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Research Article

Electronic Version of the Family Quality of Life Survey (eFQOLS): Reliability and Validity for Families of Individuals With Disabilities and Chronic Health Conditions

ORCID Icon, , ORCID Icon &
Received 08 Jun 2023, Accepted 11 Apr 2024, Published online: 01 May 2024

References

  • Badia, M., Orgaz, M. B., Vicario-Molina, I., González-Ortega, E., Gómez-Vela, M., Aza, A., & Martín-Delgado, M. A. (2021). Transcultural adaptation and psychometric properties of Family Quality of Life Survey for caregivers of people with neurodegenerative disease: A study of Spanish families who live in the rural Spain–Portugal cross-border. Health and Quality of Life Outcomes, 19(1), 172. https://doi.org/10.1186/s12955-021-01809-6
  • Belasco, A. G., & Sesso, R. (2002). Burden and quality of life of caregivers for hemodialysis patients. American Journal of Kidney Diseases: The Official Journal of the National Kidney Foundation, 39(4), 805–812. https://doi.org/10.1053/ajkd.2002.32001
  • Brown, I., Brown, R. I., Baum, N. T., Isaacs, B. J., Myerscough, T., Neikrug, S., Roth, D., Shearer, J., & Wang, M. (2006). Family Quality of Life Survey: Main caregivers of people with intellectual or developmental disabilities. Surrey Place Centre. https://www.surreyplace.ca/research/current-opportunities/family-quality-of-life-project/
  • Brown, R., Kyrkou, M., & Samuel, P. S. (2016). Family quality of life in families where there is a person with intellectual and developmental disabilities (Chapter 65). In I. L. Rubin, J. Merrick, D. E. Greydanus & D. R. Patel (Eds.), Health care for people with intellectual and developmental disabilities across the lifespan (3rd ed., pp. 2065–2082). Springer International Publishing.
  • Byrne, B. M. (2001). Structural equation modeling with AMOS: Basic concepts, applications and programming. Lawrence Erlbaum Associates.
  • Caqueo-Urízar, A., Gutiérrez-Maldonado, J., & Miranda-Castillo, C. (2009). Quality of life in caregivers of patients with schizophrenia: A literature review. Health and Quality of Life Outcomes, 7, 84. https://doi.org/10.1186/1477-7525-7-84
  • Clark, M., Brown, R., & Karrapaya, R. (2012). An initial look at the quality of life of Malaysian families that include children with disabilities. Journal of Intellectual Disability Research, 56(1), 45–60. https://doi.org/10.1111/j.1365-2788.2011.01408.x
  • Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). Erlbaum.
  • Dunn, N. J., & Strain, L. A. (2001). Caregivers at risk?: Changes in leisure participation. Journal of Leisure Research, 33(1), 32–55. https://doi.org/10.1080/00222216.2001.11949929
  • Geuze, L., Goossensen, A., & Schrevel, S. (2022). “Continuously struggling for balance”: The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities. Journal of Intellectual & Developmental Disability, 48(2), 161–171. https://doi.org/10.3109/13668250.2022.2073707
  • Golics, C. J., Basra, M. K. A., Salek, M. S., & Finlay, A. Y. (2013). The impact of patients’ chronic disease on family quality of life: An experience from 26 specialties. International Journal of General Medicine, 6, 787–798. https://doi.org/10.2147/IJGM.S45156
  • Hoffman, L., Marquis, J. G., Poston, D. J., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the family quality of life scale. Journal of Marriage and Family, 68(4), 1069–1083. https://doi.org/10.1111/j.1741-3737.2006.00314.x
  • Isaacs, B. J., Brown, I., Brown, R. I., Baum, N., Myerscough, T., Neikrug, S., Roth, D., Shearer, J., & Wang, M. (2007). The international family quality of life project: Goals and description of a survey tool. Journal of Policy and Practice in Intellectual Disabilities, 4(3), 177–185. https://doi.org/10.1111/j.1741-1130.2007.00116.x
  • Isaacs, B., Wang, M., Samuel, P. S., Ajuwon, P., Baum, N., Edwards, M., & Rillotta, F. (2012). Testing the factor structure of the Family Quality of Life Survey–2006. Journal of Intellectual Disability Research, 56(1), 17–29. https://doi.org/10.1111/j.1365-2788.2011.01392.x
  • Knapp, T. R. (2005). The reliability of measuring instruments (3rd ed). Edgeworth Laboratory for Quantitative Educational and Behavioral Science Series.
  • Kobosko, J., Ganc, M., Paluch, P., Jedrzejczak, W. W., Fludra, M., & Skarzynski, H. (2021). Developmental outcomes of young deaf children and the self-perceived parental role of their hearing mothers. International Journal of Pediatric Otorhinolaryngology, 141, 110517. https://doi.org/10.1016/j.ijporl.2020.110517
  • Lee, C. E., Burke, M. M., Arnold, C. K., & Owen, A. (2020). Compound sibling caregivers of individuals with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities: JARID, 33(5), 1069–1079. https://doi.org/10.1111/jar.12729
  • Mandic, C. G., Johaningsmeir, S., Corden, T. E., Earle, A., Acevedo-Garcia, D., & Gordon, J. B. (2017). Impact of caring for children with medical complexity on parents’ employment and time. Community, Work & Family, 20(4), 444–458. https://doi.org/10.1080/13668803.2016.1202195
  • Matthews, B. A., Baker, F., & Spillers, R. L. (2004). Family caregivers’ quality of life: Influence of health protective stance and emotional strain. Psychology & Health, 19(5), 625–641. https://doi.org/10.1080/0887044042000205594
  • Milberger, S., Marsack-Topolewski, C., Janks, E., Bray, M., Anderson, N., & Samuel, P. S. (2022). Evaluating the benefits of a family support program on the health and well-being of aging family caregivers of adults with intellectual and developmental disabilities. Journal of Gerontological Social Work, 66(3), 413–432. https://doi.org/10.1080/01634372.2022.2110347
  • Papastavrou, E., Andreou, P., Middleton, N., Tsangari, H., & Papacostas, S. (2015). Dementia caregiver burden association with community participation aspect of social capital. Journal of Advanced Nursing, 71(12), 2898–2910. https://doi.org/10.1111/jan.12762
  • Perry, A., & Isaacs, B. (2015). Validity of the Family Quality of Life Survey–2006. Journal of Applied Research in Intellectual Disabilities: JARID, 28(6), 584–588. https://doi.org/10.1111/jar.12141
  • Renwick, R., Brown, I., & Raphael, D. (1998). Quality of life in families that have a son or daughter with developmental disabilities. Centre for Health Promotion, University of Toronto.
  • Rillotta, F., Kirby, N., Shearer, J., & Nettelbeck, T. (2012). Family quality of life of Australian families with a member with an intellectual/developmental disability. Journal of Intellectual Disability Research: JIDR, 56(1), 71–86. https://doi.org/10.1111/j.1365-2788.2011.01462.x
  • Rosén, H., Ahlström, G., & Lexén, A. (2020). Psychometric properties of the WHOQOL-BREF among next of kin to older persons in nursing homes. Health and Quality of Life Outcomes, 18(1), 103. https://doi.org/10.1186/s12955-020-01345-9
  • Samuel, P. S., & DiZazzo-Miller, R. (2019). Family quality of life: Perspectives of family caregivers of people with dementia. Physical & Occupational Therapy in Geriatrics, 37(2), 94–107. https://doi.org/10.1080/02703181.2019.1613467
  • Samuel, P. S., Pociask, F., DiZazzo-Miller, R., Carrellas, A., & LeRoy, B. W. (2016). Concurrent validity of the International Family Quality of Life Survey. Occupational Therapy in Health Care, 30(2), 187–201. https://doi.org/10.3109/07380577.2015.1116129
  • Samuel, P. S., Rillotta, F., & Brown, I. (2012). The development of family quality of life concepts and measures. Journal of Intellectual Disability Research: JIDR, 56(1), 1–16. https://doi.org/10.1111/j.1365-2788.2011.01486.x
  • Samuel, P. S., Tarraf, W., & Marsack, C. N. (2018). Family Quality of Life Survey (FQOLS- 2006): Evaluation of internal consistency, construct, and criterion validity for socioeconomically disadvantaged families. Physical and Occupational Therapy in Pediatrics, 38, 46–63. https://doi.org/10.1080/01942638.2017.1311393
  • Saunders, B. S., Tilford, J. M., Fussell, J. J., Schulz, E. G., Casey, P. H., & Kuo, D. Z. (2015). Financial and employment impact of intellectual disability on families of children with autism. Families, Systems & Health: The Journal of Collaborative Family Healthcare, 33(1), 36–45. https://doi.org/10.1037/fsh0000102
  • Skevington, S. M., Lotfy, M., & O’Connell, K. A. & WHOQOL Group. (2004). The World Health Organization’s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 13(2), 299–310. https://doi.org/10.1023/B:QURE.0000018486.91360.00
  • Tanaka, J. S. (1987). “How big is big enough?” Sample size and goodness of fit in structural equation models with latent variables. Child Development, 58(1), 134–146. https://doi.org/10.2307/1130296
  • Wang, F., Marsack-Topolewski, C. N., DiZazzo-Miller, R., & Samuel, P. S. (2022). Health of aging families: Comparing compound and noncompound caregivers. Journal of Gerontological Social Work, 65(3), 290–304. https://doi.org/10.1080/01634372.2021.1963024

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