Life after lockdown: loneliness, exclusion and the impact of hidden disability

Ethics

The project was conducted in accordance with the Declaration of Helsinki and received approval from ethics committees at the authors’ respective universities (Ref: 006620). The authors received no specific funding for this project.

Design

This research is placed within an interpretivist paradigm, placing emphasis on understanding the subjective experiences of individuals. We utilised reflexive thematic analysis (Braun and Clarke 2021) and have followed the Standards for Reporting Qualitative Research, available in Supplementary material S1 (O’Brien et al. 2014).

Recruitment and participants

Recruitment information was circulated through third-sector support organisations, stroke support groups and the researchers’ various social media accounts. To be eligible to participate, participants had to be aged above 18 years, living in the UK, and have had at least one stroke in the past. In total, 17 stroke survivors (10 females, 7 males; 45–83 years old; M_age = 63.47, s.d._age = 11.14) agreed to participate in the study. Participant demographics can be found in Table 1. More detailed participant characteristics are available on the Open Science Framework at https://tinyurl.com/strokequol (Dunne et al. 2024).

Participants who volunteered for the study were sent an information sheet and consent form electronically prior to interview, allowing them time to read the study information and decide whether to participate. During participation, this practice was repeated, with the researcher reading the information sheet and consent form aloud, ensuring that participants had comprehended each element prior to participation.

Procedure

Participants were interviewed between January and March 2021, prior to the pandemic restrictions being lifted in the UK, guided by a semi-structured interview schedule. Each interview was attended by two members of the research team. Participants had varying technological experience and confidence but were assisted in using Microsoft Teams by the authors throughout the interview process. Interviews were conducted at least 3 days after initial contact to permit participants a chance to read the study information prior to deciding whether to participate. Interviews typically lasted approximately 40 min (mean = 42.38; median = 42.02; s.d. = 7.32) and were audio and video recorded. All authors had previous experience of working with disabled populations and monitored participants for signs of fatigue and emotional distress throughout interviews; breaks were taken whenever required.

Data processing and analysis

After the interviews were transcribed, C. B. familiarised themself with the data by re-watching the recorded interviews, conducting multiple readings of the transcripts and making notes of preliminary ideas. C. B. independently conducted general coding, highlighting and labelling of any relevant passages of text with descriptive code throughout all transcripts. Similarly coded extracts, along with a description of each code, were placed together in a table to allow patterns of meaning to be explored. Once all transcripts had been coded, authors C. B. and S. D. held collaborative meetings to discuss interpretations of the data, agreeing on codes and discarding any codes deemed irrelevant to the research enquiry. All codes were categorised and subsequently refined into themes. Data and coding within themes were analysed and inter-relationships between themes were visualised. Themes were given names and definitions, and a written summary of the analysis grounded in participant data was constructed. No specialist software was used in this analysis.

Techniques to enhance trustworthiness

The authors followed a 15-point checklist criteria (Braun and Clarke 2006), providing guidance on the processes of transcription, coding, analysis and the creation of a written report to ensure methodological rigour in our qualitative analysis (see Supplementary material S2). Authors ensured that video recordings were checked alongside audio recordings for accuracy, that all data had been given equal consideration, that transcribed data had a suitable level of detail, and that coded items had been collated and checked against the original data set. Additionally, the authors reviewed whether all data had been interpreted rather than summarised and that all analysis matched the data set. The authors employed researcher triangulation after conducting the interviews, discussing and evaluating their impressions of the data but also discussing their experiences of conducting the interview. Finally, C. B. logged their thoughts, motivations, values and assumptions throughout the research process in a reflexive journal.

All authors have a research background investigating ways of improving psychological wellbeing and rehabilitation in stroke survivors. No author has direct experience of stroke, so we are not able to fully understand the impact it has on the lived experience. This may have added to the rigour of this project as we are unable to include our own experiences in the analysis.

Hidden struggles, isolated lives

When discussing loneliness, our respondents spoke more about objective states or events rather than focussing on their subjective feelings when lonely. This often led to our participants focussing on being alone when asked directly about loneliness and how they would define the term or what it means to them.

Being on my own. So, it’s just like being on your own all the time. (Bella, F, aged 76)

In contrast to the physical state of being alone, survivors also experienced ‘identity aloneness’ (Jefferson and Dunne 2023). The stroke had created an awareness of how different they are from who they were before, and from those around them, and this had been exacerbated or set even further back by the imposed lockdown restrictions.

It knocks your confidence, but it also takes away so much independence as well it’s just I feel like a burden… I do worry for my mental point of view like will I ever get the confidence I had built up to even just go out there for a little walk by myself or go to the corner shop or whatever. It’s just so hard. (Fiona, F, aged 47)

Participants’ experiences of loneliness were intrinsically linked to others’ perceptions of their stroke-related disability. The majority of our respondents did not display visible signs of an injury. Rather they described the consequences of their stroke as invisible to others. Participants found this extremely difficult when engaging with those who knew them prior to the stroke, exacerbating their loneliness.

Loneliness is not just about being on your own. To me it’s because I feel different as well, it’s because I have these issues so I kind of feel that even when I’m in a whole room full of people, I can feel quite lonely because no one else feels the same feeling that I feel when I’m out and about. People look at me and you can’t tell there’s nothing wrong and people probably think that I’m perfectly happy but deep inside I just sort of feel like alone all the time. (Chloe, F, aged 45)

Stroke survivors often discussed the invisibility of stroke-related disability. Participants described living with daily pressure and expectations from society due to ‘an undercurrent of we look okay’ (Neil, M, aged 60), generating a further barrier to authentic connection between them and society. Participants suggested that with a more visible disability, understanding would be increased, and stroke would generally be treated with more patience and sensitivity.

Divergent experiences and adaptations

There were varied responses among stroke survivors to the lockdown measures imposed during the pandemic, highlighting the stark differences in experiences and the subsequent adaptations made by individuals within the cohort.

Some of our participants conveyed a deepening sense of loneliness exacerbated by the lockdown restrictions. For them, the pandemic intensified pre-existing feelings of isolation, with the cessation of support services and transition to online interactions failing to adequately address their need for connection. This was particularly salient among younger stroke survivors in our participant pool, who articulated sentiments akin to being a ‘prisoner’ (Edward, M, aged 49). The discontinuation of face-to-face stroke groups further compounded their sense of social exclusion, with individuals likening their experiences to being stuck in ‘solitary confinement’ (Kate, F, aged 50), or ‘locked in four walls’ (Chloe, F, aged 45).

Conversely, a subset of participants reported little to no discernible change in their daily routines or emotional well-being during the lockdown period. For these individuals, the disruption caused by the pandemic mirrored the upheaval already experienced in the aftermath of a stroke, rendering them relatively unfazed by the external circumstances.

Like I get, it’s strange for me ‘cause my situation’s been totally different to everybody else because I’ve had to adjust and adapt my lifestyle to what it is so this pandemic, yes it started for everybody but for me it’s just a continuation of how my life was beforehand. (Harry, M, aged 51)

Having already navigated the challenges of stroke recovery, and ‘training for this for many years beforehand’ (Quinn, F, aged 74), these participants perceived themselves as better equipped to weather the storm of the pandemic and maintain a semblance of normalcy in their lives. This poststroke adaptation was a crucial coping mechanism amid the diverse experiences of the cohort. Notably, stroke survivors who had experienced their stroke 3 or more years previously felt more adjusted to the challenges posed by the pandemic. Acceptance of their circumstances, and time to adapt to a new normal prior to the pandemic, appeared to play a pivotal role in shaping their response, with those who embraced their poststroke identity demonstrating greater adaptability in the face of adversity.

Adapting to pandemic conditions was also facilitated by technology which mitigated the impact of social isolation among stroke survivors, with one survivor referring to it as ‘a lifesaver’ (Harry, M, aged 51). Virtual communication platforms facilitated ongoing connectivity with support networks and community groups where possible, offering a lifeline to those lacking familial support.

It kept me in contact with a lot of people, otherwise I would be very very very isolated with regards to that. (Arthur, M, aged 65)

Using technology was an equaliser across varying degrees of impairment and support systems in our cohort, enabling individuals to bridge the geographical distances and accessibility barriers and foster a sense of belonging. Overall, this theme underscores the multifaceted nature of the pandemic's impact on stroke survivors, highlighting the importance of resilience, acceptance, adaptation and technological innovation in navigating the unprecedented challenges posed by the circumstances.

Rebuilding after lockdown

This theme delves into the complex emotions and challenges faced by stroke survivors as they grappled with the lifting of lockdown restrictions and contemplated life after lockdown. Participants articulated a profound sense of setback in their poststroke development, compounded by the disruptions caused by the pandemic.

A prevalent sentiment among participants was the pervasive loss of confidence experienced both in the aftermath of stroke, exacerbated by the additional challenges posed by the pandemic, and worries about society returning to normal. Although some survivors spoke about the restrictions created by the pandemic not having an impact on their lives to the extent of others, this loss of confidence was ubiquitous among our participants.

It’s not a nice feeling really. Kind of lost my confidence really as well and I do worry that when I can step outside that door like what’s the world going to feel like to us. The thought that I’ve been locked up for practically a year to think… I might be out in that big wide world soon and it’s a quite scary really. I think it’s going to take a long time for me to be able to get my confidence back. (Chloe, F, aged 45)

The compounding effect of these setbacks resulted in a universal feeling of being left behind, with individuals expressing apprehension about the daunting task of rebuilding their lives once restrictions were lifted. The lack of access to rehabilitation services during the lockdown period only served to exacerbate survivors’ anxieties, amplifying concerns about the prospect of starting over from a point further behind than when lockdown commenced.

Some participants described physical and social stagnation. Physically, the inability to access essential rehabilitation services due to lockdown restrictions hindered survivors’ progress and impeded their efforts to regain lost functionality. This stagnation was further compounded by social isolation, as individuals grappled with the loss of social connections and the erosion of support networks exacerbated by the pandemic-induced restrictions.

You don’t see the amount of people that you used to. When I don’t do that, you begin to stagnate a little bit, which is what I feel as I’m doing you know. Sometimes it feels I’m a fraud and moaning about it. But when you’re thinking about it, it’s not… it’s definitely changed my life you know. (Bella, F, aged 76)

The loss of friendships and social interactions, already prevalent among stroke survivors, was magnified by the additional constraints imposed by the pandemic, leaving some participants feeling increasingly isolated and excluded from social engagement.

The convergence of these factors caused feelings of apprehension and despair among stroke survivors, who expressed concerns about their ability to recapture lost opportunities for social reintegration and rehabilitation. The prospect of navigating post-lockdown life loomed large, with individuals confronting the daunting task of rebuilding their confidence and reclaiming their sense of agency in the face of pervasive uncertainty.