Supporting the mental health of young people with a long-term physical condition: Dr Angeliki Bogosian & Dr Jennie Brown

In the 4th of a series of blog posts by eNurture grant holders, Drs Angeliki Bogosian and Jennie Brown outline the progress they have made on their project ‘Delphi study with young people, families and professionals to prioritise focus, content and digital tools in the co-development of digital tools to support young people with long-term health conditions’.

We are mental health researchers from City, University of London, collaborating with Great Ormond Street Hospital clinicians. We're pleased to introduce our innovative eNurture funded project to investigate how we can support the psychological wellbeing of young people with long term health conditions.

Background

One in ten children will develop a long-term physical condition that can affect their daily life and demand extended care, supervision and self-management strategies (Yeo & Sawyer, 2005).

These conditions include diabetes, neurodegenerative conditions, cancer, sickle cell disease, asthma, and chronic pain. In addition, children and adolescents with long-term conditions have higher mental health challenges than children without long-term conditions (Pinquart & Shen, 2011). As a result, the World Health Organisation (WHO, 2012) has called for more research into potential interventions to support young people with long-term conditions.

Using digital technology to deliver such an intervention offers several advantages, such as reaching a more significant number of young people at a time that suits them and in a context that may be familiar.

However, little is known about the potential for digital technology to support good mental health for young people with long-term conditions (Grist et al., 2017; Thabrew et al., 2018).

Our project

We seek advice and guidance from young people with long term conditions, their parents or guardians and health professionals to help us identify the best way to create an intervention to support mental health.

As academic researchers, we must work with young people with long term conditions to identify what they want, rather than what we think might be helpful. This is the first step in what we hope will be the creation and trial of digital intervention in the future.

Our participants will be adolescents aged 10-18 years old because children in this age range are at the highest risk of mental health problems (WHO, 2020). Adolescence is also critical to creating routines and behaviours that optimise mental health. We will be consulting children with Asthma, Diabetes or Epilepsy as these are the three most common long-term conditions in children (Royal College of Paediatrics and Child Health).

Progress so far

We wanted to identify what we already know first before asking young people, parents, and professionals about which themes to prioritise. So, we conducted a literature review to identify psychological themes for young people with asthma, diabetes or epilepsy.

Difficulties with mental health were commonly experienced,
such as depression, anxiety and social isolation.

Peer group issues were another concern, such as trying to fit in with others and wanting to appear 'normal'. So, we have created a list of common issues to act as a starting point for discussion with our participants.

We have developed a short online questionnaire to send to our participants, which will help us narrow down the focus, content and tools of future intervention. The questionnaire will be sent out in three rounds to agree with our participants on what the intervention should involve.

How to get involved

We are now looking for a small number of young people (10-18 years old), parents/carers and professionals working in the area to participate in our questionnaire. The questionnaire will take less than 10 minutes to complete, and we will ask participants to complete the questionnaire three times. Participants will receive a £10 voucher each time they complete the questionnaire.

We are also busy setting up a separate advisory panel of young people and parents. This group will not be involved in completing the questionnaire but will discuss what we find. Our advisory group will meet with the research team at 4-time points and receive £35 as a thank for their time for attendance at each meeting.

We look forward to updating you over the next couple of months to share how we got on with the questionnaire.

If you are interested in taking part in our research or joining our advisory group,
don't hesitate to get in touch with us!

Authors

Dr Angeliki Bogosian (Angeliki.bogosian.1@city.ac.uk), Senior Lecturer and Principal investigator
Dr Jennie Brown (jennie.brown.2@city.ac.uk), Research Assistant/Fellow

Health Services Research and Management Division, School of Health Sciences, City University of London

Our other team members

Dr Kathleen Mulligan, Senior Research Fellow, Health Services Research and Management division, School of Health Sciences, City University of London

Prof Stephanie Wilson, Professor of Human-Computer Interaction, Department of Computer Science, School of Mathematics, Computer Science and Engineering, City University of London

Dr Michelle Heys, Consultant Paediatrician and Associate Clinical Director, Specialist Children's Services, East London NHS Foundation Trust; Associate professor in population and community child health, UCL; GOSH Institute of Child Health and Consultant Paediatrician, East London NHS Foundation Trust

Dr Polly Livermore, Senior Paediatric Nurse, Great Ormond Street Hospital, London

Dr Suzy Gray, Consultant Paediatric Clinical Psychologist, Great Ormond Street Hospital, London

References

Davies, S. C. (2012). Our Children Deserve Better: Prevention Pays. Annual Report of the Chief Medical Officer.

Ferro, M. A., & Boyle, M. H. (2015). The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children. Journal of Abnormal Child Psychology, 43(1), 177-187. doi: 10.1007/s10802-014-9893-6

Grist, R., Porter, J., & Stallard, P. (2017). Mental health mobile apps for preadolescents and adolescents: a systematic review. Journal of medical internet research, 19(5), e176.

Pinquart, M., & Shen, Y. (2011). Behavior problems in children and adolescents with chronic physical illness: a meta-analysis. Journal of Pediatric Psychology, 36(9), 1003-1016. doi: 10.1093/jpepsy/jsr042

Royal College of Paediatrics and Child Health (RCPHC)

Yeo, M., & Sawyer, S. (2005). Chronic illness and disability. British Medical Journal, 330(7493), 721-723. doi: 10.1136/bmj.330.7493.721

Thabrew, H., Ruppeldt, P., & Sollers, J. J. (2018). Systematic review of biofeedback interventions for addressing anxiety and depression in children and adolescents with long-term physical conditions. Applied Psychophysiology and Biofeedback, 43(3), 179-192.

Click here to watch Angeliki’s presentation at our Research Showcase event on 17 January