Co-Production in Youth Mental Health

• Co-Production with Young People in Mental Health w/ Gemma Knowles

Types of Involvement (broadly)

• Engagement includes talks, events, and exhibitions
• Consultations can be advisory groups
• Involvement can be co-interviewers
• Coproduction means equal partners in everything

The Problem

• There are internalising score trajectories, by sex

• Externalising, by sex is also an issue

• The prevalence of anxiety (GAD-7) also differs by sex

• Boys and girls in Key Stage 3 (ages 11-14) have different mental health experiences

• Mental health disorders are not a new problem

• There is limited understanding of the causes

• Lack of effective solutions

• Increased prevalence, severity, and burden of anxiety, trauma-related and stress-related disorders in women compared with men is well documented

• Depression is more common among women than among men

• The problem is getting worse

• Mental disorder in 16-24 year olds is on the rise

• Persistent feelings of sadness or hopelessness are high among young people

• Major depressive episodes in youth are increasing

• Mental health problems may not be inevitable

International Comparisons- Challenges

• Measurement of mental health, which may not be comparable across genders and contexts
• Cross sectional data may emerge and evolve in different ways through development

London & Tokyo

• The Tokyo Teen Cohort study (TTC) involves 3171 participants at T1 and 2813 in the analysis

• Resilience, Ethnicity and Adolescent mental Health (REACH) involves 4353 participants at T1 and 4287 in this analysis

• There is a limited understanding of causes, which could be due to:

• Essentialist thinking

• Lack of interdisciplinarity

• Infrequent data collection

• Lack of youth voice

• Sexism, misogyny, and gender inequality are also factors

• State-level structural sexism is related to cumulative exposure risk of disordered eating after a 20-year prospective cohort study

• Biggest safety concerns for London girls last year were domestic violence and sexual harassment

• There is a greater difference in brain structure based on gender in locations with high gender inequality

• In a hypothetical scenario with no sexual violence, the prevalence of adverse mental health outcomes at age 17 years would be lower in both boys and girls

• There can be coproduced funding bids

• Pitch: In a world free of sexism, misogyny, and gender inequality, would gender inequalities in mental health exist?

• Mental health understanding research should focus on anxiety- and trauma-related problems, how they develop, persist, and resolve

• Identify causal mechanisms

• Look at anxiety (depression, psychosis)

• Be Interdisciplinary / international

• Have lived experience involvement

• Run for 5 years, up to £4million

• Understand lived experience (Y1)

• Establish causal link (Y2-3)

• Study multilevel mechanisms (Y3-5)

• Investigate UK-JPN variation (Y4-5)

Work Packages

• Should be coproduced with and/or meaningfully involving Youth Partners (YP)
• WP1 - Understanding & measuring experience
• WP2 - Sexism indices and mechanisms, cohorts
• WP3 - Real-time unfolding, biosocial interplay

The (broad) Plan

• Young people & schools should be thoroughly involved in leading, designing and delivering every step of the research
• ~3000 kids, ~10 schools should complete questionnaires for 3-4 years on an annual basis
• Focus groups and interviews of ~50 kids
• There should be development of new measures (~60 kids)
• 30-day tracking of ~270 girls should occur x3-5 times

Coproduction & Culture

• Establish a Youth Leadership Team
• Have Community Coproduction Teams
• Involve Young Co-researchers
• Invite Youth Advisory Teams
• Run School-based workshops (two-way)

Equal Youth Partnerships

• Questions & hypotheses
• Funding applications
• Designing measures
• Analysing and interpreting data

Practical Considerations

• Study designs & protocols
• Priorities for data collection
• There should be a Kick off meeting in London
• Need staff recruitment
• Include staff training
• Require data collection
• Accountability methods
• Structures, systems
• Ensure Honesty and transparency
• Earn Trust, reciprocity
• Decide Which voices to amplify
• Ensure its Inclusivity
• Avoid Perpetuate inequalities
• Define ‘lived experience effectively

Materials for Research

• Training & involving other young people
• Have Dissemination plans
• Discuss Impact
• Conduct Leadership meetings

Practical Session - Design of Materials Suitable for Research with Children and Young People w/ GOSH Young People's Advisory Group

• Study Notes: Conducting Research in Child and Adolescent Mental Health by Dr. Sarah Rowe

Aims

• Understand research methods and young people's involvement in research
• Learn about ethical considerations, GDPR, consent, and safeguarding
• Develop and review information sheets and consent forms for young participants

Research Methods Involving Children

• Self-report: Questionnaires, interviews
• Observation: Behavioral experiments, activities
• Record analysis: Social care, school records
• Third-party reports: Parents, carers, teachers

Models of Involvement

• Young people define research priorities (e.g., McPin, 2018)
• They review research materials to ensure accessibility
• They participate in designing interventions
• Act as research participants (e.g., school-based studies)
• Help with research dissemination

Ethical Considerations & GDPR

• Definition of a child: Under 18 (ICO & UN Convention on the Rights of the Child)
• Consent & Assent:
  • Over 16: Can give their own consent
  • Under 16: Require parental consent but may provide assent
  • Gillick competence: Under-16s may consent if they understand the research risks
• GDPR Requirements:
  • Consent given should be freely given, specific, informed, and unambiguous
  • Should be Opt-in required—failure to opt-out is not valid consent

Good Practices for Assent/Consent

• Even competent young people should involve family in decision-making
• Information must be age-appropriate and easy to understand
• Use different formats for different age groups

Confidentiality & Safeguarding

• Confidentiality must be maintained unless there is a safeguarding concern
• Researchers must have a safeguarding protocol in place before starting
• Safeguarding involves:
  • Notifying the young person before disclosure
  • Referring them to school counselors or GPs
  • Contacting parents/carers when necessary
  • Keeping thorough records of all safeguarding actions

Practical Considerations

• Information sheets should be clear, transparent, and age-appropriate
• Forms needed:
  • Assent form (under 16s)
  • Consent form (16+)
  • Parental information sheet & consent form (for under-16 participants)
• Safeguarding protocols must be clearly documented

Measurement in Research

• Use validated questionnaires for young people

• Consider multiple informants (child, parent, teacher)

• Use Common tools

• Strengths and Difficulties Questionnaire (SDQ) should be used

• General Health Questionnaire (GHQ-12) should be used

Top 10 Research Priorities in Child & Adolescent Mental Health (McPin, 2018)

1. Best methods for early mental health screening in young people
2. Increasing youth involvement in treatment decisions
3. Improving collaboration between CAMHS, schools, and social care
4. Effective early intervention strategies for mental resilience
5. Support for youth on CAMHS waiting lists
6. Helping parents detect early signs of mental health decline
7. Interventions for suicidal young people
8. Impact of family relationships and parenting styles on mental health outcomes
9. Best self-help and self-management resources for youth
10. Effective training for school staff to detect early signs of mental health difficulties

References

• GDPR & Data Protection: UCL Data Protection Guidance
• Ethics: MRC Guide on Medical Research with Children
• Measurement: Systematic Review of Mental Health Outcome Measures
• These notes summarize key points for research involving children and adolescents in mental health studies