The meanings young people assign to living with mental illness and their experiences in managing their health and lives: a systematic review protocol

Review question/objective The purpose of this qualitative systematic review is to synthesize the best available evidence on the meanings young people assign to living with mental illness, and their experiences in managing their health and lives. Specifically, the following questions will be addressed: 1. What meanings do young people with mental illness assign to living with mental illness? 2. What are young peoples' experiences of living with mental illness and what is the impact of mental illness on their lives? 3. What helps and what hinders young people with mental illness to manage their health and lives? Background The World Health Organization (WHO) estimates that more than 20% of the world's young people are struggling with mental illness,1 with similar types of disorders reported across countries. Moreover, approximately half of all lifetime mental disorders start by the mid-teens, and three-fourths by the mid-20s.2,3 These findings are concerning given that living with a mental illness can have a significant impact on a young person's life, the lives of his/her family members, the young person's community, and society more generally.4 Dia and Bradshaw reinforce that young people living with mental disorders create heavy burdens on society, explaining that as young people suffer with their own personal struggles, they engage in increased problem behaviours, have poor self-concept, experience poor academic success, as well as other various personal and interpersonal difficulties.5 Mental health issues in childhood and adolescence, particularly those that are unaddressed, can impact life course development and increase the risk for other mental health problems in adulthood. The economic impacts of mental illness affect the ability of both ill persons and their caregivers to be employed and therefore, personal income and livelihood, productivity in the workplace, and contributions to the national economy are impacted.4,6 Mental disorders cost national economies several billion dollars, both in terms of expenditures incurred and loss of productivity.6 Considering the impacts that mental illness has at both the individual level, in terms of quality of life, and the varied social and economic costs at the societal level, the United Nations General Assembly is advocating for the provision of equitable access to effective programs and health care interventions for young people.4Additionally, it is important to consider how the utilization of treatment and support services contributes to the economic impacts of mental illness.5 However, despite the fact that mental illness is the leading health problem faced by young people,7 it is estimated that fewer than 25% of young people in need of treatment receive those specialized services,7,8 and less than 7% receive a diagnosis by their doctor.9 Young peoples' mental health issues have not received the public policy attention warranted by recent epidemiological data, and mental health care continues to receive little in the way of public policy attention. Canadian Senator Michael Kirby, while speaking to the fact that mental health care is often referred to as the orphan of the health care system, referred to young peoples' mental health care as the “orphan child of the orphan child.”10 Given the treatment gap, the prevalence in young people, and the resulting distress, burden and long-term consequences of mental illness at the individual, family, and community level,7 there is a need to arrive at an increased understanding of the meanings young people assign to living with mental illness and their experiences in managing their health and lives. A synthesis of literature from multiple contexts of the meanings and experiences of young people living with mental illness will add to our understanding of young people's lived experiences. A qualitative systematic review would be of benefit to provide context for the development of new evidence-based mental health care interventions for young people and the delivery of those that currently exist. The overall aim is to advance the development of effective and timely mental health and social services that include patients' preferences and values, which may ultimately lead to improved mental health outcomes for young people. Literature searches were conducted in the JBI Database of Systematic Reviews and Implementation Reports, CINAHL, PubMed, and PsycINFO for existing systematic reviews on this topic. The searchesdid not reveal any previous or planned systematic reviews of qualitative evidence on the proposed research purpose and questions. While no reviews were located that specifically addressed the same research purpose and questions, one related systematic review was found that reported barriers and facilitators of mental health help-seeking in young people using both qualitative and quantitative research.11 This review was limited as it only focused on barriers and facilitators to help-seeking for mental health problems experienced by adolescents and young adults. Moreover, the search strategy was limited to three databases and the methodology of qualitative data synthesis was not the methodology of synthesis employed.