Living with Neurological Conditions: A Creative Response to Challenges

Written by

Nikita Rachel Shepherdson, BSc Psychology with Clinical Psychology, student at Teesside University, Centre for Applied Psychological Science; Email: q5280404@tees.ac.uk

Ruth Chalkley, Participant Research Assistant, person with a neurological condition, affiliate of Neuro Key (working title of the Tees Valley, Durham and North Yorkshire Neurological Alliance)

Giles Hudson, Participant Research Assistant, person with a neurological condition, affiliate of Headway Teesside and Neuro Key (working title of the Tees Valley, Durham and North Yorkshire Neurological Alliance)

Julie Devon, Participant Research Assistant, PhD candidate at Teesside University

Dr Stephanie Kılınç, Senior Lecturer in Psychology, Centre for Applied Psychological Science, Pain and Long-Term Conditions theme lead; Email: s.kilinc@tees.ac.uk

 

‘World Brain Day 2021’ takes place on the 22nd of July. It is a chance to raise awareness of neurological conditions and the individuals who live with them. In addition to existing challenges, the COVID-19 pandemic has necessitated rapid adjustment to a new way of life, thus broadening the range of potential difficulties that those living with neurological conditions may experience. Prior to the pandemic, a creative self-management programme was in progress, as part of a research project, where creative group sessions were developed based on MyLifeTool; a self-management tool for people living with long-term conditions.  MyLifeTool was developed in partnership between people with long-term conditions, Neuro Key (www.na-tvdny.org.uk) and psychologists at Teesside University (www.mylifetool.co.uk). Participant Research Assistants (PRAs) with lived experience of neurological and other long-term conditions were also heavily involved with this project as researchers and co-authors.

Participation as a PRA can help to develop the skills base and self-confidence of people with long-term conditions and places importance on collaboration and reflection, valuing the social context and aiming to produce sustainable change (Kemmis et al., 2014). Within the research, PRAs supported participants as they attended creative groups where they took part in various creative activities designed to support reflection on self-management activities and experiences.  As confidence began to build, PRAs began to take more ownership of sessions, increasing their input into group planning and developing new creative activities. The introduction of the first national lockdown served as a catalyst for a group of PRAs to take further ownership, and the PRAs developed an online creative group in response to the challenges of the pandemic. The online sessions quickly became “a much-needed safe space to navigate this unpredictable time together”. This blog was written in conjunction with PRAs who were involved with the development of the online creative group (named authors above) and their quotes are included throughout to capture their own words, thoughts and reflections about the experiences of the online creative group.

An organically occurring process

 Creativity can serve as an emotional coping mechanism, a tool for contemplation, a method for distraction and a process of self-development (Fancourt et al., 2019). Lockdown presented a new and complex set of challenges and some existing self-management strategies were restricted. Creativity became a valuable device in beginning to explore this. Initially, the group was structured, with each session focusing on a different aspect of ‘MyLifeTool’. However, the conversation within sessions occurred organically and the focus began to shift to the recent difficulties that the group had faced. This resulted in a creative output that was unexpected, and yet perhaps more responsive to the group’s needs at the time.

Interestingly, the use of creative metaphors became commonplace. Metaphors allowed for the exploration of difficult emotions and situations whilst maintaining a safe psychological distance. For many years, art and poetry (including metaphors) have helped us to deal with the deep questions of life and we can observe this across many settings today: consider a medical conversation where a doctor may ask if the pain is “like a knife being stuck in the back” or “like the grinding of sandpaper” (Bloem et al., 2018). Creative metaphors feature in MyLifeTool due to the recognition that they can help individuals to describe constructs that are too complex to understand or explain entirely. One session involved comparing the challenges of life to a Sherpa on a mountain and considering how heavy the load being carried was and what adjustments may be needed to navigate the journey. The group not only engaged in the activity, but further developed it; “it is often medical professionals who are seen as Sherpas, but we [the group] are also Sherpas”. The group considered how they (people with lived experience of neurological conditions) were acting as Sherpas for others in similar situations, on similar journeys on the mountain.

There was an observation that talking to others who had been through challenges could make anything seem as though it were possible. Upon reflection, the group recognised that metaphors too helped them to action a creative response to the challenges that they were facing. The group’s ability to take a concept and adapt the session structure allowed for exploration of more immediate issues, and the creative activities became increasingly meaningful and focussed. Particularly as creativity was being utilised as a tool to explore themes and concepts that were relevant to the context of the group’s lives at that moment.

 Adapting to new demands – a journey

The pandemic necessitated a great deal of change, which appeared to occur almost overnight. However, the group noted that their responsibilities did not change; they worked to uphold the same level of activity online as they did in their previous offline lives. However, living with a neurological condition can further complicate online activity, and the group found that their ability to focus, concentrate and respond were impacted by the demands of technology. Within sessions, it was during this time that there became a repeated focus on “pacing”.

Pacing can help people to manage and conserve their energy and prioritise activities accordingly (Farragher et al., 2020). The group expressed that pacing was impacted by the expectations that they placed on themselves and expectations that they perceived others had of them.  In contrast to the group’s initial desire to ‘pick up the pace’ and maintain this throughout the pandemic, there became more focus on self-management. By identifying personal limitations and energy levels, the group felt more able to utilise pacing as a strategy to protect their own health and wellbeing. As the group began to adapt, they noted that they were more able to save time for themselves and protect their psychological and physical health. The actions of understanding and recognising limits, setting goals and taking action, problem solving and developing confidence have been identified as important tasks and skills within self-management (Satink et al., 2015). However, this was not always easy, and the group found it difficult to assert their needs and wishes.

The pandemic presented many new situations, with new challenges, and a new need to be assertive. The group discussed the new ‘social distancing’ rules and how challenging it was to ask someone to keep a two-meter distance and respect personal space. Pertaining to neurological conditions, considering which battles to fight can be seen as an important aspect of self-advocacy (Audulv et al., 2021). Through the ability to recognise a difficulty, assert their needs and respond to challenges as a group, it became more possible to adapt to challenges throughout the pandemic. The group described their desire to find a solution with a “can-do”attitude. The use of MyLifeTool assisted them with this process, with the group feeling that it was a flexible resource that could be applied across a range of situations. One group member described the tool and creative activities as “templates that you can use whenever the situation requires”.

Sustaining social and supportive relationships

Lowe et al., (2021) illustrate how loneliness in people living with neurological conditions can be an internal process; following a brain injury, individuals described fragmentation of their identity and a loss of social contact, which led to social isolation and loneliness in the longer term.  It was important to remain aware of how we were feeling as a group throughout the pandemic. In sessions, it was felt that there was a social connection that made people feel less alone. The group agreed that this was also an incentive to attend sessions, feeling part of something that felt safe and comfortable was important. The sense of shared understanding between group members also played a role in sustaining the supportive relationships within the group.

Reflecting upon the value of shared experience, a group member surmised, “we may not all be walking in the same shoes, that is, our shoes may be a different size, but we are all walking along the same path. They [the group] know and understand. You can trust them, and they can trust you to be able to share what’s going on”. The group felt that there were very few opportunities in life where individuals could come together with likeminded people in a non-medical and non-judgemental space. Listening to others and having others listen to them helped them to feel valued. The creative sessions were described as “a lifeline throughout the pandemic, a powerful, quiet, kind and fun time that we have shared together”.

A space for reflection

The reflective element of sessions became a great strength within the group. The knowledge and insight gained from reflection has been related to decreases in distress and increases in sense of control (Kristjansdottir et al., 2018). The group had great ability to explore their personal responses to challenges, often continually reflecting outside of sessions. Within sessions, reflections were shared with the group for consideration together. The group expressed that reflecting together created the space to cultivate a healthy way of working through difficult situations. Some members also found that the group presented further opportunity for introspection, reflecting on the words of others and considering the applicability to themselves. There was a recognition that sharing problems with others who may have experienced something similar helped to gain insight and understanding, eventually leading to ideas of how to deal with situations. One group member mentioned how some issues had seemed exempt from solution, “like a brick wall with no way forward”. The creativity and reflection within the group helped them to free their mind enough to be able to find a solution or something positive on the other side of that wall. There were people to learn from, and to learn with, and the group found this helpful in exploring some of the issues that the group had encountered. It was felt that the fun nature of activities and the group’s ability to help each other was a valuable and empowering combination.

Bridging the gap

Throughout the pandemic, there have been challenges for many people. However, there was a sense that there was now more commonality between people living with neurological conditions and the rest of the population, that the gap was being bridged. The group highlighted that they are no longer alone, everyone has had to cope with COVID-19 and the challenges it can bring. There was a feeling that we are developing national empathy, and that things like stigma, inequalities and energy management have been more widely experienced in recent times. In recognising their own strength, the group found that the pandemic was just another challenge to overcome. “Finding a new normal” had already featured as a prominent aspect of adjusting to life with a neurological condition (Kilinc et al., 2020). However, this time we were able to overcome and adapt to challenges together.

As a group, we initiated, created, formed and shaped the sessions together. In doing so, it was felt that the experience was a very powerful one. The group found strength in their ability to find a creative response to challenges, and they viewed the world as one of possibility. This highlights the strength of equipping people with lived experience of neurological conditions with the skills needed to take ownership. The creative self-management programme research led a group of PRAs to feel empowered, resulting in the creation of something very special – a space to navigate unprecedented circumstances together. An example of how people living with neurological conditions have not only demonstrated their own ability to engage in self-management, but have led and supported others to do so too.

References

Audulv, Å., Hutchinson, S., Warner, G., Kephart, G., Versnel, J., & Packer, T. L. (2021). Managing everyday life: Self-management strategies people use to live well with neurological conditions. Patient education and counselling, 104(2), 413–421. https://doi.org/10.1016/j.pec.2020.07.025

Bloem, B. R., Pfeijffer, I. L., & Krack, P. (2018). Art for better health and wellbeing. BMJ (Clinical Research Ed.), 363, k5353. https://doi.org/10.1136/bmj

Farragher, J. F., Jassal, S. V., McEwen, S., & Polatajko, H. J. (2020). Energy management education and occupation-related outcomes in adults with chronic diseases: A scoping review. British Journal of Occupational Therapy, 83(9), 561–575. https://doi.org/10.1177/0308022620904327

Fancourt, D., Garnett, C., Spiro, N., West, R., & Müllensiefen, D. (2019). How do artistic creative activities regulate our emotions? Validation of the Emotion Regulation Strategies for Artistic Creative Activities Scale (ERS-ACA). PloS one, 14(2), e0211362. https://doi.org/10.1371/journal.pone.0211362

Kemmis, S., McTaggart, R., & Nixon, R. (2014). The Action Research Planner: Doing Critical Participatory Action Research. Singapore: Springer. https://doi.org/10.1007/978-981-4560-67-2

Kılınç, S., Erdem, H., Healey, R., & Cole, J. (2020). Finding meaning and purpose: a framework for the self-management of neurological conditions. Disability and rehabilitation, 1–12. Advance online publication. https://doi.org/10.1080/09638288.2020.1764115

Kristjansdottir, O. B., Stenberg, U., Mirkovic, J., Krogseth, T., Ljoså, T. M., Stange, K. C., & Ruland, C. M. (2018). Personal strengths reported by people with chronic illness: A qualitative study. Health expectations: an international journal of public participation in health care and health policy, 21(4), 787–795. https://doi.org/10.1111/hex.12674

Lowe, N., Crawley, L., Wilson, C., & Waldron, B. (2021). ‘Lonely in my head’: The experiences of loneliness in individuals with brain injury. British Journal of Health Psychology, 26, 444-463. https://doi.org/10.1111/bjhp.12481

Satink, T., Cup, E. H., de Swart, B. J., & Nijhuis-van der Sanden, M. W. (2015). How is self-management perceived by community living people after a stroke? A focus group study. Disability and rehabilitation, 37(3), 223–230. https://doi.org/10.3109/09638288.2014.918187