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Original Articles

The Experience of Disability from the Perspective of Parents of Children with Profound Impairment: Is it time for an alternative model of disability?

Pages 825-843 | Published online: 01 Jul 2010

Keep up to date with the latest research on this topic with citation updates for this article.

Read on this site (21)

Simone Wright Stein, Rochelle Alexander, Jotvarinder Mann, Cory Schneider, Sophie Zhang, Barbara E. Gibson, Sharon Gabison, Patrick Jachyra & Donya Mosleh. (2022) Understanding disability in healthcare: exploring the perceptions of parents of young people with autism spectrum disorder. Disability and Rehabilitation 44:19, pages 5623-5630.
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Cezara Crisan & Mohammed Abdel Karim M. AL Hourani. (2022) Gender– Based Parenting of Children with Disabilities in Emirati Families: Exploring the Experiences of Mothers. International Journal of Disability, Development and Education 69:1, pages 170-189.
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Anat Zaidman-Zait, Tova Most, Ricardo Tarrasch & Eliana Haddad. (2018) Mothers’ and fathers’ involvement in intervention programs for deaf and hard of hearing children. Disability and Rehabilitation 40:11, pages 1301-1309.
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Jayne H. Jackson & Elizabeth H. Doell. (2017) Illuminating Parent–Educator Alliances That Enhance Home Reading Practices: A Review of an Intervention Process. Literacy Research and Instruction 56:4, pages 322-341.
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Nancy L. Hutchinson, Angela Pyle, Michelle Villeneuve, Jennifer Dods, C.J. Dalton & Patricia Minnes. (2014) Understanding parent advocacy during the transition to school of children with developmental disabilities: three Canadian cases. Early Years 34:4, pages 348-363.
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John Simon Vorhaus. (2014) Philosophy and profound disability: learning from experience. Disability & Society 29:4, pages 611-623.
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Abu Sadat Nurullah. (2013) “It's Really a Roller Coaster”: Experience of Parenting Children with Developmental Disabilities. Marriage & Family Review 49:5, pages 412-445.
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Tonje Gundersen. (2012) Human dignity at stake – how parents of disabled children experience the welfare system. Scandinavian Journal of Disability Research 14:4, pages 375-390.
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Anisa Daudji, Sarah Eby, Tina Foo, Fahreen Ladak, Cameal Sinclair, Michel D. Landry, Kim Moody & Barbara E. Gibson. (2011) Perceptions of disability among south Asian immigrant mothers of children with disabilities in Canada: implications for rehabilitation service delivery. Disability and Rehabilitation 33:6, pages 511-521.
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Gillian King. (2009) A Relational Goal-Oriented Model of Optimal Service Delivery to Children and Families. Physical & Occupational Therapy In Pediatrics 29:4, pages 384-408.
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Eva Jeppsson Grassman, Anna Whitaker & Annika Taghizadeh Larsson. (2009) Family as failure? The role of informal help-givers to disabled people in Sweden. Scandinavian Journal of Disability Research 11:1, pages 35-49.
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Penny Rhodes, Andrew Nocon, Neil Small & John Wright. (2008) Disability and identity: the challenge of epilepsy. Disability & Society 23:4, pages 385-395.
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Wendy McCracken, Aarthy Ravichandran & Siobhán Laoide-Kemp. (2008) Audiological Certainty in Deaf Children with Learning Disabilities: An Imperative for Inter-agency Working. Deafness & Education International 10:1, pages 4-21.
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Suellen Murray. (2007) FAMILIES’ CARE OF THEIR CHILDREN WITH SEVERE DISABILITIES IN AUSTRALIA. Community, Work & Family 10:2, pages 215-230.
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JohnC. Bricout, ShirleyL. Porterfield, ColleenM. Tracey & MatthewO. Howard. (2004) Linking Models of Disability for Children with Developmental Disabilities. Journal of Social Work in Disability & Rehabilitation 3:4, pages 45-67.
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Articles from other publishers (31)

Kjetil Klette-Bøhler, Dagmara Bossy & Vyda Mamley Hervie. (2022) How Did Children With Disabilities Experience Education and Social Welfare During Covid-19?. Social Inclusion 11:1.
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Yael Hochman, Carmit-Noa Shpigelman, Roni Holler & Shirli Werner. (2022) “Together in a pressure cooker”: Parenting children with disabilities during the COVID-19 lockdown. Disability and Health Journal 15:3, pages 101273.
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Zahraa Jamel Rahahleh, Mizyed AbdelFattah Hyassat, AbdelLatif Khalaf Alramamneh, Obaid Abdalkarim Sabayleh, Ra’ad AbdEl Kareem Al-Awamleh & Azeez Ahmad Alrahamneh. (2021) Participation of Individuals with Disabilities in Political Activities: Voices from Jordan. Pertanika Journal of Social Sciences and Humanities 29:1.
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Dalun Zhang, Jessica M. Walker, Dianey R. Leal, Leena Jo Landmark & Antonis Katsiyannis. (2019) A Call to Society for Supported Decision-Making: Theoretical and Legal Reasoning. Journal of Child and Family Studies 28:7, pages 1803-1814.
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Janet Green, Philip Darbyshire, Anne Adams & Debra Jackson. (2016) Neonatal nurses’ response to a hypothetical premature birth situation: What if it was my baby?. Nursing Ethics 25:7, pages 880-896.
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Hilda Ho, Karen Fergus & Adrienne Perry. (2018) Looking back and moving forward: The experiences of canadian parents raising an adolescent with autism spectrum disorder. Research in Autism Spectrum Disorders 52, pages 12-22.
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Devora Brand, Anat Zaidman-Zait & Tova Most. (2018) Parent Couples’ Coping Resources and Involvement in their Children’s Intervention Program. The Journal of Deaf Studies and Deaf Education 23:3, pages 189-199.
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Navin KikabhaiNavin Kikabhai. 2018. The Rhetoric of Widening Participation in Higher Education and its Impact. The Rhetoric of Widening Participation in Higher Education and its Impact 57 89 .
Victoria Pileggi, Carla Rice, Suzy Stead & Kate Atkinson. 2018. Today’s Youth and Mental Health. Today’s Youth and Mental Health 247 263 .
Janet Green, Philip Darbyshire, Anne Adams & Debra Jackson. (2016) Quality versus quantity: The complexities of quality of life determinations for neonatal nurses. Nursing Ethics 24:7, pages 802-820.
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Daniel Hind, James Parkin, Victoria Whitworth, Saleema Rex, Tracey Young, Lisa Hampson, Jennie Sheehan, Chin Maguire, Hannah Cantrill, Elaine Scott, Heather Epps, Marion Main, Michelle Geary, Heather McMurchie, Lindsey Pallant, Daniel Woods, Jennifer Freeman, Ellen Lee, Michelle Eagle, Tracey Willis, Francesco Muntoni & Peter Baxter. (2017) Aquatic therapy for children with Duchenne muscular dystrophy: a pilot feasibility randomised controlled trial and mixed-methods process evaluation. Health Technology Assessment 21:27, pages 1-120.
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Sara E. Green, Rosalyn Benjamin Darling & Loren Wilbers. 2016. Sociology Looking at Disability: What Did We Know and When Did We Know it. Sociology Looking at Disability: What Did We Know and When Did We Know it 261 285 .
Philip Darbyshire, Maria Mischo-Kelling, Lukas Lochner & Caterina Messerschmidt-Grandi. (2015) ‘Fighting for care’: parents' perspectives of children's palliative care in South Tyrol, Italy. International Journal of Palliative Nursing 21:11, pages 542-547.
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Bonnie O. Richard. (2014) Families, well-being, and inclusion: Rethinking priorities for children with cognitive disabilities in Ladakh, India. Childhood 21:3, pages 308-323.
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Geneviève Piérart, Sylvie Tétreault, Pascale Marier Deschênes & Sophie Blais-Michaud. (2014) Handicap, famille et soutien. Regard croisé Québec-Suisse. Enfances, Familles, Générations:20, pages 128-147.
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Sara E. Green, Rosalyn Benjamin Darling & Loren Wilbers. 2013. Disability and Intersecting Statuses. Disability and Intersecting Statuses 97 168 .
G M Craig. (2013) Psychosocial aspects of feeding children with neurodisability. European Journal of Clinical Nutrition 67:S2, pages S17-S20.
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Herawati I Nowak, Malin Broberg & Mikaela Starke. (2013) Parents’ experience of support in Sweden. Journal of Intellectual Disabilities 17:2, pages 134-144.
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Chan-Young Jeun & Mia Seo. (2013) Grounded Theoretical Approach to the Life of Mothers as a Caretaker of Children with a Severe Disability. The Journal of the Korea Contents Association 13:4, pages 239-249.
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Marta Pietrucin-Materek, Edwin R. van Teijlingen, Simon Barker, Karen Forrest Keenan & Zosia Miedzybrodzka. (2011) Parenting a child with clubfoot: A qualitative study. International Journal of Orthopaedic and Trauma Nursing 15:4, pages 176-184.
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Jill Porter, Harry Daniels, Anthony Feiler & Jan Georgeson. (2011) Recognising the needs of every disabled child: the development of tools for a disability census. British Journal of Special Education 38:3, pages 120-125.
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Sasha Scambler & Paul Newton. (2011) Capital transactions, disruptions and the emergence of personal capital in a lifeworld under attack. Social Theory & Health 9:2, pages 130-146.
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Philip Andrew Scullion. (2010) Models of disability: their influence in nursing and potential role in challenging discrimination. Journal of Advanced Nursing 66:3, pages 697-707.
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Rena LyonsMary Pat O'Malley, Patricia O'Connor & Una Monaghan. (2010) ‘It’s just so lovely to hear him talking’: Exploring the early-intervention expectations and experiences of parents. Child Language Teaching and Therapy 26:1, pages 61-76.
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Sasha Scambler & Paul Newton. 2010. New Directions in the Sociology of Chronic and Disabling Conditions. New Directions in the Sociology of Chronic and Disabling Conditions 77 105 .
Lauren J. Breen. (2009) Early Childhood Service Delivery for Families Living with Childhood Disability: Disabling Families through Problematic Implicit Ideology. Australasian Journal of Early Childhood 34:4, pages 14-21.
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Wendy McCracken, Aarthy Ravichandran & Siobhán Laoide-Kemp. (2008) Audiological certainty in deaf children with learning disabilities: an imperative for inter-agency working. Deafness & Education International 10:1, pages 4-21.
Crossref
Sara Ashencaen Crabtree. (2007) Maternal Perceptions of Care-Giving of Children with Developmental Disabilities in the United Arab Emirates. Journal of Applied Research in Intellectual Disabilities 20:3, pages 247-255.
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Debra Skinner & Thomas S. Weisner. (2007) Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews 13:4, pages 302-312.
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Janice McLaughlin. (2017) Conceptualising Intensive Caring Activities: The Changing Lives of Families with Young Disabled Children. Sociological Research Online 11:1, pages 51-61.
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Patricia McKeever & Karen-Lee Miller. (2004) Mothering children who have disabilities: a Bourdieusian interpretation of maternal practices. Social Science & Medicine 59:6, pages 1177-1191.
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