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“You Shouldn’t Look at Us Strangely”: An Exploratory Study on Personal Perspectives on Quality of Life of Adolescents with Emotional and Behavioral Disorders in Residential Youth Care

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Abstract

Adolescents with Emotional and Behavioral Disorders (EBD) have complex needs and experience challenges in various developmental areas and life domains. The majority of current studies regarding Quality of Life (QOL) among adolescents often adopt a quantitative design to assess health-related aspects of QOL. While considerable progress has been made in acknowledging the rights of children and adolescents to express their views on life and well-being, there remains a lack of research regarding adolescents with EBD and their personal perspectives on QOL. This qualitative study aims to address this gap. Focus groups (N = 6) were conducted with 25 adolescents aged 13 to 17 years living in a large-scale residential care organization. An expert panel, comprising six experts, was convened to classify the results from the focus groups (i.e., indicators) according to the QOL framework by Schalock and Verdugo (2002). An in-depth overview of the wide variety of aspects adolescents value with regard to their QOL was presented. The findings highlighted the importance of adopting a broad and holistic approach, instead of a traditional health-related and deficit-oriented one, when aiming to enhance the QOL of adolescents with EBD. Furthermore, several benefits for research and clinical practice relating to adolescents’ personal perspectives on QOL were discussed.

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Acknowledgements

This paper is based on a project that was financed by Diensten- en Begeleidingscentrum Openluchtopvoeding [Services and Support Center Open Air Education]. The authors would like to thank all adolescents for their participation in this study and (members of) the organization for their commitment.

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  1. Faculty of Education, Health and Social Work, Department of Orthopedagogy – Special Education; Centre of Expertise E-QUAL, University College Ghent, Valentin Vaerwyckweg 1, 9000, Ghent, Belgium

    Chris Swerts, Jessica De Maeyer, Marco Lombardi & Claudia Claes

  2. Faculty of Pedagogy, Università Cattolica del Sacro Cuore, Via Trieste 17, 25121, Brescia, Italy

    Marco Lombardi

  3. vzw Diensten- en Begeleidingscentrum Openluchtopvoeding, Miksebaan 264, 2930, Brasschaat, Belgium

    Inge Waterschoot

  4. Department of Special Needs Education, Ghent University, Henri Dunantlaan 2, 9000, Ghent, Belgium

    Wouter Vanderplasschen & Claudia Claes

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Correspondence to Chris Swerts.

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The researchers (C.S., J.D.M., M.L., W.V., and C.C.) declare that there is no conflict of interest. The fourth author (I.W.) is staff member of the Services and Support Center Open Air Education. She has been involved in the study design, the practical organization of the focus groups, and the discussion of the findings, that first had been made anonymous. She did not have any role in the data collection and the data analysis, as these were carried out independently by the researchers.

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Swerts, C., De Maeyer, J., Lombardi, M. et al. “You Shouldn’t Look at Us Strangely”: An Exploratory Study on Personal Perspectives on Quality of Life of Adolescents with Emotional and Behavioral Disorders in Residential Youth Care. Applied Research Quality Life 14, 867–889 (2019). https://doi.org/10.1007/s11482-017-9534-7

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