The Lived Experience of Empowerment and Overprotection on (In)dependent Living of Persons with Intellectual Disability

Abner Francis Barbara; Anne-Marie Callus

doi:10.16993/sjdr.1163

The Lived Experience of Empowerment and Overprotection on (In)dependent Living of Persons with Intellectual Disability

Scandinavian Journal of Disability Research

Volume 27 (2025): Issue 1

By: Abner Francis Barbara and Anne-Marie Callus

Open Access

|Aug 2025

Abstract

This study investigated how persons with intellectual disabilities in Malta experience either empowerment or overprotection in their daily lives. One-to-one interviews were conducted with four adults with intellectual disabilities and their mothers. Data were analysed using interpretative phenomenological analysis. Two persons with intellectual disability were found to be empowered, while the other two were found to be overprotected. Empowerment fosters opportunities for personal and social development, more possibilities for relationships and more personal time and privacy – all of which support independent living. Overproctetion reinforces the lack of independent living skills, social isolation and lack of personal time and space. Support services are needed to break the cycle of overprotection. These services should consider and support the needs of individuals with intellectual disabilities and their families.

References

Alesi, Marianna, and Annamaria Pepi. 2017. “Physical Activity Engagement in Young People with Down Syndrome: Investigating Parental Beliefs.” Journal of Applied Research in Intellectual Disabilities 30(1): 71–83. DOI: 10.1111/jar.12220
Open DOI Search in Google Scholar Back to article
Azzopardi Lane, Claire, Paul Cambridge, and Glynis Murphy. 2019. “Muted Voices: The Unexplored Sexuality of Young Persons With Learning Disability in Malta.” British Journal of Learning Disabilities, 47(3): 156–64. DOI: 10.1111/bld.12266
Open DOI Search in Google Scholar Back to article
Barbara, Abner F. 2023. “Protection or Overprotection? The Lived Experience of Persons With Intellectual Disabilities and Their Primary Caregivers in Malta.” Unpublished Masters Dissertation, University of Malta.
Search in Google Scholar Back to article
Black, Rhonda S., and Rebecca R. Kammes. 2019. “Restrictions, Power, Companionship, And Intimacy: A Metasynthesis of People With Intellectual Disability Speaking About Sex and Relationships.” Intellectual and Developmental Disabilities 57(3): 212–33. DOI: 10.1352/1934-9556-57.3.212
Open DOI Search in Google Scholar Back to article
Buhagiar, Sarah, and Claire Azzopardi Lane. 2022. “Freedom From Financial Abuse: Persons With Intellectual Disability Discuss Protective Strategies Aimed at Empowerment and Supported Decision-Making.” Disability & Society 37(3): 361–85. DOI: 10.1080/09687599.2020.1833312
Open DOI Search in Google Scholar Back to article
Callus, Anne-Marie, Isabel Bonello, and Brian Micallef. 2022. “Advocacy and Self-Advocacy in Malta: Reflections on the Lives of Maltese People With Intellectual Disability From the 1950s to the Present Day.” British Journal of Learning Disabilities 50(2): 156–65. DOI: 10.1111/bld.12438
Open DOI Search in Google Scholar Back to article
Callus, Anne-Marie, Isabel Bonello, Charmaine Mifsud, and Rosanne Fenech. 2019. “Overprotection in the Lives of People with Intellectual Disability in Malta: Knowing What Is Control and What Is Enabling Support.” Disability & Society 34(3): 345–67. DOI: 10.1080/09687599.2018.1547186
Open DOI Search in Google Scholar Back to article
Carter, Erik W., Elizabeth E. Biggs, and Carly L. Blustein. 2016. “Relationships Matter: Addressing Stigma among Children and Youth with Intellectual Disabilities and Their Peers.” In Intellectual Disability and Stigma: Stepping out from the Margins, 149–64. London: Palgrave Macmillan UK. DOI: 10.1057/978-1-137-52499-7_10
Open DOI Search in Google Scholar Back to article
Fulford, Casey, and Virginie Cobigo. 2018. “Friendships and Intimate Relationships among People with Intellectual Disabilities: A Thematic Synthesis.” Journal of Applied Research in Intellectual Disabilities 31(1): e18–e35. DOI: 10.1111/jar.12312
Open DOI Search in Google Scholar Back to article
Garolera, Gemma, Maria Díaz, and Judit Noell. 2021. “Friendship Barriers and Supports: Thoughts of Young People with Intellectual Disabilities.” Journal of Youth Studies 24(6): 815–33. DOI: 10.1080/13676261.2020.1772464
Open DOI Search in Google Scholar Back to article
Garrels, Veerle, and Hanne M. H. Sigstad. 2021. “Employment for Persons with Intellectual Disability in the Nordic Countries: A Scoping Review.” Journal of Applied Research in Intellectual Disabilities 34(4): 993–1007. DOI: 10.1111/jar.12880
Open DOI Search in Google Scholar Back to article
Gilmore, Linda, and Monica Cuskelly. 2014. “Vulnerability to Loneliness in People with Intellectual Disability: An Explanatory Model: Vulnerability to Loneliness.” Journal of Policy and Practice in Intellectual Disabilities 11(3): 192–99. DOI: 10.1111/jppi.12089
Open DOI Search in Google Scholar Back to article
Hutchinson, Gunn S., and Johans T. Sandvin. 2019. “Emergent Voices. Exploring the Lived Experience of Seniors with Intellectual Disability.” European Journal of Social Work 22(5): 738–48. DOI: 10.1080/13691457.2018.1540971
Open DOI Search in Google Scholar Back to article
Immordino-Yang, Mary Helen, Lina Darling-Hammond, and Christina Krone. 2019. “Nurturing Nature: How Brain Development Is Inherently Social and Emotional and What This Means for Education.” Educational Psychologist 54(3): 185–204. DOI: 10.1080/00461520.2019.1633924
Open DOI Search in Google Scholar Back to article
Jacinto, Miguel, Anabela Suosa Vitorino, Diogo Palmeira, Raul Antunes, Jose Pedro Ferreira, Teresa Bento, and Rui Matos. 2021. “Perceived Barriers of Physical Activity Participation in Individuals with Intellectual Disability—A Systematic Review.” Healthcare 9(11): 1521. DOI: 10.3390/healthcare9111521
Open DOI Search in Google Scholar Back to article
Klein, Maike, and Rebecca J. Milner. 2019. “The Use of Body-Mapping in Interpretative Phenomenological Analyses: A Methodological Discussion.” International Journal of Social Research Methodology 22(5): 533–43. DOI: 10.1080/13645579.2019.1593378
Open DOI Search in Google Scholar Back to article
McKenzie, Judith, and Roy McConkey. 2016. “Caring for Adults with Intellectual Disability: The Perspectives of Family Carers in South Africa.” Journal of Applied Research in Intellectual Disabilities 29(6): 531–41. DOI: 10.1111/jar.12209
Open DOI Search in Google Scholar Back to article
Merrells, Jessica, Angus Buchanan, and Rebecca Waters. 2018. “The Experience of Social Inclusion for People with Intellectual Disability within Community Recreational Programs: A Systematic Review.” Journal of Intellectual & Developmental Disability 43(4): 381–91. DOI: 10.3109/13668250.2017.1283684
Open DOI Search in Google Scholar Back to article
Merrells, Jessica, Angus Buchanan, and Rebecca Waters. 2019. “‘We Feel Left Out’: Experiences of Social Inclusion from the Perspective of Young Adults with Intellectual Disability.” Journal of Intellectual & Developmental Disability 44(1): 13–22. DOI: 10.3109/13668250.2017.1310822
Open DOI Search in Google Scholar Back to article
Mill, Aviva, Rachel Mayes, and David McConnell. 2010. “Negotiating Autonomy within the Family: The Experiences of Young Adults with Intellectual Disabilities: Young Adults Negotiating Autonomy.” British Journal of Learning Disabilities 38(3): 194–200. DOI: 10.1111/j.1468-3156.2009.00575.x
Open DOI Search in Google Scholar Back to article
Mitter, Natasha, Afia Ali, and Katrina Scior. 2019. “Stigma Experienced by Families of Individuals with Intellectual Disabilities and Autism: A Systematic Review.” Research in Developmental Disabilities 89: 10–21. DOI: 10.1016/j.ridd.2019.03.001
Open DOI Search in Google Scholar Back to article
Morris, Jenny. 2004. “Independent Living and Community Care: A Disempowering Framework.” Disability & Society 19(5): 427–42. DOI: 10.1080/0968759042000235280
Open DOI Search in Google Scholar Back to article
Neuman, Ran, and Shunit Reiter. 2017. “Couple Relationships as Perceived by People with Intellectual Disability – Implications for Quality of Life and Self-Concept.” International Journal of Developmental Disabilities 63(3): 138–47. DOI: 10.1080/20473869.2016.1173422
Open DOI Search in Google Scholar Back to article
Pownall, Jaycee, Sarah Wilson, and Andrew Jahoda. 2020. “Health Knowledge and the Impact of Social Exclusion on Young People with Intellectual Disabilities.” Journal of Applied Research in Intellectual Disabilities 33(1): 29–38. DOI: 10.1111/jar.12331
Open DOI Search in Google Scholar Back to article
Ryan, Joseph B., Kristina N. Randall, Erica Walters, and Virginia Morash-MacNeil. 2019. “Employment and independent living outcomes of a mixed model post-secondary education program for young adults with intellectual disabilities.” Journal of Vocational Rehabilitation 50 (1): 61–72. DOI: 10.3233/JVR-180988
Open DOI Search in Google Scholar Back to article
Sanders, Karen Y. 2006. “Overprotection and Lowered Expectations of Persons with Disabilities: The Unforeseen Consequences.” Work 27(2): 181–8. DOI: 10.3233/WOR-2006-00561
Open DOI Search in Google Scholar Back to article
Schleien, Stuart J., Kimberly D. Miller, Ginger Walton, and Scott Pruett. 2014. “Parent Perspectives of Barriers to Child Participation in Recreational Activities.” Therapeutic Recreation Journal 48(1): 61.
Search in Google Scholar Back to article
Shinnick, Kelsey I. 2014. “Examining the Relationship Between Parental Overprotection, Use of Assistive Technology, and Independence with Routines among Children with Physical Disabilities.” The University of Mississippi Bachelor of Arts Dissertation. https://aquila.usm.edu/cgi/viewcontent.cgi?article=1246&context=honors_theses#:~:text=parents%20of%20children%20with%20physical,are%20more%20likely%20to%20utilize
Search in Google Scholar Back to article
Shogren, Karrie A., Michael L. Wehmeyer, Heather Lassmann, and Anjali J. Forber-Pratt. 2017. “Supported Decision Making: A Synthesis of the Literature across Intellectual Disability, Mental Health, and Aging.” Education and Training in Autism and Developmental Disabilities 52 (2): 144–157.
Search in Google Scholar Back to article
Shogren, Karrie A., Michael L. Wehmeyer, Susan B. Palmer, Graham G. Rifenbark, and Todd D. Little. 2015. “Relationships between Self-Determination and Postschool Outcomes for Youth with Disabilities.” Journal of Special Education 48(4): 256–67. DOI: 10.1177/0022466913489733
Open DOI Search in Google Scholar Back to article
Smith, Jonathan A., Peter Flowers, and Michael Larkin. 2022. Interpretative Phenomenological Analysis, 2nd edition. SAGE Publications.
Search in Google Scholar Back to article
Thompson, Kyle. 2023. “Qualitative Methods Show That Surveys Misrepresent ‘Ought Implies Can’ Judgments.” Philosophical Psychology 36(1): 29–57. DOI: 10.1080/09515089.2022.2036714
Open DOI Search in Google Scholar Back to article
Tilly, Liz. 2019. “Experiences of Loneliness: People with a Learning Disability and Barriers to Community Inclusion.” In Emotions and Loneliness in a Networked Society, 201–21. Cham: Springer International Publishing. DOI: 10.1007/978-3-030-24882-6_10
Open DOI Search in Google Scholar Back to article
UNCRPD. 2006. “Article 30 – Participation in Cultural Life, Recreation, Leisure and Sport, 2006.” https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-30-participation-in-cultural-life-recreation-leisure-and-sport.html
Search in Google Scholar Back to article
van der Meulen, Anne Pier S., Maaike Hermsen, and Petri J. C. M. Embregts. 2018. “Restraints in Daily Care for People with Moderate Intellectual Disabilities.” Nursing Ethics 25(1): 54–68. DOI: 10.1177/0969733016638141
Open DOI Search in Google Scholar Back to article
Vella, Raphael, and Karsten Xuereb. 2021. “Intersectional Dialogues around Cultural Policy in Malta.” University of Malta. Faculty of Education.
Search in Google Scholar Back to article
Weng, Yurong. 2023. “Parenting Impacts Highly Sensitive Children and Adolescents’ Mental Well-Being: An Intergenerational Perspective.” Journal of Education, Humanities and Social Sciences 8: 695–702. DOI: 10.54097/ehss.v8i.4333
Open DOI Search in Google Scholar Back to article
Williams, Val, Lisa Ponting, Kerrie Ford, Philippa Rudge, and Skills for Support Team. 2010. “Skills for Support: Personal Assistants and People with Learning Disabilities.” British Journal of Learning Disabilities 38(1): 59–67. DOI: 10.1111/j.1468-3156.2009.00570.x
Open DOI Search in Google Scholar Back to article
Witsø, Aud Elisabeth, and Brit Hauger. 2020. “‘It’s Our Everyday Life’ – The Perspectives of Persons with Intellectual Disabilities in Norway.” Journal of Intellectual Disabilities 24(2): 143–57. DOI: 10.1177/1744629518774174
Open DOI Search in Google Scholar Back to article
Zames Fleischer, Doris, and Frieda Zames. 2011. “Disability and the media in the 21st century.” In Human Rights and Media, 181–218. Emerald Group Publishing Limited. DOI: 10.1108/S0275-7982(2011)0000006012
Open DOI Search in Google Scholar Back to article

Articles in this issue

DOI: https://doi.org/10.16993/sjdr.1163 | Journal eISSN: 1745-3011

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Language: English

Page range: 431 - 444

Submitted on: Jun 14, 2024

Accepted on: Aug 2, 2025

Published on: Aug 22, 2025

Published by: Stockholm University Press

In partnership with: Paradigm Publishing Services

Keywords:

overprotection,

independent living,

IPA,

intellectual disability

© 2025 Abner Francis Barbara, Anne-Marie Callus, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.

Volume 27 (2025): Issue 1