Background: Although mental health difficulties can severely complicate the lives of children and young people (CYP) with long-term physical conditions (LTCs), there is a lack of evidence about the effectiveness of interventions to treat them.
Objectives: To evaluate the clinical effectiveness and cost-effectiveness of interventions aiming to improve the mental health of CYP with LTCs (review 1) and explore the factors that may enhance or limit their delivery (review 2).
Data sources: For review 1, 13 electronic databases were searched, including MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials (CENTRAL), Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Science Citation Index. For review 2, MEDLINE, PsycINFO and CINAHL were searched. Supplementary searches, author contact and grey literature searches were also conducted.
Review methods: The first systematic review sought randomised controlled trials (RCTs) and economic evaluations of interventions to improve elevated symptoms of mental ill health in CYP with LTCs. Effect sizes for each outcome were calculated post intervention (Cohen's d). When appropriate, random-effects meta-analyses produced pooled effect sizes (d). Review 2 located primary qualitative studies exploring experiences of CYP with LTCs, their families and/or practitioners, regarding interventions aiming to improve the mental health and well-being of CYP with LTCs. Synthesis followed the principles of metaethnography. An overarching synthesis integrated the findings from review 1 and review 2 using a deductive approach. End-user involvement, including topic experts and CYP with LTCs and their parents, was a feature throughout the project.
Results: Review 1 synthesised 25 RCTs evaluating 11 types of intervention, sampling 12 different LTCs. Tentative evidence from seven studies suggests that cognitive-behavioural therapy interventions could improve the mental health of CYP with certain LTCs. Intervention-LTC dyads were diverse, with few opportunities to meta-analyse. No economic evaluations were located. Review 2 synthesised 57 studies evaluating 21 types of intervention. Most studies were of individuals with cancer, a human immunodeficiency virus (HIV) infection or mixed LTCs. Interventions often aimed to improve broader mental health and well-being, rather than symptoms of mental health disorder. The metaethnography identified five main constructs, described in an explanatory line of argument model of the experience of interventions. Nine overarching synthesis categories emerged from the integrated evidence, raising implications for future research.
Limitations: Review 1 conclusions were limited by the lack of evidence about intervention effectiveness. No relevant economic evaluations were located. There were no UK studies included in review 1, limiting the applicability of findings. The mental health status of participants in review 2 was usually unknown, limiting comparability with review 1. The different evidence identified by the two systematic reviews challenged the overarching synthesis.
Conclusions: There is a relatively small amount of comparable evidence for the effectiveness of interventions for the mental health of CYP with LTCs. Qualitative evidence provided insight into the experiences that intervention deliverers and recipients valued. Future research should evaluate potentially effective intervention components in high-quality RCTs integrating process evaluations. End-user involvement enriched the project.
Study registration: This study is registered as PROSPERO CRD42011001716.
Funding: The National Institute for Health Research (NIHR) Health Technology Assessment programme and the NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula.
Keywords: ADOLESCENT; CHILD; CHRONIC DISEASE; HUMANS; INTERVENTION; MENTAL HEALTH; META-ANALYSIS; OVERARCHING SYNTHESIS; PATIENT PARTICIPATION; QUALITATIVE RESEARCH; QUANTITATIVE RESEARCH; SYSTEMATIC REVIEW.
Many children and young people with a long-term physical health condition also experience feelings of depression, anxiety and other mental health issues that affect their day-to-day life, their family and others around them. This review investigates whether or not interventions (treatments, strategies and resources) can help children and young people with their mental health. The study also reviewed studies that explored the attitudes and experiences of those involved in receiving or delivering similar interventions. The study found 25 publications that evaluated 11 different types of interventions, including cognitive–behavioural therapy (seven studies) and music therapy (one study). There were some positive effects for the strategies tested on both mental health and other outcomes, but, because the studies were often small, exact effects were uncertain. Many of the studies were not very well designed or carried out and differences between research designs meant that it was hard to compare different studies. The study found 57 publications that explored experiences of interventions. Analysis suggested that it is important that strategies involve building good relationships and are delivered in what feels like a safe space. Participants in studies tended to like interventions that provided social support and helped them feel better about living with a long-term physical condition. Successful interventions were viewed as accessible and engaging. These studies were often conducted well, but they focused on the range of interventions rather than the review evaluating how well interventions work. There are many gaps in the research carried out so far. Some long-term conditions affecting children and young people have not been the subject of studies of mental health interventions, and some important outcomes, such as school attendance and self-care, have not been assessed. More carefully designed UK research consulting children and young people, parents and practitioners is needed before it can be clear what works for children with particular physical conditions to help their mental health, and why.