research proposal on depression among youth

Systematic Review and Meta-Synthesis: How Is Depression Experienced by Adolescents? A Synthesis of the Qualitative Literature

Affiliations.

• 1 Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil, and Prodia - Child & Adolescent Depression Program, Hospital de Clínicas de Porto Alegre (HCPA), Porto Alegre, Brazil.
• 2 Hospital Materno-Infantil Presidente Vargas and Pontifícia Universidade Católica do Rio Grande do Sul, Porto Alegre, Brazil.
• 3 Georgetown University, Washington, DC.
• 4 The George Washington University, Washington, DC.
• 5 Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil, and Prodia - Child & Adolescent Depression Program, Hospital de Clínicas de Porto Alegre (HCPA), Porto Alegre, Brazil. Electronic address: [email protected].
• PMID: 38340896
• DOI: 10.1016/j.jaac.2023.11.013

Objective: To systematically investigate how youth with lived experience report their experience of depression in terms of features of depression and in relation to themselves and their environment.

Method: We conducted a systematic review of qualitative research around the world that explored the subjective experience of depression among youth (age range, 10-24 years) who had self-reported, screened positive for, or received a formal diagnosis of the disorder. We used multiple databases to search for relevant studies published in any language up until March 2023. Studies were coded regarding features of depression reported by adolescents. We also used thematic synthesis to extract and synthesize descriptions of the lived experience of depression, and to develop analytic themes. The study was registered with PROSPERO, CRD42021218300.

Results: We identified a total of 23,424 unique records, and included 39 studies in the final review, representing the views of 884 adolescents with lived experience of depression. Most of the studies were conducted in high-income countries (72.8%), and the majority of participants were female (65%). The most frequently reported features of depression were sadness (present in 92.3% of the studies), social withdrawal (76.9%), and loneliness (69.2%). In addition, we constructed 3 themes that aimed to synthesize youths' accounts of their perceptions and experiences of depression: (1) making sense; (2) factoring in culture and contextual influences; and (3) accessing support and care.

Conclusion: Some of the more commonly reported features of depression among youth are not explicitly included in the DSM/ICD diagnostic criteria but are highly relevant and closely connected to the experiences of adolescents. Moreover, contextual interpretations of depression may be more sensitive to capture representations and narratives of depression among youth. Thus, incorporating features of depression reported by adolescents could potentially increase accuracy of detection, promote collaborative work, and enhance therapeutic and care outcomes.

Study preregistration information: The lived experience of depression in adolescence: a systematic review of the qualitative literature; https://www.crd.york.ac.uk/prospero/; CRD42021218300.

Keywords: adolescence; depression; qualitative research; systematic review.

Copyright © 2024 American Academy of Child and Adolescent Psychiatry. Published by Elsevier Inc. All rights reserved.

Publication types

Grants and funding.

• MC_PC_MR/R019460/1/MRC_/Medical Research Council/United Kingdom

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• April 01, 2024 | VOL. 181, NO. 4 CURRENT ISSUE pp.255-346
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Anxiety, Depression, and Suicide in Youth

• Ned H. Kalin , M.D.

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Anxiety disorders and depression are among the most common psychiatric illnesses affecting youth. Anxiety disorders typically begin in childhood, whereas the onset of depression frequently occurs later during adolescence or early adulthood. These illnesses are highly comorbid, with pathological anxiety regularly preceding the development of depression. The lifetime prevalence of anxiety disorders when assessed in adolescents is reported to be as high as 32% ( 1 ), whereas the estimated 12-month prevalence of major depression in adolescents is approximately 13% ( 2 ). Prior to adolescence, the incidence of these disorders is the same between boys and girls; however, as girls mature and go through puberty, they are approximately twice as likely as boys to be diagnosed with anxiety and major depression. In addition to causing considerable suffering and impaired functioning, when severe, these illnesses can be life threatening. Tragically, 6,200 suicide deaths were reported in 2017 among U.S. adolescents and young adults from 15 to 24 years of age ( 3 ), and suicide is the second leading cause of death among individuals 10–34 years of age ( 4 ).

As with other psychiatric illnesses, the risks for developing anxiety disorders and major depression are due to interactions between heritable and nonheritable factors. It is estimated that the heritability of anxiety and major depression is between 30% and 40%, leaving a considerable amount of the risk to potentially modifiable environmental factors. Genome-wide association studies with increasingly large sample sizes continue to identify genes that help explain a portion of the heritability for anxiety and depression ( 5 ). However, it is important to note that a recent study has provided evidence questioning the validity of previous findings that have linked a number of the familiar, “usual suspect” candidate genes (e.g., polymorphisms of the gene for the serotonin transporter protein) to be strongly associated with anxiety and depression ( 6 ). Early life trauma, neglect, inadequate parenting, and ongoing stress are among the environmental factors that contribute to the likelihood of developing anxiety, depression, and other stress-related disorders. Adolescence is a particularly vulnerable period, as the psychosocial challenges of adolescence converge with rapid and substantial developmental changes in the brain and in hormones. Prior to the onset of anxiety disorders and major depression, at-risk phenotypes or personality traits such as behavioral inhibition ( 7 ) and neuroticism ( 8 ), which are also partially heritable, can be identified and provide an opportunity for developing early intervention strategies for children at risk.

Two now classic clinical trials have evaluated the efficacy of selective serotonin reuptake inhibitors and cognitive therapies for the treatment of major depression and anxiety disorders in youth. The Treatment for Adolescents With Depression Study was a randomized 12-week trial involving 439 adolescents with major depression in which fluoxetine, cognitive-behavioral therapy (CBT), CBT plus fluoxetine, and placebo were compared ( 9 ). Results demonstrated that fluoxetine plus CBT and fluoxetine alone were significantly better than placebo, with the combination outperforming fluoxetine alone. CBT by itself did not statistically differ from placebo (fluoxetine plus CBT, 71% response; fluoxetine alone, 60.6% response; CBT alone, 43.2% response; placebo, 34.8% response). With continued treatment, rates of response remained high for up to 36 months ( 10 ). The Child/Adolescent Anxiety Multimodal Study was a randomized clinical trial comparing 14 CBT sessions with 12 weeks of sertraline plus CBT, sertraline alone, or placebo in 488 children and adolescents (7–17 years old) with separation anxiety disorder, generalized anxiety disorder, or social phobia ( 11 ). Results demonstrated that all therapies were more effective than placebo and that the combination of sertraline plus CBT was superior to the other active treatments (sertraline plus CBT, 80.7% response; CBT, 59.7% response; sertraline alone, 54.9% response; placebo, 23.7% response). Long-term follow-up of 319 of these children revealed that only 22% were in stable remission, whereas the remainder were either chronically ill or had relapsed ( 12 ). Taken together, these studies highlight the efficacy of relatively short-term interventions and point to the need for treatments that can fundamentally affect childhood developmental trajectories that will enable initial interventions to have long-lasting positive effects.

In this regard, a more complete understanding of the pathophysiology underlying anxiety disorders and major depression in youth is necessary to advance the development of new early intervention strategies. Neuroimaging studies suggest that anxiety and depression share alterations in the function of prefrontal-limbic circuits that underlie the adaptive regulation of emotion and the processing of anxiety ( 13 ), and studies also show alterations in reward-related processing to be associated with both anxiety and depression ( 14 , 15 ). However, to move beyond the associations between brain and behavior that have been identified with neuroimaging, preclinical studies are critical to elucidate potential mechanisms that underlie anxiety- and depression-related pathophysiology. For various reasons, developing valid preclinical animal models of depression has been challenging. In contrast, anxiety and fear can be effectively modeled in rodents and nonhuman primates ( 13 , 16 ), and such research has led to a deep understanding of the circuits, cells, and molecules that are mechanistically involved in mediating adaptive and pathological anxiety. The evolutionary expansion of the primate prefrontal cortex makes nonhuman primates particularly valuable for modeling human anxiety, as the expanded primate prefrontal cortex is prominently involved in mediating internal emotional experiences and cognitive processes that are unique to primate species and that, when aberrant, contribute to psychopathology.

The neural circuitry underlying fear and anxiety includes subcortical structures such as specific amygdala nuclei, the bed nucleus of the stria terminalis, the anterior hippocampus, and brainstem regions such as the periaqueductal gray ( 17 ). These subcortical regions, via their synaptic connectivity, work in concert with the ventromedial prefrontal cortex, the anterior insular cortex, the anterior cingulate cortex, and other regions of the posterior orbitofrontal cortex to regulate and process anxiety. In relation to major depression, the presence of anhedonia is a clinical feature that clearly distinguishes depression from anxiety. This diminished capacity to enjoy and engage with one’s world is in part mediated by altered function of the brain’s reward circuitry. For exam-ple, neuroimaging studies in adolescents with depression demonstrate altered reward-related responsivity of various components of this system, including the nucleus accumbens and striatum, as well as cortical regions such as the insular and the anterior cingulate cortices ( 14 ).

This issue of the Journal focuses on depression and anxiety during childhood and adolescence and importantly includes two articles that address mental health issues in disadvantaged youth living in poverty. We include four research articles that address critical treatment areas, including the use of CBT for treating childhood grief, ketamine for treatment-resistant adolescent depression, the use of neuroimaging in anxious youth to predict treatment response, and a preschool intervention for preventing psychopathology in disadvantaged children. Another article that is relevant to the health of disadvantaged and underresourced populations presents research that combines measures of inflammation with neuroimaging to better understand factors that may underlie physical health problems in children living in poverty. Other articles in this issue are focused on understanding underlying pathophysiology (capitalizing on neuroimaging data from the large Adolescent Brain Cognitive Development [ABCD] database), examining neuroimaging measures associated with suicidal thoughts, and examining reward-related neural processing in relation to disruptive behavior disorders.

Treating Prolonged Grief in Children and Adolescents

The loss of a loved one during childhood is traumatic and increases the risk to develop stress-related psychiatric illnesses such as depression and posttraumatic stress disorder (PTSD). Boelen and coauthors ( 18 ) present data from a randomized clinical trial comparing CBT aimed at coping with grief with an intervention employing supportive counseling in 134 children and adolescents who met criteria for prolonged grief disorder. Prolonged grief disorder, which was recently added to ICD-11, is defined by the presence of significant and interfering grief symptoms that last beyond the first 6 months after a loss. Although it is not in DSM-5, prolonged grief disorder is similar to the DSM-5 diagnosis of persistent complex bereavement disorder. In this study, each participant received nine sessions of the respective therapies, and their parents or caregivers received five therapy sessions focused on supporting their children and strengthening their relationship with their child. Results demonstrated that, when assessed at 3, 6, and 9 months posttreatment, both treatments had positive effects. However, the CBT group demonstrated greater decreases in grief symptoms at all posttreatment time points, and at 6 and 12 months, CBT considerably outperformed counseling in the domains of depression and PTSD symptoms. Margaret Crane and Lesley Norris, Ph.D. candidates, along with Dr. Philip Kendall from Temple University, contribute an editorial that speaks to moving beyond the findings presented in this study toward developing personalized treatment approaches for prolonged grief and modifying current treatment strategies to make them more widely accessible to suffering youth ( 19 ).

An Intervention in Children Living in Poverty Aimed at Reducing the Later Development of Psychopathology

Poverty is associated with numerous factors that are stressful and traumatic. To assess the extent to which an early school intervention can make a difference for impoverished children, Bierman et al. ( 20 ) report data from a randomized clinical trial examining the effects of an evidence-based intervention on the development of psychopathology, when assessed years later during adolescence. In this study, 356 4-year-old children from low-income families received an intervention consisting of a social-emotional learning program combined with an interactive reading program that was compared with usual educational practices. The children were recruited from three counties in Pennsylvania and came from families with a median annual income of $15,000. While differences between the interventions were not apparent when children were in the 7th grade, significant differences were observed when children reached 9th grade. For example, significantly fewer conduct problems, emotional symptoms, and peer problems were present in the 9th graders who, at 4 years of age, had participated in the social-emotional learning program. This study underscores the need to view the societal issue of poverty as stressful and traumatic, the disparities in health care associated with poverty, and the profound effects poverty can have on families and children. The findings are encouraging, with important public health implications, and clearly support early interventions aimed at promoting healthy social, emotional, and cognitive development in children facing the chronic adversity of growing up in poverty.

Enhanced Linkages Between Neural Activation and Inflammation in Impoverished Children

Miller and coauthors present data from a sample of early adolescents supporting an enhanced association between brain activation and peripheral inflammation that is selective to children living in poverty ( 21 ). The findings may shed light onto why underprivileged children have increased vulnerabilities to develop psychiatric and physical illnesses. The study was performed in 207 12- to 14-year-old children from the Chicago area who came from families across the socioeconomic spectrum. To explore a link between peripheral inflammation and neural function, the investigators correlated blood inflammatory markers (C-reactive protein, tumor necrosis factor-α, and interleukins-6, -8, and -10) with functional neuroimaging measures that assessed threat- and reward-related neural activation. First, the authors found that children living in poverty had higher levels of inflammation than children from higher socioeconomic backgrounds. In addition, the results demonstrated that in impoverished children, the inflammatory markers were positively correlated with both threat-related amygdala and reward-related striatal activation. The authors speculate that this enhanced coupling between neural and inflammatory processes may be due to the developmental impact of chronic adversity and may be a mechanism linking poverty to increased stress reactivity and illness. Interestingly, the positive relation between inflammatory markers and striatal activation was not in the predicted direction. Dr. Charles Nemeroff, from the University of Texas at Austin, contributes an editorial that emphasizes the deleterious effects of poverty on poor health and mental illness and further elaborates on the immune and neural alterations found in children who grow up in such impoverished and unfortunate conditions ( 22 ).

Neuroimaging Measures Are Not Good Predictors of Childhood Suicidal Ideation and Behavior

Vidal-Ribas and coworkers ( 23 ) use the large ABCD multimodal imaging database to comprehensively assess the usefulness of structural and functional brain measures in predicting childhood suicidal thoughts and behaviors. In a sample of 7,994 9- to 10-year-old children, the researchers found that 14.3% of the sample, or 1,140 children, had suicidal ideation or behaviors as reported by themselves or by caregivers. The occurrence of suicidal thoughts and behaviors was associated with increased levels of psychopathology and psychosocial adversity. Of the more than 5,000 statistical tests that were performed with multiple imaging measures (to assess cortical thickness, resting-state functional connectivity, and task-related functional activation), only one test survived correction for multiple comparisons. This finding revealed a relation between reduced thickness of the left bank of the superior temporal sulcus and caregiver-reported suicidal thoughts and behaviors. The authors draw the conclusion from these overall negative findings that current neuroimaging methods are not useful in reflecting the biological underpinnings of suicidal ideation and behavior in youth. In their editorial, Dr. Randy Auerbach from Columbia University and Drs. Henry Chase and David Brent from the University of Pittsburgh discuss the comprehensive and thorough nature of the study, the potential meaning of the superior temporal sulcus finding, and other critical aspects worth considering in future studies aimed at understanding the factors underlying youth suicide ( 24 ).

Reward-Related Functional Brain Alterations in Children With Disruptive Behavior Disorders and Callous-Unemotional Traits

Hawes et al. examine the extent to which children with disruptive behavior disorders (DBDs) (e.g., oppositional defiant disorder and conduct disorder) have alterations in neural responses to the anticipation and actual receipt of a reward ( 25 ). As in the Vidal-Ribas et al. study ( 23 ), these investigators used the ABCD neuroimaging database to provide a large sample size. Alterations in reward processing characterized by difficulties in delaying gratification and overvaluation of immediate rewards have been hypothesized to underlie externalizing phenotypes. In this study, reward-related brain activation in response to a monetary incentive delay task was examined in youth with DBDs who were subdivided into those with DBDs only (N=276) and those with DBDs with callous-unemotional traits (N=198), a characteristic that is more likely to be associated with antisocial behavior. The data from these children were compared with neuroimaging data from 693 typically developing youth. The children were, on average, 9.5 years old when studied. The findings from the study demonstrated that regardless of the presence of callous-unemotional traits, youth with DBDs exhibited decreased dorsal anterior cingulate activation in response to reward anticipation and increased orbitofrontal cortical and nucleus accumbens activation during reward receipt. Some neural activation differences between the DBD-only group and the DBD callous-unemotional trait group were also observed. Taken together, these findings shed light on the cortical control systems and subcortical reward-related neural substrates that may underlie the maladaptive behaviors characteristic of youth with DBDs.

Pretreatment Reward-Related Brain Activation Is Associated With Response to Psychotherapy in Youth With Anxiety Disorders

Sequeira and coworkers ( 26 ) explore the use of pretreatment functional imaging measures to predict treatment responses to psychotherapy in 9- to 14-year-old children with anxiety disorders (i.e., separation anxiety disorder, generalized anxiety disorder, or social anxiety disorder). Similar to other articles in this issue, this study probed reward-related brain activation. In this case, activation of brain regions encompassing the medial prefrontal cortex and the striatum was compared between the conditions of winning a reward relative to the experience of losing. The study included 50 children treated with 16 sessions of CBT, 22 children treated with child-centered therapy, and 37 healthy comparison youth. The intervention was effective, as 67% of the patients, regardless of treatment, responded to the intervention. Prior to treatment, greater activation of the medial prefrontal cortex was found in the patients with anxiety compared with the control subjects. However, the authors note that this difference in medial prefrontal activation could be accounted for by the co-occurrence of depressive symptoms in the anxiety group. Importantly, the authors found that as a group, treatment responders compared with nonresponders had increased pretreatment activation of regions encompassing the subgenual anterior cingulate cortex and the nucleus accumbens. These initial findings point to the potential importance of understanding reward-related brain systems in relation to psychotherapeutic outcomes in youth with anxiety. The authors speculate that increased striatal responsivity to rewards prior to treatment could be associated with increased motivation and engagement with therapy.

A Proof-of-Concept Trial Assessing Ketamine for Depression in Adolescents

Dwyer and colleagues ( 27 ) report the results of a small randomized double-blind single-dose crossover study in 17 adolescents with major depression who had not responded to at least one adequate trial of an antidepressant. In this trial, intravenous ketamine (0.5 mg/kg) or intravenous midazolam (0.045 mg/kg) was administered to each patient in a crossover design with a 2-week interval between treatments. Patients remained on their current psychiatric medications throughout the study. Sixteen patients completed both treatments, and the primary outcome was depression severity measured with the Montgomery-Åsberg Depression Rating Scale (MADRS) 24 hours after the infusion. Results demonstrated that 24 hours after infusion, ketamine had a significantly greater effect than midazolam in reducing depressive symptoms. For the midazolam infusion, the average pretreatment MADRS score was 31.88, and 24 hours later it was 24.13. For the ketamine infusion, the average pretreatment MADRS score was 30.56, and 24 hours later it was 15.44. Responders were defined by a 50% reduction in the MADRS score, and it was found that ketamine was associated with a response in 77% of the patients, with 35% of patients responding to midazolam (five of six of these participants also responded to ketamine). Compared with midazolam, the ketamine infusions were associated with reduced MADRS scores at all time points measured up to 14 days postinfusion. Ketamine was associated with dissociative side effects that were transient as well as with transient changes in blood pressure and heart rate. In their editorial ( 28 ), Drs. Parikh and Walkup from Northwestern University discuss the potential importance of this finding in relation to treating adolescent depression, but they also put into context such issues as the small sample size, the difficulty maintaining blinding because of ketamine’s dissociative effects, and concerns raised by others regarding the role of opiates in mediating ketamine’s effects in relation to its addiction potential ( 29 ).

Conclusions

Many psychiatric disorders have their origins early in life, which is clearly the case with anxiety and depression. In addition, the adolescent transition period is a time of increased risk during which psychiatric illnesses, especially depression, tend to emerge. Although there are adequate treatments for youth with anxiety and depressive disorders, many individuals do not respond to current treatments, and it is important to emphasize that many young people with psychiatric illnesses do not have access to available treatments. There is no question that we need better treatments and better access for children suffering from these disorders. This issue of the Journal highlights recent insights and clinical advances related to the treatment of anxiety disorders and major depression. Findings with the potential to directly affect the clinical care of youth include: demonstration of the efficacy of CBT in treating prolonged grief; early school socioemotional and cognitive interventions in disadvantaged children that prevent adolescent psychopathology; the rapid efficacy and safety of ketamine in reducing depressive symptoms in youth with treatment-resistant depression; and the promise of using functional neuroimaging to inform treatment choice and predict outcomes in youth with anxiety disorders. Other articles in this issue address pathophysiology, demonstrating increased coupling between brain and peripheral inflammatory markers in impoverished youth, altered reward-related brain activation in youth with DBDs, and a lack of association between structural and functional neuroimaging measures with suicidal ideation and behavior in youth. Continued research focused on a better understanding of the mechanisms underlying the early life risk to develop anxiety disorders and major depression is critical for the development of novel, improved treatment strategies. Efforts should be devoted to developing treatments that have the potential to positively affect the at-risk neurodevelopmental trajectories of vulnerable children. Such early life interventions provide the hope of moving beyond symptomatic treatment and toward prevention strategies.

Disclosures of Editors’ financial relationships appear in the April 2021 issue of the Journal .

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• Cited by None

• Anxiety Disorders
• Depressive Disorders
• Suicide and Self-Harm
• Child/Adolescent Psychiatry

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What Do We Know About Depression Among Youth and How Can We Make Progress Toward Improved Understanding and Reducing Distress? A New Hope

• Invited:Review
• Published: 07 June 2023
• Volume 26 , pages 919–942, ( 2023 )

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• Benjamin L. Hankin   ORCID: orcid.org/0000-0003-2446-0258 1 &
• Julianne M. Griffith   ORCID: orcid.org/0000-0002-2414-6245 1  

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This paper summarizes many findings about depression among children and adolescents. Depression is prevalent, highly distressing, and exerts considerable burden worldwide. Rates surge from childhood through young adulthood and have increased over the last decade. Many risk factors have been identified, and evidence-based interventions exist targeting mostly individual-level changes via psychological or pharmacological means. At the same time, the field appears stuck and has not achieved considerable progress in advancing scientific understanding of depression’s features or delivering interventions to meet the challenge of youth depression’s high and growing prevalence. This paper adopts several positions to address these challenges and move the field forward. First, we emphasize reinvigoration of construct validation approaches that may better characterize youth depression’s phenomenological features and inform more valid and reliable assessments that can enhance scientific understanding and improve interventions for youth depression. To this end, history and philosophical principles affecting depression’s conceptualization and measurement are considered. Second, we suggest expanding the range and targets of treatments and prevention efforts beyond current practice guidelines for evidence-based interventions. This broader suite of interventions includes structural- and system-level change focused at community and societal levels (e.g., evidence-based economic anti-poverty interventions) and personalized interventions with sufficient evidence base. We propose that by focusing on the FORCE (Fundamentals, Openness, Relationships, Constructs, Evidence), youth depression research can provide new hope.

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Introduction

Over the last several decades, a prodigious literature has amassed on depression in children and adolescents. Major and consequential epidemiological findings show that (1) depression exhibits high prevalence and is associated with substantial distress and burden around the world (World Health Organization [WHO], 2017 ); (2) rates surge six-fold from childhood through late adolescence with steady, persistent rates throughout adulthood (Hankin et al., 1998 , 2015 ); and (3) rates are increasing across generations, with current prevalence rates exceeding those seen just 10 years ago (Daly, 2022 ; Jorm et al., 2017 ). As such, public policy experts recommend annual screening of depression for individuals ages 12 and above (USPSTF, 2022 ). In an effort to better understand (and interrupt) the development of depression across childhood and adolescence, researchers have identified numerous risk and resilience factors that prospectively predict depression (Hankin & Cohen, 2020 ). Indicated or selective preventions can reduce the likelihood of future depression for youth Footnote 1 with elevated symptoms or risk factors (Cuijpers et al., 2021a , 2021b ). Moreover, there exist several evidence-based treatments, including psychotherapies and pharmacotherapies, each of which works generally equally well to relieve youth depression (Weersing et al., 2017 ). Table 1 enumerates what we know regarding risk factors for youth depression, and Table 2 summarizes knowledge of evidence-based interventions (treatments and preventions).

The field has accumulated an impressive corpus of knowledge. At the same time, however, it is an undeniable reality that many young people across the world continue to suffer from and with depression, and there is an urgent and critical need to address this suffering for as many people as possible. Consider global data, for example, which indicate that the age-standardized prevalence of depression increased by 4.2% from 1990 to 2013, whereas the prevalence of anxiety decreased by 0.5% over this same period (Global Burden of Disease Study, 2013 Collaborators, 2015 ). This depression rise has been accompanied by co-occurring increases in rates of treatment; yet, no country included in this global analysis showed diminished depression rates over this time period. Even with many empirically supported treatments, there has been little sustained progress in reducing depression’s burden, or decreasing depression-related distress and suffering since 1980s. What can be done to address clear gaps to reduce the considerable and highly consequential distress and burden associated with youth depression?

The purpose of this paper is to revisit and critically interrogate how and what we think we know about youth depression and its interventions. To this end, we review the sociohistorical context in which the phenomena termed “depression” were conceptualized and highlight the ways in which our academic notions and “best practice” assessment instruments both do and do not align with the symptoms and features of this depression construct. In a similar manner, we consider contemporary prevention and treatment strategies and provide rationale for expanding the range and scope of intervention efforts to more efficiently and effectively respond to youth depression and prioritize structural- and systems-level change.

Ultimately, we strive to provide A New Hope for advancing progress on youth depression. To this end we take some positions (admittedly ours) for what we believe are directions and priorities that hold promise for both improving the scholarly understanding of youth depression and reducing depression-related distress and burden worldwide. We believe meaningful progress can be made without unduly devoting more time, energy, and limited resources investigating primarily unproven biological and technological solutions (e.g., certain biomarkers, Joober, 2022 ; Kapur et al., 2012 ; Winter et al., 2022 ; or innovative pharmacotherapeutics, such as psilocybin or other psychedelics; McClure-Begley & Roth, 2022 ) in the hope that some kind of singular breakthrough will meet massive current needs and close the prevalence-intervention gap.

As Darth Vader famously said in the original Star Wars: A New Hope (episode IV), “Don’t be too proud of this technological terror you’ve constructed. The ability to destroy a planet, or even a whole system, is insignificant next to the power of the Force.” Our perspective and the main points we emphasize can be summarized by focusing on the power of the FORCE: Fundamentals are essential to ground clear thinking informed by humility, history, and philosophy; Openness is needed to explore new ideas with scientific rigor and transparency; Relationships matter for understanding and intervening in youth depression across all levels in social–ecological systems; Constructs are key in the conceptualization, measurement, and classification of depression; and Evidence must be collected and evaluated, grounded in construct validation with epistemic iteration, to ensure accurate, reliable, reproducible knowledge with scientific and practical utility.

In this paper, we have three main goals. First is to provide an overview of what the field knows about depression among youth, via Table 1 for depression risks across ecological levels and Table 2 for interventions. All of this knowledge is grounded in how depression as a construct is currently, and has historically, been conceptualized and measured. Our second goal is to reinvigorate serious academic progress focused on defining and explicating conceptually what depression is among youth as informed by developmental psychopathology. As we summarize in our historical review, necessary and important steps in the construct validation process (content conceptualization; measurement) were minimally engaged in the study of adult depression, and this incomplete conceptual understanding has carried forth in the study of depression among youth. Our final goal is to address immediate needs to reduce the prevalence and distress associated with youth depression. We propose ways for responding to unmet needs of youth at risk for and affected by depression, as well as their families and communities. We begin with an eye toward how we might improve the science of youth depression, with an emphasis on issues of methods, measures, and construct validity. We then propose directions to enhance interventions to alleviate the prevalence and distress of youth depression and suggest efforts that engage multiple ecological systems and stakeholders.

What Is Depression and What Do We Know About It?

For optimal conceptual clarity, we explain and unpack what we mean by specific terms, especially “depression,” among children and adolescents. We define the term “depression” as a construct, i.e., a complex concept intended to synthesize varied components into a cohesive “thing,” one which cannot be directly measured but is inferred from available data. This latent entity is capable of organizing features and processes that cannot be directly observed. We use the terminology of “constructs,” as is typical in psychological science (e.g., Borsboom et al., 2004 ; Cronbach & Meehl, 1955 ; Messick, 1987 ), and these constructs are defined and identified within their nomological networks (Cronbach & Meehl, 1955 ).

Tables 1 and 2 (and other exemplary expert reviews; e.g., Herrman et al., 2022 ; Thapar et al., 2022 ) synthesize the state of knowledge in depression among youth. This summary is based predominantly on modern DSM/ICD perspectives that have primarily conceived of depression as a categorical disorder with philosophical grounding in hard realism. Hard realism states that entities have real essences in nature that provide clear boundaries that separate and can categorize entities (Kendler et al., 2011 ). For example in the periodic table from chemistry, a paradigmatic example is gold as an element, in which gold’s 79 protons (its atomic number) constitute a real essence that separates this element from all other elements. Analogously for psychological disorders, such as depression, hard realism implies the existence of simple, unifying etiological causes (e.g., genetic or brain dysfunctions), and knowing depression’s essential causes enables clear categorization from other psychopathologies. Searching for biomarkers via novel, emerging technologies makes sense when depression is conceptualized through this lens of hard realism in which disorder is believed to be an essential kind. Yet, leading philosophical scholars cogently argue that psychopathological disorders, such as depression, are not essential kinds and do not possess any real essence. Instead, such philosophers assert that depression exhibits characteristics of either soft realism (e.g., as in the case of biological species) with fuzzy boundaries and conflicting conceptualizations, or as a practical kind, based on an instrumentalist approach to science that is pragmatic and avoids deep ontological claims (Kendler, 2022 ).

A Brief History of Depression Over Time: Classification and Its Discontents

What we know about youth depression is grounded in a set of assumptions (e.g., is depression of hard or soft realism, or a practical kind?) and a set of historical events occurring in a particular social–political context. These assumptions and history, both of which are rarely examined, have exerted outsized influence and largely set the mold in which the conceptual contours and measurement of today’s youth depression have been cast. Starting in the mid-late 1970s and persisting into the present, many key notions and assumptions about “what depression is” have largely been determined by particular clinical authorities, and their scholarly conceptions of depression have been concretized and operationalized in an interrelated set of systems and classifications, including the DSM and ICD. These official nosologies dominate how nearly all mental health scholars and applied workers across numerous disciplines think of depression, define it as a syndrome, picture and envision diagnosis, and use assessment instruments. These notions and assumptions then inform the measurements that comprise the data that formatively affect our body of knowledge regarding youth depression. As such, much of what we know about youth depression, including its prevalence and developmental trajectories, comorbidities, risks, and interventions are filtered through a particular contextual lens shaped by philosophical principles and specific historical events. Appreciation for this historical and philosophical undergirding can bring greater understanding of our present knowledge base, as summarized in Tables 1 and 2 .

In this section, we discuss how key historical events over the last century provided a particular context that affected who the field has regarded as primary clinical experts, and shaped how these authorities chose to conceptualize and operationalize depression via particular signs and symptoms. In contemporary research and practice, these authorities’ decisions have largely been uncoupled from the sociohistorical context in which they emerged, yet still these specialists and their beliefs continue to dominate our conceptual and applied understanding of depression (Kendler, 2017 ; Kendler et al., 2010 ). With the dominance of modern DSM in mind, consider the following observation noted by an eminent biological psychiatrist who values ongoing study of phenomenology in psychopathology:

DSM-III and its successors… became universally and uncritically accepted as the ultimate authority on psychopathology and diagnosis. DSM forms the basis for psychiatric teaching to both residents and undergraduates throughout most of the United States…. Because DSM is often used as a primary textbook or the major diagnostic resource in many clinical and research settings, students typically do not know about other potentially important or interesting signs and symptoms that are not included in the DSM…. Validity has been sacrificed to achieve reliability. DSM diagnoses have given researchers a common nomenclature—but probably the wrong one . (emphasis added; Andreasen, 2007 , p. 111).

Our perspective builds on others’ recent work in similar areas, including works emphasizing fundamental philosophical principles (e.g., Aftab et al., 2021 ; Kendler, 2022 ; Kendler and Zachar, 2019 ), historical overviews (e.g., Clark et al., 2017 ; Harrington, 2019 ), constructs (e.g., Bringmann et al., 2022 ; Hayden, 2022 ), and measurement (e.g., Fried et al., 2022 ; Haslbeck et al., 2021 ). We recommend to interested readers these excellent published pieces. Nearly all focus on adults. There exists far less literature pertaining to critical history and philosophy relevant for conceptualizing and measuring depression specifically among children and adolescents. This is a clear gap in the literature and field’s understanding, as such knowledge from adults should not be uncritically adopted in developmental downward extensions to children and adolescents. As we discuss later, these underexamined developmental downward applications of such fundamental concepts and principles can have unintended consequences when principles and practices are applied “top down” with less focus on complementary “bottom up” perspectives from phenomenological and developmental sciences.

The views and perspectives affecting depression’s definition and measurement result from a set of historical conditions that are deeply intertwined with changing political and institutional values and priorities. Funds for research and professional training in clinical psychology and psychiatry were first made possible by the passage of the American Mental Health Act in 1946, shortly after the end of World War II. Shortly thereafter, the National Institute of Mental Health (NIMH) was created with Robert Felix as its founding director, and they emphasized the social roots and consequences of mental health. At the point of its inception, the NIMH concentrated significantly more funds on research connecting mental illness with social determinants of health including poverty, social isolation, poor education, overcrowding, and violence compared with biological or medically focused risks and correlates. This history suggests that the contemporary, medicalized conceptualizations of depression were not a necessary, logical eventuality or even a product of naturalistic scientific progress.

Continuing this history and its impact on classification for psychopathologies, including depression, consider several well-intentioned changes implemented by the United States government and Food and Drug Administration (FDA) during the 1960s–1970s. Specifically, the Kefauver–Harris Amendment of 1962 required that medications needed to demonstrate empirical evidence for their safety and efficacy in terms of treating a specific disease in order to be sold. Then in the 1970s, the FDA mandated that efficacy testing of new drugs required controlled clinical trials. For the growing psychiatric pharmaceutical industry, these novel mandates introduced a new conundrum. If controlled clinical trials required diagnostically homogeneous patients, and no physiological tests existed to definitively establish the presence of psychopathology, how could researchers ensure that participants in a psychiatric clinical trial all share the same disorder? Herein laid the essential problem: No reliable psychiatric diagnostic classification system existed in the 1970s!

A predominant reason for poor reliability in psychiatric diagnosis was the dominance of psychodynamic paradigms in psychology and psychiatry during the 1960s and early 1970s. According to these psychodynamic theories, psychopathology reflects varied intrapsychic conflicts resulting from unconscious drives and impulses and disturbances in early psychosocial development. The leading psychodiagnostics manual in the 1960s–1970s—the Diagnostic and Statistical Manual, Second Edition ( DSM-II ; 1968 )—was an administrative manual grounded in abstract psychodynamic theory. There was little interest in the symptoms themselves and the ways in which they might be organized into coherent syndromes or disorders. Within psychodynamic practice and tradition, depression symptoms were conceptualized and explained as defense against anxiety (the core of all “psychoneurotic disorders”). In other words, psychodynamic conceptual models viewed depression as an expression to cope with underlying anxiety, rather than a phenomenon onto itself that required inquiry and understanding.

Yet, the novel FDA regulations of the 1970s required some simple, straightforward, and reliable way to assign individuals to homogenous groups of “depression” for the purpose of controlled efficacy studies. To continue to sell widely prescribed and used antidepressant medications to adults at that time (e.g., Elavil), pharmaceutical companies needed some means to create groups of homogeneous patients diagnosed with the same disorder (later to be named Major Depression Disorder; MDD, in DSM-III). This urgent press contributed to pressure for a psychiatric diagnostic classification that was first and foremost reliable . That is, clinicians needed to operationalize features of depression to reach adequate consensus on the presence and most observable properties of the phenomena, not its conceptual nature . Accordingly, the developers of the DSM-III endeavored to define mental disorders, including depression, “regardless of the cause,” so uniform diagnostic criteria were created with avowed agnosticism toward potential causal processes or underlying latent constructs that such criteria might be understood to represent. Footnote 2

Instrumental in the early development of an approach toward improving the reliability of classification of psychiatric disorders was a small group of clinical scholars (e.g., psychiatrists, psychologists) from the psychiatry department of the Washington University in St. Louis. This group of scholars, who were named “neo-Kraepelinians,” believed that the development of diagnostic criteria for the classification of mental illness was a valuable and legitimate enterprise. The neo-Kraepelinians thought that the abysmal inter-rater diagnostic agreement noted in voluminous studies from the 1970s could be solved via the creation of operationalized diagnostic criteria and the use of standardized symptom checklists. Feighner led the group in developing diagnostic criteria proposals and checklists (known as Feighner Criteria (Feighner et al., 1972 ), which influenced Research Diagnostic Criteria (RDC; Spitzer et al., 1975 ) and then ultimately the officially approved and recognized DSM-III (APA, 1980 ). In contrast to earlier versions of the DSM (I and II) which were guided by psychodynamic perspectives, the DSM-III aimed to inform the diagnosis of discrete disorders using observable symptom-based criterion, representing a radical shift in clinical approaches to diagnosis and classification. The practical operationalization system formally introduced by the DSM-III permitted researchers and clinicians to use a systematic approach to assemble potentially disparate symptoms into discrete diagnoses with improved reliability.

An important philosophical piece in this history of the early developments leading to DSM-III is that the neo-Kraepelinians intended the symptom criteria they proposed for each disorder (which were then instantiated into DSM-III) to represent a hypothetical diagnostic construct . The psychiatrists at Washington University did not intend nor believe that the symptom lists they proposed for each diagnosis were meant to sufficiently and literally constitute the disorder in an explicit one-to-one manner (Kendler, 2017 ). Rather, the influential neo-Kraepelinians believed that depression and other disorders are hypothetical constructs, so these psychiatrists also developed and proposed an initial set of validity criteria (known as “Robins & Guze criteria”; Robins & Guze, 1970 ). Their underlying assumptions for these validity criteria were grounded in a biological psychiatric medical model, not the psychodynamic theories still predominant in the 1970s, nor other possible conceptual frameworks (e.g., social determinants of health as originally supported by Robert Felix at the start of NIMH). Their views and decisions presumed that depression and other disorders are “essential kinds” in nature and were intended to mirror other medical disorders in other branches of medicine (Blashfield, 1984 ).

What relevance does this history have for the conceptual definition and measurement of the construct of depression today and going forward? This historical context provides the framing in which modern priorities, principles, and beliefs were first set, and understanding these prequels provides important background to explain how and why the dominant DSM/ICD became substantiated as the official classification system. Taken together with its implicit emphasis on essentialism and biological psychiatry, the modern DSM system and this biological framework have driven most basic and applied research since the early 1980s. This forms the bedrock foundation for most of the current knowledge on risks and interventions for depression among adults, adolescents, and children. The neo-Kraepelinians broke new ground by creating consistent symptom checklists intended first to increase reliability of psychopathological disorders conceived as discrete diagnoses. The shifting in the set of assumptions emphasizing biological predominance reflected the neo-Kraepelinians’ beliefs that psychiatry ought to investigate biological causes and treatments of discrete mental illnesses and should position itself as a modern, scientific branch of medicine. This small group of influential authorities at Washington University exerted a tremendous impact on DSM-III and subsequent nosological successors (e.g., currently DSM-5). For these reasons, it behooves us to understand how the neo-Kraepelinians’ assumptions and beliefs affected depression and other disorder definition, conceptualization, measurement, and then interpretation of data for eventual knowledge generation.

Also breaking from the predominant psychodynamic perspective, a few clinical scholars (e.g., Beck, Hamilton) in the mid-late 1960s developed standardized checklists to measure some depression symptoms with adults. These measures (Beck Depression Inventory; Hamilton Depression Rating Scale) reflect each author’s conceptualization of depression based on their observations of particular depression phenomena in different contexts and settings. Hamilton created the HDRS in 1960, for example, drawing on his knowledge and experience with already diagnosed severely depressed hospitalized inpatients, and he emphasized observable indicators such as psychomotor retardation (including slower speech) and weight loss relatively more so than self-reported symptoms. It is notable that the HDRS has remained the gold-standard depression clinical ascertainment for randomized control trials (RCTs) in adults over the last 60 years and is used in about 90% of antidepressant drug trials (Cipriani et al., 2018 ). The development of the HDRS can be contrasted with that of the Beck Depression Inventory (BDI), for instance, which was informed by Aaron Beck’s evolving cognitive theory of depression, and accordingly, placed relatively more emphasis on individuals’ self-reported affective and cognitive experiences.

These and other depression measures offer divergent conceptualizations of what the depression construct is. These differing conceptualizations were grounded in each clinical scholar’s own beliefs, phenomenological observations, and emphases, as well as the larger social and philosophical contexts in which these experts learned and worked. Given such widely divergent conceptual notions and histories, it therefore is not surprising to learn that empirical correlations among these and other depression scales are small to moderate (r’s ranging from 0.2 to 0.5). With this degree of small-to-moderate convergent validity, one cannot assume that different depression instruments equivalently assess the same construct of “depression.” With the discrepant conceptual and substantive content between different measures, the various depression assessments are not interchangeable. It is important to align practical, psychometric, and conceptual practices.

We need to be reminded that the ways in which we construe depression are a product of both the phenomenology and characteristics of depression as well as the limitations imposed by our theories and methods…. This has resulted in a situation where a great deal of what we think we know about depression in children and youth may not be about depression as such. (Hammen & Compas, 1994 , pp. 586–588)

When it comes to assessing depression among youth, the state of knowledge and measurement practice has lagged behind that of adult depression. Prior to Kovacs developing the Children’s Depression Inventory (as a downward extended youth-modification of the BDI) in 1977, for example, few scholars believed that children could be depressed. Indeed, the dominant beliefs and theories of the time held that (1) children are generally happy and show little persistent sadness, (2) youth lack mature social or emotional or cognitive structures deemed necessary for depression, and/or (3) kids manifest behavioral conduct problems (not primary depression-like symptoms as presenting problems or concerns) as a syndrome labeled “masked depression” (e.g., Cantwell, 1982; Strober & Werry, 1986 ). Even as youth depression slowly emerged as a topic of independent inquiry in the late 1970s, few developmental adaptations were considered. Indeed, when it came time to define the content, symptoms and criteria sets for childhood depression for DSM-III, historical writing suggests that key decisions were made based on predominantly entrenched beliefs around adult depression (Strober & Werry, 1986 ). It was largely assumed that youth depression comprised the same symptoms, expressed in the same way, as adult depression, and as a result, diagnostic criteria for depression among children and adolescents in DSM-III were asserted to be nearly the same as those for adults. Once the official psychiatric classification system authoritatively asserted this set of criteria defining depression in youth, the conceptual definition of youth depression as a construct as well as its measurement were established, and later reinforced and reified. Many youth depression assessments were created by translating adult conceptualizations and measurements downward to children and adolescents (e.g., Kendall et al., 1989 ; Klein et al., 2005 ; Weiss & Garber, 2003 ).

So much depends on how scientists conceptualize the problems they work on. Observations lead to interpretations. Interpretations become concepts. And concepts may become dogmas that feel so intuitive, so natural, that they are accepted without question. We should, from time to time, re-evaluate the core beliefs of our fields of study. (Rust & LeDoux, 2023 , p. 4)

We believe it is time to reconsider and revise (to the extent needed) how youth depression is conceptualized, rather than reflexively perpetuate the initial conceptual system of DSM-III that barely questioned and evaluated depression developmentally.

Construct Validity of Currently Oft-Used Depression Measures

As we elaborated in the previous section, the way in which depression is conceptually defined and measured today emerged as a function of a specific set of philosophical principles, scholars’ beliefs, and historical movements and events. In this section, we seek to describe how the field might move forward by re-energizing efforts toward construct validation. We argue that of the three phases of the construct validation process, the first two fundamental primary steps (i.e., defining the construct and operationally translating that conceptualization into reliable measurement, respectively) have historically been, and continue to be, overlooked. Reinvesting in these initial stages, especially of defining clearly the construct, can advance development and implementation of measures that adequately capture what depression is to the youth who experience it.

Implementing psychometrically sound measures starts with sufficient coverage of the key conceptual content. As there exist many ways to gauge construct validity, we focus here on internal structural aspects of depression assessments. Our review considers the degree to which the commonly used instruments may be covering and capturing important content, signs, symptoms, and features of the depression construct as phenomenologically observed and described by youth and other informants (e.g., caregivers, teachers, providers) with most direct access to children’s depression features.

Evidence to date suggests that DSM’s operationalization of the depression construct does not adequately capture and index many features of depression most salient to youth’s phenomenological experiences. For example, in large school-based community samples of Brazilian adolescents aged 14–16 years, researchers used network analyses of self-reported symptoms to evaluate the structure and centrality of depression symptoms to understand which symptoms tend to correlate with other another and are most densely connected with other symptoms (Manfro et al., 2021 ). Certain symptoms that are not captured in current DSM-based criteria, such as loneliness and self-hatred, were among the most interconnected, central, and frequently reported facets of depression, alongside DSM-based symptoms of sadness and worthlessness. These findings among a non-clinical sample of adolescents recruited from the general community align with research examining adult depressed patients, who endorse therapeutic priorities focused on improved self-esteem, as well as reduced loneliness and social isolation (Chevance et al, 2020 ). Manfro and colleagues’ network analysis also showed that hopelessness (not a core DSM MDD feature, but an accessory symptom in ICD-11) served as a highly central symptom of adolescent depression, consistent with adult work finding that hopelessness reliably differentiates depressed from non-depressed participants (McGlinchey et al., 2006 ). Surprisingly, anhedonia, one of the cardinal, criterial symptoms for MDD according to the DSM, was not highly interconnected with other depression symptoms.

This pattern of findings reinforces our proposition that the conceptualization of depression, as described by modern DSM (III through 5), insufficiently reflects the construct of depression as youth experience their symptoms. Moreover, the content of any given depression scale is often quite different from that of another. An analysis of eighteen youth depression instruments found that 52 separate symptoms were included, and these scales only comprised around 50% of the symptoms needed for MDD diagnosis according to DSM. Low content overlap was also observed across the measures, as only 29% of symptoms coincided across scales (Vilar et al., 2022 ). This heterogeneity of assessments extends to RCTs for adolescent depression treatment: 19 different outcome measures were used in 30 trials according to one recent review (Mew et al., 2020 ).

Understanding of the construct of depression as phenomenologically experienced by depressed individuals is underdeveloped. Recent qualitative research conducted among an international sample of depressed adults, as well as their providers and caregivers, indicates that features of mental/psychological pain (described often as “torture,” or “suffering”) were the most frequently endorsed and experienced, followed by anxiety and sadness (Chevance et al., 2020 ). It is notable, however, that none of the most commonly used depression assessments actually measure mental pain as a particularly important feature. Unfortunately, the commonly used depression measures do not cover some of this important phenomenological content that appears to comprise features of depression of primary concern to youth.

Applying the FORCE to Improve Understanding of Youth Depression

The conceptualization and measurement of depression has evolved over time, and contemporary notions of depression as a construct can be understood in the context of the theoretical, social, and political histories from which these notions emerged. Across all current measures of depression, there tends to be a central constellation of specific symptoms and features (e.g., hopelessness, sadness, apathy) that most likely captures core features of the depression construct and explains the moderate intercorrelations among measures. Also, the most used depression measures exhibit considerable heterogeneity in content coverage. Last, the most used measures do not capture important features of depression (e.g., mental pain) that figure prominently in individuals’ phenomenological experience. In our view, the construct of depression should not be defined merely, exclusively, and isomorphically in terms of the scales we use to measure it. Our proposed positions to improve the science of youth depression are organized in terms of the FORCE.

Fundamentals

Meaningful, replicable, and interpretable science, especially in applied areas like youth depression, requires reliable and valid measurement with clinical utility. Before investing further in advanced technologies and biological strategies to provide novel insights into the causes and correlates of youth depression—technologies and strategies that to date have yielded largely unreliable and inconsistent findings (e.g., Joober, 2022 ; Kapur et al., 2012 )—we encourage clinical researchers to consider the assumptions upon which measures and models are built and to re-engage with the fundamental (if often frustrating) challenge of articulating the parameters of the problems we are trying to understand. What are the core features of youth depression? What are the experiences youth describe? What does youth depression look like to parents and caregivers? How can these features inform our efforts to develop measures that facilitate enhanced understanding, as well as early detection and intervention? Meaningful progress can be made by producing and disseminating measures that are optimally valid, reliable, and culturally responsive for the needs of contemporary and future young people and those in their communities .

Revisiting these fundamentals will necessarily require openness. We must be open, for example, to embrace research paradigms that have not been mainstream approaches in clinical psychological science, such as qualitative methods aimed at enriching descriptive understanding of youth depression as observed and experienced by various stakeholders. We agree with Sir Michael Rutter who commented, “I think on the one hand you have to have quantitative analysis, but on the other hand qualitative research has a role to play as well, although I think it would be a mistake to say that simply counting quantities is an answer in itself. Understanding is definitely helped by qualitative studies” (Rutter & Werker, 2021 ). Indeed, as our history highlights, rich descriptive and exploratory work is fundamental to inform testable hypotheses and generate new knowledge that can advance the field.

We also encourage openness to novel conceptualizations of psychopathology that extend beyond current DSM-based nosologies. The Hierarchical Taxonomy of Psychopathology (HiTOP) Consortium (e.g., Kotov et al., 2021 ), for example, provides a promising framework that illustrates how the field can employ stages 1 and 2 of the construct validation process to better understand and organize surface-level signs and symptoms of youth depression, and reimagine the ways in which we conceptualize and structure psychopathology. HiTOP’s approach is focused on descriptive psychopathology and empirical analyses of surface-level phenomenological signs and symptoms. The HiTOP framework is consistent with many proposals in this position paper. HiTOP has begun to develop and test empirical measures using modern construct validation techniques, albeit largely with adults to date (e.g., Clark et al., 2023 ; Simms et al., 2022 ; Watson et al., 2022 ). Last, and importantly, HiTOP contains a committee and structure that formally, openly, and transparently considers and evaluates revisions to the organization and structural model based on ongoing research and evidence (Forbes et al., 2023 ; Kotov et al., 2022 ; Ringwald et al., 2021 ). HiTOP also includes a committee focused on developmental applications and considerations, and work in this developmental HiTOP committee is in progress (e.g., Nelson, et al., 2023 ).

Openness also extends to how we conduct our science. Values of transparency and principled, intentional decision-making are needed to guide construct validation efforts. Moreover, by engaging with science as an iterative, ultimately communal process by which knowledge is shared and collectivized, it is our hope that scholars motivated by open science practices might accelerate progress toward a more valid and reliable science of youth depression.

Relationships

Concretely illustrating such a communal process, the World Health Organizations’ (WHO) international process for depression instrument development provides an excellent example showing how interdisciplinary collaborations and conversations among different working groups can advance fundamental conceptual understanding of what constitutes the depression construct and how best to operationalize such information into measurement (e.g., Fulford & Sartorius, 2009 ; Sartorius et al., 1974 , 1980 ). In the 1970s, the WHO began work to create a standardized assessment that could be used around many countries to estimate adult depression prevalence worldwide. Doing so was an enormous, challenging task, especially because different countries had very different ways of defining and measuring adult depression, as there existed no uniform worldwide psychiatric classification system. As a result, the WHO realized that a necessary first step toward providing these essential epidemiological data was to develop an assessment tool that investigators around the world could agree on and then be used to reliably cover the main depression features across countries and cultures when implemented in the field worldwide. The WHO formalized regular international meetings with expert mental health workers from around the world who provided phenomenological summaries of depressed patients, and reviewed audio and video tapes of clients. These relatively inclusive, regular meetings enabled world-leading clinical scholars to generate the symptoms lists that were eventually included in the WHO’s depression checklist interview measure that was then used in the first international epidemiological study of depression. Also critical in the WHO’s process for creating their Schedule for Standardized Assessment of Depressive Disorders was their inclusion of a companion glossary that defined each symptom and provided clear criteria by which depression features could be rated reliably (Sartorius et al., 1983 ). This rich historical example of the construct validation process illustrates how conceptual content was developed for step 1 by cultivating relationships among experts around the world; it also demonstrates how these world experts invited many viewpoints and considered data to cull down items in step 2 of measure development. We propose that this process can be further enriched by the inclusion and formalization of relationships with non-psychiatric experts, such as youth, families, caregivers, and community partners and providers (broadly defined).

The cultivation and maintenance of collaborative intra- and inter-professional and personal relationships is vital to realizing the goals emphasized in this position paper. To improve content understanding of youth depression, for example, we must meaningfully and reciprocally engage with individuals who have experienced depression (either directly, in the case of youth, or indirectly, in the case of caregivers and providers), and reflect with humility in recognizing the bounds of our own expertise and construct-level understanding. A deeper conceptual understanding of youth depression can be enhanced through conversation and coordination with developmental scientists and others from interdisciplinary, allied fields.

We must also maintain critical and reflective relationships with ourselves and our histories (Rodriguez-Seijas et al., 2023 ). Psychological science and construct conceptualization do not emerge in an intellectual vacuum. They often reflect common sense folk accounts and ideas (Mandler & Kessen, 1959 ), which are then informed by specific theoretical paradigms, philosophical principles, and sociohistorical circumstances. Pausing for such reflection sets the stage to enable clinical scholars to interrogate assumptions undergirding work and examine the role our own preconceptions, paradigms, and positionality play in informing questions asked, methods employed, and interpretations made (Rodriguez-Seijas et al., 2023 ).

At the risk of belaboring the point, the production and dissemination of meaningful and impactful science depend on reliable and valid measures to assess conceptually based constructs. Understanding, detection, prevention, and intervention with respect to youth depression may be improved to the extent that the construct validation process is re-energized, and measurement efforts are reinvigorated. We believe that these goals are aligned with proposals and current efforts to use more ecologically valid digital phenotyping (e.g., sensors, smartphones, experience sampling methods) that enable youth and informants to monitor and rate their experience over time, contexts, and across units of analysis (e.g., Hitchcock et al., 2022 ). Deep phenotyping can provide enhanced information on sleep, various affects and emotions, reports of mental and physical pain, movement, exercise and activity, concentration and distraction, as well as social connection to ascertain what youth are doing (e.g., social media, games, substance use, etc.) and with whom (e.g., peers, family). Such efforts may have dual benefits for the future of the field. Deep phenotyping can both inform construct conceptualization, as well as facilitate the identification of ecologically valid, malleable targets and mechanisms to intervene on youth distress.

Progress in the conceptualization and measurement of youth depression must be based on strong evidence. Moreover, it is important that epistemic iteration drives knowledge generation so that the field’s evidence base dynamically evolves with the production of more developmentally and culturally informed measures. It will be important to engage diverse populations of youth, as well as their caregivers, teachers, and providers at each stage of the construct validation process. All involved should remain reflective and transparent about to whom and the extent to which evidence may generalize.

What Do We Know About Interventions for Youth Depression?

Efforts to improve the conceptualization and measurement of youth depression must occur alongside work to improve its detection, prevention, and treatment. Youth struggle with and from depression, and there continues to be need for better, more accessible interventions. Footnote 3 Thus, we shift attention to review what is known regarding evidence-based interventions for youth depression (see Table 2 ) before describing how the FORCE may be applied to propel the field forward.

In a meta-analysis summarizing treatment effects for youth interventions over the past 50 years, Weisz and colleagues (2017) reported an overall mean effect size (ES) = 0.46 compared to control condition for all youth mental health problems, indicating that treatments yield moderate improvements, on average, in youth mental health. Notably, however, treatments for youth depression, specifically, were found to be generally less effective in yielding symptom improvement (ES = 0.29) relative to interventions for anxiety (ES = 0.61) and other conditions. Moreover, after synthesizing the literature, Weisz and colleagues (2017) concluded that therapy effects have not improved over the past 50 years. Further, estimates indicate that fewer than 50% of depressed adolescents in the United States receive care for their symptoms (Avenevoli et al., 2015 ; Forman-Hoffman et al., 2016 ; Lu, 2019 ), and racial and ethnically minoritized youth encounter disproportionate barriers to mental health care relative to their non-Hispanic white peers (Alegría et al., 2008 ; Lu, 2019 ; Yeh et al., 2003 ). Globally, the WHO ( 2017 ) finds that mental health needs far exceed the availability of mental health workers around the world, with individuals in lower-resourced settings facing particular difficulty accessing adequate care.

Taken together, results of this work paint a sobering picture regarding the field’s present capacity to adequately respond to the challenges of youth depression: Treatments are (at least on average) only modestly effective in reducing symptoms and are only reaching a limited number of youth. Further complicating this picture, there are currently not enough well-trained mental health providers of evidence-based psychotherapy to meet the massive current or anticipated future needs. It is unlikely that the needs of distressed youth can be completely met even with an expanded base of well-trained mental health providers.

Psychopharmacological interventions are also commonly used to treat youth depression, and antidepressant medications have been approved by the FDA for the treatment of depression among adolescents ages 12 and older. The American Association of Child and Adolescent Psychiatry recommends the use of selective serotonin reuptake inhibitors (SSRIs), preferably fluoxetine, as a first-line treatment for depression (Walter et al., 2022 ). It is notable, however, that use of antidepressant medications can be associated with side effects and other risks. For example, the FDA issued a “black box” warning in 2004 cautioning that use of SSRIs among youth may increase the risk of suicidality.

Intervention efforts need not wait until youth experience the onset of a depressive disorder. Preventative interventions aim to reduce the likelihood that youth experience depression in the future and represent one means to proactively reduce youths’ prospective risk for depression-related suffering (Heckman, 2011 ; Lee et al., 2017 ; Mihalopoulos & Chatterton, 2015 ). Systematic and quantitative reviews reveal modest to small effects (pooled SMD = 0.16 [0.07–0.26]; Ormel et al., 2020 ) for psychological or educational interventions for preventing depression across multiple settings (e.g., schools, health care, community) and populations. Generally, effectiveness is higher for preventive interventions targeting youth at risk (selective) or with elevated subsyndromal depression (indicated). Estimates indicate that selective and indicated prevention reduce depression incidence by 20–25% (Ormel et al., 2020 ).

Universal prevention efforts exhibit much smaller effect sizes. Several school-based cognitive behavioral or interpersonal preventions show no meaningful effect on depression risk, on average (Caldwell et al., 2019 ; Cuijpers et al., 2021b ), indicating that some universal prevention efforts are ineffective for reducing risk among unselected youth. A recent large-scale universal prevention trial comparing mindfulness-based training to teaching as usual (TAU) with social–emotional learning among students ( n  = 8376) distributed across numerous British schools (84 schools) showed no average prevention effects on primary depression and wellbeing outcomes, and iatrogenic effects were observed in some schools such that TAU did better than mindfulness (Kuyken et al., 2022 ).

This summary illustrates both good and bad news regarding the state of intervention knowledge for youth depression. Encouragingly, some treatments such as cognitive behavioral therapy (CBT) and interpersonal psychotherapy (IPT) demonstrate efficacy as assessed via RCTs, and these have been designated “well-established” treatments for youth depression (see Weersing et al., 2017 ). The bad news is that the field has not progressed in terms of improving effectiveness, dissemination, or implementation of existing preventative and/or treatment interventions to address increasing mental health needs, especially rising prevalence depression rates among youth. One way to shrink depression prevalence is for clinical researchers to reduce the “quality gap” (Jorm et al., 2017 ). This will require providing preventative interventions and treatments that meet minimal standards of clinical practice guidelines and reducing barriers to evidence-based care for youth with highest needs and risk.

Additional gaps and particular limitations in the treatment outcome and prevention literatures also merit attention. Most RCTs, for example, have included predominantly non-Hispanic white youth, and culturally responsive interventions for racial and ethnically minoritized are relatively underfunded and understudied (Pina et al., 2019 ; Polo et al., 2019 ; Walter et al., 2022 ). Further, salient moderators and mediators of treatment response are poorly understood, even among “gold-standard” treatments (Walter et al., 2022 ). Without this knowledge, clinicians are limited in their abilities to select and individualize treatments to most efficiently and effectively meet individual patients’ specific needs. Additionally, many new treatments have been developed and refined over several decades, yet treatment efficacy has not followed suit and has not substantially improved (Holmes et al., 2018 ). Further, with respect to preventative interventions, most prevention trials have relatively short-term follow-ups (less than 1 year), and generally longer-term trials exhibit effect sizes that diminish over time (Caldwell et al., 2019 ; Cuijpers et al., 2021a , 2021b ; Gee et al., 2020 ; Merry et al., 2004 ). So, it remains relatively unclear how long prevention effects last. Overall, despite the field’s best efforts, interventions do not sufficiently map onto the needs of youth experiencing depression. Work remains to further improve interventions to reduce youth depression.

Fortunately, several developments leave us hopeful that significant progress may be made in the coming years. It is increasingly recognized, for instance, that interventions for youth internalizing problems are needed. For example, the Wellcome Trust launched a new priority mental health strategy emphasizing adolescent and young adult (14–24 years) depression and anxiety. Moreover, the United States Office of the Surgeon General ( 2021 ) Advisory on Protecting Youth Mental Health proposes and describes a multipronged, ecologically informed series of recommendations to circumvent youth risk for psychopathology and promote youth wellbeing aimed at both health care specialists (e.g., primary care providers) as well as naturalistic settings and supports (e.g., schools, community organizations, digital media, etc.). As we describe below, this kind of ecological approach is needed in the field of youth depression, as systems- and structure-level change will be essential to augment present evidence-based interventions to address the current prevalence–intervention gap.

There and Back Again: Historical Shifts Between Individual and Relational-Community Mental Health Approaches

We briefly summarize relevant policy and mental health events over the century that illustrate how psychiatry, psychology, and allied disciplines repeatedly (re-)learn the lesson and importance of keeping care within local communities and focusing on relationships. This short history reveals why it can be useful and worthwhile to revisit our field’s history to see what has worked, what has not, and how we can learn from this history and apply these lessons going forward.

Broadly reflecting the back-and-forth shifts emphasizing individually focused care to more relationally based interventions, consider large-scale mental health intervention experiences from military psychiatry. Throughout World War I experts believed the best approach was to move “shell-shocked” soldiers to far-away special hospitals for treatment, yet the affected suffering soldiers did not do well, their recovery was delayed, and some got worse. In contrast during World War 2, military psychiatry adopted more relational help and found that “shell-shocked” soldiers could be rehabilitated and “turned around” more quickly when treated near their platoon or local army communities to which they would then return. These military experiences providing mental health treatment for affected soldiers over decades show that a more locally focused, relational, community-based approach works (Glass, 1971 ).

Robert Felix, NIMH’s first director, was a proponent of this approach. In the Foreword to Caplan’s, 1964 Principles of Preventive Psychiatry emphasizing “community mental health,” Felix wrote, “This book… is a bible. It should be read by every psychiatric resident and mental health worker in training. Footnote 4 ” In 1963, President Kennedy signed the Mental Retardation Facilities and Community Mental Health Centers Construction Act. The idea was that the federal government would release money via block grants to states, which were supposed to build new community mental health centers to replace crumbling, aging, ineffective state mental institutions. However, state governments did not follow through as Congress intended. States did not invest their own funds and instead used federal block grants as a chance to downsize and economize. As a result, there was never sufficient resources and means for mental health system reform as recommended via integration with community mental health.

When major recession and stagflation hit in the 1970s, many adults with severe mental illness had been released from state inpatient hospitals, and numerous released patients faced barriers with the continuation of their psychotropic medication and other supportive therapies. Subsequently, many of these former patients became homeless due to lack of support systems from the community; several were subsequently incarcerated. Indeed, carceral systems, rather than supportive psychotherapeutic care settings, served as a common destination for individuals whose mental health needs remained unmet. Prisons became (and continue to serve) as America’s largest mental hospital system, especially for minoritized individuals and people of color. Today, Illinois Cook County jail, LA County Jail, and NY Rikers Island are the three largest mental health care providers in the United States.

We believe the youth depression field can learn from public health approaches that target modifiable social risk factors and social determinants of health. For example, consider public health efforts aimed at reductions for smoking, cardiovascular disease, and cancer mortality. These public health preventions have included multipronged, intensive programs aimed at both individual and structural targets (e.g., individual, school, curriculum, community) with enduring success (Office of the Surgeon General, 2020 ). Our review of depression facts and findings (Table 1 ) suggests many modifiable risk factors that can be targeted, ranging from the individual level (e.g., cognitive vulnerabilities, poor coping) to environmental and contextual stressors (e.g., peer victimization, childhood maltreatment) to political and structural violence and inequality (e.g., exposure to racism, poverty, armed conflict). Moreover, there exist transactions among individual (e.g., negative emotionality, cognitive vulnerabilities) and contextual risks (e.g., family conflict), such that these risks can mutually reinforce one another over time. As such, interventions can be enhanced by attending to opportunities to intervene at multiple ecological levels by cultivating and leveraging contextual supports to bolster the potential of well-validated individual-level preventions and treatments to allow children, families, and communities to thrive.

“A Matter of Political Will”

Before describing the way in which the FORCE may provide a helpful framework for guiding future work to alleviate youth depression, we echo that reducing mental health problems, including youth depression, is “all a matter of political will” (Jorm, 2014 , p. 800). Mental health workers and clinical scholars across disciplines will need to coordinate, collaborate, and convince politicians and policy makers of the evident truth that investing in proven depression interventions reduces suffering and shrinks disease burden. All too-frequently, the already too-limited funds for mental health services are among the first to be cut during economic challenges of recession or budget problems. Personalized prevention efforts represent one path forward; however, depression interventions will also need to expand beyond only the individual-level focus to effectively target social determinants of health and engage larger-scale, structural system levels. We suggest that additional improvement toward reducing depression can be made by both improving individual interventions and making structural changes.

Applying the FORCE to Improve the Prevention and Treatment of Youth Depression

In order for youth to benefit from depression prevention and treatment efforts, they must first and foremost have access to evidence-based care. Common barriers to care include structural factors (e.g., lack of financial resources or transportation, geographic restrictions, long waitlists, and limited providers), as well as social (e.g., mental health stigmatization) and intrapersonal factors (e.g., lack of confidence in treatment, low perceived need) (Andrade et al., 2014 ; Mojtabai et al., 2011 ). Structural racism and other forms of identity-based oppression as well as lack of provider cultural competence impose additional barriers for individuals with minoritized identities, including LGBTQIA + and transgender individuals, and folks of minoritized racial and ethnic identities (Castro-Ramirez et al., 2021 ; Romanelli & Hudson, 2017 ; Shipherd et al., 2010 ). Thus, addressing barriers to care is fundamental to improving outcomes for children and adolescents.

We are encouraged by several developments that seek to address barriers to care across ecological levels. At the policy level, the Mental Health Parity and Addiction Equity Act of 2008, which was expanded under the Affordable Care Act of 2010, mandated that most health insurance providers guarantee reasonable coverage for mental health care services (Block et al., 2020 ). Project AWARE (Advancing Wellness and Resilience in Education) is a federally funded program that supports the development of school-based prevention, screening, and early intervention services, incentivizing stakeholders to integrate evidence-based services in youths’ naturalistic settings. Moreover, state-level initiatives have been implemented to provide youth with accessible, free services, such as the “I Matter” program in Colorado which provides up to 6 sessions of free psychotherapy for youth 18 and under. Mental Health First Aid, a standardized educational program aimed at increasing mental health literacy and reducing mental health stigma, has been successfully implemented in more than 20 countries worldwide. Meta-analysis shows effectiveness for producing changes in mental health knowledge (ES = 0.56), attitudes (ES = 0.28), and behaviors (ES = 0.25) (Hadlaczky et al., 2014 ).

The growing ubiquity of digital technology also presents exciting opportunities to address barriers to care and increase access to evidence-based treatment. Telehealth technology, such as the use of videoconferencing software to deliver psychotherapy services, may allow providers to reach youth in rural or otherwise hard to reach locations and those youth who face transportation or other physical barriers to care (Myers & Comer, 2016; Nelson et al., 2003 , 2006 ). Text-messaging based interventions have also shown promise to promote treatment engagement and proactively address barriers to care among youth (Ridings et al., 2019 ; Suffoletto et al., 2021 ). Single-session inventions (SSIs) can be delivered asynchronously and in an anonymized manner. They represent another way to provide immediate service access for at-risk youth; SSIs are feasible and effective for reducing depression symptoms among diverse samples of adolescents (Schleider & Weisz, 2017 ). SSI proponents and researchers take care to note that these interventions are meant to motivate and supplement, not replace, comprehensive evidence-based therapies (Dobias et al., 2022 ; Schleider et al., 2022 ).

Addressing the unmet mental health needs of contemporary and future youth will require creativity, flexible thinking, and openness to new approaches and modalities. Doing more and better to address the needs for youth depression will also require openness (and additional training to enhance psychological scientists’ skills) to collaborate and consult with various stakeholders, community members, educational staff, allied health care professionals, and policy makers.

Ecological frameworks for dissemination and implementation emphasize that successful collaboration involves building on existing community strengths, knowledge, and resources to design and refine prevention and treatment strategies that are effective, sustainable, and culturally responsive (Atkins et al., 2015 , 2017 ; Mehta et al., 2019 ). Schools (e.g., Hoover & Bostic, 2021 ) and community mental health centers (e.g., Starin et al., 2014 ) are two clear examples of naturalistic settings in which psychologists can consult and collaborate with multidisciplinary teams to implement evidence-informed interventions for youth. Further, research indicates that digitally facilitated interventions are also enhanced when they feature human support (e.g., coaching) relative to a computer alone (Bennett et al., 2019 ; Ebert et al., 2016 ; Whittaker et al., 2017 ).

Relationships with natural helpers (i.e., non-professionals to whom community members appeal for both social and instrumental support; Israel, 1985 ) may also enhance efforts to respond to the challenge of youth depression, particularly among historically underserved and/or minoritized community members. Trained natural helpers (or “paraprofessionals”) can increase access via increased help-seeking and reduce barriers to care by offering community-based services from community insiders. Such trained natural helpers may be best equipped to respond to the particular cultural values and needs of the children and families they serve. This can be particularly important and valuable in low-resourced and/or historically minoritized settings, in which access to culturally responsive care may be limited and negative experiences within the health care system may be more likely (Jain, 2010 ). Psychologists can partner with community agencies and natural helpers to increase effectiveness of care for historically underserved children and families. These partnerships can improve child outcomes (Garcia et al., 2022 ). For example, psychologists actively collaborated with community agencies to gain insight into community values, norms, and concerns, and used trained natural helpers to provide in-home support to families of young children (age 2–8) enrolled in a course of clinic-based parent–child interaction therapy.

As innovative ways expand the scope and reach of clinical interventions, it will be important to integrate knowledge from ongoing construct validation work. With enhanced and updated understanding of the construct of depression, prevention and treatment strategies need to follow suit. For example, should conceptual and psychometric work show that mental pain is an important feature to include in measures of depression, then new and potentially promising avenues of intervention (e.g., treatments targeting pain alleviation and management for youth across settings and contexts) can be developed and examined. Of course, any enhanced conceptual clarity that may inform expansion or refinement depression interventions will require proper and rigorous evaluation with evidence.

Across ecological levels, prevention and treatment efforts should be informed by empirical evidence and not merely assumed to work. Additionally, applying extant research needs to consider the generalizability of findings and available evidence to samples and the larger population beyond the specific samples (see Simons et al., 2017 for excellent discussion on these “constraints on generalizability”). Interventions involve substantial resources (e.g., time, personnel, money), so knowing from evidence that particular interventions are not superior to control conditions (e.g., school-based cognitive behavioral universal preventions) is important for prioritizing valuable resources and directing policy recommendations toward efforts that do work. More concerningly, even well-intended and conceptualized efforts may be associated with iatrogenic effects. In their large study evaluating universal mindfulness interventions versus TAU in schools, for example, Kuyken et al. ( 2022 ) found iatrogenic effects due to mindfulness training in some schools. These surprising results reinforce the importance of evidence gathering and careful evaluation. In sum, evidence-based care remains essential to promoting wellbeing among youth and their families and prioritizing intervention efforts to those with the highest potential for success.

Next, we illustrate two examples of how principles of the FORCE can be used to advance efforts to reduce youth depression across ecological and structural levels.

Case Example 1: Alleviating Poverty to Alleviate Depression

Poverty, income, and food insecurity represent one key grouping of social determinants of health (cf., Lund et al., 2018 ) with clear implications for youth depression. Highlighting the promise of targeting the economic domain, a compelling recent review states that “we now know that loss of income causes mental illness” (Ridley et al., 2020 , p. 1). Ridley and colleagues’ summary also provides evidence supporting bidirectional causal relationships between poverty and mental illness, including depression.

Quasi-experimental evidence demonstrates the impressive benefits of providing families enhanced economic resources. As part of Covid-19 pandemic relief in July 2021, the US Government expanded temporarily a Child Tax Credit (CTC) so that additional economic funds (up to $3600 maximum per child from the previous CTC of $2000) were provided nearly universally (with few administrative burdens) to families via direct automatic monthly payments to family bank accounts. This expanded CTC was made available to a much wider pool of families relative to previous efforts. The July 2021 expansion made these direct economic benefits available to low-income and unemployed caregivers, who were previously ineligible for this economic support.

The net result of the expanded CTC was that child poverty was cut nearly in half, and food insecurity and insufficiency were reduced (Batra et al., 2023 ). These dramatic results were observed in only two years of increasing financial support to children and families. Comparable findings from another federal program to reduce poverty for low-income families, based on work with Earned Income Tax Credit (EITC), similarly showed outcomes including improved housing, higher family income, and better access to health care. These anti-poverty effects improved mental health especially for Black families (Batra & Hamad, 2021 ).

Results from a large serial cross-sectional study employing a quasi-experimental design showed that the July 2021 expanded CTC was linked with lower depression and anxiety symptoms among lower-income adults with children (Batra et al., 2023 ). More specifically, analyses compared internalizing symptom levels as measured from a baseline (prior to the initiation of the expanded CTC) to after infusion of these additional economic resources. Results showed that low-income caregivers with children reported approximately 13% reduction in clinically significant anxiety symptoms and 6% drop in clinically significant depression.

Additional findings from this expanded CTC study highlight policy implications. With increased financial resources from the expanded CTC, no change was found for average mental health care visits or psychiatric prescriptions. These results suggest that anxiety and depression symptoms can improve without families requiring use of additional mental health services. In other words, changing the circumstances of living can exert meaningful effects for individuals’ psychological symptoms even in the absence of direct psychotherapeutic intervention. Poverty is associated with greater exposure to trauma and violence, increased environmental stressors, worse physical health, and exposure to interpersonal discrimination and structural inequality. Improving safety, economic stability, and physical wellbeing within the family may be reasonably assumed to have downstream effects of lowering depression and co-occurring psychopathologies within families.

In summary, given strong evidence that broader systemic factors and social determinants are linked and appear to causally affect depression and other forms of youth psychopathology, multiple approaches are needed to reduce distress and relieve depression’s burden in addition to improving access to psychological interventions. Social determinants of mental health (e.g., poverty, health care access, food insecurity) are fundamental aspects of youths’ experience that can be addressed by building relationships with community advocates and policymakers to enact higher level economic policy. The recent CTC expansion provides important evidence demonstrating the salutary effects of direct economic interventions for family mental health.

Case Example 2: Personalizing Depression Preventions

Evidence-based reviews demonstrate that indicated and selective preventions are effective for decreasing incidence and risk for anxiety and depression among youth (Breedvelt et al., 2018 ; Caldwell et al., 2019 ; Moreno-Peral et al., 2017 ). While findings are mixed with strength of effectiveness for universal prevention depending on settings, contexts, delivery, and intervention modality, universal interventions can be combined and blended with targeted approaches for anxiety and depression. Parenting programs represent an excellent example of this approach and are among the most efficacious and cost-effective interventions to reduce the prevalence of youth mental health (Prinz & Shapiro, 2018 ). Parenting programs are acceptable to many caregivers, effective across diverse contexts, and can be applied with population-based approaches to achieve high dissemination. Economic analysis shows that parenting programs provide successful impact for family and offspring mental health that result in more savings economically from social service spending relative to the cost of implementing these universal, population-based programs (Washington State Institute for Public Policy, 2019 ).

Systems-contextual approaches, such as the parenting program Triple P, use a tiered approach to flexibly provide contextually sensitive, ecologically engaged, and developmentally appropriate parenting support in a manner that is feasible, scalable, and effective (Sanders & Mazzucchelli, 2022 ). One key explanation for the effectiveness of this program involves the flexible selection of appropriate evidence-based programs emerging from the central, unified theoretical framework to respond to the specific needs and priorities of particular target populations within a broader population-based service model (Sanders & Mazzucchelli, 2022 ). While universal, population-based programs such as Triple P achieve this component via flexible delivery and implementation of teaching particular parenting skills based on varying parenting needs and primary concerns, other options can include personalizing prevention in a manner that matches intervention selection to youth’s particular risks and needs.

Rather than providing a one-size-fits all approach via prevention delivery to all youth regardless of risks or strengths, more precise personalization can occur when evidence-based risk profiles identify individuals or subgroups for whom particular interventions may prove more efficacious. As our risk factor review in Table 1 illustrates, numerous risks could be examined and tested to inform such a risk profile with translation to impact prevention. Here, we provide one example (Hankin, 2020 ). A cognitive and interpersonal risk profile was developed based on foundational research over years of solid, replicable vulnerability research. This algorithm was then tested and evaluated in independent samples and shown to predict future occurrence of MDD (Hankin et al., 2018 ). This risk profile was used in a randomized trial, the Personalized Depression Project (PDP; Young et al., 2021 ), to evaluate the degree to which risk-informed personalized prevention can improve future depression reduction. Youth categorized as exhibiting high or low cognitive and interpersonal risks were randomized to receive an intervention that either matched their risk and best met their needs (e.g., high cognitive risk and low interpersonal risk received a cognitive behavioral program; high interpersonal risk and low cognitive risk received an interpersonal-based program) or mismatched (e.g., high cognitive risk and low interpersonal risk received the interpersonal-based program). Results showed that matched adolescents reported significantly fewer depression symptoms relative to mismatched youth over the 21-month study period, although no significant difference was observed for MDD onset (12% for matched vs 18.3% for mismatched). Additional outcome data for anxiety symptoms revealed that matched youth reported significant decrease in anxiety symptoms compared to mismatched adolescents from postintervention through 18-month follow-up (Jones et al., 2022 ). Last, matched youth experienced significantly fewer dependent stressors compared to non-matched adolescents over follow-up (Jones et al., 2023 ).

In summary, findings from PDP illustrate that openness to new modes of prevention that implement evidence-based approach to personalizing prevention efforts as informed by knowledge of the construct of depression to create health and risk profiles can work to enhance outcomes among youth. Future research is still needed to replicate these PDP findings and extend investigation to evaluate the extent to which the specific cognitive–interpersonal risk classification profile and its categorical cutoffs generalize to other adolescents in other settings and contexts for maximal clinical utility.

Clinical psychological scientific study of youth depression began in earnest in the late 1970s and has seen rapid expansion of inquiry and knowledge accumulation from the mid-1990s to the present. The field has produced impressive facts and findings regarding depression’s prevalence, course, patterning, risk and resilience factors, and interventions. As with all forms of scientific investigation, the validity and utility of this corpus of information on youth depression rests on foundational principles and frameworks that affect, and are affected by, how the construct of depression has been conceptually defined and assessed.

We provided a review of particular sociohistorical events and philosophical principles that help to contextualize how scholars and applied mental health workers have conceptualized and measured youth depression over theses decades. Given particular implicit assumptions affecting how key features of depression have been defined, which signs and symptoms have been predominantly included (as well as excluded), we advocated for a renewal in the refinement, revision, and reconceptualization of the depression construct among children and adolescents especially incorporating a developmentally informed perspective. We discussed modern principles of the construct validation process, including the first two steps of content definition and then measurement development. We encouraged depression experts and important stakeholders to engage in the back-and-forth iterative process involving these two construct validation steps to create living, ongoing measures of the youth depression construct that would be freely available for use and ongoing refinement. Research can then evaluate proposed newer measure(s) via the third step of construct validation in which associations between revitalized measurement instrument(s) and other external constructs (e.g., risk factors, intervention) are evaluated. Because these construct validation steps were not used in the development and testing of most currently and commonly used youth depression measures, our proposal to revisit and reconceptualize the depression construct in a developmentally sensitive manner holds promise for the field of youth depression to improve all aspects of basic scientific and applied knowledge.

At the same time, the considerable number of children and adolescents around the world experiencing elevated depression demands enhanced efforts to reduce the tremendously high distress and burden among youth. The current literature shows that the present suite of evidence-based depression interventions for children and adolescents demonstrate some efficacy and effectiveness in treating and preventing depression. However, these largely individually focused pharmacological and psychological interventions are not enough to meet the massive needs to seriously decrease the gulf between depression’s high prevalence and available implementations provided via trained mental health experts. We proposed more serious attention and focus to broaden interventions beyond the predominant individual level and expand efforts structurally across socio-ecological systems and levels. Such expanded approaches could include more universal efforts with supportive evidence, such as promoting positive parenting (e.g., Triple P), enhancing available resources (e.g., educational, health care), and financial supports to lift children and families out of poverty via government and legislative initiatives. Additionally, expanded universal preventions can be combined with more targeted, selective approaches that personalize depression interventions using risk-informed profiles to guide matching to evidence-based programs.

In closing, the field of youth depression has come a long way, amassed many impressive findings, and found ways to reduce depression symptoms and disorder. At the same time, rates of depression, distress, and burden continue to rise for children and adolescents, and this prevalence–intervention gap is widening. We believe there is a New Hope for the future of youth depression research that can rise to meet these challenges and offer avenues to reduce distress and burden around the world. With a clearer understanding of fundamentals (clear thinking informed by history and philosophy), openness to explore new ideas transparently using the scientific method, relationships with youth, families, and stakeholders most intimately acquainted with depression, constructs to guide conceptualization and measurement of youth depression’s signs and symptoms, and evidence collection and evaluation to ensure accurate and believable knowledge (the FORCE), we look forward to future advances that instill realistic hope and are poised to advance progress on youth depression.

Data Availability

There are no data collected or analyzed for this review, so there are no data to share.

In the context of the present paper, “youth” is used to refer to school-aged children and adolescents, specifically, as much of the evidence and empirical emphasis of the literature to date has focused on these periods of development. We wish to note, however, that the ideas and suggestions promulgated in this paper may provide meaningful directions for efforts to improve research and intervention efforts targeting earlier periods of development (e.g., infancy, preschool age). That is, fundamentals, openness, relationships, constructs, and evidence are essential to improving our understanding of and capacity to respond to the needs of vulnerable young people across the lifespan.

We will proceed to discuss several key events and players involved in the development of the model DSM as it relates to youth depression; however, for more information regarding the history of the DSM, we direct interested readers to several excellent reviews in this area (Blashfield, 1984 ; Blashfield et al., 2014 ; Clark, Cuthbert et al., 2017 ; Frances & Widiger, 2012 ; Horwitz; Kendler, 2016 , 2017 ; Wilson, 1993 ).

We use “intervention” to refer to both prevention and treatment efforts.

Contrast Dr. Felix, as the first NIMH director’s “bible” reference, to the most recent outgoing NIMH Director, Dr. Insel, saying DSM is not the “bible” of psychiatric classification.

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Benjamin L. Hankin acknowledges Grant funding support from NHLBI R01HL155744 and NIMH R01MH109662. Julianne M. Griffith acknowledges grant funding support from NSF GRPF 1000259217.

This work is supported by the National Heart, Lung, and Blood Institute (Grant No. 155744) and National Institute of Mental Health (Grant No. 109662) to Benjamin Hankin and National Science Foundation, 1000259217, Julianne Griffith

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Hankin, B.L., Griffith, J.M. What Do We Know About Depression Among Youth and How Can We Make Progress Toward Improved Understanding and Reducing Distress? A New Hope. Clin Child Fam Psychol Rev 26 , 919–942 (2023). https://doi.org/10.1007/s10567-023-00437-4

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Depression is the most frequently detected and preventable mental illness among people with human immunodeficiency syndrome, with rates two to four times higher than in the general population. Currently, depression is estimated to affect 350 million people worldwide. To assess the prevalence of depression and associated factors among HIV/AIDS patients attending antiretroviral therapy clinic at Adama Hospital Medical College, Adama, Central Ethiopia. An institutional-based cross-sectional study was conducted from April 01 to September 30, 2021, at Adama Hospital Medical College, Adama, Ethiopia. A total of 420 individuals were selected using a systematic random sampling technique. After informed consent was obtained from each study participant, data were collected through face-to-face interviews, observations, and document reviews. Subsequently, the data were entered into EPI-Info Version 7 and analyzed by Statistical Package for the Social Sciences version 21. Variables with p-values less than 0.25 in the univariable logistic regression analysis were subsequently included in the multivariable logistic regression analysis to account for potential confounding factors. The association was measured using adjusted odds ratio (AOR) with a 95% confidence interval (CI), and variables with p -values less than 0.05 were considered statistically significant. The prevalence of depression was 52.4% (95% CI 47.6–57.1). Factors significantly associated with depression among HIV-positive patients on antiretroviral therapy included employment status [AOR = 0.22(95% CI 0.13–0.36)], the patient’s most CD4 count [AOR = 6.99 (95% CI 2.81–17.38)], duration of months on antiretroviral therapy [AOR = 5.05 (95% CI 2.38–10.74)] and presence of chronic non-communicable diseases [AOR = 7.90 (95% CI 4.21–14.85)]. The highest proportion of HIV-positive patients taking antiretroviral drugs exhibited depression. Employment was identified as a preventive factor, whereas having a low CD4 count, recently initiating antiretroviral therapy, and having chronic non-communicable diseases were associated with increased odds of depression among HIV-positive patients on antiretroviral therapy. There need to strengthen mental health screening and treat depression among HIV-positive patients, particularly by targeting identified factors.

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Introduction

Depression is one of the psychiatric disorders among people living with human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) and manifests as loss of interest, depressed mood, changes in sleep, change in appetite, poor psychomotor activity, difficulty in making a decision, uncomfortable or immoral feelings, and quickly getting fatigued and constant feelings of death or suicide 1 . According to World Health Organization (WHO), 1 in every 8 individuals worldwide live with mental health disorder in 2022. In the same year, 280 million people were living with depression 2 . Depression is the most common and easily treatable mental disorder in patients with human immunodeficiency syndrome, with rates two to three times higher than in the general population 3 , 4 . Prior studies have reported that people living with HIV/AIDS (PLWHA) are at a significantly higher risk of neuropsychiatric comorbidities, with depression being the most common (20–40%) 5 . Studies conducted in different countries showed that the prevalence of depression among HIV/AIDs patients was 57% in India 6 , 40.9% in China 7 and 32.2% in Pakistan 8 . This is often related to the fact that PLWHA frequently endure social stigma, loss of social support, loneliness, and low self-esteem. Furthermore, a higher chronicity of depression has also been linked to HIV appointment attendance, treatment failure, and mortality among HIV-infected people 5 , 9 .

Studies have found a high rate of depression among HIV-positive patients in Sub-Saharan Africa, which is home to 67% of the world's HIV-positive patients 10 . According to a systematic review and meta-analysis in the East African region, the prevalence of depression among PLWHA was 38% 11 . Similarly, studies have shown the prevalence of depression was 63.1% in Sudan 12 , 46% in Western Uganda 13 , 33% in Somalia 14 , and 26.7% in Cameroon 15 . This high prevalence of depression among HIV/AIDS individuals is associated with reduced treatment adherence, which can increase disease progression and mortality in high, middle and low-income countries 16 , 17 , 18 .

In Ethiopia, the prevalence of depression among people living with HIV/AIDS was 48.6% in Hawassa 19 , 44.9% in Southeast Ethiopia 20 , 45.8% in Harar 21 , 41.7% in Gimbi 22 , 38.9% in Debrebirehan 23 , 35.5% in Addis Ababa 24 , 30.2% in Jimma 25 and 11.7% in Debre Markos 26 .

Mental health problem related to HIV infection is quite recurrent due to stressful events such as the emotional impact of diagnosis, possible family rejection in professional and social life; stigmatization and discrimination associated with the disease and clinical features, chronic course of the disease, and side-effects of certain antiretroviral medications such as Zidovudine and other. Studies have shown that urban dwellers, lower socioeconomic class, unemployed and government employees, female sex, history of hospital admission, discontinued education due to HIV/AIDS illness, poor treatment adherence, opportunistic infections, high baseline viral load, and 6 months duration of HIV diagnosis were factors associated with depression among HIV positive patients. Hence, depression among PLWHA taking antiretiroviral therapy (ART) is still underdiagnosed and under-treated; there is a need to incorporate mental health services as an integral component of HIV care 17 , 21 , 25 , 27 .

Depression has been linked to a variety of negative health outcomes in HIV/AIDS patients, including suicidal attempts, hopelessness, and poor drug adherence leading to rapid HIV progression, which in turn will result in drug resistance and treatment failure. Unless promptly recognized and managed, depression and its negative consequences will result in hospitalization and an increase in the cost of medical care 17 , 27 .

Although there have been studies on the prevalence and associated factors of depression among HIV-positive patients in Ethiopia, none has been done at Adama Hospital Medical College, which has over 7000 HIV-positive patients taking ART drugs. Most importantly, due to variation among the study populations both within and between countries, the prevalence and associated factors of depression may, sometimes, be population specific. Therefore, this study was done to assess the burden of depression among HIV-positive patients in the study area, generate evidence for early recognition, and strengthen the integration of mental health care into ART services.

This study aimed to investigate the prevalence and associated factors of depression among HIV-positive patients attending ART clinic at Adama Hospital Medical College, Adama, Ethiopia.

Methods and materials

Study area and period.

The study was conducted from April 01 to September 30, 2021, at Adama Hospital Medical College in Adama town, Eastern Oromia Region, Ethiopia. Adama is found 100 km away from Addis Ababa in the East path. At different times, Adama Hospital Medical College was identified by the names of Haile Mariam Mamo Memorial Hospital and Adama Referral Public Hospital. It is the only public Medical Hospital situated in Adama town.

The hospital was established in 1946 GC by missionaries from abroad and was among the country’s first non-governmental hospitals. It was handovered by the government during the Dergue regime in 1974. The hospital was upgraded to a Medical College in 2011 G.C and started to play academic and research roles in addition to its normal medical service, development, and administrative activities. This hospital and college currently serve over six million catchment population from five regions (Oromia, Amhara, Afar, Somali, and Dire-Dawa). Regarding the HIV/AIDS services, there are different professional categories assigned like General Practitioners, Heath officers, Nurses, Case managers, Mother support groups, Pharmacy technologists and others who took training on this specific program. There are more than 7000 patients currently taking ART drugs in this hospital, and they are usually served by follow-up on the Appointment Spacing model, three multi-month dispensaries and monthly basis.

Study design and population

An institutional-based cross-sectional study design was employed. The source population was all adult HIV-positive people visiting the Adama Hospital Medical College ART clinic during the study period. The study population was all selected adults aged ≥ 18 years at the time of study and critically ill ART users, and those who could not respond appropriately to the interview were excluded from the study.

Sample size and sampling procedure

The sample size was computed using Epi Info 7 stat calc. Using a population survey formula proportion for a single population, assuming a level of confidence at 95% and margin of error at 5%, and based on a study done at Harari town, revealed a prevalence of 45.8% of depression 9 . A 10% non-response rate was added to obtain a maximum sample size, and the final sample size was 420. Systematic random sampling was used to select participants using the antiretroviral drug registration book as the sampling frame. An interval of k = N/n = 7000/420 = 16 was used to select the study participants. The first study participant was selected using the lottery method and then every 16th client was included. Study participants were invited to participate when attending the hospital for antiretroviral drug collection.

Data collection procedure and tools

Data were collected using an interviewer-administered questionnaire that covered socio-demographic, psychological, and social characteristics, the presence of chronic non-communicable diseases, health and nutrition-related conditions, and Patient Health Questionnaire (PHQ-9). Depression was assessed using PHQ-9 quick depression assessment, which ranges from 0 to 27. The severity of depression was characterized as minimal (0–4), mild (5–9), moderate (10–14), moderately severe 15 , 16 , 17 , 18 , 19 and severe depression (≥ 20) 28 . The questionnaire was adapted from different kinds of literature 17 , 21 , 28 and was pre-tested on 5% of the study population in the non-selected hospital /Bishoftu Hospital/ to ensure clarity, wording, logical sequence, and skip patterns of the questions. The questionnaire was prepared in English and then translated into local language (Afaan Oromo) and Amharic by language experts. To ensure consistency, the Afaan Oromo version was translated back into English. Data was collected using both an Afaan Oromo and Amharic language questionnaire based on the patient’s preferences.

Four BSc nurses were recruited as data collectors, and one master’s degree holder was assigned as the supervisor. The training was given to data collectors and supervisor for one day on data collection methods, how to take informed consent, how to approach participants, ethical procedures, and general information on the depression grade of HIV patients taking ART, and the study’s objective. Face-to-face interview, observation and document review was done to collect the data. Document review were used to fill in information like CD4 count, Viral load, and WHO clinical staging. The collected data underwent daily checks for activity, consistency, and questionnaire completeness to ensure data quality. Incomplete or unfilled questionnaires were not accepted.

Data analysis methods

After data collection, a questionnaire was checked for missed data and errors, and then data was entered into Epi-info version 7 and analyzed using the statistical package for Social Science (SPSS) version 21. The data were cleaned and prepared for analysis. Descriptive statistics such as frequency, mean, and standard deviation describe the study’s variables. A binary logistic regression model was used to ascertain the relationship between the independent variables and the outcome variable. Assumptions for logistic regression were considered, and model fitness was tested by Hosmer and Lemeshow goodness-of-fit test statistic and was born at greater than 0.05. Before including factors, multicollinearity was checked using the cutoff point, variance inflation factor (VIF) < 10. Factors with a p-value less than 0.25 in the univariable logistic regression analysis were further entered into the multivariable analysis to control for potential confounders. Adjusted Odds Ratio with 95% CI was used to measure association, and p-values less than 0.05 were taken as statistically significant. Finally, the results of the findings were presented using text, graphs and tables.

Ethical considerations

The study was approved by Addis Ababa University institutional review board, and a formal letter of permission was obtained from Addis Ababa University, the school of public health with registration number SHP/0023/13. An official letter of cooperation was written from Addis Ababa University to Oromia Regional Health Bureau, which then wrote to the respective health facility. There is no potential risk that may cause any harm to respondents. All the necessary precaution for COVID-19 prevention was kept during data collection. The importance of the study was explained to the study participants, and informed written consent was requested from the subjects included in the survey immediately before the data collection with the subjects full right to refuse the interview at any time if they did not want to proceed. The respondents were informed that they would not lose anything (do not affect their treatment regimen) for not participating in the study. Patients who were diagnosed with depression during data collection were linked to a psychiatry unit for further evaluation and treatment.

Operational definition

Depression :—a person who scores in the PHQ-9 greater or equal to the cutoff point of 5 and has a common mental illness that negatively affects how they feel, the way they think and how they act 28 .

Good adhered to ART drugs :—patients who take ≥ 95% of the prescribed dose were considered adherent to medication as stated in Ethiopian consolidated ART guideline 29 .

Mody Mass Index (MBI) : underweight if the patient had a BMI < 18.5 kg/m 2 , normal weight if the patient had a BMI between 18.5 and 24.9 kg/m 2 and overweight if the patient had a BMI > 25.0 kg/m 2 30 .

Ethical approval and consent to participate

The study received ethical approval from the AAU Ethical Review Committee and written informed consent from each participant. All methods were carried out in accordance with relevant guidelines and regulations.

Socio-demographic characteristics of study participants

Four hundred forty-two HIV-positive patients participated in the study, and the response rate was 100%. The patients’ mean (± standard deviation) age was 42.8(± 10.7) years. More than half, 64.0% (n = 269) of the patients were females. The majority (88.1%) (n = 370) were urban residents. Nearly one-third, 36.4% (n = 153) of the study participants attended primary school. About half, 48.1% (n = 202) of the participants were married. Among the study subjects, 46.9% (n = 197) of PLWHA were unemployed. Nearly half of the participants, 51.9% (n = 218), had an average monthly income of 1001–5000 Ethiopian Birr (Table 1 ).

Psychological and social characteristics of HIV-positive patients

Only (10%) (n = 42) and 2.9% (n = 9) of the study participants consumed alcohol and chew chat, respectively. Almost all 99.5% (n = 418) patients were non-smokers. Twenty-five (6.0%) of the study participants had a past psychiatric history. Nearly one-fifth (19%) (n = 90) of HIV-positive patients have co-morbid psychiatric conditions, while 2.9% (n = 12) were taking antidepressants. Among the study participants, 7.6% (n = 32) replied that they had poor social support. The majority, 86.4% (n = 363), had no impairments in activities of daily living (Table 2 ).

Chronic non-communicable diseases among PLWHA

Among HIV-positive patients, 8.6% (n = 36) had diabetes mellitus. Thirty-three participants (7.9%) had hypertension, and 2.6% (n = 11) had cardiac problems. One in ten, 10.5% (n = 44) of the study participants had a history of Asthma attacks. 27.9% (n = 117) of the survey participants had at least one chronic non-communicable disease (Table 3 ).

Health and nutrition related conditions of HIV-positive patients

Nearly half, 51.7% (n = 217) of the study participants were concordant positive and one-third, 33.3% (n = 140) of the HIV-positive patients don’t know their partner’s HIV status. Regarding viral suppression, 95.5% (n = 401) of the participants had a viral load of < 1000 copies/mm 3 . Nearly two-thirds, 63.8% (n = 268) of the patients presented with CD4 < 200 cells/mm 3 at diagnosis. Regarding the most recent CD4, 37.9% (n = 159) of the study participants had ≥ 500 cells/mm 3 . The majority, 79.5% (n = 334) of the HIV-positive patients, were in the stage 1 WHO clinical stage. Nearly one-third, 36.9% (n = 155)of HIV-positive patients had ever developed an opportunistic infection. The majority, 91.7% (n = 385) and 72.4%(n = 304) of the participants were on first-line treatment and had normal BMI, respectively (Table 4 ).

Depression among HIV Positive patients

Based on the PHQ-9 depression severity assessment scale, 33.3% (n = 140) of the study participants have minimal depression, while 9 (2.1%) have severe depression (Fig.  1 ).

Severity of depression among HIV-positive patients taking ART at Adama Hospital Medical College, 2021.

The prevalence of depression among patients taking ART in Adama Hospital Medical College was 52.4% (95% CI 47.6–57.1) (Fig.  2 ).

Prevalence of depression among HIV-positive patients taking ART at Adama Hospital Medical College, 2021.

Factors associated with depression among HIV-positive patients

The univariable logistic regression analysis revealed that depression among HIV-positive patients had an association with the educational level of the patients, work status, chewing chat, family history of psychiatric illness, patient’s most recent CD4 count, months on ART and presence of chronic non-communicable diseases. Those variables with a p-value of less than 0.25 in the simple logistic regression analysis were entered in multivariable logistic regression analysis. In multivariable logistic regression analysis, work status, patient’s most recent CD4 count, months on ART and chronic non-communicable diseases were significantly associated with depressive symptoms among HIV-positive patients.

The odds of employed patients having depressive symptoms were 78% [AOR = 0.22(95% CI 0.13–0.36)] lesser than unemployed patients. HIV-positive patients who had the most recent CD4 count < 200 cells/mm 3 were seven times [AOR = 6.99 (95%CI 2.81–17.38)] more likely to have depression than patients with CD4 count ≥ 500 cells/mm 3 . Patients who received ART for ≤ 24 months were five times [AOR = 5.05 (2.38–10.74)] more likely to have depression than their counterparts. HIV-positive patients with co-morbid chronic non-communicable disease were eight times [AOR = 7.90 (4.21–14.85)] more likely to have depression than their counterparts (Table 5 ).

This study set out to examine the prevalence and factors associated with depression among patients taking antiretroviral drugs in the study setting. We found that 52.4% of HIV-positive patients taking ART had depression. This finding is comparable with a study conducted in India (57%) 6 , Hawassa (55.8%) 19 , Western Uganda (46%) 13 , and Harar town (45.8%) 21 . This finding is higher than a study done in China (40.9%) 7 , Gimbi (41.7%) 22 , Alert Hospital (41.2%) 31 , Debrebrihan referral hospital (38.9%) 23 , Addis Ababa (35.5%) 24 , Somalia (33%) 14 , Pakistan (32.2%) 8 , Jimma (30.2%) 25 , and Debremarkos town (11.7%) 26 . This might be due to differences in socioeconomic status, study period, sample size, the studied population, and data collection tools. For instance, the study conducted in China 7 used the burn depression checklist, Western Uganda 13 used the Center for Epidemiological Studies’ depression scale, Addis Ababa 24 used the Beck depression inventory-II, and we used PHQ-9.

The employed patients were 78% less likely to have depression than unemployed patients. This finding was supported by a study conducted in Nigeria and Cameroon that revealed unemployment and low income were associated with depression among people living with HIV 15 , 32 . This might be because being employed will reduce the socioeconomic burden that might impose additional stress on HIV-positive patients. This double burden of stress might lead the patients to depressive disorder.

HIV-positive patients with the most recent CD4 count ≤ 200 cells/mm 3 were seven times more likely to have depression than patients with CD4 count ≥ 500 cells/mm 3 . This finding was consistent with a study conducted in a tertiary hospital in South Western Nigeria, Cameroon and by the centers for AIDS research 15 , 32 , 33 . This might be because low CD4 count might be associated with opportunistic infections, which further bring additional worries, stress and physical disabilities.

Patients taking ART for ≤ 24 months were five times more likely to have depression than their counterparts. This finding was in line with a study conducted in rural Uganda and Spanish 34 , 35 . This might be attributed to ongoing counseling and support the patients might receive about HIV diagnosis and treatment, which might reduce mental stress and anxiety leading to depressive symptoms.

HIV-positive patients with at least one co-morbid chronic non-communicable disease (diabetes, hypertension, cardiac diseases and asthma) were eight times more likely to have depression than their counterparts. This finding was supported by a study conducted by Watkins CC and Treisman GJ in Johns Hopkins Hospital, which found neuropsychiatric symptoms, including depression, cognitive impairment, and substance abuse, are common among HIV-infected patients with chronic co-morbid conditions 36 . This might be due to co-morbid chronic non-communicable diseases, which will add tremendous pressure to the existing challenge in the fight against HIV.

Limitations of the study

The study’s cross-sectional design makes it impossible to determine the temporal link between various factors and depression. Because the study was conducted in a hospital, the results may not apply or generalize to the entire population. We performed quantitative research to assess factors associated with depression among HIV patients. If qualitative methods, such as focus groups and in-depth interviews, had been combined with this quantitative study, more information concerning depression among HIV-positive patients would have been identified. Furthermore, hormonal tests like thyroid function tests, serum cortisol, testosterone, estrogen, and progesterone levels, all of which might be associated with depression, were not available in this hospital during the study.

A significant proportion, 52.4% of HIV-positive patients taking ART, had depression. Patient employment status, most recent CD4 count, months on ART, and chronic non-communicable diseases were factors associated with depression among HIV-positive patients. Employed patients were less likely to have depression. However, patients with most CD4 counts of less than 200 cells/mm 3 and those who took ART for ≤ 24 months and had chronic non-communicable diseases were at increased risk of developing depression.

Recommendation

The Ministry of Health and partners working on HIV need to strengthen mental health screening and treat depression among PLWHA with due attention on unemployed patients, low CD4 count, patients newly initiated on ART and with co-morbid chronic non-communicable patients. Further longitudinal research on risk factors of depression should be conducted to strengthen and broaden the current findings.

Data availability

The dataset analyzed during the current study is available from the corresponding author upon reasonable request.

Abbreviations

Acquired immune deficiency syndrome

Antiretroviral therapy

Body Mass Index

Balanced score card

Cluster of differentiation

Human immune virus

Patient health questionnaire

People living with HIV/AIDS

World Health Organization

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Acknowledgements

First, we would like to express our deepest thanks and gratitude to the study participants. Our acknowledgment also goes to data collectors and supervisors.

The authors declare that they have no specific funding for this study.

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Tessema Gebru

Department of Nursing, Shashamene Campus, Madda Walabu University, Shashamene, Ethiopia

Daba Ejara & Aster Yalew

School of Public Health, College Health Science, Addis Ababa University, Addis Ababa, Ethiopia

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Contributions

T.G. conceived and designed the study; collected, analyzed and interpreted the data; N.D., D.E. and A.Y. were involved in designing the study, data analysis and drafting the manuscript. All the authors critically reviewed the manuscript for intellectual content and approved the final draft.

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Correspondence to Daba Ejara .

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Gebru, T., Ejara, D., Yalew, A. et al. Prevalence of depression and associated factors among HIV/AIDS patients attending antiretroviral therapy clinic at Adama Hospital Medical College, Adama, Central Ethiopia. Sci Rep 14 , 1642 (2024). https://doi.org/10.1038/s41598-024-52142-z

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Mental Health Problems among Young People—A Scoping Review of Help-Seeking

Katrin häggström westberg.

1 School of Health and Welfare, Halmstad University, SE-301 18 Halmstad, Sweden; [email protected] (M.N.); [email protected] (J.M.N.); [email protected] (P.S.)

2 Affecta Psychiatric Clinic, Sperlingsgatan 5, SE-302 48 Halmstad, Sweden

Maria Nyholm

Jens m. nygren, petra svedberg, associated data.

Documentation on the database searches, the stepped screening process and the thematic analysis are available from the corresponding author upon reasonable request.

Young people’s mental health is a public health priority, particularly as mental health problems in this group seem to be increasing. Even in countries with supposedly good access to healthcare, few young people seek support for mental health problems. The aim of this study was twofold, firstly to map the published literature on young people’s experiences of seeking help for mental health problems and secondly to validate whether the Lost in Space model was adaptable as a theoretical model of the help-seeking process described in the included articles in this scoping review. A scoping review was conducted in which we searched for literature on mental health help-seeking with a user perspective published between 2010 and 2020 in different databases. From the 2905 studies identified, we selected 12 articles for inclusion. The review showed how young people experience unfamiliarity and insecurity with regard to issues related to mental health and help-seeking. A strong wish for self-reliance and to safe-guard one’s own health were consistent among young people. Support structures were often regarded as inaccessible and unresponsive. There was a high level of conformity between the model on help-seeking and the analysed articles, reinforcing that help-seeking is a dynamic and psychosocial process.

1. Introduction

Young people’s mental health is a major public health issue. Mental health problems among young people contribute to impaired physical and mental health extending into adulthood [ 1 , 2 , 3 ]. Promoting young people’s mental health is an integral component in ensuring their development and improving health and social wellbeing across their lifespan [ 3 ]. In light of the high rate of mental health problems among this group, a corresponding high rate of help-seeking and use of support resources might be assumed; however, few young people actually seek and eventually access professional help. Delays in looking for help can be lengthy and are prevalent even in countries with good access to healthcare [ 4 , 5 , 6 , 7 , 8 , 9 ]. The process of searching for support involves barriers that relate to both individual and social context factors [ 8 , 10 ]. This contributes to the complexity involved in offering interventions to support them and highlights the need to understand the help-seeking process, whether online or in person, for young people with mental health problems.

Help-seeking is usually described as a rational, agency-based process where the individual plans, decides and acts on symptoms [ 11 ]. However, research also describes that help-seeking is not solely an individual act; rather, it is influenced by social factors throughout the process. Societal, organizational support structures set the limits and stipulate the opportunities to seek help [ 12 ]. Help-seeking thus depends both on factors at the individual level and structural resources for young people. Many studies that examine help-seeking for mental health among young people using cross-sectional designs on either the general community, or school populations [ 8 , 13 ] are based on descriptive data that is often generated through surveys, and focus on attitudes, rather than on experiences [ 14 ]. The main focus of previous literature has been on individual factors, such as mental health literacy, and less information can be found on the structural factors involved [ 8 , 13 ]. This calls for a deeper and more nuanced understanding of young people’s mental health help-seeking regarding contextual factors, with particular focus on their experiences and perspectives. An improved understanding of help-seeking for mental health problems can be used to improve practice and service delivery, and ultimately benefit young people’s mental health.

In this study, qualitative research exploring the help-seeking process in Sweden from the perspectives of young people with mental health problems was used as the theoretical point of departure [ 15 ]. Within this previous research, we produced a theoretical model of help-seeking, the Lost in Space model [ 15 ]. It showed how help-seeking was a long, non-sequential and dynamic process. In this research, young people described a process of moving in and out of the three help-seeking phases, Drifting, Navigating and Docking. Drifting was characterized by insecurity and unfamiliarity, with a lack of knowledge of mental health and the support system; Navigating was characterized by structural obstacles, a fragmented support system and wishes for help; while Docking was characterized by experiences of finding help. For the purpose of confirmability and usefulness, it is essential to validate and understand if the model can be applied to other settings and contexts—for example, whether the model is consistent with the experiences of help-seeking by young people in other countries. Therefore, the aim of this study was twofold, firstly to map the published literature on young people’s experiences of seeking help for mental health problems and secondly to validate whether the previously published Lost in Space model was adaptable as a theoretical model of the help-seeking process described in the included articles in this scoping review.

A scoping review was deemed the most preferable approach to responding to this broad area of interest [ 16 ]. Scoping reviews maintain a broad window for inclusion of studies of a range of types and levels of quality [ 17 ]. Our scoping review protocol was developed using the scoping review methodological framework proposed by Arksey and and O’Malley, entailing five framework stages. The framework was further developed by Levac, with a qualitative elaboration of the material [ 17 , 18 ]. These stages provide a clear sequential order in which to identify and collect studies, chart the data and report results, and the scoping review protocol was used for guiding the research.

2.1. Stage 1: Identifying the Research Question

A multidisciplinary research team with experience of health science research, including public health, nursing, and youth research was assembled to discuss and clarify the scope of inquiry and identify research questions. The target population of interest was defined as young people (ages 11–25) with experience of mental health problems, and experience of help-seeking in that regard. Mental health problems were defined as commonly experienced problems of depression or anxiety, as well as behavioural and emotional problems. Considering the concept of help-seeking, the term is used to understand the delay of care and to explore possible pathways for mental health promotion. For this study, help-seeking was defined as seeking and/or accessing professional help for mental health problems. Conceptually, help-seeking was regarded as a process influenced by social, psychological and contextual factors [ 12 ]. The research questions for this study were (1) to map general characteristics of published literature focusing on the young people’s experiences of seeking help for mental health problems, and (2) to explore how the previously published theoretical model Lost in Space could be further refined and complemented via an abductive approach, drawing the final set of categories and themes informed by the papers reviewed in this study.

2.2. Stage 2: Identifying Relevant Studies

A search strategy was developed in collaboration with a librarian to develop search terms using subject heading terms adapted to each of the three included databases: Medline/PubMed, PsycINFO and CINAHL. The search terms for the target population were adolescents, young and emerging adults; for the health outcome, they were mental health, depression, anxiety, and for the concept of interest, the term was help-seeking. Other criteria were limiting searches to studies written in English, and studies being published between 2010 and 2020 due to rapidly evolving research and policy changes in this area as well as the increased rates of mental health problems among young people. The searches were conducted during summer 2020. See Table S1 (Supplementary Materials) for the full search strategy.

Inclusion and Exclusion Criteria

Studies were eligible for inclusion if they investigated help-seeking among young people with mental health problems aged between 11 and 25. Only studies that specifically investigated young people’s own perspectives of experiencing or having experienced mental health problems and help-seeking were included. Since the intention was to understand help-seeking among young people with common mental health problems, studies on particular target groups or populations were excluded, such as studies on specific treatment interventions. Likewise, studies focusing on help-seeking attitudes or potential help-seeking intentions of general populations without personal experience of mental health help-seeking were excluded. Studies had to specifically focus on adolescents or young people; thus, studies with a more population-based perspective, or encompassing wider age groups, were excluded. Theses were not included as it was assumed that any material within a thesis on help-seeking, that otherwise fitted the inclusion criteria, would appear as published articles. Comments, editorials, consensus statements and other opinion-based papers were excluded, along with studies solely exploring the perspectives of others, other than the help-seekers themselves (e.g., families, helpers, professionals, etc.).

2.3. Stage 3: Study Selection

All identified studies from the searches were imported to the management reference tool EndNote, version 20.1, and duplicates were removed. Screening was carried out with a sequential, stepped approach and an iterative process between the authors of the study [ 18 ]. In the first step of study selection, titles and periodically abstracts were screened by KHW, who discarded obviously irrelevant studies based on the exclusion criteria. In the second step of study selection, abstracts of the remaining studies were screened independently by three of the authors (KHW, PS and MN) to determine eligibility based on the defined inclusion and exclusion criteria. Disagreements between the authors were discussed with a fourth author (JN) until consensus was reached. The third step required KHW to examine the full-text of the remaining articles to determine eligibility, subsequently discussing the articles with all authors. A PRISMA diagram ( Figure 1 ) details the screening process with number of papers retrieved and selection of the included studies.

Article search and selection process—PRISMA diagram.

2.4. Stage 4: Charting the Data

Data charting was conducted in accordance with scoping review standards using a template that was developed for the extraction of information from each study regarding the following: authorship, year of publication, journal, source of origin, design, population and age group, aims of the study, methodology and important results [ 17 ]. A descriptive, numerical summarization was made, presenting the extent, nature and scope of included studies [ 18 ], see Table S2 (Supplementary Materials) for the full bibliographic information of the included studies.

2.5. Stage 5: Collating, Summarizing and Reporting Results

A qualitative thematic analysis was conducted to examine and aggregate the findings from the help-seeking process, as depicted in the included studies [ 18 ]. For the thematic analysis, an abductive approach was taken [ 19 ], based on the previous Lost in Space model [ 15 ]. According to such an approach, hypotheses can be explicated through deduction and verified through induction. Abduction thus means that new explanations are based on background theories and, whilst taking empirical material and restrictions into account, may lead to elaborated knowledge [ 19 ].

The analysis began with reading the findings in the included articles several times, then identifying and inductively coding text and quotes [ 20 ] in relation to young people’s experiences of seeking help for mental health problems. In this phase, data were inductively scrutinized to discover experiences, expressions and perspectives, keeping codes close to the data; for example, the text ‘Some young people reported that discussing uncomfortable emotions was unfamiliar’ was coded as the theme Unfamiliarity. The deductive process followed, in which the theoretical model Lost in Space was employed. It describes help-seeking among young people with mental health problems in a Swedish context [ 15 ]. A categorization matrix was developed based on the model, emanating from the original subcategories and categories, the themes within the subcategories and the properties of themes. The deductive process in the analysis involved going back to the data and placing the inductively derived codes into themes and subcategories of the theoretical model. All themes from the original model were found through coding the analysed articles. Codes from the new material that did not match the original theoretical model subcategories contributed with new aspects to existing themes of the model and, in some cases, generated new themes, thereby broadening the understanding of help-seeking. In one instance, the name of one subcategory was altered to reflect new material. KWH performed the data analysis and, to enhance the quality and validity of the analysis, the data analysis was discussed continuously with all authors.

3.1. Mapping the Characteristics of Published Literature

In total, 1540 articles were identified as potentially relevant records, after duplicates were removed through the database searches. After the first screening of title and abstract, 1207 articles were excluded on the basis of age, format type, content (i.e., not dealing with help-seeking), focusing on specific populations or not being based on a user perspective. In the second round of screening, another 243 articles were excluded due to the eligibility criteria. In the third round of screening, the remaining 90 articles were reviewed in full-text and of these 12 articles met the full set of eligibility criteria.

The characteristics of the included studies are described in Table S2 (Supplementary Materials) . Seven articles were published between 2010 and 2015, and five after 2016. The designs were mostly qualitative, with individual interviews ( n = 9) and focus groups ( n = 7). Seven articles employed a combination of methods (for example, mixed methods), and two articles included information from surveys. The focus of articles covered: social and organizational factors impacting help-seeking, functional concerns, attitudes towards computerized mental health support, attitudes to consulting primary care, perceptions and help-seeking behaviours in schools, exploration and identification of barriers and facilitators in general populations with and without previous experience of mental health support, barriers and facilitators in male groups, links between masculinity and help-seeking, comparisons of groups’ help-seeking strategies and descriptions of experiences, self-management and help-seeking. The recruitment of participants varied, utilising educational settings ( n = 4), youth mental health services ( n = 2), community websites ( n = 1), primary care ( n = 1), youth services ( n = 2), previous participation in longitudinal studies ( n = 2) and community samples ( n = 3). Four articles focused specifically on young males, and four on barriers to help-seeking. Three articles were set in the USA, one in Canada, three in Australia and five in Europe. The age range, 11–25, was seen in a variation of age clusters, with the smallest age range being two years (ages 20–22) and the largest 13 years (ages 12–25); the mean age range covered was six years.

3.2. Examination of the Help-Seeking Process from the Perspectives of Young People

The findings from this examination showed a high level of agreement with the theoretical model Lost in Space. Overall, the results showed that help-seeking was a dynamic and psychosocial process without sequentially fixed stages, where young people expressed an unfamiliarity with, insecurity about and lack of knowledge of mental health issues, a longing for self-reliance and, in some contexts, a presence of stigma. Young people did not consider the support structures to be responsive or accessible. Below, Figure 2 outlines the examination of the help-seeking process from the perspectives of young people. It includes confirmed content of the old model, new content derived from the analysed articles, and elaborations according to the abductive method. The ‘number of meaning units’ refers to coded material in the analysed articles. ‘Original’ refers to subcategories and themes from the Lost in Space model, where findings were corroborated by codes from the analysed articles (‘confirmed content’), other elements that emerged showed further dimensions of experiences that contributed to new perspectives of established subcategories in the model (‘new content’), and some themes that emerged in the analysis were not readily encompassed within the subcategories in the original model (‘new’) (see Figure 2 ).

Examination of the help-seeking process from young people’s perspectives.

3.2.1. Drifting

Drifting, the initial category of the Lost in Space model, encompassed a general feeling of unfamiliarity, lack of knowledge, trivialising oneself and problems due to insecurity often by normalizing and minimizing one’s experiences. Young people’s voices in the analysed articles corroborated Drifting well, through similar expressions and experiences.

Fumbling in Life

In the original model, Fumbling in life encompassed themes of unfamiliarity, insecurity and trivialisation. Likewise, young people in the analysed articles expressed unfamiliarity with both mental health problems and not recognizing oneself. Lack of knowledge was frequently described both with regard to communicating, distinguishing and assessing emotions but also regarding where and when to seek help, leading to a sense of insecurity. Because of this insecurity, young people practised trivialisation, trying to make their problems smaller or unimportant. They also had the impression and fear that their problems would not be sufficient to receive support. In some of the analysed articles, trivialisation was presented as a rational strategy, enabling young people to downplay their problems and rationalizing not actively dealing with them or approaching others for help, whereas, in the original model, trivialisation was carried out due to a sense of insecurity. In this section, no conceptual changes to the original model are suggested.

In the original model, Struggling was characterized by simultaneous descriptions of mental health problems and incessant attempts and strategies to feel better, ambivalence and a longing for self-reliance. These themes re-appeared in the included articles. Mental health problems were described by the participants as emotional problems, panic attacks, sadness, self-harm, anxiety and lack of motivation. Within Struggling in the original model, young people usually referred to mental health problems as being something “within” (internal) rather than originating “outside” (global). However, in several of the analysed articles, the mental health problems were attributed to something “outside”. Hence, young people also related mental health problems to relationships, stress and risk-taking behaviour.

Themes on endeavouring strategies trying to deal with mental health problems were common in the included studies, as was also the case in the Lost in Space model, pointing to the more-or-less continual and relentless attempts and strategies young people performed in order to deal with their problems. Although it was proposed by young people in individual studies that seeking help requires effort, lack of effort was not a dominant issue for young people in either the original model or in most analysed articles. In some articles, an in-depth exploration of the strategies employed was undertaken, according to having an ‘approach’ or ‘avoidant’ character, or gendered differences, adding to the variation in strategies, whereas in the model, an abundance of strategies was ascertained; however, the type of strategy was not explored. Denial was a common strategy in both the original model and in the included articles. In the Lost in Space model, this was described as “shutting off”, with the intent of ignoring feelings and problems. This strategy was directed towards oneself: wanting to manage things, being strong and coping. In some of the analysed articles, denial was presented as relating to a sense of embarrassment, or as being done in order to protect others. Several reasons were attributed to this phenomenon: that young people did not want to trouble others, did not want to burden or alarm others, and did not trust others. In the model, reasons for denial were differentiated by a sense of responsibility, enacted by, for example, not sharing information with family and friends. Withholding information thus seemed to relate to aspects additional to a sense of responsibility and self-reliance.

A frequent theme in both the original model and in the findings from the included articles was self-reliance. Statements of wanting to be strong, trying to cope on one’s own, not sharing information and an elevated sense of responsibility to manage one’s life and mental health problems were evident. Ambivalence as a theme recurred throughout the material, in both the included studies and the original model. Young people expressed simultaneous and contradictory feelings and thoughts towards both themselves and their problems, others and help-seeking per se. They were often hesitant to seek help, whilst at the same time expressing a need and a longing for help.

The analysis of the included articles suggested no major conceptual changes to the original model, although the themes Endavouring strategies and Mental health problems are both elaborated.

Reaching a Point of No Return

Within Reaching a point of no return in the original model, young people expressed deterioration and a reaching out for support, often with the help of others. In Lost in Space, others were called ’catalysts’, showcasing their importance in actually initiating a help-seeking process. Within the analysed articles, important others were consistently brought up by the young people, with examples of others coaching, supporting, guiding and, in some instances, taking control of the help-seeking process. A new perspective in the included articles was a negative perception of control, and how others exerted control over them, compelling them to seek help. While this aspect of negative control did not emerge in the original model, an elaboration of the model may expand on the various functions of the important others, e.g., by dividing them into controllers vs. supporters. The other theme in this subcategory, deterioration, was brought up in several articles, as in the Lost in Space model. This indicated a worsening of symptoms and a decreased ability to function. Young people described not leaving the house, escalated behavioural problems, self-harm and suicide attempts, or ‘having a melt-down’ as triggers for seeking help. Young people also described how their problems were ‘revealed’ and others became aware of their problems, which in turn led to seeking help.

The included articles emphasise that seeking help is often a long process that takes place during a prolonged time-span. Therefore, in this section, a change of title of the subcategory Reaching a point of no return, to Transitioning towards decision, is suggested.

3.2.2. Navigating

The category Navigating depicted attempts of trying to find support, personal reflections, hopes and longings and wrestling with structural barriers. Expressions from young people in the analysed articles conformed well with the subcategories Trying to dock and Wrestling with structure.

Trying to Dock

This subcategory in the Lost in Space model entailed descriptions of personal reflections, hopes, longings and disappointment when trying to seek support. All themes from the original model were exemplified in the included articles. Hopes for help, as well as being safe, noticed and understood, were common in the included articles, as were accounts of the opposite, feeling unsupported. Miscommunication while not being understood or listened to also appeared in both materials as did accounts of being treated like a child and not taken seriously, thus containing references to issues of power. Several analysed articles contained descriptions by young people on how support was perceived as impersonal and instrumental rather than person-centred. This added aspects of negative references to professionalism and reliance on medication. Young people expressed the importance of reframing negative and medical terminology in positive and informal terms. Both materials contained descriptions of young people feeling unsupported, which led to continued and continual efforts of seeking support. A new theme, trust, was identified in the thematic analysis from descriptions of lack of confidence in treatment, and how familiarity facilitated help-seeking. A lack of trust was depicted as arising from limited prior contact, from anxiety about seeking help, from concerns about professional competence and from negative perceptions of professionals. Within the theme of trust in the articles, concerns about confidentiality and parental involvement surfaced, whereas, in the original model, these concerns were interpreted as structural obstacles.

Common themes in the articles were stigma and shame, whereas in the original model, this was not pervasive. The included articles relayed young people’s strong sense of shame about seeking help. They perceived it as a display of weakness. Fear of social consequences, ridicule and a longing to fit in led young people to describe a feeling of shame or embarrassment, and to having thoughts of what others would think and say. They also made efforts to conceal both mental health problems and help-seeking. Articles focusing exclusively on males stressed the gendered aspect of this, claiming that this group was affected by masculine ideals of strength and autonomy, which hindered displays of weakness and prevented help-seeking. In the original model, some findings relating to this theme were described; however, the term stigma was never used. Instead, this was described in the subcategory Wrestling with structure, in relation to seeking support in school, with references of embarrassment and an undesirable show of weakness in front of peers.

In this section, the analysed articles provide more aspects on the Feeling unsupported and Miscommunication themes. The large presence of codes in the new material relating to Stigma and Trust suggests the incorporation of Stigma and Trust as unique themes into the model.

Wrestling with Structure

In both the original model and the analysed articles, there were multiple references to structural obstacles, such as access, waiting times, resources, continuity, inadequate chains of support, and lack of coordination between supporters. Young people voiced feelings of not being met by professionals in an appropriate and timely manner, and concerns about how they were passed on, being referred to other support structures, and how there was a perceived lack of resources, making access difficult. Help-seeking was described as inconsistent, with repeated attempts at initiating and discontinuing help. Young people in several articles, and the original model, expressed that primary care was not an option when seeking support. Primary care was regarded as handling physical health complaints and that its practitioners were not being skilled in mental health issues. Particularly for the ‘younger’ of the young people, expressions that primary care was not directed at their age group were voiced. The inadequate support services theme was thus corroborated by young people in other contexts.

Confidentiality and age issues were concerns for the young people, both within the original model and the thematic analysis, primarily relating to parental control and insight. Both materials contained descriptions of how young people assumed and were concerned that confidential information shared with professional supporters would be communicated to parents. In some articles, this was said to relate to the theme of trust; however, confidentiality was mainly related to being a minor lacking power. Young people also voiced that being a minor was as an obstacle for independently accessing help. Likewise, age was an issue for the ‘older’ young people, who reported feeling out-of-place at youth-specific services. In the original model, a sense of resignation, often related to difficulties accessing support and feeling unsupported, was evident. The included articles provided additional material relating to this, as a sense of powerlessness appeared in several subcategories, and in the process as a whole.

The analysis supported a clearer conceptual division between subcategories Wrestling with structure and Trying to dock in the model. The latter entailed primarily personal accounts and experiences, expressions of hopes, disappointments and recounts of feelings, and the former referred primarily to structural conditions. Recurring references in relation to powerlessness suggest this is elevated to a permeating theme, capturing young people’s experience of seeking help.

3.2.3. Docking

Docking in the original model contained references from young people to the subcategories Finding support and Changing as a person.

Finding Support

All original themes of the subcategory Finding support were found in the thematic analysis. In both the original model and the analysed articles, young people described experiences of being validated, accepted, recognized and listened to. The importance of the comfort of support and initial positive contact was stressed. Descriptions of good and bad supporters and preferences regarding, for example, gender and profession, were evident. Both materials contained descriptions of negative outcomes and unwanted consequences from having sought help; for example, in the original model, this was described as problems being exaggerated and social services becoming involved. In the analysed articles were descriptions of referrals to support services appearing as punitive rather than helpful. This subcategory also contained accounts in both the analysed articles and the original model of young people being disregarded and not being taken seriously.

In this section, no changes to the model are suggested.

Changing as a Person

In the original model, this subcategory described the consequences of successful help-seeking in the form of gaining knowledge and positive personal change. Young people in the original model stressed the positive aspects and changes after having experienced mental health problems. Some references were found in the articles with regard to this subcategory, with personal change depicted as finding a more positive outlook on life through one’s own determination and decisiveness.

In this section, the analysed articles provide more aspects on the theme Changing as a person, but no changes to the model are suggested.

Overall, the findings from the analysis aided in developing an elaborated model of help-seeking, Figure 3 . The overall notion of help-seeking as a fluid and dynamic process with the three categories Drifting, Navigating and Docking was reinforced.

Elaborated and further developed theoretical model of help-seeking among young people for mental health problems.

4. Discussion

This scoping review aimed to map published literature on young people’s experiences of seeking help for mental health problems, and to validate whether the previously published model Lost in Space was adaptable as a theoretical model of the help-seeking process. A high level of conformity was found between help-seeking as depicted by the original Lost in Space model and the analysed articles of this study. The analysis reinforced that help-seeking is to be regarded as a fluid and psychosocial process, often experienced by users as unfamiliar and obstacle-laden, tainted by feelings of powerlessness [ 21 , 22 , 23 , 24 ].

4.1. Discussion and Implications in Relation to the Original Model Lost in Space

After reviewing up-to-date literature on user perspectives of help-seeking for mental health problems among young people, it is clear that the depiction of the initial stage of help-seeking, as being characterized by a sense of drifting, was, to a large extent, corroborated from young people’s experiences described in the reviewed articles. Regardless of context, young people expressed a general feeling of unfamiliarity and a lack of knowledge, often coupled with a sense of insecurity, and trivialisation of experiences [ 21 , 22 , 23 , 25 , 26 , 27 , 28 , 29 , 30 ]. This was also supported by a large number of codes and expressions relating to the endeavouring strategies theme in an effort to be self-reliant [ 22 , 23 , 25 , 26 , 27 , 28 , 29 , 30 , 31 ]. This points to the more-or-less continual and relentless nature of the efforts of young people to deal with their problems. A strong wish for self-reliance was consistently stressed in the reviewed articles, with a large variation and number of strategies used to implement self-reliance and deal with mental health problems. Incorporating an elaboration regarding the characteristics of strategies—whether positive/negative, destructive/constructive or approach/avoidant strategies—would provide an additional perspective on how mental health is dealt with by young people. The reviewed articles confirmed that reaching a decision to seek help often takes place with the aid of others [ 21 , 22 , 23 , 24 , 25 , 29 , 31 , 32 ] and distinction between ‘controllers’ and ‘supporters’ in this regard may further elaborate the model. Re-naming of the subcategory Reaching a point of no return into Transitioning towards decision would reflect the transitional nature of the mental health help-seeking process.

The category Navigating, capturing both personal experiences and structural barriers, was well confirmed by the review. Reflections of not being met by professionals in an appropriate and timely manner, and observations of a perceived lack of resources making access difficult, surfaced in both the original model and the included articles [ 23 , 26 , 29 ]. Accounts of not being taken seriously, being treated like a child, not listened to and disregarded, indicating power-issues relating to the experiences of young people, as well as descriptions of inconsistent use of support, repeatedly initiating and discontinuing help, appeared in the original model as well as the included articles [ 22 , 26 , 28 , 29 ]. Stigma and Trust surfaced as new themes, and Stigma in particular appeared with a large number of codes in the analysed articles. Young people described a feeling of shame, embarrassment, thoughts of what others would think and say and various efforts to conceal both mental health problems and their help-seeking [ 21 , 22 , 23 , 25 , 26 , 27 , 28 , 31 ]. Several articles dealt exclusively with young men and boys, proposing that the reasons for not seeking help were strongly conditioned by gender, with masculine ideals of strength and autonomy acting as obstacles for help-seeking [ 21 , 23 , 28 , 31 ]. Similar findings emerged in the Lost in Space model, where issues of self-reliance, wanting to be strong, and shunning displays of weakness, were shared between participants, and were not gender specific. Cultural variations may account for this difference between studies and findings. This said, most participants in studies on help-seeking are female and the findings may translate poorly to other populations and contexts. Help-seeking is exceptionally low among boys and young men, which in itself calls for a focus on specific populations with particularly low help-seeking [ 33 , 34 ].

The latter part of the original model, Docking, was not as well corroborated through the analysis. There were few descriptions of actually finding support and even fewer of personal reflections on the effects of finding help [ 21 , 22 , 31 ]. It may be that research on the help-seeking process does not focus on support and is discontinued as soon as support is established, and aspects of this may be found in other literature on service utilization or treatment satisfaction. However, by dividing the help-seeking journey into smaller isolated fractions, focus on the process as a whole could be missed, resulting in a stunted model and less understanding of the help-seeking process. Overall, the included articles reinforced the model of help-seeking as a dynamic and psychosocial process, consisting of different stages but without being sequentially fixed.

4.2. Discussion and Implications in Practice

This review on help-seeking for common mental health problems included young people from the age of 11 to 25, thus also including young adults. The studies described in the included articles were based on varied recruitment strategies from different contexts. No specific patterns according to age or context could be discerned. The concerns voiced in the studies included themes on structural barriers of the support system, an unfamiliarity and lack of knowledge of mental health and the support system, and simultaneously, a wish for self-reliance, suggesting possible strategies for meeting the help-seeking needs of young people. Although this study aimed to include articles focusing on groups that were wide enough to be defined as population-based, the focus of the included articles tended to be on particular populations, stressing the vulnerability and poor help-seeking of one particular group. Thus, the research had ethno-centric tendencies, whereas there were large overlaps and resemblances of experiences by young people in the help-seeking process regardless of contexts. The attribution of non-help-seeking to stigma and cultural norms amongst Black, Latino and Chinese American youth was observed by others, pointing to this being a more general, rather than group-specific phenomenon [ 32 ].

Structural factors, and how young people experience the support system, play an important role in the help-seeking process. Despite different contexts, young people expressed similar concerns relating to issues of availability and accessibility. There were views that waiting times were too long, resources were too few, and in some contexts, that costs and distances posed problems [ 21 , 23 , 25 , 26 , 28 , 29 ]. Other research has shown that there is a perceived inaccessibility of the support system across different groups of young people regarding resources, entry requirements and coordination between services [ 13 ]. Structural obstacles stretch over different geographical and socio-economic backgrounds at the macro level, with high-income countries still showing substantial delays and poor help-seeking rates for young people [ 14 , 35 ]. Thus, even in favourable circumstances, young people perceive structural barriers, pointing to how the support system does not accommodate the fluid and changeable nature of help-seeking. Young people regard mental health as a complex social and relational matter [ 36 ]. They often present with diagnostically confusing symptoms, and support systems that are traditionally organized according to medical specialities may not meet the needs of young people with common mental health problems [ 37 ]. Integrated youth centres, focusing on meeting young people’s needs in one place through multidisciplinary support with consideration of the context, show promising results [ 38 , 39 ]. In comparison to traditional support, which is by definition siloed and often entails entry requirements according to diagnostic thresholds, integrated youth-friendly services seem to increase help-seeking and access to support, even among groups that are usually hard to reach [ 33 , 39 ]. Studies in a Swedish context have pointed out that youth health clinics providing services to build upon with multi-professional teams and expertise on mental health are available throughout Sweden [ 40 ].

Young people reported a lack of knowledge on mental health and the support system, leading to a sense of insecurity and possibly a delay of help-seeking. Improved health literacy among young people may facilitate help-seeking through mechanisms of awareness of service availability and symptom recognition [ 13 ]. However, improved help-seeking and mental health among young people may require more than only improved knowledge. Previous reviews have, for example, shown past positive experiences and outcomes of help-seeking and positive contacts with support professionals to be facilitators for seeking help [ 4 , 8 ]. At the same time, a preference for self-reliance when facing mental health problems is consistently reported, with this being particularly prominent in studies with participants having previous experience of mental health problems and mental health support, contradicting the findings of past experiences facilitating help-seeking [ 8 , 23 ]. Young women in particular seem to have poor expectations regarding therapeutic outcomes, signalling a lack of trust in professional supporters, with treatment being perceived as impersonal and protocol-driven [ 23 ]. The results of this study identified the importance of supporters’ ability to meet young people responsively, using a person-centred approach. Young people felt more comfortable when the supporters did not use medical language and emphasized the importance of using positive and informal terms for improving communication between the young person and the supporter. Other studies have confirmed this finding, underlining the importance of having young staff who are skilled, respectful, welcoming, and allow for participation and shared decision-making [ 39 ].

With this review showing how young people experience mental health help-seeking as a psychosocial and fluid process, often with lack of knowledge and a sense of insecurity, prompt consideration of the organization of present support systems is needed. Young people need to be met in a person-centred and flexible manner. Perhaps, this is where the greatest effort is needed, addressing issues of power from the perspectives of young people, improving opportunities for personal self-reliance and personalized support.

5. Methodological Considerations

This review has some limitations. The choice of databases and keywords was developed in accordance with an experienced health literature librarian; however, making a choice always entails the risk that some information may have been missed. Other databases and different keywords may have produced different results. The criteria for including articles were that they should deal with the direct perspectives of young people who had experienced mental health problems and/or help-seeking. Whilst excluding those who had no experience of help-seeking (thus all articles dealing with intentions to seeking help only) might have been a clear-cut and easy choice, that would also have meant that we excluded those with experience of mental health problems who had not sought help for various reasons; thus, avoidance is also a perspective that is worth taking into consideration.

We aimed to include studies focusing on groups wide enough to be defined as population-based; nevertheless, these still often utilized an ethnocentric perspective, such as having a particular ethnic descent. This automatically raises the issue of generalizability and transferability. It was evident that studies consistently focused on particular populations, stressing the vulnerability and poor help-seeking of this particular group. However, similar claims kept reappearing, regardless of which particular group was being studied. A noteworthy phenomenon is that all included articles were published in Western countries. This also limits the transferability of the findings, as young people around the world may be situated in significantly different contexts.

In order to limit bias, the work was conducted by alternating methods of individual and joint reviews. However, subjectivity is a relevant issue that the authors of this review could not completely avoid.

6. Conclusions and Implication

The field of help-seeking among young people for mental health problems is receiving growing attention in research and academic literature. However, this review shows that there is substantial heterogeneity among studies with regard to methods, populations and how help-seeking is investigated. In qualitative literature exploring user perspectives, help-seeking is depicted as a fluid, dynamic and psychosocial process, validating the theoretical model of Lost in Space. Important findings include the presence of stigma, a lack of knowledge of mental health issues, a longing for self-reliance and a sense of powerlessness expressed by young people in various contexts and countries. Paying attention to these findings would imply acknowledging young people’s sense of feeling lost, making support services more flexible and person-centred.

Acknowledgments

Caroline Karlsson greatly contributed with the graphical model.

Supplementary Materials

The following are available online at https://www.mdpi.com/article/10.3390/ijerph19031430/s1 , Table S1, full search strategy, Table S2, characteristics of included studies.

Author Contributions

All authors (K.H.W., M.N., J.M.N. and P.S.) made significant contributions to the original paper. K.H.W., M.N., J.M.N. and P.S. together identified the research question and designed the study. The data search was conducted by K.H.W., and stepped screening was performed by K.H.W., M.N., J.M.N. and P.S. In addition, K.H.W. drafted the manuscript and M.N., J.M.N. and P.S. provided critical revision of the paper in terms of important intellectual content. All authors have read and agreed to the published version of the manuscript.

This research received no external funding.

Institutional Review Board Statement

This study did not require ethical clearance.

Informed Consent Statement

Not applicable.

Data Availability Statement

Conflicts of interest.

The authors declare no conflict of interest.

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