completed in August 2020, two months after the first lockdown period ended and restrictions had eased, with shops re-opened and social restrictions lifted. At time 3 (T3), interviews were completed during the third lockdown period, 12 months after T1 interviews were completed (May 2021). Finally, at time 4 (T4), interviews were completed in September 2021, three months after the final lockdown period ended and all restrictions had been removed.

Semi-structured interview schedules were created at each time point to provide a flexible structure for the interview to allow participants to identify and direct as much as possible the topics of salience for them. For the first interview, the topic sheet was created by including a set of questions that encouraged participants to reflect on life before and after the restrictions that began in March 2020. These included (for daily life before the COVID-19 outbreak) ‘What did your daily life look like before March?’, ‘What activities did you engage in day-to-day?’, ‘What contact did you have with people? (in person, phone, Skype, etc.)’, ‘How active were you? (including physical activities, social activities)’, and ‘How would you describe your health before March 2020?’. Participants were then encouraged to compare these experiences with the changes brought about by COVID-19 restrictions, through questions such as ‘How does this compare to your daily life before March 2020? How do you feel about these differences?’

For subsequent interviews, the topic sheet from T1 was used, with personalised additions derived from previous interviews for each participant (e.g. ‘in our last interview you spoke about X, how has that changed for you?’). Therefore, interviews were largely directed by participants’ responses, with the topic guide providing prompts to stimulate conversation when necessary. All interviews were completed via telephone, audio recorded and transcribed verbatim.

Data analysis

In order to provide a thorough and detailed analysis trail that could be audited and refined by the research team, analysis of all T1 data followed the guidelines detailed by Murray and Wilde (2020), which are closely aligned with those of Smith et al. (2009). In accordance with these, to begin with, each transcript was read several times (to aid familiarisation with the data) and analysed in isolation without considering themes derived from other transcripts. A column was added in parallel to the transcripts to add notations on information relevant to participants’ experiences of living with Parkinson’s through the pandemic and associated restrictions. Notations varied from direct quotations (e.g. ‘it feels like you’re a prisoner in your own home sometimes’), paraphrasing participants’ description of the subject matter (e.g. ‘participant felt flat during lockdown’), and initial interpretations of participants’ sense-making of the topic (e.g. ‘participant struggling to adapt to lockdown ending’). This process was completed for all transcripts and narrative theme summaries were developed for each participant. Next, analysis proceeded to look across transcripts/analysis for areas of commonalities and divergences. Following this, an integrated, interpretive narrative summary was developed for each cross-participant theme.

Next, following the ‘themes spanning time’ approach described by Farr and Nizza (2019), analysis of T2 data focused on individual participant themes derived at T1 to explore how the initial themes had evolved between the two interview periods. This process was repeated for T3 and T4 interviews. Finally, themes across all time points were synthesised into longitudinal themes spanning all time points, with narrative theme summaries being updated accordingly. The narrative expression of each theme progressed in a linear manner to show the evolution of participants’ sense-making of their specific topic while considering similarities and variation from sense-making at earlier time points. The across-time-points analysis approach used in the current study for synthesising LIPA themes, which was used by 39% of LIPA studies examined by Farr and Nizza (2019), created themes that described the progress of evolution of a specific experience over multiple time-points, which was described as ‘themes spanning time’.

Ethics

The ethics committee of the lead author’s employing university approved the study (Lancaster University, Faculty of Health and Medicine Research Ethics Committee, approval number: FHMREC19077). Participants gave informed consent. Prior to each interview, participants were reminded of support resources available to them, although no participant expressed any feelings of distress throughout the study. No participant withdrew from the study or requested the removal of their data. As part of the transcription process, all potentially identifiable information were either replaced with pseudonyms or removed from the transcript to maximise participant anonymity.

Results

Three themes were developed: (1) Wrestling with a Parkinson’s identity, agency and control during the pandemic; (2) The encroachment and acceleration of a Parkinson’s future; and (3) Recalibrating priorities from COVID-19 to Parkinson’s. Supporting data excerpts use pseudonyms and indicate the data collection period (T1-T4) in which they were obtained.

Theme 1: Wrestling with a Parkinson’s identity, agency and control during the pandemic

Participants disclosed how during the COVID pandemic Parkinson’s became their most salient, defining characteristic, how this fluctuated as restrictions changed and how, after lockdown ended, most struggled to return to life as previously lived.

Participants’ personal identity, sense of agency and control were challenged by the physical restrictions and reactions of others placed upon them. For example, when lockdown restrictions were first implemented, some of those with severe Parkinson’s were classified as ‘extremely clinically vulnerable’, but most people were seen as being in the ‘moderately vulnerable’ category (Parkinson’s UK, 2020). At the start of the pandemic, guidance for the moderately vulnerable was less clear, but they were strongly encouraged to distance socially from others. However, some participants felt their categorisation as ‘vulnerable’ did not reflect their own perceptions of their health: ‘I don’t know, I’m in this medium, high-risk register, but I don’t feel medium, high risk because I am fairly young and I have Parkinson’s’ (Josh, T1). Josh wanted to work, but was informed by his employers that he should not:

I volunteered immediately for that [to return to work during lockdown] and they were very nice about it, I couldn’t say, you know, just… put a blame, ‘you can’t do it’, I was made to realise that I was sort of, not trouble, but indicated quite strongly that perhaps I shouldn’t… (Josh, T1)

Therefore, participants became defined by their Parkinson’s, with their sense of agency and ability to make choices being reduced. For example, when asked how he was feeling during the first lockdown, George responded: ‘I would say a bit, less in control. Because the world is going on around you. And because I’m labelled as someone with a problem, who is vulnerable.’ (George, T1).

When lockdown restrictions eased (T2), shops re-opened, and socialising was allowed in small groups. The easing of restrictions reduced the salience of Parkinson’s as participants’ defining facet of their identity, giving them more control: ‘I think it’s a massive plus that you can do things now that you couldn’t do, even if you don’t want to or you, you got the choice that you can at least try and do it.’ (Andrew, T2). When lockdown restrictions were reinstated (T3), non-essential shops closed and socialising was, once again, prohibited. These restrictions reduced participants’ available scope of activities, with Brian describing his lockdown lifestyle as occupying a ‘very narrow spectrum’ in contrast to when restrictions had eased. Similarly, Alice spoke about how she felt trapped in her own home:

It feels like you’re a prisoner in your own home sometimes. My husband goes to a local supermarket around the corner, occasionally, late in the evening or early morning, avoiding people, you know. (Alice, T3)

Alice’s description of herself as a prisoner in her own home exemplified her loss of control over her decision-making processes during lockdown; her husband—who was not categorised as ‘vulnerable’—was able to go shopping and perform basic daily tasks, whereas Alice was not. Therefore, Alice was a prisoner to her ‘vulnerable’ status and, by extension, to Parkinson’s. This is indicative of participants’ feelings during the second lockdown and, therefore, it is unsurprising that participants spoke about how this lockdown adversely affected their wellbeing: ‘well, I just feel a bit flat, emotionally sometimes.’ (Brian, T3).

Following the end of lockdown (T4), participants spoke about how they were once again able to make decisions about their activities. For example, Caroline spoke about how she and her husband went out for meals most weekends without any restrictions:

What’s changed? Oh, we’ve been going out more certainly, we’ve been going out for meals most weekends, went to a wedding on Saturday that was a good do with like no restrictions really so that’s different. I thought at first I would be more anxious than I have been, you know, coming out of lockdown and going out again and socialising and having to get ready to go out, all that sort of stuff but I seem to have slipped into it quite reasonably, you know, without too much problem at all.

In contrast, Sarah and her husband chose to continue wearing masks for protection when going out but emphasised it was their decision:

And, yeah, it’s [Parkinson’s] not really stopped us doing very much since the lockdown eased, but my husband and I took the decision we were still wearing a mask to go out, especially to the supermarket or to the pub, we always wear our masks as much as we can. When we went shopping this morning, we had our masks on and are still trying to be cautious. (Sarah, T4)

For Sarah, continuing to wear a mask in public did not cause her stress as it was her decision, as opposed to the restrictions being imposed upon her. Participants’ struggles through lockdown were not attributed to the restrictions per se but to the loss of control that the conferment of vulnerable status had effected.

The ending of lockdown restrictions also allowed participants to return to work and socialise with others without their ‘vulnerable’ status being relevant:

Like when it [COVID-19] first started back in January or whatever it was, 2020, people were saying to me things like, ‘Should you even be here?’ Sort of thing, but that’s a while ago. Nobody does that now. Nobody has done for a while. (Josh, T4)

Participants also spoke of the lasting psychological effects of lockdown. For instance, Andrew spoke about how going through lockdown made him feel subdued and helpless, feelings that had not fully subsided despite lockdown ending:

And I’ve become institutionalised being in, so I’ve sort of like taken the bull by the horns and said, ‘Well I want to go out at least once a week and maybe socialise and maybe do some physical activity’. That keeps me going. So, I lost a little bit of confidence. I’ve lost a lot of confidence over the years, but I lost more, and I felt a bit sort of subdued and more helpless really. But things have improved because you’re able to go out and mix, as I said, and you’re starting to get networking again with people that you know. So, it’s getting better and hopefully it’ll continue. (Andrew, T4)

Similarly, Brian spoke about the psychological effect of lockdown on his wellbeing, and how it made him more reluctant to see people:

Psychologically I think it must have done [lockdown affecting participant], I wouldn’t like to quantify them or to describe them but I think it’s made everybody… well, it’s made me a little bit more insular, not to the extent where you avoid people out in public, you don’t become agoraphobic because it’s not that you don’t want to leave the house, I’m definitely more wary round people, yeah. (Brian, T4)

Therefore, for most participants, the ending of lockdown did not represent a return to normality; lockdown had fundamentally affected participants’ sense of personal control and made them more conscious of their Parkinson’s. Parkinson’s was the defining aspect of their identity, with subjugation to this taking away their agency. Additionally, findings emphasised how managing with these challenges longitudinally impacted on participants’ physical and mental health during and after the restrictions had ended.

Theme 2: The encroachment and acceleration of a Parkinson’s future

Participants recounted their perceptions that the severity of their Parkinson’s symptoms increased as lockdown progressed due to the loss of their daily activities. Acknowledging that their Parkinson’s symptoms had worsened was considered by participants to be important in addressing the distress caused by lockdown and reintegrating into society.

Participants’ daily routines were essential for them to remain grounded in the present and to keep a negative anticipated future in the distance:

I had a good routine and of course, when the lockdown came, that all stopped. So, I’ve had to sort of get into, build my own routine, myself, my wife and my daughter, we try and sort of, kind of make it so that there is a differentiation between the weekend and the week. (Josh, T1)

When lockdown restrictions were implemented, participants lost most of their usual daily activities, with health appointments cancelled and social activities curtailed. It is, therefore, unsurprising that the limited activities participants could do received greater priority. For George, his focus was fishing:

Fishing is the only enjoyable thing I have these days. I probably have, you know, an obsession so I’m thinking ‘this is the only pleasure I’m getting’, I’m gonna do it come hell or high water. (George, T1)

Continuing some of their usual activities during lockdown represented an opportunity for participants to retain their autonomy and feel more in control of their Parkinson’s progression. For those who did not have access to their activities, they became listless and noted a deterioration in their wellbeing. Their Parkinson’s became a barrier to regaining more valued activities and a sense of wellbeing: ‘I’ve become more dormant, more lethargic and I’m hoping that when everything’s lifted and we go back to the walking, my health will come back to me, but with the Parkinson’s, I’m not sure about that really’ (Brian, T1).

Participants were not prepared for the sudden and unexpected disintegration of their daily routine caused by lockdown. This caused them to feel ‘stuck’, giving Parkinson’s more dominance and control of their lives, leaving participants helpless and waiting for lockdown to end. By disrupting participants’ daily routines, lockdown both made Parkinson’s the foreground of their lives (as in theme 1) and brought their anticipated, negative future closer: ‘You’re conscious of the timescale [of Parkinson’s] I suppose, you don’t want to leave things too late in case you do deteriorate, but that’s not something I want to think about’ (Caroline, T2). Despite this, participants expressed the benefits of being able to return to their pre-lockdown activities, which helped combat physical decline related to Parkinson’s. For example, Beth expressed her relief at being able to go for daily walks again:

One [benefit of lockdown easing] is that when I was feeling so rotten, the movement became quite dizzy, I was very slow, and I could tell that I wasn’t walking well or anything. So, just to be able to walk each day gets a bit better as you walk. (Beth, T2)

When lockdown restrictions were reinstated (T3) participants, once again, were limited in the activities they could do. For example, Andrew spoke about not wanting to remain indoors but was unable to go out which affected his confidence: ‘I think what I used to do is I used to go out because I didn’t want to just sit in the house and just smoke. But, when you’ve been unable to go anywhere (…) the confidence is low with Parkinson’s. Confidence is even more low now because you’re, you’re anxious about going out’. (Andrew, t3).

As at T1, participants’ daily routines were taken away by the restoration of lockdown restrictions. However, they felt their Parkinson’s symptoms had deteriorated beyond the levels observed at T1. Consequently, these further lockdown restrictions were felt to make Parkinson’s even more encompassing of their daily lives than previously experienced at T1, with participants feeling less confident about leaving their homes:

I think inactivity obviously affects your Parkinson’s because you’re not moving around, you’re not getting any sort of like schedule to your day and so you become stiff, you become rigid, you become slow and you become fatigued and you go into a cocoon really and you’ve got to sort of like make sure you don’t sort of like just fall into some trap where you won’t be able to get out of. (Andrew, T4)

The above findings highlight how participants were unprepared for the unexpected and sudden disintegration of their daily routine and experienced that their Parkinson’s had become more encompassing of their lives. Participants were unsure if they could return to their pre-lockdown activities due to the deterioration in their Parkinson’s symptoms during lockdown. This made them reticent to return to their pre-lockdown activities after lockdown ended. Being unable to do pre-lockdown activities as before confronted them with an impending anticipated, negative future that they had previously coped with by ‘holding’ it in the distance.

Theme 3: Recalibrating priorities from COVID-19 to Parkinson’s

Participants explained how during lockdown they prioritised protecting themselves from COVID-19 at the expense of managing their Parkinson’s. However, they recalibrated their priorities from COVID-19 to Parkinson’s after receiving their COVID-19 vaccinations as the perceived risks associated with COVID-19 were lower. Additionally, participants relayed their struggles after lockdown ended, with fewer resources available to support them, and a perceived deterioration in their own health. When COVID-19 emerged, participants were unsure how it would impact their Parkinson’s and searched for information on this:

There’s always the worry the Parkinson’s may erm [worsen during lockdown], and there’s, there’s a thing on the [online support] forum about ‘will we be more affected because of Parkinson’s?’ (Derek, T1).

Participants lacked information, understandably given its novelty, on how COVID-19 would interact with their Parkinson’s and what the long-term effects would be, which caused considerable anxiety:

I’m worried about the virus, I’m concerned about the test implications… we don’t know whether we’ve had it, whether we’re immune from it, whether we got it, you can have an asymptomatic version of it when you can have it and you don’t even know about it. I find that quite stressful, not knowing, I’d rather know. I sometimes find myself almost wishing that I could catch it and get it over with, but that’s a dangerous thought process. (Brian, T1)

Participants remained under strict lockdown conditions and ventured out only when necessary. The home represented safety, and to leave home was to risk contracting COVID-19:

So, we thought, well, we must be able to go out, shop and what have you, but we weren’t comfortable with it. … And we only went out when we were desperate, which wasn’t very often at all. And then when we got the letter saying we were extremely vulnerable [due to Parkinson’s], we were in then for the duration and we’re still in. We haven’t been out anywhere other than the garden. (Alice, T1).

When lockdown restrictions eased (T2) participants were able to return to some of their pre-lockdown activities. Yet, for some, despite the perceived deterioration in their Parkinson’s, keeping safe from COVID-19 remained their priority as opposed to managing their Parkinson’s symptoms:

Erm, just at the moment, the Parkinson’s, it is what it is, and it’s not a priority. The priority now, in my mind, is to try and, I think the COVID regime has become more of an important impact on my life at the moment than the Parkinson’s is. (Brian, T2)

When lockdown restrictions were reinstated (T3) participants spoke about how their Parkinson’s symptoms worsened. However, unlike at T1, most participants’ priorities had realigned from protecting themselves from COVID-19 to managing their Parkinson’s: ‘So, it wasn’t the COVID that I was anxious about it. It was the getting myself going again, from the Parkinson’s point of view.’ (Caroline, T3). This realignment was stimulated by participants receiving their COVID-19 vaccinations; these gave them more confidence about not having adverse effects if contracting the virus: ‘Yes, whether it’s, God forbid, a placebo or a… But I do feel more confident having had it [COVID-19 vaccination].’ (Jack, T3).

Brian, who had had the virus, highlighted this shifting in priorities from COVID-19 to Parkinson’s. He explained that any deterioration that he could attribute to COVID-19 was ‘lucky’ (because he believed that deterioration could be reversed) compared to deterioration attributed to Parkinson’s, which was ‘unlucky’ (i.e. irreversible deterioration):

With Parkinson’s the tremors have got worse. Again, I can’t say it’s lockdown. Maybe it’s just a general progression. I do feel tired more and more. Again, how much of that will come back to me, when I start exercising more, I’m not sure. I can’t, because I’ve got Parkinson’s, and Parkinson’s like COVID can have so many symptoms, I don’t know what COVID should be, and which overlaps. If I’m lucky it’s COVID symptoms, or lockdown symptoms we should say. If I’m unlucky, it’s Parkinson’s. (Brian, T3)

When the final lockdown ended (T4), participants were keen to address their deteriorating Parkinson’s symptoms and tried to book appointments with their medical consultant to address their issues. Few of them were able to book appointments and they spoke of the prolonged effort required. This process could be too challenging, resulting in them giving up:

I can’t get an appointment with the consultant, I did ring them up and remind them that I was due an appointment […] So, yeah, that’s why I rung the Parkinson’s nurse really, just to sound her out, it was getting to me a bit and frustrating and wanted somebody else’s take on what to do with it, you know (Caroline, T4).

For participants, their consultant and/or Parkinson’s nurse represented security for the management of their Parkinson’s, an outlet to discuss and address any deterioration in their symptoms. However, they felt the presence of COVID-19 had taken this resource from them. Consequently, participants felt their issues were not important to medical professionals: ‘This is just the way it is [struggle to get medical appointments], it’s like everyone’s under so much pressure that no one seems to give a damn.’ (Andrew, T4).

These findings show how participants felt they needed to rebuild their health after lockdown ended. All participants had emerged from what they considered the worse of the virus. However, as they compared their lives at T4 to before COVID-19, they saw fewer resources available to support them and perceived a deterioration in their own health. They were left with significant doubts about whether the new post COVID-19 landscape could support their needs.

Discussion

This study aimed to understand the lived experiences of people with Parkinson’s and their sense-making of the effects on them of events during the cycle of lockdowns and easings put in place in England during the COVID-19 pandemic. The results convey how lockdown restrictions reduced participants’ physical activity and social engagement with friends and family, supporting previous studies (e.g. Fabbri et al., 2021, Schirinzi et al., 2020, Simpson et al., 2020; Song et al. 2020). Previous research has found evidence for the beneficial effects of most forms of physical exercise on the severity of motor signs and quality of life for people with Parkinson’s (Ernst et al., 2023). Similarly, while ‘improving social participation has been an important goal and outcome in rehabilitation-related intervention studies’ for Parkinson’s, motivation for this may be diminished due to feelings of inadequacy, shame, or thoughts of becoming a burden to others because of Parkinson’s symptoms (Ahn et al., 2022, p.266). To the extent that physical and social participatory activities were diminished during the pandemic, then, so too were efforts for the successful management of Parkinson’s.

Beyond the effects on their Parkinson’s symptoms, there was a sense that COVID-19 stripped away participants’ identity (Simpson et al., 2022) to the extent they were viewed by others as primarily a person with Parkinson’s. In losing some of their control and agency over their Parkinson’s they, by extension, also lost some of their ability to manage their life.

Routine daily activities were previously a resource to help manage participants’ Parkinson’s symptoms and delay symptom progression. It is, therefore, unsurprising that, with their removal, participants reported how they felt their speed of progression had accelerated during lockdown (Baschi et al. 2020; Blakemore et al., 2021). Their daily activities were also a means of keeping their Parkinson’s future - when their symptoms would progress and they would become dependent on others (Macleod et al., 2016) - in the distance. However, lockdown forced participants to experience their anticipated future earlier: their Parkinson’s future came closer to the present by the acceleration in the perceived progression of their symptoms.

Finally, participants were uncertain as to how COVID-19 may have impacted on their Parkinson’s symptoms and this uncertainty was a key consideration in their decision-making processes. Participants were aware that their Parkinson’s symptoms were progressing due to their inactivity (see also Martini et al., 2022) but it seemed that they, initially, accepted this. The alternative was potentially to contract COVID-19, which was considered the worse outcome. Receiving COVID-19 vaccinations shifted participants’ priorities from COVID-19 back to their Parkinson’s, with participants attempting to engage with healthcare services to address changes in their symptoms. However, participants struggled to access healthcare services and medication (Cheong et al., 2020), making them feel abandoned (see also Anghelescu et al., 2022, Martini et al., 2022).

As a methodology IPA is largely inductive, with pre-existing theory not used to direct the analysis (Smith et al., 2009). However, the findings of IPA studies can be used to inform theory (Emery & Anderman, 2020). It is useful here to explore findings theoretically and, because of the longitudinal nature of the study, Corbin and Strauss (1985, 1988) theory of illness trajectories is particularly apposite. Theoretically it is also important to consider how changes in context affected people with Parkinson’s view on their illness trajectories and the different types of ‘work’ needed to manage those changes.

The concept of ‘work’ in Corbin and Strauss (1985, 1988) theory of illness trajectories describes how significant input (‘work’) is required by individuals with a chronic illness—but also by both formal and informal carers and health care professionals—to manage the condition. This ‘work’ is required over three domains—the biographical, everyday life, and illness-related. Illness trajectories are understood as not just the course of an illness but also the process of living with and managing a chronic condition in the community. While individuals’ illness trajectories continuously change, social events, such as the pandemic, can cause much more rapid and larger shifts and adaptations (Wildman et al., 2022).

Consistent with the idea that managing a chronic illness requires work across three separate, though related, domains, it is clear that the enforced changes in participants’ lives during COVID-19 affected efforts across the biographical, everyday life, and illness-related domains. In the first theme, the threats to participants’ identity (an aspect of their biography) were significant and, despite efforts to maintain a balance within their identity, with Parkinson’s a salient but not dominant part, these efforts were either not possible or not always successful. Managing everyday life was also a challenge, with social events curtailed and basic activities such as trips to the supermarkets rendered impossible. While, after the lockdowns, work in this domain became less difficult, effects remained for participants due to anxieties around re-entry into normal life and the physical restrictions accelerated during lockdown.

Perhaps the greatest reduction in work was in the illness-related domain, where all participants noted a reduction in access to their ability to work at their illness through self-care and engagement with health care professionals. Indeed, all reported a deterioration in their condition due to the lockdown restrictions, valued routines and activities mainly disappeared and access to health care professionals greatly reduced. Even after lockdown, restoring this work was fraught with challenges due to the on-going difficulties accessing relevant health care professionals.

Moreover, due to the psychological, social and health care effects of the pandemic, the distinction between the three work domains became less clear, with clear ripples across all domains from the same event. While participants clearly made efforts to maximise their work in these areas—to counter the effects of the significant threats—the scale of the changes, and the limitations as to what they personally could influence or effect, resulted in a changed illness trajectory from the one they held pre-pandemic. During lockdown they had seen their anticipated illness future come closer and, while it receded somewhat post lockdown, it still occupied a much more visible and powerful presence.

Other studies have also used illness trajectory theory to explain the effects of COVID-19-related restrictions on people with other chronic conditions. For example, Wildman et al. (2022) conclude that ‘disruptions to an illness trajectory, such as … a global pandemic—can make management more difficult by throwing routines into disarray, unbalancing workloads and creating a “domino effect”; a downward spiral of overwork, fatigue, de-motivation, depression and loss of control’ (p.2). However, the additional contribution of this current study is its ability to evidence these management threats (and responses) as they were experienced by participants in real-time and longitudinally.

Our findings have shown that lockdown restrictions caused overwhelming and often unsurmountable changes to the tasks or work participants needed to complete to manage their illness successfully. This resulted in outcomes consistent with those predicted by Corbin and Strauss—poorer mental and physical health and significant threats to aspects of the self associated with more positive outcomes, namely, a balanced illness identity and a sense of agency or control.

The illness-related aspect of the illness trajectory model has already been successfully applied with people with Parkinson’s to help inform more effective care networks (Sylvie et al., 2021), although not in a post COVID context. However, if we address all three aspects of the work needed by people with Parkinson’s to restore effective management, they could be argued to represent the psychological (in recalibrating identity), the social, occupational and economic (in helping to manage everyday life) and health and social care systems (in helping to manage the illness). However, there is a recognition that these work domains, especially in view of the pandemic restrictions, are inextricably linked. Clearly, addressing all three domains would represent a huge undertaking, involving people with Parkinson’s themselves, their carers, supporting organisations such as charities, and health and social care systems.

Our study had several limitations. Participants were all White British. IPA research aims to provide detailed experiential accounts for well-defined, specific groups and contexts. This means that there are limitations to claims that can be made about the transferability of the findings to other groups and contexts (e.g. geographical regions where responses to COVID-19 and healthcare provision for Parkinson’s may operate differently). In particular, given the added disadvantage people with Parkinson’s from ethnic minority backgrounds often experience (e.g. Dahodwala et al., 2009), this perspective would have been useful. Although one participant was 71 years old, the age range of the remaining participants was 59–67. This is a relatively young group, and therefore a possible limitation of the study is that older people with Parkinson’s may have had different experiences and attitudes, had they been included. All interviews were conducted by telephone and face-to-face interviews may have facilitated richer accounts, particularly as the telephone interview has often been associated with the loss of contextual and non-verbal data (Novick, 2008). However, given the unusual circumstances, doing otherwise was not an option and the potential advantages of telephone interviews in interpretive phenomenological research (inclusion of geographically dispersed participants, logistical barriers or commitments that restrict attendance for face-to-face interviews, and findings regarding the quality and quantity of data between face-to-face and telephone interviews is comparable) have also been noted (Sweet, 2002).

In conclusion, this study explored people with Parkinson’s experiences of lockdown and how their sense-making evolved as lockdown progressed. Findings showed that participants struggled to retain their sense of identity, agency, and control, simultaneously experiencing rapid and unexpected progression in their Parkinson’s symptoms while struggling to access support services to mitigate any symptom change. A whole raft of clinical implications are clear; these include the restoration of at least previous levels of health care services, carefully targeted public health campaigns on relative risk, third sector campaigning which is sensitive in how prominently Parkinson’s as part of individual identity is promoted, and individually-focused support enabling the ‘work’ of managing Parkinson’s disease through facilitating activities and engagement. However, the extent to which all these can be enacted - and when - is currently doubtful. While people with Parkinson’s are resourceful and committed to their role in the management of their condition, the extent to which this can be matched by an equivalent contribution from health and social care services is unclear.

Ethical approval

This project received ethics approval from Lancaster University: Faculty of Health and Medicine [FHMREC] 19077). Informed consent was received by all participants.

Disclosure statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper

Additional information

Funding

The authors gratefully acknowledge the funding by the Rapid Response scheme of the United Kingdom Research Initiatives (Economic and Social Research Council) ref: EP/V055968/1. The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. The views expressed are those of the authors and not necessarily those of the UKRI.