What Should Personalised Mental Health Support Involve? Views of Young People with Lived Experience and Professionals from Eight Countries.

Research demonstrates that young people value mental health support that is tailored to their needs and preferences, rather than a "one size fits all" offer, which is often not equitably accessible (National Children's Bureau, 2021). Understanding young people's lived experiences across different sociocultural contexts is important. The aim of this research was to conduct an international qualitative study on the views of young people with lived experience and professionals, on proposed aspects of personalised support for anxiety and/or depression. Participatory action focus groups were conducted with N = 120 young people with lived experience of anxiety and/or depression (14-24 years) and with N = 63 professionals in Brazil, India, Kenya, Pakistan, Portugal, South Africa, Turkey, and the United Kingdom. Data were analysed using the rigorous and accelerated data reduction (RADaR) technique. Overall, although some country-specific differences were found in terms of what aspects of support young people found to be most important, individual preferences were considered stronger, furthering the view that support should be personalised to the needs of the individual young person. Young people experiencing anxiety and/or depression should be able to choose for themselves which aspects of support they would prefer in their own care and support plans, with families and mental health professionals providing guidance where appropriate, rather than removing the young person from the decision-making process altogether. It should also be ensured that the aspects of personalised support can be understood by young people and professionals from different contexts, including marginalised and minoritised groups and communities.

Characteristics of young people accessing recently implemented Community Forensic Child and Adolescent Mental Health Services (F:CAMHS) in England: insights from national service activity data.

Children and young people in contact with forensic child and adolescent mental health services present with more complex needs than young people in the general population. Recent policy in child and adolescent mental health has led to the implementation of new workstreams and programmes to improve service provision. This research examines the characteristics of children and young people referred to recently commissioned Community Forensic Child and Adolescent Services (F:CAMHS) and service activity during the first 24 months of service. The study is a national cohort study to describe the population and investigate service provision and access across England. Secondary data on 1311 advice cases and 1406 referrals are included in analysis. Findings show that 71.9% of the sample had accessed mainstream CAMHS before their referral, 50.9% had experienced/witnessed multiple traumatic events and 58.4% of young people presented with multiple difficulties. The results of the study highlight the complexity of the cohort and a need for interagency trauma-informed working. This is the first study to describe the characteristics of children and young people referred to Community F:CAMHS and provides valuable information on pathways and needs to inform service policy and provision.

Notes from the youth mental health field: Using movement towards goals as a potential indicator of service change and quality improvement.

The aim of this paper is to report our notes from the field on using movement toward goals at an aggregate level as an inference of service effectiveness. Analysis of routinely collected data from UK youth mental health services was conducted (N = 8,172, age M = 13.8, 67% female, 32% male) to explore the impact of including goal-based outcome data in combined calculations of standardized measures based on the principles of reliable change ("measurable change"). Due to the broad nature of standardized measures, inferred validity becomes diluted in any team or service level aggregate analysis. To make inferences that are closer to the person's interpretation of their difficulties, we argue that Idiographic Patient Reported Outcome Measures (I-PROMs) counterbalance these limitations. This is supported by our findings. The measurable change metric is the first step towards enabling national analysis of aggregated I-PROMs. I-PROMs, supplemented by standardized measures should be used to consider service evaluation.

Idiographic patient reported outcome measures (I-PROMs) for routine outcome monitoring in psychological therapies: Position paper.

Idiographic patient-reported outcome measures (I-PROMs) are a growing set of individualized tools for use in routine outcome monitoring (ROM) in psychological therapies. This paper presents a position statement on their conceptualization, use, and analysis, based on contemporary evidence and clinical practice. Four problem-based, and seven goal-based, I-PROMs, with some evidence of psychometric evaluation and use in psychotherapy, were identified. I-PROMs may be particularly valuable to the evaluation of psychological therapies because of their clinical utility and their alignment with a patient-centered approach. However, there are several challenges for I-PROMs: how to generate items in a robust manner, their measurement model, methods for establishing their reliability and validity, and the meaning of an aggregated I-PROM score. Based on the current state of the literature, we recommend that I-PROMs are used to complement nomothetic measures. Research recommendations are also made regarding the most appropriate methods for analyzing I-PROM data.

Youth and professional perspectives of mental health resources across eight countries.

Introduction: Youth mental health support and services vary across sociocultural contexts. It is important to capture the perspectives of youth with lived experiences for planning needs-led interventions and services, especially in Global South Countries (GSC), with limited specialist resources and representative literature. Methods: The aim was to establish how youth with lived experiences of anxiety and depression viewed external support in different countries, and how these views were juxtaposed with those of professionals. We involved 121 youth aged 14-24 years and 62 professionals from different disciplines in eight countries, predominantly from the Global South. Two youth and one professional focus group was facilitated in each country. The data were analysed through a codebook thematic approach. Results: Youth across all countries largely valued informal support from family, peers and community, whilst those from GSC had limited access to structural support. They related lived experiences to therapeutic engagement and processes, in contrast with professionals who focused on outcomes and service delivery. Mental health awareness and integration of interventions with social support were considered essential by both youth and professionals, especially in disadvantaged communities. Conclusion: The mental health needs of youth in disadvantaged GSC communities can be best met through multi-modal interventions addressing these needs across their socioecology and positioned within a stepped care model. Youth with lived experiences should be involved in service planning, implementation and monitoring.

Assessing the need of young people using online counselling services: how useful are standardised measures?

BACKGROUND: Clinical assessments for children and young people entering a mental health service help to identify the prevalence of need within that population, support intervention recommendations, and enable service evaluation. Evidence related to the use of standardised measures in an ever-expanding online environment, for the purpose of identifying need, is limited. METHODS: This study explores the reliability of using a standardised measure to detect clinical need in an online therapeutic environment, and the measures assessed are as follows: Strengths and Difficulties Questionnaire (SDQ), Young Person's CORE (YP-CORE) and the Short Warwick and Edinburgh Wellbeing Scale (SWEMWBS). A deep-dive approach is used to inform practitioner assessment of young people, followed by a Weighted Cohen's Kappa (Κw) to measure the interrater reliability between this and the individuals' self-rated outcome. Composite case studies represent the complexities of presentation among the sample population. RESULTS: The interrater reliability between self-rated and practitioner rated assessment varied between Κw = .222 and Κw = 0.446 depending on the measure. High levels of need and low levels of well-being were found among the sample (YP-CORE Avg. = 26.9, SDQ Avg. = 19.56, SWEMWBS Avg. = 18.1). CONCLUSIONS: The findings demonstrate a fair to moderate reliability when assessing concordance between service users and practitioners, which suggests standardised measures are a reliable indicator of need. Higher levels of need were present than those seen previously in general or face-to-face clinical populations, which suggests using such measures in an online therapeutic environment influences the way in which assessments are responded to.

Predicting mental health improvement and deterioration in a large community sample of 11- to 13-year-olds.

Of children with mental health problems who access specialist help, 50% show reliable improvement on self-report measures at case closure and 10% reliable deterioration. To contextualise these figures it is necessary to consider rates of improvement for those in the general population. This study examined rates of reliable improvement/deterioration for children in a school sample over time. N = 9074 children (mean age 12; 52% female; 79% white) from 118 secondary schools across England provided self-report mental health (SDQ), quality of life and demographic data (age, ethnicity and free school meals (FSM) at baseline and 1 year and self-report data on access to mental health support at 1 year). Multinomial logistic regressions and classification trees were used to analyse the data. Of 2270 (25%) scoring above threshold for mental health problems at outset, 27% reliably improved and 9% reliably deteriorated at 1-year follow up. Of 6804 (75%) scoring below threshold, 4% reliably improved and 12% reliably deteriorated. Greater emotional difficulties at outset were associated with greater rates of reliable improvement for both groups (above threshold group: OR = 1.89, p < 0.001, 95% CI [1.64, 2.17], below threshold group: OR = 2.23, p < 0.001, 95% CI [1.93, 2.57]). For those above threshold, higher baseline quality of life was associated with greater likelihood of reliable improvement (OR = 1.28, p < 0.001, 95% CI [1.13, 1.46]), whilst being in receipt of FSM was associated with reduced likelihood of reliable improvement (OR = 0.68, p < 0.01, 95% CI [0.53, 0.88]). For the group below threshold, being female was associated with increased likelihood of reliable deterioration (OR = 1.20, p < 0.025, 95% CI [1.00, 1.42]), whereas being from a non-white ethnic background was associated with decreased likelihood of reliable deterioration (OR = 0.66, p < 0.001, 95% CI [0.54, 0.80]). For those above threshold, almost one in three children showed reliable improvement at 1 year. The extent of emotional difficulties at outset showed the highest associations with rates of reliable improvement.

Service-level variation, patient-level factors, and treatment outcome in those seen by child mental health services.

Service comparison is a policy priority but is not without controversy. This paper aims to investigate the amount of service-level variation in outcomes in child mental health, whether it differed when examining outcomes unadjusted vs. adjusted for expected change over time, and which patient-level characteristics were associated with the difference observed between services. Multilevel regressions were used on N = 3256 young people (53% male, mean age 11.33 years) from 13 child mental health services. Outcome was measured using the parent-reported Strengths and Difficulties Questionnaire. The results showed there was 4-5% service-level variation in outcomes. Findings were broadly consistent across unadjusted vs. adjusted outcomes. Young people with autism or infrequent case characteristics (e.g., substance misuse) had greater risk of poor outcomes. Comparison of services with high proportions of young people with autism or infrequent case characteristics requiring specialist input needs particular caution as these young people may be at greater risk of poor outcomes.

Goal formulation and tracking in child mental health settings: when is it more likely and is it associated with satisfaction with care?

Goal formulation and tracking may support preference-based care. Little is known about the likelihood of goal formulation and tracking and associations with care satisfaction. Logistic and Poisson stepwise regressions were performed on clinical data for N = 3757 children from 32 services in the UK (M age = 11; SDage = 3.75; most common clinician-reported presenting problem was emotional problems = 55.6%). Regarding the likelihood of goal formulation, it was more likely for pre-schoolers, those with learning difficulties or those with both hyperactivity disorder and conduct disorder. Regarding the association between goal formulation and tracking and satisfaction with care, parents of children with goals information were more likely to report complete satisfaction by scoring at the maximum of the scale. Findings of the present research suggest that goal formulation and tracking may be an important part of patient satisfaction with care. Clinicians should be encouraged to consider goal formulation and tracking when it is clinically meaningful as a means of promoting collaborative practice.

Interpreting standardized and idiographic outcome measures in CAMHS: what does change mean and how does it relate to functioning and experience?

BACKGROUND: Patient Reported Outcome Measures (PROMs) are increasingly being used in Child and Adolescent Mental Health Services (CAMHS). The aim of this research was to explore change in standardized and idiographic outcome measures in CAMHS using naturalistic, routinely collected data. METHOD: We explored change in psychosocial difficulties and impact on daily life as evaluated by a broad standardized measure, the Strengths and Difficulties Questionnaire (SDQ) (Goodman, 1997, J. Child Psychol. Psychiatry, 38, 581) and progress toward goals as evaluated by a personalized idiographic measure, the Goal Based Outcomes tool (GBO) (Law, 2011, Goals and Goal Based Outcomes (GBOs): some useful information. London: CAMHS Press) in a sample of N = 137 CAMHS attenders. RESULTS: Psychosocial difficulties and impact on daily life showed less change over the course of treatment than progress toward goals in this study. Change in psychosocial difficulties and impact on daily life were also less strongly associated with change in clinician-reported functioning and satisfaction with care at time two than change in progress toward goals. CONCLUSIONS: Findings of the present research may support previous studies in which service users and clinicians report that idiographic measures are more capable than standardized measures of capturing relevant change for individuals.

Goal-based measurement in paediatric settings: implications for practice.

There is an observed link between physical illness and mental health difficulties and an increased likelihood of mental health difficulties in young people with chronic health conditions. The main outcome focus in paediatric settings is on physical health outcomes and functioning. In terms of functioning, the focus is on quality of life, measures of emotional well-being and perceptions of personal change, which are likely to be multifaceted and vary between patients. To complement standardised and diagnostically based measures, goal-based outcome measurement may be considered. The aim of this paper is to build on previous research, to provide a reflective commentary based on the authors' clinical and research experience in the use and interpretation of goal-based outcomes, to address what using goal-based measures for outcome purposes in these settings means practically. Examples are provided to demonstrate the importance of considering meaningful outcomes of importance to young people and how professionals may presume that physical 'recovery' is the goal of treatment, but what recovery means to that young person may be very nuanced. Further key considerations and suggested phrasing are given to introduce and work with young people's goals.

Examining concurrent validity and item selection of the Session Wants and Needs Outcome Measure (SWAN-OM) in a children and young people web-based therapy service.

Background: Single-session mental health interventions are frequently attended by children and young people (CYP) in both web-based and face-to-face therapy settings. The Session "Wants" and "Needs" Outcome Measure (SWAN-OM) is an instrument developed in a web-based therapy service to overcome the challenges of collecting outcomes and experiences of single-session therapies (SSTs). It provides pre-defined goals for the session, selected by the young person prior to the intervention, on which progress toward achievement is scored at the end of the session. Objective: The objective of this study was to evaluate the instrument's psychometric properties, including concurrent validity against three other frequently used outcome and experience measures, at a web-based and text-based mental health service. Methods: The SWAN-OM was administered for a period of 6 months to 1,401 CYP (aged 10-32 years; 79.3% white; 77.59% female) accessing SST on a web-based service. Item correlations with comparator measures and hierarchical logistic regressions to predict item selection were calculated for concurrent validity and psychometric exploration. Results: The most frequently selected items were "Feel better" (N = 431; 11.61%) and "Find ways I can help myself" (N = 411; 11.07%); unpopular items were "Feel safe in my relationships" (N = 53; 1.43%) and "Learn the steps to achieve something I want" (N = 58; 1.56%). The SWAN-OM was significantly correlated with the Experience of Service Questionnaire, particularly the item "Feel better" [rs(109) = 0.48, p < 0.001], the Youth Counseling Impact Scale, particularly the item "Learn the steps to achieve something I want" [rs(22) = 0.76, p < 0.001], and the Positive and Negative Affect Schedule, particularly the items "Learn how to feel better" [rs(22) = 0.72, p < 0.001] and "Explore how I feel" [rs(70) = -0.44, p < 0.001]. Conclusion: The SWAN-OM demonstrates good concurrent validity with common measures of outcome and experience. Analysis suggests that lesser-endorsed items may be removed in future iterations of the measure to improve functionality. Future research is required to explore SWAN-OM's potential to measure meaningful change in a range of therapeutic settings.

International youth mental health case study of peer researchers' experiences.

BACKGROUND: The involvement of young people as peer researchers, especially with lived experience, is increasingly considered important in youth mental health research. Yet, there is variation in the understanding of the role, and limited evidence on its implementation across different research systems. This case study focusses on the barriers and enablers of implementing peer researcher roles within and across majority world countries contexts. METHODS: Based on an international youth mental health project involving different levels of peer researchers and participants from eight countries, peer researchers and a co-ordinating career researcher reflect on lessons regarding enabling and challenging factors. These reflections are captured and integrated by a systematic insight analysis process. RESULTS: Building on existing international networks, it was feasible to actively involve peer researchers with lived experience in a multi-country mental health study, who in turn recruited and engaged young participants. Identified challenges include the terminology and definition of the role, cultural differences in mental health concepts, and consistency across countries and sites. DISCUSSION: Peer researchers' role could be strengthened and mainstreamed in the future through ongoing international networks, training, sufficient planning, and active influence throughout the research process. TRIAL REGISTRATION: Not applicable.

The involvement of young people with lived experience as collaborators (peer researchers) in mental health research has become more prominent in recent years. Yet, there is variation in the understanding of this role and how to involve young people. There is also limited evidence on how this role can be applied across different research systems, especially in majority world countries. We share our experience from a youth mental health project involving peer researchers in eight countries. Peer researchers and the co-ordinating career researcher reflected on lessons regarding enabling and challenging factors. Their reflections highlighted that, overall, it is feasible to successfully involve young people with lived experience in international mental health research. Several challenges were also identified, including terminology, definition of roles, cultural differences in understanding mental health, and consistency across participating countries and sites. According to peer researchers' reflections, these challenges can be overcome through the establishment of ongoing international networks, training and support, sufficient planning and peer researchers getting involved at all the stages of the research. Lessons from this case study can be of interest to the international research community in strengthening the involvement of young people in mental health research.

Children and young people's mental health outcome measures in paediatrics.

Paediatricians are increasingly likely to encounter children and young people with mental health difficulties, either as primary presentations or as comorbidities linked with chronic illnesses. However, paediatricians may have limited training or experience regarding the tools available to identify mental health needs and how to use these tools. The current paper aims to provide a go-to guide for paediatricians when considering the use of mental health and well-being outcome measures, including how to select, administer and interpret measures effectively. It also provides practical guidance on the most common mental health outcome measures used in children and young people's mental health services across the UK and elsewhere, which paediatricians are likely to encounter in their practice. Paediatricians may also find these measures useful in their own practice to screen for potential mental health difficulties, monitor the impact of chronic health conditions on a young person's mental health and well-being, or to provide evidence when referring young people to mental health services.

Monitoring and Measurement in Child and Adolescent Mental Health: It's about More than Just Symptoms.

Routine outcome monitoring (ROM) provides information to practitioners and others providing healthcare support to demonstrate the impact of interventions and for service evaluation [...].

Readability of Commonly Used Quality of Life Outcome Measures for Youth Self-Report.

Self-report measures are central in capturing young people's perspectives on mental health concerns and treatment outcomes. For children and adolescents to complete such measures meaningfully and independently, the reading difficulty must match their reading ability. Prior research suggests a frequent mismatch for mental health symptom measures. Similar analyses are lacking for measures of Quality of Life (QoL). We analysed the readability of 13 commonly used QoL self-report measures for children and adolescents aged 6 to 18 years by computing five readability formulas and a mean reading age across formulas. Across measures, the mean reading age for item sets was 10.7 years (SD = 1.2). For almost two-thirds of the questionnaires, the required reading age exceeded the minimum age of the target group by at least one year, with an average discrepancy of 3.0 years (SD = 1.2). Questionnaires with matching reading ages primarily targeted adolescents. Our study suggests a frequent mismatch between the reading difficulty of QoL self-report measures for pre-adolescent children and this group's expected reading ability. Such discrepancies risk undermining the validity of measurement, especially where children also have learning or attention difficulties. Readability should be critically considered in measure development, as one aspect of the content validity of self-report measures for youth.

Goal setting with young people for anxiety and depression: What works for whom in therapeutic relationships? A literature review and insight analysis.

BACKGROUND: Goal setting and goal-focused work is widely used in young people's mental health settings. However, little is known about how, why or for whom this is helpful. This study aims to explore the mechanisms of collaborative goal setting as part of therapeutic relationships: is it helpful for young people experiencing anxiety and/or depression, how and why/not, for whom, and under what circumstances? METHODS: Online database searches generated 10,907 records. Seven unique studies are included, combined with insight analysis from directed discussions with international advisors with lived experience of anxiety and/or depression and therapy (N = 8; mean age = 20.8), and mental health academics/clinicians (N = 6). RESULTS: Findings are presented as a narrative synthesis and suggest that goal setting is helpful to young people experiencing anxiety and/or depression because it helps build good therapeutic relationships through open communication and building trust. Goal setting helps make things more manageable, enabling young people to feel supported and have ownership of their care. Individual preferences, or high levels of distress, trauma, low confidence, hopelessness, negative past experiences of goal setting, perfectionism, and rumination are considered limiting factors to goal setting. Additionally, contextual factors including country and long-term therapy are explored. CONCLUSION: Whilst the resultant sample is small, emphasis on the voices of young people in the research is both prominent and of paramount importance. Several key literature gaps are identified, including evidenced links to the reduction in symptoms. Priority must be given to researching unhelpful mechanisms of goal setting for young people experiencing anxiety and/or depression, to avoid any potential iatrogenic effects.

Association between single session service attendance and clinical characteristics in administrative data.

A large proportion of young people accessing specialist mental health services do so for a single session. The aim of the present study was to examine the characteristics of young people attending specialist mental health services for a single session and to examine associations between single session attendance and clinical characteristics. Secondary analysis of administrative data on N = 23,300 young people (mean age = 12.73 years, 57% female, 64% White British) was conducted. The mean number of sessions attended was 4.33 and 46% (10,669) attended for a single session. Multilevel logistic regression analysis showed that younger children, Black young people (OR = 1.20, 95% CI = 1.01-1.43) or those whose ethnicity was not stated (OR = 1.25, 95% CI = 1.15-1.35), young people with peer relationship difficulties (OR = 1.11, 95% CI = 1.04-1.19) or low frequency problems (OR = 1.06, 95% CI = 0.99-1.14), and those with more complexity factors (OR = 1.07, 95% CI = 1.04-1.10) were more likely to attend services for a single session. The present study sets out research questions to prompt future research: (1) the experience of attending services for a single session, (2) identifying groups of single session attenders who do not require further support compared to those who are not able to sustain engagement with more sessions, and (3) whether new care pathways are needed for these groups who currently access specialist mental health services for a single session.

Young People Who Meaningfully Improve Are More Likely to Mutually Agree to End Treatment.

Objective: Symptom improvement is often examined as an indicator of a good outcome of accessing mental health services. However, there is little evidence of whether symptom improvement is associated with other indicators of a good outcome, such as a mutual agreement to end treatment. The aim of this study was to examine whether young people accessing mental health services who meaningfully improved were more likely to mutually agree to end treatment. Methods: Multilevel multinomial regression analysis controlling for age, gender, ethnicity, and referral source was conducted on N = 8,995 episodes of care [Female = 5,469, 61%; meanAge = 13.66 (SD = 2.87) years] using anonymised administrative data from young people's mental health services. Results: Compared to young people with no change in mental health difficulties, those showing positive meaningful changes in mental health difficulties were less likely to have case closure due to non-mutual agreement (Odds Ratio or OR = 0.58, 95% Confidence Interval or CI = 0.50-0.61). Similarly, they were less likely to transfer (OR = 0.61, 95% CI = 0.49-0.74) or end treatment for other reasons (OR = 0.59, 95% CI = 0.50-0.70) than by case closure due to mutual agreement. Conclusion: The findings suggest that young people accessing mental health services whose symptoms meaningfully improve are more likely to mutually agree to end treatment, adding to the evidence that symptom improvement may be appropriate to examine as an indicator of a good outcome of accessing mental health services.

Realist Process Evaluation of the implementation and impact of an organisational cultural transformation programme in the Children and Young People's Secure Estate (CYPSE) in England: study protocol.

INTRODUCTION: Young people in contact with the youth justice system are more likely to present with complex ongoing needs than young people in the general population. To address this, the Framework for Integrated Care (SECURE STAIRS) is being implemented in the Children and Young People's Secure Estate: a 'whole systems' approach to support secure settings to develop trauma-informed and relationally based environments, supporting staff to provide consistent, therapeutic care. This paper aims to present the protocol for a national cohort study examining the impact and implementation of this cultural transformation programme. METHODS AND ANALYSIS: A mixed-methods realist evaluation will be conducted. Data collection will take place between August 2018 and December 2020. Eighteen sites will collect routine service activity data and questionnaires completed by young people, parents/guardians and staff. Semi-structured interviews and non-participant observations will be conducted across five qualitative focus sites with young people and staff. An economic evaluation will examine value for money. The results will be triangulated at the analysis stage to gain an in-depth understanding of experiences. ETHICS AND DISSEMINATION: Ethical approval was granted by the Health Research Authority, Her Majesty's Prison and Probation Service and UCL Ethics Committee. Findings will be disseminated via project reports, site feedback, peer-reviewed journal publications and conference presentations.