Understanding young peoples' experience of chronic illness: a systematic review

Objective It has been reported that the diagnosis of a chronic illness increases a child's susceptibility to future mental health problems. Accordingly, the objective of the current review was to summarise the best available evidence that described a young person's experience of chronic illness and make recommendations towards the promotion of mental health and prevention of future mental health difficulties. Inclusion criteria The review considered qualitative research that used the voices of young people (under 18 years) to describe their experience of chronic illness and the impact it had on their lives. Search strategy The search strategy sought to find both published and unpublished research papers (limited to the English language). An extensive search was performed using the following databases: PubMed, CINAHL, Web of Science, PsycInfo, Aust Health, Dissertation Abstract International, Expanded Academic Index, Health Source Nursing, and Academic Search Elite. In addition, the reference lists of identified papers were hand searched, to capture all pertinent material, as well as relevant worldwide web sites. Methodological quality Each paper was assessed by two reviewers for methodological quality prior to inclusion in the review using the critical appraisal instrument (Qualitative Assessment and Review Instrument (QARI)) from software developed by the Joanna Briggs Institute (JBI). Results A total of 18 qualitative papers were included in the review (nine grounded theory, six phenomenology, one ethnography, one social ecological, and one multiple case study). Forty-four papers were initially identified but 26 were excluded as they did not meet the inclusion criteria. Findings were extracted and meta-synthesised using JBI-QARI. Five syntheses about a young person's experience of chronic illness were derived: (i) the experience of chronic illness makes young people feel uncomfortable in their body and world; (ii) the experience of chronic illness disrupts 'normal' life; (iii) the experience of chronic illness is not all bad; (iv) ways of getting through the chronic illness experience, 'what others can do'; and (v) ways of getting through the chronic illness experience, 'what I can do'. Conclusion A positive perspective needs to be taken to promote mental health in young people with chronic illness; clinicians, families and interventions need to (i) bolster their sense of self; (ii) normalise the experience; (iii) foster its positive impact; (iv) help them accept the situation; and (v) help to develop the future-orientated coping strategies that will provide them with a sense of hope.