Experiences of discrimination and positive treatment in adolescents and young adults with mental health problems: Development and validation of a measurement (ADAPT-MH)

Description

Background

Mental health challenges among young people have increased significantly in recent years. Despite growing openness toward mental health issues, many young people affected continue to experience discrimination—within their families, among friends, or in educational settings. At the same time, they also report supportive reactions that can help alleviate such challenges. However, systematic data on these experiences are currently lacking, particularly due to the lack of suitable, validated, and up-to-date survey instruments.

Objectives

This project addresses this research gap by collaborating with affected young people to develop and validate a questionnaire designed to capture experiences of discrimination and support.

The innovation lies in three aspects:

1. Participation: Those affected are actively involved in key phases of the instrument’s development.
2. Differentiated perspective: For the first time, the instrument captures both discriminatory and supportive experiences, thereby enabling a comprehensive view.
3. Timeliness: New and previously underrepresented contexts (e.g., digital media) as well as current forms of discrimination and support—such as more subtle, well-intentioned but negatively perceived patronizing behavior—are considered.

The newly developed instrument enables us to capture the experiences of affected young people in a nuanced way and, through its application, to create a robust data foundation for future research and practice. At the same time, even during its development, the project is already providing important insights into the contexts in which young people today experience both positive and negative reactions.

Methods

The questionnaire will be developed in several steps:

1. Systematic literature review and creation of an initial item pool (approx. 100–150 items)
2. Participatory workshops with affected individuals to eliminate redundant or irrelevant items and to add new content (target: approx. 50–80 items)
3. Delphi process with experts, including affected individuals, for further refinement (target: 30–50 items)
4. Cognitive debriefing and pretest with young people for optimization;
5. Validation study (n = 600) in two language regions (German-speaking Switzerland, French-speaking Switzerland) and two age groups (15–18; 19–25 years) as well as final adaptation of the questionnaire based on psychometric criteria.

The systematic and participatory approach ensures both high scientific quality and good applicability of the questionnaire in research and practice.

Expected results

The newly developed instrument will enable the capture of the experiences of affected young people in a nuanced way. It is anticipated that digital media—which have not yet been considered in existing instruments measuring experiences of discrimination—will be identified by young people affected as key contexts for both discrimination and support.

The instrument developed as part of the project will be made freely available and can be used in research and practice. Data from future studies using this questionnaire will enable the development of targeted, evidence-based measures to reduce discrimination and strengthen supportive responses.

Furthermore, the project will yield new insights into currently relevant contexts that deserve special attention in research and practice. 

Key data