Summary of Twitter Chat – A double burden: Managing long-term conditions and psychological distress in young people

The EBN Twitter Chat on Weds 3rd April was led by Dr Abbie Jordan (@drabbiejordan) and Sharon Bateman (@BatemanSharon) from the Centre for Pain Research at the University of Bath and Dr Line Caes (@linecaes) from the University of Stirling. The chat focused on exploring psychological distress in young people with long-term conditions.  This Blog provides a summary of the key themes from the chat. Participants in the chat included researchers, nurses, psychologists, young people who were service users and their parents. There was a general consensus that this was an important topic that was not discussed as often as it should be.

The chat considered what the challenges are for young people with long-term health conditions face in terms of psychological distress. One of the young people taking part in the chat discussed trying to answer the question Why me? Other participants noted that a delay in diagnosis and/or referral to an appropriate doctor could contribute to psychological distress. Some suggestions for addressing this was having peer support networks set up that young people could access while on the waiting list. Research looking at the effectiveness of peer support has reported good outcomes (Ahola Kohut et al., 2014;2016)..

The configuration of services was also seen as contributing to young people’s psychological distress. Services for physical and mental health are often separate. One of the young people taking part in the chat reported not seeing a psychologist until she was referred to adult services. This issue has been highlighted in a paper by @linecaes: https://www.mdpi.com/2227-9032/5/4/93. This issue was often made worse by a lack of awareness of mental health issues among health care professionals working with these young people and a lack of understanding of the psychologists’ role. Education for health care professionals, on the whole< remains very focused on anatomy and physiology.

The chat also considered why some young people with long-term health conditions better able to manage their psychological distress than others. Much of this part of the chat focused on resilience. This was seen as a key gap in the literature with much greater understanding of how resilience can be promoted in this group of young people needed.

The third area discussed was how clinical practice can help to better support young people with long-term health conditions in terms of managing psychological distress. A key point here was the need to listen to the young people – listening to both verbal and non-verbal cues. One of the young people shared a Blog about her worst hospital appointment ever when the doctor didn’t let her speak and continually talked over her. Her experience is highlighted in a Blog: http://www.niamhslife.com/2019/02/storytime-worst-doctors-appointment-i.html?m=1.

Don’t forget to join the next EBN Twitter chat on 17th April at 8pm (UK time) with @ClareVeigh focusing on mobile SPaced LEarning as a digital learning platform when teaching symptom management to undergraduate nursing students.

References

Ahola Kohut, S., & Stinson, J. (2014). Systematic review of peer support interventions for adolescents with chronic illness. International Journal of Child and Adolescent Health, 7, 183-197.

Ahola Kohut S, Stinson JN, Ruskin D, Forgeron P, Harris L, van Wyk, M. & Campbell F. (2016). iPeer2Peer program: A pilot feasibility study in adolescents with chronic pain. Pain, 157(5):1146-1155.

 

 

 

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