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  • Abbott D., Watson D. & Townsley R. (2005) The proof of the pudding: what difference does multi-agency working make to families with disabled children with complex health care needs? Child & Family Social Work 10, 22938.
  • Australian Centre on Quality of Life (2008) Instruments. Available at: http://www.deakin.edu.au/research/acqol/index.php (retrieved 27 May 2011).
  • Aznar A. S. & Castanon D. G. (2005) Quality of life from the point of view of Latin American families: a participative research study. Journal of Intellectual Disability Research 49, 7848.
  • Bailey D. B., McWilliam R. A., Drakes L. A., Hevveler K., Simeonsson R. J., Spiker D. et al. (1998) Family outcomes in early intervention: a framework for program evaluation and efficacy research. Exceptional Children 64, 31328.
  • Beach Center on Disability (2003) The Beach Center Family Quality of Life Scale [Survey]. Beach Center, The University of Kansas, Lawrence, KS, in partnership with families, service providers and researchers.
  • Beach Center on Disability (2005) The Beach Center Family Quality of Life Scale. Beach Center, The University of Kansas, Lawrence, KS, in partnership with families, service providers and researchers.
  • Beach Center on Disability (2006) Kansas Kindergarten Survey: Family Community Participation [FCIS]. Beach Center, The University of Kansas, Lawrence, KS, in partnership with families, service providers and researchers.
  • Blacher J. & Hatton C. (2007) Families in context: influences on coping. In: Handbook of Developmental Disabilities (eds S. L. Odom, R. H. Horner, M. E. Snell & J. Blacher), pp. 53151. The Guilford Press, New York.
  • Blue-Banning M., Summers J. A., Franklan H. C., Nelson L. L. & Beegle G. (2004) Dimensions of family and professional partnerships: constructive guidelines for collaboration. Exceptional Children 70, 16784.
  • Bowman R. A. (2001) Quality of life assessment for young children with developmental disabilities and their families; Development of a quality of life questionnaire, Ph.D. Dissertation. West Virginia University, WV. Retrieved 22 September 2011, from Dissertations & Theses: Full Text. (Publication No. AAT 3022039).
  • Brown I. (1999) Embracing quality of life in times of spending restraint. Journal of Intellectual & Developmental Disability 24, 299308.
  • Brown I. (2010) Family quality of life: a comparison of trends in eight countries. In: Contemporary Issues in Intellectual Disabilities (ed. V. P. Prasher), pp. 25564. Nova Publishers, New York.
  • Brown I. & Brown R. (2003) Quality of Life and Disability: An Approach for Community Practitioners. Jessica Kingsley Publishers, London.
  • Brown I. & Brown R. I. (2009) Choice as an aspect of quality of life for people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities 6, 1118.
  • Brown I., Neikrug S. & Brown R. I. (2000) Family Quality of Life Survey. Faculty of Social Work, University of Toronto, Toronto.
  • Brown I., Anand S., Fung W. L. A., Isaacs B. & Baum N. (2003) Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Disabilities 15, 20730.
  • Brown I., Brown R. I., Baum N. T., Isaacs B. J., Myerscough T., Neikrug S. et al. (2006) Family Quality of Life Survey: Main Caregivers of People with Intellectual Disabilities. Surrey Place Centre, Toronto.
  • Brown I., Galambos D., Poston D. & Turnbull A. (2007) Person centered and family centered support. In: A Comprehensive Guide to Intellectual and Developmental Disabilities (eds I. Brown & M. Percy), pp. 35162. Paul H. Brookes Publishing Co., Baltimore, MD.
  • Brown R. I. & Brown I. (2005) The application of quality of life. Journal of Intellectual Disability Research 49, 71827.
  • Brown R. I., MacAdam-Crisp J., Wang M. & Iarocci G. (2006) Family quality of life when there is a child with a developmental disability. Journal of Policy and Practice in Intellectual Disabilities 3, 23845.
  • Brown R. I., Schalock R. L. & Brown I. (2009) Quality of life: its application to persons with intellectual disabilities and their families – introduction and overview. Journal of Policy and Practice in Intellectual Disabilities 6, 26.
  • Cordoba-Andrade L., Gomez-Benito J. & Verdugo-Alonso M. A. (2008) Family quality of life of people with a disability: a comparative analysis. Universitas Psychologica 7, 36983.
  • Cummins R. A. (1991) The Comprehensive Quality of Life Scale – Intellectual Disability: an initial report. Australia & New Zealand Journal of Developmental Disabilities 17, 25964.
  • Cummins R. A. (2001) The subjective well-being of people caring for a family member with a severe disability at home: a review. Journal of Intellectual & Developmental Disability 26, 83100.
  • Cummins R. A. (2005) Issues in the systematic assessment of quality of life. In: Assessing Adults with Intellectual Disabilities: A Service Provider's Guide (eds J. Hogg & A. Langa), pp. 922. BPS Blackwell, Maiden, MA.
  • Cuskelly M. & Gunn P. (2006) Adjustment of children who have a sibling with Down syndrome: perspectives of mothers, fathers and children. Journal of Intellectual Disability Research 50, 91725.
  • Datta S. S., Russell P. S. S. & Gopalakrishna S. C. (2002) Burden among the caregivers of children with intellectual disability: associations and risk factors. Journal of Intellectual Disabilities 6, 33750. doi: 10.1177/146900470200600401.
  • Davis K. & Gavidia-Payne S. (2009) The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual & Developmental Disability 34, 15362.
  • DeFrain J. (1999) Strong families. Family Matters 53, 613.
  • Dunst C., Trivette C., Hamby D. & Bruder M. (2006) Influences of contrasting natural learning environment experiences on child, parent and family well-being. Journal of Developmental and Physical Disabilities 18, 23550.
  • Dunst C. J. (1997) Conceptual and empirical foundations of family-centered practice. In: Integrated Services for Children and Families: Opportunities for Psychological Practice (eds R. Illback, C. Cobb & H. Joseph Jr), pp. 7591. American Psychological Association, Washington, DC.
  • Education for All Handicapped Children Act of 1975 (1975) PL 94-142, 20 U.S.C. §§ 1400 et seq.
  • Emerson E. (2003) Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self-assessed social and psychological impact of the child's difficulties. Journal of Intellectual Disability Research 47, 38599.
  • Eskow K. G., Summers J. A. & Pineles L. (2011) Exploring effect of autism waiver services on family outcomes. Journal of Policy and Practice in Intellectual Disabilities 8, 2835.
  • Faber B. (1959) Effects of a severely mentally retarded child on family integration. Monographs of the Society for Research in Child Development 24, 1112.
  • Feldman M. A. & Werner S. E. (2002) Collateral effects of behavioral parent training on families of children with developmental disabilities and behavior disorders. Behavioral Interventions 17, 7583.
  • Floyd F. J. & Gallagher E. M. (1997) Parental stress, care demands, and use of support services for school-age children with disabilities and behavior problems. Family Relations 46, 35971.
  • Giallo R. & Gavidia-Payne S. (2006) Child, parent and family factors as predictors of adjustment for siblings of children with a disability. Journal of Intellectual Disability Research 50, 93748.
  • Glidden L. M., Billings F. J. & Jobe B. M. (2006) Personality, coping style and well-being of parents rearing children with developmental disabilities. Journal of Intellectual Disability Research 50, 94962.
  • Greenberg J. S., Seltzer M. M., Orsmond G. I. & Krauss M. W. (1999) Siblings of adults with mental illness or mental retardation: current involvement and expectation of future caregiving. Psychiatric Services 50, 121419.
  • Hastings R. P. (2002) Parental stress and behaviour problems of children with developmental disability. Journal of Intellectual & Developmental Disability 27, 14960.
  • Hill C. & Rose J. (2009) Parenting stress in mothers of adults with an intellectual disability: parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research 53, 96980.
  • Hoffman L., Marquis J., Poston D., Summers J. A. & Turnbull A. (2006) Assessing family outcomes: psychometric evaluation of the Beach Center Family Quality of Life Scale. Journal of Marriage and Family 68, 106983.
  • Hornstein S. & McWilliam R. A. (2007) Measuring family quality of life in families of children with autism spectrum disorders (Abstract). Paper presented at the 2007 Annual Conference of the Division for Early Childhood. Available at: http://www.dec-sped.org/pdf/annualconference/FAM1177%20Poster%20S27%20Measuring%20Family%20Quality%20of%20Life.pdf (retrieved 15 December 2007).
  • Isaacs B., Wang M., Samuel P. S., Rillotta F., Ajuwon P. Baum N. et al. (2011) Testing the factor structure of the Family Quality of Life Survey-2006. Journal of Intellectual Disability Research. DOI: 10.1111/j.1365-2788.2011. 01392.x.
  • Isaacs B. J., Brown I., Brown R. I., Baum N. T., Myerscough T. et al. (2007) Development of a Family Quality of Life Survey. Journal of Policy and Practice in Intellectual Disabilities 4, 17785.
  • Jackson C. W., Wegner J. R. & Turnbull A. P. (2010) Family quality of life following identification of deafness. Language, Speech, and Hearing Services in Schools 41, 194205. doi: 10.1044/0161-1461(2009/07-0093).
  • Jokinen N. S. & Brown R. I. (2005) Family quality of life from the perspective of older parents. Journal of Intellectual Disability Research 49, 78993.
  • Klein D. M. & White J. M. (1996) Family Theories: An Introduction. Sage Publications, Inc., Thousand Oaks, CA.
  • Kyzar K. (2010) The relationship of perceptions of service and support adequacy to family quality of life for families of children with deaf-blindness. Doctoral dissertation, University of Kansas.
  • Lin J.-D., Hu J., Yen C.-F., Hsu S.-W., Lin L.-P., Loh C.-H. et al. (2009) Quality of life in caregivers of children and adolescents with intellectual disabilities: use of WHOQOL-BREF survey. Research in Developmental Disabilities 30, 144858.
  • Llewellyn G., Dunn P., Fante M., Turnbull L. & Grace R. (1999) Family factors influencing out-of-home placement decisions. Journal of Intellectual Disability Research 43, 21933.
  • Llewellyn G., Thompson K., Whybrow S., McConnell D., Bratel J., Coles D. et al. (2003) Supporting Families: Family Well-Being and Children with Disabilities (an ARC SPIRT collaborative research project). University of Sydney in collaboration with the Spastic Centre of NSW, Sydney, NSW.
  • Lloyd T. & Hastings R. P. (2009) Parental locus of control and psychological well-being in mothers of children with intellectual disability. Journal of Intellectual & Developmental Disability 34, 10415.
  • Mactavish J. B. & Schleien S. J. (2004) Re-injecting spontaneity and balance in family life: parents' perspectives on recreation in families that include children with developmental disability. Journal of Intellectual Disability Research 48, 12341.
  • Morrissey P. (2005) Family support 360. Letter from the Commissioner, Administration on Developmental Disabilities. Available at: http://www.addfamilysupport360.org/3_10/commissioner_archive_2.asp (retrieved 8 August 2007).
  • Olson D. H. & Barnes H. L. (1982) Quality of life. In: Family Inventories (eds D. H. Olson, H. I. McCubbin, H. Barnes, A. Larsen, M. Muxen & M. Wilson), pp. 5567. Life Innovations, Inc., Minneapolis, MN.
  • Parish S. L., Pomeranz A., Hemp R., Rizzola M. C. & Braddock D. (2001) Family Support for Persons with Developmental Disabilities in the US: Status and Trends (policy research brief). Institute on Community Integration, University of Minnesota, Minneapolis, MN.
  • Park J., Turnbull A. & Turnbull H. R. (2002) Impacts of poverty on quality of life in families of children with disabilities. Exceptional Children 68, 15170.
  • Park J., Hoffman L., Marquis J., Turnbull A. P., Poston D., Mannan H. et al. (2003) Toward assessing family outcomes of service delivery: validation of a Family Quality of Life Survey. Journal of Intellectual Disability Research 47, 36784.
  • Phelps K. W., McCammon S. L., Wuensch K. L. & Golden J. A. (2009) Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder. Journal of Intellectual & Developmental Disability 34, 13341.
  • Poston D. & Turnbull A. (2004) Role of spirituality and religion in family quality of life for families of children with disabilities. Education and Training in Developmental Disabilities 39, 95108.
  • Poston D., Turnbull A., Park J., Mannan H., Marquis J. & Wang M. (2003) Family quality of life outcomes: a qualitative inquiry launching a long-term research program. Mental Retardation 41, 31328.
  • Renwick R., Brown I. & Raphael D. (1998) The family quality of life project. Report to Developmental Services Branch, Ontario Ministry of Community and Social Services, Ontario, Canada.
  • Rillotta F., Kirby N. & Shearer J. (2011) A comparison of two family quality of life measures: an Australian study. In: Enhancing Quality of Life of People with Intellectual Disabilities (ed. R. Kober), pp. 30548. Springer, Dordrecht.
  • Risdal D. & Singer G. H. S. (2004) Marital adjustment in parents of children with disabilities. A historical review and meta-analysis. Research and Practice for Persons with Severe Disabilities 29, 95103.
  • Ross P. & Cuskelly M. (2006) Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder. Journal of Intellectual & Developmental Disability 31, 7786.
  • Saito Y. & Turnbull A. (2007) Augmentative and alternative communication practice in the pursuit of family quality of life: a review of literature. Research and Practice for Persons with Severe Disabilities 32, 5065.
  • Samuel P. (2007) Psychometric evaluation of the Family Quality of Life Survey for low income minority families (Research proposal submitted to the National Institute on Disability Research and Rehabilitation: CFDA # 84.133F). Wayne State University, Detroit, MI.
  • Samuel P. (2010) Final report: psychometric evaluation of the Family Quality of Life Survey for low-income, minority families . Wayne State University, Detroit, MI.
  • Samuel P. S., LeRoy B. & Janks E. (2010) Inclusive communities: supporting families of children with developmental disabilities in Detroit. Paper presented at the Inter-Country Meeting for Promotion of Inclusivity in Education, Employment, Health & Well-being of Persons with Disability in the South-East Asia Region, New Delhi, India.
  • Schalock R. (2004) The concept of quality of life: what we know and do not know. Journal of Intellectual Disability Research 48, 20316.
  • Schalock R. L. & Verdugo M. (2002) Handbook on Quality of Life for Human Service Practitioners. American Association on Mental Retardation, Washington, DC.
  • Schalock R. L., Brown I., Brown R. I., Cummins R. A., Felce D., Matikka L. et al. (2002) Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: report of an international panel of experts. Mental Retardation 40, 45770.
  • Schalock R. L., Gardner J. F. & Bradley V. J. (2007) Quality of Life of Persons with Intellectual and Other Developmental Disabilities: Applications across Individuals, Organizations, Systems, and Communities. American Association on Intellectual and Developmental Disabilities, Washington, DC.
  • Seligman M. & Darling R. B. (2007) Ordinary Families, Special Children: A Systems Approach to Childhood Disability. Guilford Press, New York.
  • Seltzer M. M., Greenberg J. S., Krauss M. W., Gordon R. M. & Judge K. (1997) Siblings of adults with mental retardation or mental illness: effects on lifestyle and psychological well-being. Family Relations 46, 395405.
  • Şenel H. G. & Akkök F. (1995) Stress levels and attitudes of normal siblings of children with disabilities. International Journal for the Advancement of Counselling 18, 618.
  • Skok A., Harvey D. & Reddihough D. (2006) Perceived stress, perceived social support, and wellbeing among mothers of school-aged children with cerebral palsy. Journal of Intellectual & Developmental Disability 31, 537.
  • Smith-Bird E. & Turnbull A. P. (2005) Linking positive behavior support to family quality-of-life outcomes. Journal of Positive Behavior Interventions 7, 17480.
  • Songjae J., Huh C., Kosciulek J. F. & Holecek D. F. (2004) Comparison of travel patterns of families with and without a member with a disability. Journal of Rehabilitation 70, 3845.
  • Strohm K. (2002) Siblings: Brothers and Sisters of Children with Special Needs. Wakefield Press, Adelaide, SA.
  • Summers J. A., Poston D. J., Turnbull A. P., Marquis J., Hoffman L., Mannan H. et al. (2005) Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research 49, 77783.
  • Thompson L., Lobb C., Elling R., Herman S., Jurkiewicz T. & Hulleza C. (1997) Pathways to family empowerment: effects of family-centered delivery of early intervention services. Exceptional Children 64, 99113.
  • Turnbull A. P. & Turnbull H. R. (2001) Families, Professionals and Exceptionality. Merrill Prentice Hall, New Jersey, NJ.
  • Turnbull A. P., Turnbull H. R. & Blue-Banning M. (1994) Enhancing inclusion of infants and toddlers with disabilities and their families: a theoretical and programmatic analysis. Infants and Young Children 7, 114.
  • Turnbull A. P., Brown I. & Turnbull H. R. (eds) (2004a) Families and Persons with Mental Retardation and Quality of Life: International Perspectives. American Association on Mental Retardation, Washington, DC.
  • Turnbull A. P., Turnbull H. R., Poston D., Beegle G., Blue-Banning M. et al. (2004b) Enhancing quality of life of families of children and youth with developmental disabilities in the United States. In: Families and People with Mental Retardation and Quality of Life: International Perspectives (eds A. Turnbull, I. Brown & H. R. Turnbull), pp. 51100. American Association on Mental Retardation, Washington, DC.
  • Turnbull A. P., Poston D. J., Minnes P. & Summers J. A. (2007a) Providing supports and services that enhance a family's quality of life. In: A Comprehensive Guide to Intellectual and Developmental Disabilities (eds I. Brown & M. Percy), pp. 55969. Paul H. Brookes Publishing Co., Baltimore, MD.
  • Turnbull A. P., Summers J. A., Lee S. -H. & Kyzar K. (2007b) Conceptualization and measurement of family outcomes associated with families of individuals with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews 13, 34656. doi: 10.1002/mrdd.20174.
  • Turnbull H. R., Beegle G. & Stowe M. J. (2001) The core concepts of disability policy affecting families who have children with disabilities. Journal of Disability Policy Studies 12, 13343.
  • Verdugo M. A. & Schalock R. L. (2009) Quality of life: from concept to future applications in the field of intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities 6, 624.
  • Verdugo M. A., Córdoba L. & Gómez J. (2005a) Spanish adaptation and validation of the Family Quality of Life Survey. Journal of Intellectual Disability Research 49, 7948. doi: 10.1111/j.1365-2788.2005.00754.x.
  • Verdugo M. A., Schalock R. L., Keith K. D. & Stancliffe R. J. (2005b) Quality of life and its measurement: important principles and guidelines. Journal of Intellectual Disability Research 49, 70717.
  • Wang M., Turnbull A. P., Summers J. A., Little T. D., Poston D. J., Mannan H. et al. (2004) Severity of disability and income as predictors of parents' satisfaction with their family quality of life during early childhood years. Research and Practice for Persons with Severe Disabilities 29, 8294.
  • Wang M., McCart A. & Turnbull A. (2007) Implementing positive behavior support with Chinese American families: enhancing cultural competence. Journal of Positive Behavior Interventions 9, 3851.
  • Webster R. I., Majnemer A., Platt R. W. & Shevell M. I. (2008) Child health and parental stress in school-age children with a preschool diagnosis of developmental delay. Journal of Child Neurology 23, 328.
  • Werner S., Edwards M., Baum N., Brown I., Brown R. I. & Isaacs B. J. (2009) Family quality of life among families with a member who has an intellectual disability: an exploratory examination of key domains and dimensions of the revised FQOL Survey. Journal of Intellectual Disability Research 53, 50111.
  • Yaoying X. (2007) Empowering culturally diverse families of young children with disabilities: the double ABCX model. Early Childhood Education Journal 34, 4314.
  • Zabriskie R. B. & McCormick B. P. (2003) Parent and child perspectives of family leisure involvement and satisfaction with family life. Journal of Leisure Research 35, 16389.
  • Zuna N., Summers J. A., Turnbull A. P., Hu X. & Xu S. (2011) Theorizing about family quality of life. In: Enhancing the Quality of Life of People with Intellectual Disability: From Theory to Practice (ed. R. Kober), pp. 24178. Springer, Dordrecht.
  • Zuna N. I., Turnbull A. P. & Summers J. A. (2009) Family quality of life: moving from measurement to application. Journal of Policy and Practice in Intellectual Disabilities 6, 2531.