IDEAS home Printed from https://ideas.repec.org/a/gam/jdisab/v5y2025i2p39-d1637171.html
   My bibliography  Save this article

“If I Died Tomorrow, I’d Die Knowing That My Son Is Safe, Loved by the People in Here, Well Cared for, and Happy”: Exploring Maternal Perspectives on Community Living for Their Adult Children with Intellectual and Developmental Disabilities

Author

Listed:
  • Margherita Cameranesi

    (Department of Psychology, Faculty of Science, Saint Mary’s University, Halifax, NS B3H 3C3, Canada)

  • Maria Baranowski

    (Department of Community Health Sciences, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB R3T 2N2, Canada)

  • Lindsay McCombe

    (St.Amant, Winnipeg, MB R2M 3Z9, Canada)

  • Kayla Kostal

    (Department of Community Health Sciences, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB R3T 2N2, Canada)

  • Javier Mignone

    (Department of Community Health Sciences, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB R3T 2N2, Canada)

  • Shahin Shooshtari

    (Department of Community Health Sciences, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB R3T 2N2, Canada)

Abstract

There is abundant evidence that, following community transition or deinstitutionalization, persons with intellectual and developmental disabilities experience improvements in quality of life and well-being. However, very little research in this area has been conducted in the Canadian context. In this qualitative study, individual in-depth interviewing was used to explore the perspectives of eight Canadian mothers of adults with intellectual and developmental disabilities regarding their children’s residences and access to services after community transition. Within an interpretive description framework, narrative data collected during semi-structured interviews with participating mothers were analyzed using thematic analysis. Three main themes portraying a combination of positive and negative maternal perspectives emerged from the data: (1) quality of care, (2) quality of life, and (3) health status and behavior. The study findings bring attention to the importance of offering individualized community living options that are person- and family-centered to all persons with intellectual and developmental disabilities.

Suggested Citation

  • Margherita Cameranesi & Maria Baranowski & Lindsay McCombe & Kayla Kostal & Javier Mignone & Shahin Shooshtari, 2025. "“If I Died Tomorrow, I’d Die Knowing That My Son Is Safe, Loved by the People in Here, Well Cared for, and Happy”: Exploring Maternal Perspectives on Community Living for Their Adult Children with Int," Disabilities, MDPI, vol. 5(2), pages 1-15, April.
    • Handle: RePEc:gam:jdisab:v:5:y:2025:i:2:p:39-:d:1637171
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/2673-7272/5/2/39/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/2673-7272/5/2/39/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Schalock, Robert L. & Bonham, Gordon S. & Verdugo, Miguel A., 2008. "The conceptualization and measurement of quality of life: Implications for program planning and evaluation in the field of intellectual disabilities," Evaluation and Program Planning, Elsevier, vol. 31(2), pages 181-190, May.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Nele Van Hecke & Claudia Claes & Wouter Vanderplasschen & Jessica De Maeyer & Nico De Witte & Stijn Vandevelde, 2018. "Conceptualisation and Measurement of Quality of Life Based on Schalock and Verdugo’s Model: A Cross-Disciplinary Review of the Literature," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 137(1), pages 335-351, May.
    2. Pedro Gerber Machado & Arnaldo Walter & Michelle Cristina Picoli & Cristina Gerber João, 2017. "Potential impacts on local quality of life due to sugarcane expansion: a case study based on panel data analysis," Environment, Development and Sustainability: A Multidisciplinary Approach to the Theory and Practice of Sustainable Development, Springer, vol. 19(5), pages 2069-2092, October.
    3. Gómez, Laura E. & Verdugo, Miguel Ángel & Arias, Benito & Navas, Patricia & Schalock, Robert L., 2013. "The development and use of Provider Profiles at the organizational and systems level," Evaluation and Program Planning, Elsevier, vol. 40(C), pages 17-26.
    4. Lore Van Damme & Wouter Vanderplasschen & Clare-Ann Fortune & Stijn Vandevelde & Olivier F. Colins, 2021. "Determinants of Female Adolescents’ Quality of Life Before, during and after Detention: a Four-Wave Follow-Up Study Examining a Theory of Individual Quality of Life," Applied Research in Quality of Life, Springer;International Society for Quality-of-Life Studies, vol. 16(1), pages 401-434, February.
    5. Julie Poláčková & Andrea Jindrová, 2011. "Assessment of subjective aspects of the quality of life in the various regions of the Czech Republic," Acta Universitatis Agriculturae et Silviculturae Mendelianae Brunensis, Mendel University Press, vol. 59(7), pages 267-274.
    6. Cristina Simões & Sofia Santos, 2017. "The Impact of Personal and Environmental Characteristics on Quality of Life of People with Intellectual Disability," Applied Research in Quality of Life, Springer;International Society for Quality-of-Life Studies, vol. 12(2), pages 389-408, June.
    7. Schalock, Robert L. & Verdugo, Miguel Angel & Gomez, Laura E., 2011. "Evidence-based practices in the field of intellectual and developmental disabilities: An international consensus approach," Evaluation and Program Planning, Elsevier, vol. 34(3), pages 273-282, August.
    8. María Fernández & Miguel Ángel Verdugo & Laura E. Gómez & Virginia Aguayo & Benito Arias, 2018. "Core Indicators to Assess Quality of Life in Population with Brain Injury," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 137(2), pages 813-828, June.
    9. Schalock, Robert L. & Verdugo, Miguel Angel & van Loon, Jos, 2018. "Understanding organization transformation in evaluation and program planning," Evaluation and Program Planning, Elsevier, vol. 67(C), pages 53-60.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jdisab:v:5:y:2025:i:2:p:39-:d:1637171. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.