Literature DB >> 20722475

"It's our job": qualitative study of family responses to ableism.

Susan L Neely-Barnes1, J Carolyn Graff, Ruth J Roberts, Heather R Hall, Jane S Hankins.   

Abstract

Forty-five parents of children with autism, cerebral palsy, Down syndrome, and sickle cell disease participated in 8 focus groups. Parents discussed how they, the child with the disability, and the siblings addressed community perceptions about the child's disability. Themes evolving from the interviews included (a) support and lack of support, (b) inclusion and exclusion, and (c) the family members' roles during their interactions with the community. Parents viewed their roles in the community as (a) advocating, (b) educating, (c) informing, (d) ignoring, and (e) hiding. The relationship between themes is presented, and the relationship between themes and parent empowerment is discussed as well as the ways in which the themes reflect underlying ableism.

Entities:  

Mesh:

Year:  2010        PMID: 20722475      PMCID: PMC3164980          DOI: 10.1352/1934-9556-48.4.245

Source DB:  PubMed          Journal:  Intellect Dev Disabil        ISSN: 1934-9491


  11 in total

Review 1.  Cognitive functioning in children with sickle cell disease: a meta-analysis.

Authors:  Jeffrey Schatz; Robert L Finke; Julie M Kellett; Joel H Kramer
Journal:  J Pediatr Psychol       Date:  2002-12

2.  The coping responses of the adolescent siblings of children with severe disabilities.

Authors:  Sannette Opperman; Erna Alant
Journal:  Disabil Rehabil       Date:  2003-05-06       Impact factor: 3.033

3.  Management of respite and personal assistance services in a consumer-directed family support programme.

Authors:  J Caldwell; T Heller
Journal:  J Intellect Disabil Res       Date:  2003 May-Jun

4.  Mothering children who have disabilities: a Bourdieusian interpretation of maternal practices.

Authors:  Patricia McKeever; Karen-Lee Miller
Journal:  Soc Sci Med       Date:  2004-09       Impact factor: 4.634

5.  Storying disability and impairment: retrospective accounts of disabled family life.

Authors:  Dan Goodley; Claire Tregaskis
Journal:  Qual Health Res       Date:  2006-05

6.  Consumer-directed supports: economic, health, and social outcomes for families.

Authors:  Joe Caldwell
Journal:  Ment Retard       Date:  2006-12

7.  Neurocognitive development of young children with sickle cell disease through three years of age.

Authors:  Robert J Thompson; Kathryn E Gustafson; Melanie J Bonner; Russell E Ware
Journal:  J Pediatr Psychol       Date:  2002 Apr-May

8.  Qualitative research. Introducing focus groups.

Authors:  J Kitzinger
Journal:  BMJ       Date:  1995-07-29

9.  Depression in mothers and fathers of children with intellectual disability.

Authors:  M B Olsson; C P Hwang
Journal:  J Intellect Disabil Res       Date:  2001-12

10.  A prospective study of the relationship over time of behavior problems, intellectual functioning, and family functioning in children with sickle cell disease: a report from the Cooperative Study of Sickle Cell Disease.

Authors:  Robert J Thompson; F Daniel Armstrong; Carol L Link; Charles H Pegelow; Franklin Moser; Winfred C Wang
Journal:  J Pediatr Psychol       Date:  2003 Jan-Feb
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  4 in total

1.  Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies.

Authors:  Laura Ellen Ashcraft; Miya Asato; Amy J Houtrow; Dio Kavalieratos; Elizabeth Miller; Kristin N Ray
Journal:  Patient       Date:  2019-04       Impact factor: 3.883

2.  Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation.

Authors:  Marcia Van Riper; George J Knafl; Maria do Céu Barbieri-Figueiredo; Maria Caples; Hyunkyung Choi; Gert de Graaf; Elysângela Dittz Duarte; Junko Honda; Elena Marta; Supapak Phetrasuwan; Sara Alfieri; Margareth Angelo; Wannee Deoisres; Louise Fleming; Aline Soares Dos Santos; Maria João Rocha da Silva; Beth Skelton; Shelley van der Veek; Kathleen A Knafl
Journal:  J Fam Nurs       Date:  2020-12-04       Impact factor: 3.818

3.  Using the International Classification of Functioning, Disability and Health (ICF) to describe children referred to special care or paediatric dental services.

Authors:  Denise Faulks; Johanna Norderyd; Gustavo Molina; Caoimhin Macgiolla Phadraig; Gabriela Scagnet; Caroline Eschevins; Martine Hennequin
Journal:  PLoS One       Date:  2013-04-16       Impact factor: 3.240

4.  A Qualitative Study of Psychosocial Problems among Parents of Children with Cerebral Palsy Attending Two Tertiary Care Hospitals in Western India.

Authors:  Somashekhar Nimbalkar; Shyamsundar Raithatha; Rutvij Shah; Dhara Antani Panchal
Journal:  ISRN Family Med       Date:  2014-02-20
  4 in total

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