Literature DB >> 24283423

"I have a good life": the meaning of well-being from the perspective of young adults with Down syndrome.

Melissa Scott1, Kitty-Rose Foley, Jenny Bourke, Helen Leonard, Sonya Girdler.   

Abstract

PURPOSE: The purposes of this study were to explore what makes for a "good life" from the perspective of young adults with Down syndrome and to identify the barriers and facilitators to participation.
METHODS: Twelve young adults with Down syndrome participated in individual and group discussions. Each session began with individual discussions between a researcher and participant, allowing each individual to express their views in their own words. Following individual discussions, participants joined a larger group facilitated by the researchers which allowed for collective reflection and sharing of experiences. Individual discussions were recorded on large poster size pieces of paper through drawings and writing using colourful pens by the participants themselves or with assistance from researchers. Group discussions were audio recorded and one researcher recorded field notes on contextual information. Data were analyzed through open coding and constant comparison techniques to identify categories which were then collapsed into the main themes.
RESULTS: Analysis of the transcripts revealed four main themes: "Relationships", "Community participation", "Independence" and "Hopes for the future". These findings highlighted the participants' desire for autonomy, particularly in the domains of living independently and employment. Family relationships and community services were described as both facilitators and barriers to their participation.
CONCLUSION: Overall, the findings from this study revealed that the participants' life perspective was positive, with a general consensus of, "I have a good life". This study yielded many recommendations that could be integrated into transition models of service delivery for young adults with Down syndrome as they develop from adolescence into adulthood. IMPLICATIONS OF REHABILITATION: Young people with Down syndrome want to make decisions for themselves. Community participation is important for young adults with Down syndrome. Young people with Down syndrome have dreams and aspirations for their future, and should be fully engaged in planning for transition from school.

Entities:  

Keywords:  Employment; ICF; intellectual disability; school; transition

Mesh:

Year:  2013        PMID: 24283423     DOI: 10.3109/09638288.2013.854843

Source DB:  PubMed          Journal:  Disabil Rehabil        ISSN: 0963-8288            Impact factor:   3.033


  7 in total

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Authors:  Hatice Uyanik; Karrie A Shogren; Peter Blanck
Journal:  J Occup Rehabil       Date:  2017-12

2.  Transition to adulthood for young people with intellectual disability: the experiences of their families.

Authors:  Helen Leonard; Kitty-Rose Foley; Terri Pikora; Jenny Bourke; Kingsley Wong; Lyn McPherson; Nick Lennox; Jenny Downs
Journal:  Eur Child Adolesc Psychiatry       Date:  2016-05-11       Impact factor: 4.785

3.  "They don't have a good life if we keep thinking that they're doing it on purpose!": Teachers' Perspectives on the Well-Being of Students with Autism.

Authors:  Joanne Danker; Iva Strnadová; Therese Marie Cumming
Journal:  J Autism Dev Disord       Date:  2019-07

Review 4.  Attitudes towards sexuality and related caregiver support of people with intellectual disabilities: A systematic review on the perspectives of people with intellectual disabilities.

Authors:  Wouter de Wit; Wietske M W J van Oorsouw; Petri J C M Embregts
Journal:  J Appl Res Intellect Disabil       Date:  2021-07-08

5.  Day occupation is associated with psychopathology for adolescents and young adults with Down syndrome.

Authors:  Kitty-Rose Foley; Peter Jacoby; Stewart Einfeld; Sonya Girdler; Jenny Bourke; Vivienne Riches; Helen Leonard
Journal:  BMC Psychiatry       Date:  2014-10-03       Impact factor: 3.630

6.  The Association between Living Status Transitions, Behavior Changes and Family Relationship Improvement among Methadone Maintenance Treatment Participants in Guangdong, China.

Authors:  Shaokun Liu; Xia Zou; Xiaoling Huang; Yin Liu; Qian Lu; Li Ling
Journal:  Int J Environ Res Public Health       Date:  2019-12-23       Impact factor: 3.390

Review 7.  Family Variables and Quality of Life in Children with Down Syndrome: A Scoping Review.

Authors:  Anna Lee; Kathleen Knafl; Marcia Van Riper
Journal:  Int J Environ Res Public Health       Date:  2021-01-07       Impact factor: 3.390

  7 in total

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