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Long-term health conditions: Putting experience first


In the UK, people with long-term conditions account for 70% of NHS spending and estimates suggest that 20-30% of patients attending specialist services need professional support to change their health behaviour to accommodate their long-term condition.

The North East has the highest rate of people with long-term conditions and the highest rate of activity-limiting long-lasting health problems and disabilities. Research carried out by Dr Lis Hammond, Dr Sarah Hirst-Winthrop and Dr Stephanie Kilinc from Teesside University investigated the experience of living with long-term conditions and developed a self-management framework and model of adjustment to chronic conditions.

The Research

An initial study focussing on the adjustment patients diagnosed with type 2 diabetes have to make, led to the first model of adjustment to chronic conditions. The model charted the process of adjustment from before the onset of the condition, through an ongoing adjustment cycle and then maintenance cycle. Later, the model was found to also be applicable to patients diagnosed with adult-onset epilepsy.

Further research into the lived experience of people with long-term conditions led to the development of a new self-management framework. Through a series of interviews with adults who had been diagnosed with epilepsy in adulthood, the research highlighted the negative impact of the condition on how people live their lives, their experience of their body and their identity. The findings encouraged healthcare practitioners to look beyond the medical management of epilepsy and consider its impact on a person's behaviour and wellbeing.

Following this research, a collaboration with the charity Neuro Key looked at the self-management of long-term conditions. Recognising patients as the experts of their own conditions, it explored the feasibility of self-management across neurological conditions. The research team became the first to develop a self-management framework for long-term neurological conditions. This has since evolved into a new self-management tool and programme for people living with long-term conditions.

The Impact

This research has informed the practice of healthcare practitioners and led to significant changes in the techniques people with long-term conditions use to self-manage their condition. Ultimately, these changes have improved the practice of practitioners.

In clinical practice, the model of adjustment developed provided practitioners with a new framework for supporting people living with long-term conditions. It has been adopted by a broad range of healthcare practitioners within NHS trusts and private healthcare organisations, including psychological wellbeing practitioners, counsellors, clinical and counselling psychologists and physiotherapists.

For people living with long-term conditions, the research has postively changed the way they self-manage their condition. A new self-management tool, 'MyLifeTool', and programme, 'MyCreativeLife', supports patients to manage their lives and conditions, and has been used by people with a range of long-term conditions. 'MyLifeTool' and 'MyCreativeLife' have also been adopted and used by national and regional service user organisations including Neuro Key, The Brain and Spine Foundation, and the Therapeutic Care Volunteers at James Cook University Hospital.

“[Clients now have] a more positive outlook that recognises their achievements and ability to face challenges associated with their condition…they have welcomed the space to reflect on their self-management experience and establish what strategies do or do not work for them.”

Head of Operations, Neuro Key

Centre for Applied Psychological Science

The Centre for Applied Psychological Science (CAPS) bridges the gap between theoretical research and applied practice by providing evidence-based solutions to societal challenges.

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