EXPERIENCES AND SUPPORT NEEDS OF FAMILIES RAISING ADOLESCENTS WITH PROFOUND INTELLECTUAL AND MULTIPLE DISABILITIES DURING THE TRANSITION TO ADULTHOOD
DOI:
https://doi.org/10.18357/ijcyfs153202422164Keywords:
adolescence, adulthood, transition, profound intellectual and multiple disabilities, intellectual disability, family quality of lifeAbstract
There is a lack of knowledge about families raising adolescents with profound intellectual and multiple disabilities (PIMD) during the transition to adulthood. This study explores the experiences and support needs of these families throughout this transition. A qualitative design was used, consisting of semi-structured interviews with mothers (N = 10) of children aged 10 to 23 with PIMD. The interviews were analyzed via a coding scheme based on a theoretical framework for family quality of life (FQOL) and stages of adolescence. Positive and negative experiences and distinct support needs were examined in the FQOL domains and stages of adolescence. These families have a unique need for information on development and participation opportunities for children with PIMD, and how to support them. Other needs and experiences expressed, such as dealing with hormonal changes and with being transferred from paediatric to adult care services, were consistent with other families with support needs. The obtained knowledge can be used to improve support for families with an adolescent child with PIMD. In addition, future research in this area is recommended and should be grounded in a family-centred, strengths-based, longitudinal approach.
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Fahy, P. J. (2001). Addressing some common problems in transcript analysis. The International Review of Research in Open and Distributed Learning, 1(2), Article 321. https://doi.org/10.19173/irrodl.v1i2.321
Gauthier-Boudreault, C., Couture, M., & Gallagher, F. (2017). How to facilitate transition to adulthood? Innovative solutions from parents of young adults with profound intellectual disability. JARID: Journal of Intellectual Disability Research, 31(52), 215–223. https://doi.org/10.1111/jar.12394
Grumi, S., Provenzi, L., Gardani, A., Aramini, V., Dargenio, E., Naboni, C., Vacchini, V., Borgatti, R., & Engaging with Families Through On-line Rehabilitation for Children during the Emergency (EnFORCE) Group. (2021). Rehabilitation services lockdown during the COVID-19 emergency: The mental health response of caregivers of children with neurodevelopmental disabilities. Disability and Rehabilitation, 43(1), 27–32. https://doi.org/10.1080/09638288.2020.1842520
Hanzen, G., van Nispen, R. M. A., van der Putten, A. A. J., & Waninge, A. (2017). Participation of adults with visual and severe or profound intellectual disabilities: Definition and operationalization. Research in Developmental Disabilities, 61, 95–107. https://doi.org/10.1016/j.ridd.2016.12.017
Hanzen, G., van Nispen, R. M. A., Vlaskamp, C., Korevaar, E. L., Waninge, A., & van der Putten, A. A. J. (2020). Improving the participation of adults with visual and severe or profound intellectual disabilities: A process evaluation of a new intervention. BMC Health Services Research, 20(1), Article 319. https://doi.org/10.1186/s12913-020-05161-1
Hanzen, G., Waninge, A., van Nispen, R. M. A., Vlaskamp, C., Post, W. J., & van der Putten, A. A. J. (2021). Intervention effects on professionals’ attitudes towards the participation of adults with visual and severe or profound intellectual disabilities. JARID: Journal of Intellectual Disability Research, 34(1), 129–139. https://doi.org/10.1111/jar.12792
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2024-10-30
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Luitwieler, N., Luijkx , J., van der Schans, C. P. ., van der Putten, A. A. J., & Waninge, A. (2024). EXPERIENCES AND SUPPORT NEEDS OF FAMILIES RAISING ADOLESCENTS WITH PROFOUND INTELLECTUAL AND MULTIPLE DISABILITIES DURING THE TRANSITION TO ADULTHOOD. International Journal of Child, Youth and Family Studies, 15(3), 69–100. https://doi.org/10.18357/ijcyfs153202422164
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