“We Know What We Are Talking about”: Experiences of Young People with a Chronic Condition Involved in a Participatory Youth Panel and Their Perceived Impact

ABSTRACT

There is a growing recognition that research and implementation projects should be carried out “with” or “by” young people with chronic conditions, instead of “about” or “for” them. The current study aimed to explore how young people with chronic conditions experience their involvement in a participatory youth panel. This panel was a structural part of a three-year program addressing the social position of young people with chronic conditions in the Netherlands. It hosted 45 research and implementation projects to improve the social position of young people with chronic conditions in five areas: care, school, work, sport, and personal strength. Output from these projects were, for example, a tool to improve self-management, an evidence-based method to facilitate the transition to adult-care, and a digital platform about performing physical activity with a disability. During the program, six focus groups consisting of four to eleven panel members were conducted. The transcripts were analysed using the principles of thematic analysis. The results show panel members took part in multiple projects and activities, such as assessing project applications, evaluating the progress of projects and organizing a political lobby. They were enthusiastic about their role in the panel. The structural nature of the panel enabled them to achieve personal growth and professionalization of their participation. Consequently, panel members experienced an increasing impact on the program and separate projects, and on national politics. Therefore, it is suggested that a structural form of participation, such as a participatory panel, is suitable to facilitate meaningful participation of young people with chronic conditions.

KEYWORDS:

• Participatory youth panel
• youth
• disability
• inclusion
• empowerment

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The project is funded by Fonds NutsOhra, Amsterdam.

Notes on contributors

Femke van Schelven

Femke van Schelven holds a Bachelor's degree in Health & Society from Wageningen University, and a Master's degree in Youth Studies from the Utrecht University. Currently, she is a researcher and Ph.D. student at Nivel, the Netherlands institute for Health Services Research. Her research focuses on the inclusion and participation of young people with a chronic condition.

Hennie Boeije

Hennie Boeije (Ph.D., sociologist) is coordinator at Nivel of the research programme into people with chronic illness and disability. Within this programme, studies are being done into quality of life, self-management and integrated care, societal participation including employment and care for the elderly. For 15 years, she was an associate professor in qualitative research methods in the social sciences at Utrecht University. Hennie published academic books and numerous papers in the field of qualitative research methodology and health care and related issues.

Maj-Britt Inhulsen

Maj-Britt Inhulsen holds a master's degree in Health Sciences and is specialized in the topic of prevention and public health. She works as a Ph.D. student at the department of Health Sciences at the Vrije Universiteit Amsterdam. Her previous work focused on living and participating with a chronic condition, with a particular focus on youth. Currently, her research focuses on the promotion of sleep behavior in youth.

Jane Sattoe

Jane Sattoe, Ph.D., is a Senior Researcher and Senior Lecturer at Rotterdam University of Applied Sciences in Rotterdam, The Netherlands. Her research is primarily focused on self-management of young people growing up with chronic conditions.

Jany Rademakers

Prof. Jany Rademakers is research department head and member of the management team of NIVEL, the Netherlands institute for Health Services Research. She is also professor Health literacy and patient participation at Maastricht University (CAPHRI). Her research focuses on diversity in health care, more specific on health literacy and patient activation, and in general on patient involvement and empowerment in health care. She is a member of the steering committee and chair of the working group on patient experiences of the Dutch Alliance for Health literacy.