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Journal of Intellectual & Developmental Disability Volume 47, 2022 - Issue 2
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“I hope I’ll outlive him”: A qualitative study of parents’ concerns about being outlived by their child with profound intellectual and multiple disabilities

Kasper Kruithofa Department of Ethics, Law & Humanities, Amsterdam UMC, University of Amsterdam, Amsterdam, the NetherlandsCorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0001-9528-2124View further author information
ORCID Icon,
Erik Olsmanb Department of Mediating the Good Life, Section of Spiritual Care & Chaplaincy Studies, Protestant Theological University, GroningenView further author information
,
Appolonia Nieuwenhuijsea Department of Ethics, Law & Humanities, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands;c Day Care Center for People with PIMD, Omega, Amsterdam, the NetherlandsView further author information
&
Dick Willemsa Department of Ethics, Law & Humanities, Amsterdam UMC, University of Amsterdam, Amsterdam, the NetherlandsView further author information
Pages 107-117 | Published online: 02 Jun 2021

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Read on this site (7)

Erik Olsman, Appolonia M. Nieuwenhuijse & Dick L. Willems. (2023) ‘My son has lost his dignity’: dignity of persons with profound intellectual and multiple disabilities. Disability & Society 38:10, pages 1895-1912.
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M. C. den Boer, M. A. C. Voermans & P. J. C. M. Embregts. (2023) Vulnerable but stronger together: An interpretative phenomenological analysis of the experiences of mothers of young adults with profound intellectual and multiple disabilities during the COVID-19 pandemic. Journal of Intellectual & Developmental Disability 48:2, pages 215-223.
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Liesbeth Geuze, Anne Goossensen & Samuel Schrevel. (2023) “Continuously struggling for balance”: The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities. Journal of Intellectual & Developmental Disability 48:2, pages 161-171.
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Siméon T. A. Lahaije, Jorien Luijkx, Aly Waninge & Annette A. J. van der Putten. (2023) Support needs of families with a child with profound intellectual and multiple disabilities. International Journal of Developmental Disabilities 0:0, pages 1-14.
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Liesbeth Geuze & Anne Goossensen. (2023) Caring for children with profound intellectual and multiple disabilities: images and metaphors expressed by Dutch parents. Disability & Society 0:0, pages 1-19.
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Devender R. Banda, Stacy L. Carter & The Nguyen. (2022) A qualitative study of financial concerns of mothers’ of adults with intellectual and developmental disabilities. International Journal of Developmental Disabilities 0:0, pages 1-8.
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Katharine Slade, Rachel L. Shaw, Michael Larkin & Gemma Heath. Care-giving experiences of parents of young people with PMLD and complex healthcare needs in the transition to adulthood years: a qualitative poetic synthesis. Arts & Health 0:0, pages 1-18.
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Articles from other publishers (1)

Dagmar Sedláčková, Jiří Kantor, Ivona Dömischová & Lucia Kantorová. (2022) Experiences of mothers of children with profound intellectual and multiple disabilities in the Czech Republic. British Journal of Learning Disabilities 51:1, pages 3-12.
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