Quality of life and social inclusion across the lifespan: challenges and recommendations

Brown, Roy I.; Cobigo, Virginie; Taylor, Whitney D.

doi:10.1179/2047386914z.00000000092

Cited by 36 publications

(31 citation statements)

References 20 publications

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“…The lack of forward planning leaves our services in the position that when children with IDD become adults, find that they often cannot obtain employment and are sent to exclusive environments like training and sheltered workshop. The impact can be devastating as the sudden exclusion from their nondisabled peers and loss of social inclusion appears linked to a general deterioration which may lead to depression and in instances early dementia [14].…”

Section: Unmet Needs Regarding Employmentmentioning

confidence: 99%

Quality of Life of Adults with Down syndrome in Virginia

Allahyari¹,

Wolf-Branigin²

2018

J Down Syndr Chr Abnorm

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Background: Quality of Life (QOL) has been developing in the field of intellectual development disability since the early 1980s, and ever since there have been research, models, and theoretical constructs along with many recommendations. Ignored in its early development, QOL is now seen as important for support and intervention. Down syndrome is the most common occurring chromosomal condition-one in 700 babies in the USA is born with it. Limited research has been conducted to study quality of life of adults with DS. The present study aims to describe the quality of life of adults with DS in Virginia. Method:Qualitative approach was used to capture the "lived experience" from the perspective of those who live it and create meaning from it. This qualitative study investigated experts' and parents' thoughts and experiences of the adequacy of social service programs in Virginia which included health, rehabilitation, education, employment, and nutrition. Individual face-to-face or telephone interviews were conducted with five experts and five mothers of adult, aged 23 or older with DS. The interviews were analysed using content analysis.Results: Indicated that from a service program perspective (health, rehabilitation, education, employment, nutrition), there is a discrepancy between presented services and unmet needs, namely shelter housing, recreation programs and limitations of City-University Energy-saver (CUE) buses. Conclusion: Adults with DS are considered to have a low quality of life. This study illuminates four new insights yet there remain many challenges into acceptance, marriage, end of life and the present law concerning individuals with DS. The emerging question is: Does quality of life of adults with DS in Virginia depend on their acceptance into society, marriage, solving employment problems or the law on guardianship? Jou rn a l o f D own S y n d r o m e & Ch ro m o s o m e Abn o rm a li ti es RehabilitationAll adults had received service programs like speech or physical or occupational therapies, or infant stimulation program when they were young, and participants found these programs very useful. During Citation: Allahyari T, Wolf-Branigin M (2018) Quality of Life of Adults with Down syndrome in Virginia. J Down Syndr Chr Abnorm 4: 128.

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Section: Unmet Needs Regarding Employmentmentioning

confidence: 99%

Quality of Life of Adults with Down syndrome in Virginia

Allahyari¹,

Wolf-Branigin²

2018

J Down Syndr Chr Abnorm

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“…The principles of QOL have been expanded and clarified, and most recently set into a broad pattern that covers QOL and FQOL across the lifespan. We briefly introduce these important QOL principles here as they constitute a practical paradigm that is relevant as a background to the articles in this special issue (see Brown, Cobigo, & Taylor, 2015 for further details).…”

Section: Principles Of Qolmentioning

confidence: 99%

The Background and Development of Quality of Life and Family Quality of Life: Applying Research, Policy, and Practice to Individual and Family Living

Brown

Schippers

2018

IJCYFS

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This article introduces the concepts of quality of life and family quality of life and shows how they have developed in the field of intellectual and developmental disabilities in terms of concepts and principles. The article underscores the relevance of many of the principles and practices to a wide range of disabilities and challenges in the broad field of human development. Finally, the article provides an introduction to the other articles in this special issue, and considers their relationship to the broader areas of research, practice, and policy.

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“…This investigation is based on the QOL domains identified by Raphael, Renwick, Brown, and Rootman (1996) that are also applicable to FQOL. The two constructs, capability approach and FQOL, are explained using the three themes of being, becoming, and belonging, as those themes have social contexts that are important to the QOL of children with disabilities and their family members (Brown, Cobigo, & Taylor, 2015).…”

Section: Conceptual Frameworkmentioning

confidence: 99%

The Experiences of Children With Disabilities and Primary Caregivers on the Social Inclusion of Children With Disabilities in Ethiopia

Tefera

Schippers

Engen

et al. 2018

IJCYFS

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This article presents the findings of a qualitative study on the social inclusion of children with disabilities in Addis Ababa, Ethiopia and how this affects their achievement of valued life goals. The study is based on focus group discussions with children with disabilities and primary caregivers of such children. The thematic analysis is based on family quality of life and the capability approach, which are used to explain the effects of social inclusion (and exclusion) on children with disabilities and their families in three areas of quality of life: being, belonging, and becoming. The study also looked at how the social inclusion of children with disabilities can be actualised. The results of the study confirm the existence of considerable challenges to the social inclusion of children with disabilities in Addis Ababa, which is reflected in their capabilities. The results suggest that children with disabilities need assistance and support to achieve a good quality of life. They also indicate the need for the involvement of the wider community to support children with disabilities and their families to enhance the capability of such children, and so improve their family quality of life.

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Quality of life and social inclusion across the lifespan: challenges and recommendations

Cited by 36 publications

References 20 publications

Quality of Life of Adults with Down syndrome in Virginia

Quality of Life of Adults with Down syndrome in Virginia

The Background and Development of Quality of Life and Family Quality of Life: Applying Research, Policy, and Practice to Individual and Family Living

The Experiences of Children With Disabilities and Primary Caregivers on the Social Inclusion of Children With Disabilities in Ethiopia

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