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The meanings young people assign to living with mental illness and their experiences in managing their health and lives: A systematic review of qualitative evidence
Abstract
Background:
It is estimated that less than 25% of young people in need of treatment for mental illness receive specialized services, and even fewer receive a diagnosis by their doctor. These findings are troubling 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 generally.
Objective:
The objective of this systematic review was to synthesize the best available qualitative evidence on the meanings young people assign to living with mental illness and their experiences in managing their health and lives.
Inclusion criteria:
The current review considered both interpretive and critical research studies that drew on the experiences of young people with mental illness.
Search strategy:
The search for published studies included the following databases: MEDLINE, CINAHL, Social Sciences Full Text, PsycINFO, Social Work Abstracts, Sociological Abstracts, Embase, Social Services Abstracts, Child Development and Adolescent Studies, Scopus, Web of Science and Academic Search Complete. The search for unpublished studies included conference proceedings and ProQuest Dissertations and Theses Database.
Methodological quality:
Each paper was assessed independently by two reviewers for methodological quality. The Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) was used to appraise the methodological quality of the articles.
Data extraction:
Qualitative data were extracted from papers included in the review using the standardized data extraction tool from JBI-QARI.
Data synthesis:
JBI-QARI was used to pool findings based on their similarity of meaning and developed into four synthesized findings.
Results:
Fifty-four research papers generated 304 study findings that were aggregated into nine categories. The nine categories were further aggregated into four synthesis statements: (1) A different way of being, (2) Getting through the difficult times, (3) Yearning for acceptance and (4) Room for improvement.
Conclusion:
Young people with mental illness experienced a range of feelings and thoughts that at times left them feeling uncomfortable in their body and world. Rejection by family and friends was a common fear. The changes experienced by young people required them to use a variety of strategies that were both negative and positive. The challenges young people faced in seeking and receiving care reinforce that there is a need for improvement in mental health services for youth living with mental illness.
... 18) and recommended thinking creatively about data collection methods rather than relying only on the verbal interview. Yet an overwhelming majority of the 48 studies reviewed by Woodgate et al. (2017) still utilised verbal, interview-based data collection, except for four studies. The heavy reliance on verbal expression in data collection contrasts with Woodgate's recommendation of encouraging "the use of art-based strategies to help young people manage their feelings" (p. ...
... Yet I contend that such findings can also be understood in relation to a wider request from young people regarding mental health services. Following a systematic review of qualitative research which focused on young people's experience of living with mental illness and accessing mental health services, Woodgate et al. (2017) reiterated the call for less formal and more relaxed mental health services for young people. ...
... desire for participation mirrors findings within international research on lookedafter children's views regarding their mental health needs. Within reviewed literature(Davies & Wright, 2008;Stanley, 2007;Street & Svanberg, 2003;Woodgate et al., 2017; YoungMinds, 2012) children's desire for inclusion and participation emerged as an important theme echoing their wish to participate in decisions taken about them within mental health services. Such a call for participation suggests the need for a more collaborative relationship ...
Research on children’s views of mental health services in alternative care has been identified as an underrepresented domain within literature about children in care. This practice-based qualitative enquiry aims to elicit, represent, and understand children’s accounts and evaluations of psychotherapy. It also aims to enable children’s feedback about the methods used to engage them in research. It focuses on the psychotherapy interventions offered to children by a team of psychotherapists from different modalities, working in a residential alternative care setting in Malta. The study aims to contextualise children’s views by including the perspectives of adults involved or related to the service. It problematises the similarities and differences between children’s and adults’ views of psychotherapy and seeks to understand them in the light of child - adult dynamics within a specific context. The study also involved a children’s reference group where they were consulted about the research aims and design. Fifteen children, who were attending, or had attended therapy, consented to participate. Data with children were collected
through a flexible, multiple method approach where children were offered a choice regarding how they wished to express their views. The study included the inductive thematic analysis of 29 interviews with children and 13 interviews with adults. Findings convey children’s views regarding engagement, expression, change and power dynamics, and communicate children’s needs and priorities which were absent from adults’ understandings. They challenge adult�determined psychotherapy beliefs and practices, and inform the development of psychotherapy services within the setting. By enabling and problematising children’s agency and participation, this study contributes to knowledge about children in therapy as active agents and rights holders. It communicates the opportunities revealed by such an approach within research, offering critical
insights into the development of data collection tools, and proposes a relational, interactional and multi-layered conceptualisation of children’s voices and agency.
Keywords: child voice, child agency, child psychotherapy, residential child care, arts therapies
... 18) and recommended thinking creatively about data collection methods rather than relying only on the verbal interview. Yet an overwhelming majority of the 48 studies reviewed by Woodgate et al. (2017) still utilised verbal, interview-based data collection, except for four studies. The heavy reliance on verbal expression in data collection contrasts with Woodgate's recommendation of encouraging "the use of art-based strategies to help young people manage their feelings" (p. ...
... Yet I contend that such findings can also be understood in relation to a wider request from young people regarding mental health services. Following a systematic review of qualitative research which focused on young people's experience of living with mental illness and accessing mental health services, Woodgate et al. (2017) reiterated the call for less formal and more relaxed mental health services for young people. ...
... desire for participation mirrors findings within international research on lookedafter children's views regarding their mental health needs. Within reviewed literature(Davies & Wright, 2008;Stanley, 2007;Street & Svanberg, 2003;Woodgate et al., 2017; YoungMinds, 2012) children's desire for inclusion and participation emerged as an important theme echoing their wish to participate in decisions taken about them within mental health services. Such a call for participation suggests the need for a more collaborative relationship ...
Research on children’s views of mental health services in alternative care has been identified as an underrepresented domain within literature about children in care. This practice-based qualitative enquiry aims to elicit, represent, and understand children’s accounts and evaluations of psychotherapy. It also aims to enable children’s feedback about the methods used to engage them in research. It focuses on the psychotherapy interventions offered to children by a team of psychotherapists from different modalities, working in a residential alternative care setting in Malta. The study aims to contextualise children’s views by including the perspectives of adults involved or related to the service. It problematises the similarities and differences between children’s and adults’ views of psychotherapy and seeks to understand them in the light of child– adult dynamics within a specific context. The study also involved a children’s reference group where they were consulted about the research aims and design. Fifteen children, who were attending, or had attended therapy, consented to participate. Data with children were collected through a flexible, multiple method approach where children were offered a choice regarding how they wished to express their views. The study included the inductive thematic analysis of 29 interviews with children and 13 interviews with adults. Findings convey children’s views regarding engagement, expression, change and power dynamics, and communicate children’s needs and priorities which were absent from adults’ understandings. They challenge adultdetermined psychotherapy beliefs and practices, and inform the development of psychotherapy services within the setting. By enabling and problematising children’s agency and participation, this study contributes to knowledge about children in therapy as active agents and rights holders. It communicates the opportunities revealed by such an approach within research, offering critical insights into the development of data collection tools, and proposes a relational, interactional and multi-layered conceptualisation of children’s voices and agency.
... According to Woodgate et al. (2017), disclosure or nondisclosure is often grounded in the fear of being stigmatized, treated differently, and/or fear of being rejected by their family. Even though it was hard, disclosure enabled understanding and acceptance from the family and facilitated a dialogue about how to best help and support the patient. ...
... On the other hand, family members had the opportunity to get answers to issues they did not know about or to questions they had not dared to ask earlier. Stengård and Appelqvist-Schmidlechner (2010) and Woodgate et al. (2017) similarly describe how patients living with mental illness often seem to underestimate the need for help from others and try to deal with their problems on their own, experiencing difficulty communicating their thoughts at times. They expressed the need for additional pathways to share how they feel. ...
The aim of this study was to evaluate the usefulness of Family-Centered Support Conversations (FCSC) offered in community mental health care in Norway to young adults and their families experiencing mental illness. The FCSC is a family nursing intervention based on the Calgary Family Assessment and Intervention Models and the Illness Beliefs Model and is focused on how family members can be supportive to each other, how to identify strengths and resources of the family, and how to share and reflect on the experiences of everyday life together while living with mental illness. Interviews were conducted with young adults and their family members in Norway who had received the FCSC intervention and were analyzed using phenomenography. Two descriptive categories were identified: “Facilitating the sharing of reflections about everyday life” and “Possibility of change in everyday life.” The family nursing conversations about family structure and function in the context of mental illness allowed families to find new meanings and possibilities in everyday life. Health care professionals can play an important role in facilitating a safe environment for young adults and their families to talk openly about the experience of living with and managing mental illness.
... This can require the young person to balance autonomy in treatment decisions with the opinions and wishes of parents. Overall, young people experience a range of challenges when seeking and receiving care for mental illness [12]. Embarrassment about seeking help and poor self-worth due to the internalization of stimatizing messages about mental illness are reported [12,13]. ...
... Overall, young people experience a range of challenges when seeking and receiving care for mental illness [12]. Embarrassment about seeking help and poor self-worth due to the internalization of stimatizing messages about mental illness are reported [12,13]. The impact of discrimination and stigmatization of young people with mental illness has been found to be significant and universal, impacting on help-seeking behaviour [14]. ...
Background:
Young people face significant challenges when managing a mental illness, such as acquiring treatment autonomy, being inexperienced users of the healthcare system and associated peer-related stigma. While medication use can be challenging in its own right, there is comparatively little information about the associated experiences and needs of young people with mental illness, particularly in the Australian context. This exploratory study will provide valuable insight into how this group is currently supported in relation to medication use.
Methods:
Young people (aged 14-25 years) who had used a prescription medication for any mental illness for a minimum of 2 months were eligible to participate in this qualitative exploratory study. Semi-structured interviews were conducted between October 2017-September 2018 in consultation rooms at two youth-focused mental health support organisations in Brisbane, Queensland. Interview questions explored how participants managed their medication and related experiences. Interviews were transcribed verbatim and descriptively analysed using thematic analysis.
Results:
Eighteen young people discussed their lived experience during interviews averaging 50 min in duration. Finding the right medication that reduced symptom severity with minimal side-effects was identified as a complex experience for many, particularly when there was a lack of information, support or reduced financial capacity. Young people described a range of strategies to manage medication side-effects, changes and to support routine medication use.
Conclusions:
Young people persevered with taking medication to manage a mental illness within a healthcare system that does not adequately support this vulnerable population. There remains a clear directive for healthcare professionals to provide credible information that proactively engages young people as healthcare participants, and for policy makers to consider financial burden for this population with limited financial capacity.
... Valuable information on strategies can be obtained from qualitative studies, implementing open-ended questions, interviews or focus groups. A review aggregating 48 qualitative studies in adolescents and young adults diagnosed with psychopathology suggested general, thus not symptom-speci c, strategies like making art, talking or writing about experiences, cognitive restructuring, doing enjoyable activities like listening to music or watching television, believing in yourself, and alcohol (mis)use (Woodgate et al., 2017, see also Aass, Skundberg-Kletthagen, Schröder, & Moen, 2021; Özkul & Günüşen, 2021; Ringer, 2019). Qualitative studies in adolescents without a psychopathology diagnosis are however scarce: One recent qualitative study investigated strategies to regulate emotions (Chang et al., 2023), but no qualitative studies exist on symptom-speci c strategies used by adolescents without a diagnosed condition. ...
Adolescents' management of psychopathology symptoms is crucial for preventing diagnosed conditions, yet little is known about adolescents’ specific strategies to do so. For instance, it remains unclear how adolescents manage worrying (symptom of emotional problems) or lack of focus (symptom of hyperactivity/inattention).
To address this gap, we created an innovative online tool surveying a community sample of 218 adolescents aged 16 to 19. They shared how they manage specific symptoms of hyperactivity/inattention, conduct problems, and emotional problems, and rated effectiveness of their strategies.
Qualitative inductive analysis uncovered 51 strategies, some mirroring established emotion regulation or coping strategies, while others were novel. Interestingly, strategies varied across symptoms, and the most frequently used strategies were considered effective.
These findings shed light on the wide array of adolescent-specific and symptom-specific strategies that adolescents find helpful. They offer valuable insights for designing prevention programs that resonate with adolescents' unique lives and needs.
... Moreover, many young people tend to delay or avoid help-seeking due to a preference for self-management [34], negative perceptions of services and professionals [36], and concerns about the stigma of mental illness [35,37]. In fact, studies of young people in Western countries found that approximately 25% used services at all for mental health or substance-related problems [38][39][40][41], with many preferring the anonymity of online resources for accessing health information, education, and treatment [42][43][44]. As nearly all youth use the internet, and given the recent service environment, research on digital interventions has flourished, showing effectiveness for technologies based on internet, virtual reality, smartphones, video games, and telehealth for mental health problems [45][46][47][48], including substance use problems [32]. ...
Background
Young people are disproportionately more likely than other age groups to use substances. The rise in substance use and related harms, including overdose, during the Covid-19 pandemic has created a critical need for more innovative and accessible substance use interventions. Digital interventions have shown effectiveness and can provide more engaging, less stigmatizing, and accessible interventions that meet the needs of young people. This review provides an overview of recent literature on the nature of recently published digital interventions for young people in terms of technologies used, substances targeted, intended outcomes and theoretical or therapeutic models employed.
Methods
Rapid review methodology was used to identify and assess the literature on digital interventions for young people. An initial keyword search was conducted using MEDLINE the Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects (DARE), Health Technology Assessment Database (HTA) and PROSPERO for the years 2015–2020, and later updated to December 2021. Following a title/abstract and full-text screening of articles, and consensus decision on study inclusion, the data extraction process proceeded using an extraction grid developed for the study. Data synthesis relied on an adapted conceptual framework by Stockings, et al. that involved a three-level treatment spectrum for youth substance use (prevention, early intervention, and treatment) for any type of substance.
Results
In total, the review identified 43 articles describing 39 different digital interventions. Most were early interventions (n = 28), followed by prevention interventions (n = 6) and treatment interventions (n = 5). The identified digital technologies included web-based (n = 14), game-based (n = 10), mobile-based (n = 7), and computer-based (n = 5) technologies, and virtual reality (n = 3). Most interventions targeted alcohol use (n = 20) followed by tobacco/nicotine (n = 5), cannabis (n = 2), opioids (n = 2), ketamine (1) and multiple, or any substances (n = 9). Most interventions used a personalized or normative feedback approach and aimed to effect behaviour change as the intended outcome. Interestingly, a harm reduction approach guided only one of the 39 interventions.
Conclusions
While web-based interventions represented the most common type of technology, more recently developed immersive and interactive technologies such as virtual reality and game-based interventions call for further exploration. Digital interventions focused mainly on alcohol use, reflecting less concern for tobacco, cannabis, co-occurring substance use, and illicit drug use. Specifically, the recent exacerbation in the opioid crisis throughout North American underlines the urgent need for more prevention-oriented digital interventions for opioid use. The uptake of digital interventions among youth also depends on the incorporation of harm reduction approaches.
... Across studies, children refer to a changing sense of self and struggles with their identity associated with the diagnosis of mental illness (Woodgate et al., 2017). Children report that diagnosis can make other people 'be nicer to them', create social identity and enhance their connection to other children with the diagnosis (O'Connor et al., 2018). ...
Increasing numbers of children are meeting criteria for psychiatric disorders. While diagnoses may be of situational and individual benefit, they also have sustained and significant impacts on children's lives, including what they believe to be true, and how they understand themselves. Psychiatric diagnosis, therefore, has moral implications for children. This paper considers these moral implications, including uncertainty about the accuracy, treatment efficacy and long‐term effects of psychiatric diagnosis for children through a critical lens. Challenges of identifying, diagnosing and treating childhood mental illness are explored, including a discussion of the familial and societal contexts of adversity and understandings of accepted behaviour and responses. Emphasis is sustained on the importance of child agency and rights and how these may conflict with protective discourses about childhood, compounding epistemic injustices for children. The author proposes that there is a need to consider the child voice, while also being conscious of the boundaries of possibility of constructed reality, alongside the development of new ways of speaking about and understanding child distress. Achieving this requires questioning and critique of systems of psychiatric diagnosis applied to children and increased consideration of shared social and political responsibilities to prevent childhood adversity.
Introduction: Prescription of second-generation antipsychotics (SGAs) in youths is rapidly increasing globally, despite the potential for significant adverse effects and long-term health consequences. A known adverse reaction resulting from SGAs is metabolic syndrome (MS). Youths exposed to antipsychotics are at higher risk than adults for adverse drug reactions, including adverse events such as MS (with weight gain as the most significant adverse outcome) and other long-term endocrinological abnormalities. This study aimed to explore the experiences of young patients on factors impacting barriers to metabolic monitoring of SGAs and the strategies to address those barriers thereby providing further guidance on policy and service delivery. Methods: Semi-structured interviews were conducted with patients (youths who were prescribed SGAs) who attended Child and Youth Mental Health Services. The interviews focused on barriers to monitoring and strategies to enhance rates of monitoring that could be customized across study sites. Results: Young patients revealed that none of them had any concerns or objections to receiving anthropometric metabolic measurements. However, they seemed concerned to undergo blood tests as part of the metabolic monitoring process. Specifically, youths cited their fear of the needles as barrier to undergo the required blood tests. Youths have also reported that their dislike to healthy foods and exercise being the most common challenge they face while trying to engage in a healthy lifestyle to manage the SGAs resulted weight gain. Conclusion: Prescribers are recommended to actively engage young patients about the expected SGAs-induced adverse effects, the importance of conducting metabolic monitoring, and how to prevent and minimize the expected adverse effects from the start of initiating SGAs. This could be a vital step toward a successful treatment as the insight of youths into the details of the chosen treatment can play a significant role into treatment adherence and recovery.
The purpose of this chapter is to help providers understand the factors that influence change, recovery, and well-being so that they can (re)create contexts that empower clients and promote health. In this chapter I review theories that can help providers understand how to respond to clients who engage in unhealthy behaviors and how to create the contexts that lead to change, recovery, and well-being. In the first part of this chapter, I review three major theories of recovery and well-being that include: (1) the model of mental health recovery, (2) The model of subjective well-being, and (3) the model of psychological well-being. In the second part of this chapter, I review three theories related to understanding how people change health-related behaviors, such as substance use and other risk behaviors. Three major theories are reviewed that include: (1) the transtheoretical model of change, (2) the health beliefs model, and (3) the theory of reasoned action. I also identify general treatment approaches that enhance recovery and well-being and discuss how to efficiently and effectively deploy these approaches in ways that maximize behavior change in clients.
Treatments have been developed and tested to successfully reduce the symptoms and disabilities of many mental illnesses. Unfortunately, people distressed by these illnesses often do not seek out services or choose to fully engage in them. One factor that impedes care seeking and undermines the service system is mental illness stigma. In this article, we review the complex elements of stigma in order to understand its impact on participating in care. We then summarize public policy considerations in seeking to tackle stigma in order to improve treatment engagement. Stigma is a complex construct that includes public, self, and structural components. It directly affects people with mental illness, as well as their support system, provider network, and community resources. The effects of stigma are moderated by knowledge of mental illness and cultural relevance. Understanding stigma is central to reducing its negative impact on care seeking and treatment engagement. Separate strategies have evolved for counteracting the effects of public, self, and structural stigma. Programs for mental health providers may be especially fruitful for promoting care engagement. Mental health literacy, cultural competence, and family engagement campaigns also mitigate stigma's adverse impact on care seeking. Policy change is essential to overcome the structural stigma that undermines government agendas meant to promote mental health care. Implications for expanding the research program on the connection between stigma and care seeking are discussed.
© The Author(s) 2014.
The purpose of this study was to explore in detail how adolescents understand or explain successful outpatient treatment. Exploring helping relationships from clients' perspectives may reveal powerful elements in treatment and may challenge therapists to be effective facilitators of change. A total of 21 adolescents (15 girls and 6 boys) and their therapists (N = 25) at 6 outpatient clinics in 1 Norwegian county were recruited as successful cases. We collected data through semistructured interviews conducted 6 to 12 months posttreatment and used a combined hermeneutical and phenomenological approach to analyze the transcripts. Through their research narratives, the adolescents provided detailed information on helping relationships and recovery, as well as stories about vulnerability and stressful events posttreatment. The main themes from the analysis were the adolescents' understanding of their own suffering, readiness for change, expressions of agency, cocreation in treatment, contextual factors, and changes after psychotherapy. In the discussion, we focus on the respondents' expectations of therapy, treatment experiences, and sense making regarding recovery.
Aims
This exploratory, qualitative, study aimed to identify why young people who had experienced psychosis consistently decided to attend the Street Soccer programme.
Method
Patients using the early psychosis tertiary mental health service who were regularly attending the Street Soccer programme at the time of data collection were invited to participate in this exploratory qualitative study. Out of eight people invited, six young people agreed to be participants. All participants engaged in a one-to-one, semi-structured interview, which was recorded, transcribed and analysed using thematic analysis to reveal key themes related to the research question.
Results
The key themes revealed from the thematic analysis included: needing to be encouraged to join the group; feeling welcomed and encouraged; gaining personal benefit (getting outside the house, getting fit, feeling less anxious) and increased desire to participate in new activities.
Conclusions
Participation in the group programme was not dependent on participants having established treatment goals to initially attend but rather on persistent encouragement to attend by a health worker. The participants continued to attend the Street Soccer programme due to the group culture, and the tangible benefits they perceived were a result of their attendance.
Despite the evidence showing that young people aged 12-25 years have the highest incidence and prevalence of mental illness across the lifespan, and bear a disproportionate share of the burden of disease associated with mental disorder, their access to mental health services is the poorest of all age groups. A major factor contributing to this poor access is the current design of our mental healthcare system, which is manifestly inadequate for the unique developmental and cultural needs of our young people. If we are to reduce the impact of mental disorder on this most vulnerable population group, transformational change and service redesign is necessary. Here, we present three recent and rapidly evolving service structures from Australia, Ireland and the UK that have each worked within their respective healthcare contexts to reorient existing services to provide youth-specific, evidence-based mental healthcare that is both accessible and acceptable to young people.
The current study examines the role of mental illness-related stigma on romantic or sexual relationships and sexual behavior among youth with mental illness (MI), including youths' experiences of stigma, the internalization of these experiences, and the behavior associated with managing stigma within romantic and sexual relationships. We conducted in-depth interviews with N=20 youth with mental illness (MI) (55% male, 16-24 years, 75% Latino) from 4 psychiatric outpatient clinics in New York City. We conducted a thematic analysis to investigate shared experiences of MI stigma and its impact on youth's sexual or romantic relationships and associated behaviors. Our analysis revealed four main themes: 1) societal perceptions of those with MI as partners (societal stigma); 2) individual experiences of stigma within relationships (individual level); 3) internalized stigma of self as a partner (social-psychological processes); and 4) managing a stigmatized identity, of which some of the behaviors directly placed them at increased risk for HIV. We found that just under half of the sample (n=9/20) endorsed all themes, including engaging in HIV/STI sexual risk behaviors as a method to manage a stigmatize identity, which suggests that MI stigma and sexual risk may be linked. We discuss differences by gender and diagnosis. Findings provide new information for providers and researchers to address on the role of stigma experiences in the romantic and sexual behavior of youth in psychiatric treatment. Implications for stigma and HIV/STI prevention interventions are discussed.
Delays in initiating treatment are associated with poor clinical and functional outcomes, yet there remains unclarity as to what facilitates and what acts as barriers to accessing appropriate support for first-episode psychosis. To explore this we examined service users’ views of their illness trajectory and help-seeking behavior. To describe service-users' experiences with and understanding of their illness and pathway to care, including their need for treatment, the role of their relatives and experience with the treatment service. In-depth interviews were conducted with eleven randomly selected service users (median age 20, range 15–24, 6 males, 5 females) diagnosed with a first-episode psychosis and currently enrolled in treatment for this disorder. Fear of stigma, lack of knowledge about mental illness and normalisation of symptoms were barriers to accessing appropriate treatment, while support from significant others and information accessed by internet were reported as important elements in seeking appropriate treatment. The findings regarding barriers to treatment are in accordance with themes found in earlier studies and serve to validate these. Our study highlights the need to include psychological factors such as normalisation of symptoms and fear of stigma when attempting to reduce DUP in early psychosis, in addition to initiatives to reduce service delays. Also, a greater use of the potentials inherent in Internet and social media platforms seems important in this regard.
Our picture of childhood is a rosy one—of carefree good health, interrupted occasionally by minor illness; of innocent peer group play and academic achievement. Not for children the degenerative diseases of later life, of shrinking cognitions, restricted mobility, and a world shut down to the ambulance and the hospital bed. Yet some 10–20% of children will now develop a chronic, physical illness by the age of 18, illness that will affect them for long periods of time, waxing and waning through life; illness that can be ‘managed’ but not cured (Eiser 1990).
Objective:
The objective of the 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 websites.
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 Johanna 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: () the experience of chronic illness makes young people feel uncomfortable in their body and world; () the experience of chronic illness disrupts 'normal' life; () the experience of chronic illness is not all bad; () ways of getting through the chronic illness experience 'what others can do'; and () 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 (a) bolster their sense of self, (b) normalise the experience