By Dr Stephanie Kılınç, Teesside University, UK and Jo Cole, the Tees Valley, Durham and North Yorkshire Neurological Alliance, UK
Long-term conditions are a major concern for global health care systems given their high prevalence and disease burden, including their significant impact on disability-adjusted life years. They also have a significant negative impact on health-related quality of life and are associated with higher rates of anxiety and depression than the general population.
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, Acquired Brain Injury, 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 which takes a person-centred, non-instructive perspective on self-management. People with long-term conditions were at the heart of the project, forging the decisions on what MyLifeTool would become and choosing the name.
Our approach to self-management
Self-management strategies for long-term conditions often focus on medical outcomes and management strategies and are too concerned with behaviour change, neglecting the social and relational context. Alternatively, self-management of long-term conditions can be viewed as a lifelong, fluid process which can change depending on life circumstances and symptom fluctuation. As a result, there are proposals to move from instructional self-management approaches to ones which support people to consider and develop their own self-management resources. With this in mind, we view self-management is a journey towards finding or maintaining meaning and purpose in life. 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 also about the person, not the diagnosis. For this reason, a large part of MyLifeTool requires users to reflect upon which self-management strategies do and do not work for them.
How MyLifeTool is structured
MyLifeTool comprises five booklets which contain different positive psychology activities, encouraging people to explore their strengths. Research has found that living a purposeful life is important to people with long-term conditions and is associated with personal growth and better health outcomes.
Book 1: “Me and my condition”, focuses on identity and starting to see yourself in a more positive light. It is about being 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. Activities encourage you to listen to your body, recognise when you have done too much and reflect upon ways to manage your energy levels.
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 management by learning more about your condition and how it fits within your life. Activities include goal setting and recognising 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. Activities explore 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.
The Reflective Scrapbook
To support reflection, MyLifeTool contains a scrapbook; a creative space that can help people to think about their experiences, aims and achievements. The scrapbook is open and non-directive, so people can use various creative activities techniques that suit them, or they can use the scrapbook as a diary if they prefer. Creative approaches like this can enable people to explore their experiences in detail and reflect upon their meaning in more authentic ways.
MyLifeTool is used by UK-based voluntary sector organisations and mental health practitioners. It is available for free online for people with long-term conditions to use themselves or for practitioners to use with patients/clients.
Evaluation of MyLifeTool
People who used MyLifeTool for 12 weeks found it beneficial in supporting their self-management, personal growth and enhancing their acceptance of living with a long-term condition. Wellbeing measures taken before and after using the tool also show improvements in self-efficacy, empowerment and pacing ability.
Practical recommendations
See the whole person, not the diagnosis: Long-term conditions affect all aspects of a person’s life. We can support people to reflect on how their condition fits into their lives, taking into consideration potential changes in their condition, life circumstances, needs and aims for the future.
Self-management is ongoing: A person cannot learn to self-manage their condition(s) by taking part in a short course. Long-term conditions are potentially life-long and symptoms and impact can fluctuate. Encouraging people to reflect on their self-management can support them to adapt to changes in their life circumstances and condition long term.
Meaning and purpose: Support people with long-term conditions to reflect upon and explore what gives them meaning and purpose in life.
Focus on strengths: People who have used MyLifeTool have valued the way it focuses on what people with long-term conditions can do, rather than what they can’t do.
Stephanie Kılınç
