Improving the mental health of children and young people with long term conditions

“Living with a long term medical condition is often much harder than many people think it is. Not only do you have to cope with the health condition itself, but you also have to tackle all the other issues it brings along with it, such as psychological disorders or simply chronic pain, and in a young teenager’s normal life of long, tiring days and constantly fluctuating moods, these are enough to really push you over the edge.”

Excerpt from Afterword of the Final Report – written by a member of our Children and Young People Advisory Group

Background

The burden of suffering with a long term physical condition can cause feelings of anxiety and depression in many young people and children. This can hinder the treatment and management of their condition, reduce quality of life and influence their development. Often services aimed at supporting young people with long term conditions can find it difficult to support any concurrent mental health problems they may be experiencing. Children with mental and physical illness need effective integrated healthcare, yet it has not been established whether, or which, interventions for mental health disorders are effective in children with chronic physical illness.

Project Aims

The project consisted of two systematic reviews that addressed the following research questions:

Review question(s):

• What is the effectiveness and cost-effectiveness of interventions targeting mental health for children and young people with long term conditions and symptoms of mental distress?
• What are the effects of such interventions on other key aspects of social and family functioning?
• What are the factors that may enhance, or hinder, the effectiveness of interventions and / or the successful implementation of interventions intended to improve mental health for children and young people with long term conditions and symptoms of mental distress?

Review methods

We conducted a systematic review of quantitative research evidence about the effectiveness and cost-effectiveness of relevant interventions and a review of qualitative research that explored the attitudes to, and experiences of, receiving interventions, from the perspectives of the children and young people, their parents and families and those involved in delivering interventions. We then brought together the findings from the two reviews to map out the links between the treatments and their effects on mental health, gaps in the evidence and factors that seem to enhance or limit the success of interventions.

We wanted to ensure that our findings make sense to end users. Therefore, we discussed the findings with a group of children and young people who have long term conditions, and their families, and practitioners who work with them. This was done via a mixture of face to face discussions with individuals and groups and also email to achieve a widespread distribution of different views and experiences. We hope that by bringing together all the results in a single piece of work we will be able to make a helpful contribution to knowledge in this area.

Dissemination

It is important that the findings are readily available to the people for whom they are relevant. This includes: mental and physical health clinicians, commissioners of health services, other researchers and children and young people and their families. We are using different methods of dissemination to target different audiences.

We co-created plain language summaries with the parents, children and young people who were involved throughout the project. They also helped us to record two podcasts which describe the results and also reflect on our experiences of working with children and young people on this project. If you would like to link to the plain language summaries and podcasts on your website please let us know. We’re also happy to provide material for newsletters and blog posts.

We place a lot of value on working with children and younger people, and recently attended INVOLVE (read more about this on our blog) to share our results, and presented at the Cochrane Colloquium in Edinburgh.

The main report was published in the NIHR Journals Library in May 2019. We have also produced a short Briefing Paper that summarises the main findings and implications for policy, practice and research. You can read these in the Links & Downloads section below.

We are also preparing papers for publication in respected journals and these will appear here as they become available.

“Watching a child suffer from a long-term health condition is awful. They may be in pain, feel ill and be unable to do the things that other young people do. They may need surgery and lengthy stays in hospital. They need medication and side effects can be a challenge all by themselves. Watching a child cope with all this, and then put their fist through their bedroom door in anger, or refuse to leave the house for weeks through social isolation, or be unable to sleep at night/eat properly due to anxiety, is heart-breaking…
… In looking at the effectiveness of the various strategies, it is hoped that excellent practice can be identified and used to improve all mental health provision for our young people with long-term physical conditions. They deserve nothing less.”

Excerpt from the Foreword of the Final Report – written by a member of our Parent Advisory Group

“Before my diagnosis of SLE at the age of 9 (I am now 17), my life was relatively normal. For the past 9 years I have battled with having to take daily medications; continual check-ups; and various mental health problems mainly around anxiety and depression. Over the years my biggest struggles have been the lack of control I have felt over my physical and mental health. Both these things affected my ability to socialise; go to school and college consistently; and take part in activities that other teenagers of my age might do. At times this has made life difficult and isolating, with professionals around me not really listening to me. Being part of this research project has been important, because over the years I have used mental health services with varying affect and they have felt forced rather than a choice. I hope the findings in the research will enable future interventions to be more creative for all young people but particularly for those like me who have long term illnesses. It felt good to think that my experiences and contributions can make a difference.”

Excerpt from Afterword of the Final Report – written by a member of our Children and Young People Advisory Group