Dr Stephanie Kılınç, Senior Lecturer in Psychology, Centre for Applied Psychological Science, Pain and Long-Term Conditions theme; Email: email@example.com
Jo Cole, Head of Operations, Neuro Key (working title of the Tees Valley, Durham and North Yorkshire Neurological Alliance); Email: firstname.lastname@example.org
MyLifeTool is a self-management tool for people living with any long-term condition (e.g. diabetes, multiple sclerosis, chronic pain, asthma, anxiety, neurodevelopmental conditions, ABI, Fibromyalgia). It was developed in partnership with people with long-term conditions, members of Neuro Key and psychologists from Teesside University. It is underpinned by our self-management framework (Kilinc, Erdem, Healey & Cole, 2020) which takes a person-centred, non-instructive perspective on self-management.
We developed the tool in June 2019 with a steering group of ten people living with long-term conditions. They met three times to develop a pilot tool which we tested for one month with eight people diagnosed with a range of long-term conditions, exploring their thoughts on using the tool and anything they would change. We then finalised the tool with the steering group. Throughout the entire process, people with long-term conditions were at the heart of the project and forged the decisions on what MyLifeTool would become. The steering group chose the name, MyLifeTool.
We see self-management as a journey towards finding or maintaining meaning and purpose in life. Whilst it is an ongoing process that people approach from their own perspective, to fit with their life, aims and needs and changes in their condition, it is about the person, not the diagnosis. For this reason, reflecting on what does and does not work is a large part of MyLifeTool. To support people to reflect, MyLifeTool contains a scrapbook; a creative space that can help people to think about their experiences, aims and achievements. We wanted to keep the scrapbook open and non-directive so can people use various creative activities or expressive writing techniques that suit them, or they can use the scrapbook as a diary if they prefer.
The remainder of MyLifeTool is MyToolBox: five booklets which contain different activities focusing on five different areas of self-management from the original self-management framework (identity, physical impact, taking control, social connections and finding what is important to you). All activities take a positive psychology approach, encouraging people to look to their strengths. A person’s condition can fluctuate or worsen or their life circumstances may change, so MyLifeTool encourages people to recognise that sometimes we might have setbacks but we have strengths that we can draw on and help us to move forward in the future. It is important that people return to activities to reflect on their progress and learn which strategies work for them.
Book 1: “Me and my condition”, focuses on identity and starting to see yourself in a more positive light and not placing too many expectations on yourself. It is about being a little kinder to yourself and recognising that you are not defined by your condition. The booklet contains activities to encourage people to think about who they are, their values and what they expect from themselves.
Book 2: “Embracing my body”, explores planning and pacing strategies that you often see in self-management programmes. The activities encourage you to listen to your body, recognise when you have done too much and reflect upon ways to manage your energy levels and conserve energy.
Book 3: “Taking charge”, is about recognising your strengths, building resilience and making the most of the good days. It encourages you to be more active in your condition by learning more about your particular condition and how it fits within your life. Activities in this booklet include goal setting and recognising yours strengths.
Book 4: “Connecting with others”, recognises the importance of receiving support, as well as the benefits of giving support to others, as both can enhance meaning and purpose in life. There are activities exploring how to communicate your needs to others, such as family and friends, but also medical practitioners and other professionals.
Book 5: “What’s important to me”, considers what gives you purpose in life and how you can find time for yourself. People find purpose in a variety of different ways: keeping busy; having a reason to get out of bed in the morning; challenging themselves; focusing on their family.
MyLifeTool is used by UK based voluntary sector organisations supporting people living with long-term conditions and mental health practitioners and is available online at www.mylifetool.co.uk
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, 44(2), 219-230, DOI: 10.1080/09638288.2020.1764115