Are you tired of waiting months for a fleeting window with your doctor, only to find you’re left with a laundry list of unanswered concerns? If you’re nodding along, you’re not alone. This frustration is all too common for those with Parkinson’s Disease.
In the UK, Parkinson’s Disease (PD) stands tall as the second most common neurodegenerative disorder. It’s a complex mosaic of symptoms, from motor challenges to mood disorders. Each experience is unique, with symptoms evolving unpredictably over time, making fixed care plans challenging for doctors to devise. With appointments spaced out every 6-12 months, tracking progression and adjusting plans becomes a Herculean task!
Yet, there’s hope: self-monitoring emerges as a powerful self-management strategy! By observing and documenting their condition, individuals can gain insights into what triggers or improves their symptoms. These can contribute to effective decision-making and lifestyle adjustments, improving quality of life.
However, despite its potential, self-monitoring remains underutilised. Even though it’s championed in the NHS Long-Term Plan, there’s still a gap to bridge. Understanding the factors influencing engagement is crucial for developing better support systems and promoting self-monitoring.
Expanding our knowledge:
This study explores the following question: What are the perspectives and experiences of people living with PD in engaging with self-monitoring?
Specifically, it sought to advance research in two ways:
- What self-monitoring behaviours are used by people living with PD?
- What are the barriers and facilitators of self-monitoring for people living with PD?
Launching the investigation!
We recruited 32 individuals with PD and executed one-to-one interviews, allowing us to appreciate their experiences and perceptions on self-monitoring. Our goal was to gain insights into their self-monitoring practices and to identify the barriers and facilitators they encounter.
Now, what did we do with all this information? Well, we dived straight into thematic analysis. This qualitative method enabled us to sift through the wealth of data and uncover patterns running through participants’ experiences.
Our discoveries!
We unveiled three intriguing themes: ‘Method of Self-Monitoring’, ‘Trajectory of Parkinson’s Disease’, and ‘Autonomy and Control’. Each contained its own set of subthemes, providing us with a deeper understanding of the complexities at play (see Fig.1 for Thematic Map).
Method of Self-Monitoring
Participants shared two main approaches to self-monitoring: documented and mental. Documented methods, whether digital or traditional pen-and-paper, offered a tangible way to track symptoms and activities. Alternatively, mental self-monitoring emerged as a fascinating phenomenon where participants solely relied on memory to track changes. Interestingly, motivation to engage in either was influenced by life experience and skills which resulted in comfort with certain approaches, acting as barriers or facilitators to engagement in them.
Trajectory of PD
The trajectory of PD and perceptions of its stages deeply influence motivation for self-monitoring. Early on, gradual symptom evolution can make detecting changes challenging, leading to scepticism on the purpose of self-monitoring. As it progresses, some feel uneasy about self-monitoring as they confront the reality of decline. Yet, for others, there’s a bright side: acknowledging the gradual progression offers confidence and motivation to persevere.
Autonomy and Control
For many, maintaining independence through self-monitoring is a point of pride, a way to manage without relying on others. Through spotting patterns, individuals can seize control, making proactive changes to their routine. It’s like uncovering clues to better health, pinpointing triggers for symptom flare-ups. But for some, dependency feels inevitable, hindering their ability to self-monitor.
Documenting their journey gave participants a clearer picture of their condition, empowering them to take initiative in leading the conversation and collaborating with healthcare professionals (HCPs). But here’s the kicker: positive interactions, where HCPs acknowledge and respond to self-monitoring notes, boost motivation. But dismissive attitudes can be demoralising and feel like hitting a wall, leading to doubts about the value of self-monitoring.
Implications: How does this shape our understanding?
Delving into the self-monitoring experiences with PD, our study uncovers invaluable insights. Understanding these realities is essential for crafting interventions that truly meet their needs.
Armed with these findings, researchers gain pivotal insights into overcoming barriers and discovering avenues of support. Here are some key areas identified:
- Education and Skill Training: By teaching various self-monitoring methods, we can help individuals find what works best. For example, digital literacy training can bridge the gap for those comfortable with analog methods but struggling to keep track with paperwork.
- Healthcare professional training: This is crucial too! They need to know how to integrate self-monitoring data with decision-making processes and foster collaboration for personalised care plans.
- Psychological Therapy Support: Supporting mental health challenges like depression related to PD is crucial. Psychological therapies can empower individuals to overcome negative perspectives and embrace self-monitoring for their well-being.
With these factors actionable through self-management interventions and HCP training, our findings offer promising prospects for enhancing the support provided to those living with PD.
Where to now?
Whilst the areas identified are promising for designing interventions, we recognise our recruitment was limited to residents of England. This begs the question: what about people from diverse cultural backgrounds?
Research shows that cultural beliefs on chronic illnesses play a role in motivating self-management. For example, practices like prayer can instil a sense of control, impacting engagement with self-monitoring. Understanding these nuances could provide deeper insights into our themes.
So, we can’t just apply these findings to other cultures without replicating the study on a broader scale with a more diverse patient population. Moving forward, studies should explore how culture influences barriers and facilitators for self-monitoring to help develop more inclusive interventions.
Let’s reflect!
Self-monitoring isn’t just for managing chronic illnesses—it’s for everyone! How do you think you could use it to boost your well-being? Maybe you’re considering tracking your water intake to stay hydrated or keeping tabs on your sleep patterns to improve rest. Comment your ideas below!
References
The Lancet on Parkinson’s Disease Symptoms & the Need for Personalised Management
Bloem, B. R., Okun, M. S., & Klein, C. (2021). Parkinson’s disease. The Lancet, 397(10291), 2284-2303.
NHS Definition of Parkinson’s Disease
National Health Service. (2022). Parkinson’s disease: Overview. NHS England. https://www.nhs.uk/conditions/parkinsons-disease/
NHS Long-Term Plan
NHS (2019). The NHS Long Term Plan. NHS England. https://www.england.nhs.uk/publication/the-nhs-long-term-plan/
NICE on the Prevalence of Parkinson’s Disease
NICE. (2023). Parkinson’s disease: How common is it? National Institute for Health and Care Excellence. https://cks.nice.org.uk/topics/parkinsons-disease/background-information/prevalence
A Review of the Key Components of Self-Management for Parkinson’s Disease
Tuijt, R., Tan, A., Armstrong, M., Pigott, J., Read, J., Davies, N., … & Schrag, A. (2020). Self-management components as experienced by people with Parkinson’s disease and their carers: a systematic review and synthesis of the qualitative literature. Parkinson’s Disease, 2020.
A Concept Analysis of Self-Monitoring
Wilde, M. H., & Garvin, S. (2007). A concept analysis of self‐monitoring. Journal of advanced nursing, 57(3), 339-350.
[Icons on Thematic Map sourced from Canva]
Word Count: 999 words (5-minute read)
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