Literature DB >> 22151130

Review: the development of family quality of life concepts and measures.

P S Samuel1, F Rillotta, I Brown.   

Abstract

Historically, intervention programmes in intellectual and developmental disabilities have targeted the individual's special needs independent of the family and environmental context. This trend has been changing over the past two decades. This paper presents a literature review on changing trends in family support and the development of family quality of life (FQOL) and intellectual disability from a construct to a theory. The evolution of research in quality of life from the perspective of the individual with the disability to the family is described. A description of the development of FQOL measures is included, specifically an introduction and comparison of the two leading comprehensive initiatives on measuring FQOL - international FQOL project and the FQOL initiative of the Beach Center on Disability, in the USA. This paper provides the conceptual background and context to the other papers presented in this special issue, which focus on FQOL measurement in specific contexts.
© 2011 The Author. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

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Mesh:

Year:  2011        PMID: 22151130     DOI: 10.1111/j.1365-2788.2011.01486.x

Source DB:  PubMed          Journal:  J Intellect Disabil Res        ISSN: 0964-2633


  12 in total

1.  Relationship between family quality of life and day occupations of young people with Down syndrome.

Authors:  Kitty-Rose Foley; Sonya Girdler; Jenny Downs; Peter Jacoby; Jenny Bourke; Nick Lennox; Stewart Einfeld; Gwynnyth Llewellyn; Trevor R Parmenter; Helen Leonard
Journal:  Soc Psychiatry Psychiatr Epidemiol       Date:  2014-01-12       Impact factor: 4.328

Review 2.  Quality of life in children and adolescents with autism spectrum disorders: what is known about the effects of pharmacotherapy?

Authors:  Wendy N Moyal; Catherine Lord; John T Walkup
Journal:  Paediatr Drugs       Date:  2014-04       Impact factor: 3.022

3.  Family Quality of Life of South African Families Raising Children with Autism Spectrum Disorder.

Authors:  Liezl Schlebusch; Shakila Dada; Alecia E Samuels
Journal:  J Autism Dev Disord       Date:  2017-07

Review 4.  Family quality of life for families of children with disabilities in African contexts: a scoping review.

Authors:  Julia Jansen-van Vuuren; Reshma Parvin Nuri; Ansha Nega; Beata Batorowicz; Rosemary Lysaght; Heather Michelle Aldersey
Journal:  Qual Life Res       Date:  2021-09-18       Impact factor: 4.147

5.  Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life.

Authors:  Yuka Mori; Jenny Downs; Kingsley Wong; Barbara Anderson; Amy Epstein; Helen Leonard
Journal:  Orphanet J Rare Dis       Date:  2017-01-19       Impact factor: 4.123

6.  Stigma of living as an autism carer: a brief psycho-social support intervention (SOLACE). Study protocol for a randomised controlled feasibility study.

Authors:  Annemarie Lodder; Chris Papadopoulos; Gurch Randhawa
Journal:  Pilot Feasibility Stud       Date:  2019-02-26

7.  Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches.

Authors:  Alba Aza; María Gómez-Vela; Marta Badia; M Begoña Orgaz; Eva González-Ortega; Isabel Vicario-Molina; Estrella Montes-López
Journal:  Health Qual Life Outcomes       Date:  2022-05-07       Impact factor: 3.077

8.  Family Quality of Life Perceived by Mothers of Children with ASD and ADHD.

Authors:  Alyssa Romaniuk; Michelle Ward; Brenna Henrikson; Karis Cochrane; Jennifer Theule
Journal:  Child Psychiatry Hum Dev       Date:  2022-09-08

9.  Study protocol of the multi-centre, randomised controlled trial of the Frankfurt Early Intervention Programme A-FFIP versus early intervention as usual for toddlers and preschool children with Autism Spectrum Disorder (A-FFIP study).

Authors:  Janina Kitzerow; Matthes Hackbusch; Katrin Jensen; Meinhard Kieser; Michele Noterdaeme; Ulrike Fröhlich; Regina Taurines; Julia Geißler; Nicole Wolff; Veit Roessner; Nico Bast; Karoline Teufel; Ziyon Kim; Christine M Freitag
Journal:  Trials       Date:  2020-02-24       Impact factor: 2.279

10.  The Spanish Family Quality of Life Scales under and over 18 Years Old: Psychometric Properties and Families' Perceptions.

Authors:  Anna Balcells-Balcells; Joana M Mas; Natasha Baqués; Cecilia Simón; Simón García-Ventura
Journal:  Int J Environ Res Public Health       Date:  2020-10-25       Impact factor: 3.390

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