Predictors of the Quality of Life of Informal Carers of Adults on the Autism Spectrum
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Arabnia, H. R., & Tran, Q. N. (2015). Emerging trends in computational biology, bioinformatics, and systems biology: Algorithms and software tools. Morgan Kaufmann.
Arnold, S., Foley, K. R., Hwang, Y. I. J., Richdale, A. L., Uljarevic, M., Lawson, L. P., Cai, R. Y., Falkmer, T., Falkmer, M., Lennox, N. G., & Urbanowicz, A. (2019). Cohort profile: The Australian longitudinal study of adults with autism (ALSAA). BMJ Open, 9(12), e030798.
Bal, V. H., & Lounds Taylor, J. (2019). Advancing understanding of adults: The role of diagnostic confirmation and sample description. Autism, 23(4), 807–810.
Banach, M., Iudice, J., Conway, L., & Couse, L. J. (2010). Family support and empowerment: Post autism diagnosis support group for parents. Social Work with Groups, 33(1), 69–83. https://doi.org/10.1080/01609510903437383
Barrett, S. L., Uljarević, M., Baker, E. K., Richdale, A. L., Jones, C. R. G., & Leekam, S. R. (2015). The Adult Repetitive Behaviours Questionnaire-2 (RBQ-2A): A self-report measure of restricted and repetitive behaviours. Journal of Autism and Developmental Disorders, 45(11), 3680–3692. https://doi.org/10.1007/s10803-015-2514-6
Bédard, M., Molloy, D. W., Squire, L., Dubois, S., Lever, J. A., & O’Donnell, M. (2001). The Zarit Burden Interview: A new short version and screening version. The Gerontologist, 41(5), 652–657.
Bengtson, V. L., & Schrader, S. S. (1982). Parent-child relations. In D. J. Mangen, & W. A. Peterson (Eds.), Research instruments in social gerontology (pp. 115–186). University of Minnesota Press.
Brereton, A. V., Tonge, B. J., & Einfeld, S. L. (2006). Psychopathology in children and adolescents with autism compared to young people with intellectual disability. Journal of Autism and Developmental Disorders, 36(7), 863–870.
Buhr, K., & Dugas, M. J. (2009). The role of fear of anxiety and intolerance of uncertainty in worry: An experimental manipulation. Behaviour Research and Therapy, 47(3), 215–223. https://doi.org/10.1016/j.brat.2008.12.004
Burke, M., & Heller, T. (2016). Individual, parent and social-environmental correlates of caregiving experiences among parents of adults with autism spectrum disorder. Journal of Intellectual Disability Research, 60(5), 401–411. https://doi.org/10.1111/jir.12271
Cadman, T., Eklund, H., Howley, D., Hayward, H., Clarke, H., Findon, J., Xenitidis, K., Murphy, D., Asherson, P., & Glaser, K. (2012). Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. Journal of the American Academy of Child and Adolescent Psychiatry, 51(9), 879–888. https://doi.org/10.1016/j.jaac.2012.06.017
Carleton, R. N., Norton, M. P. J., & Asmundson, G. J. (2007). Fearing the unknown: A short version of the Intolerance of Uncertainty Scale. Journal of Anxiety Disorders, 21(1), 105–117.
Carver, C. S. (1997). You want to measure coping but your protocol’ too long: Consider the brief COPE. International Journal of Behavioral Medicine, 4(1), 92. https://doi.org/10.1207/s15327558ijbm0401_6
Chang, H.-Y., Chiou, C.-J., & Chen, N.-S. (2010). Impact of mental health and caregiver burden on family caregivers’ physical health. Archives of Gerontology and Geriatrics, 50(3), 267–271. https://doi.org/10.1016/j.archger.2009.04.006
Chisholm, D., Knapp, M. R. J., Knudsen, H. C., Amaddeo, F., Gaite, L., & van Wijngaarden, B. (2000). Client Socio-Demographic and Service Receipt Inventory—European Version: Development of an instrument for international research: EPSILON Study 5. British Journal of Psychiatry, 177(S39), s28–s33. https://doi.org/10.1192/bjp.177.39.s28
Davis, K. L., Marin, D. B., Kane, R., Patrick, D., Peskind, E. R., Raskind, M. A., & Puder, K. L. (1997). The Caregiver Activity Survey (CAS): Development and validation of a new measure for caregivers of persons with Alzheimer’s disease. International Journal of Geriatric Psychiatry, 12(10), 978–988.
Feise, R. J. (2002). Do multiple outcome measures require p-value adjustment? BMC Medical Research Methodology, 2(1), 1–4.
Frieling, M. A., Davis, W. R., & Chiang, G. (2013). The SF-36v2 and SF-12v2 health surveys in New Zealand: Norms, scoring coefficients and cross-country comparisons. Australian and New Zealand Journal of Public Health, 37(1), 24–31. https://doi.org/10.1111/1753-6405.12006
Greenberg, J. S., Seltzer, M. M., Krauss, M. W., Chou, R. J. A., & Hong, J. (2004). The effect of quality of the relationship between mothers and adult children with schizophrenia, autism, or down syndrome on maternal well-being: The mediating role of optimism. American Journal of Orthopsychiatry, 74(1), 14–25.
Grootscholten, I. A. C., van Wijngaarden, B., & Kan, C. C. (2018). High functioning autism spectrum disorders in adults: Consequences for primary caregivers compared to schizophrenia and depression. Journal of Autism and Developmental Disorders, 48(6), 1920–1931. https://doi.org/10.1007/s10803-017-3445-1
Gross, J. J., & John, O. P. (2003). Individual differences in two emotion regulation processes: Implications for affect, relationships, and well-being. Journal of Personality and Social Psychology, 85(2), 348.
Hare, D. J., Pratt, C., Burton, M., Bromley, J., & Emerson, E. (2004). The health and social care needs of family carers supporting adults with autistic spectrum disorders. Autism, 8(4), 425–444.
Hastings, R. P. (2002). Parental stress and behaviour problems of children with developmental disability. Journal of Intellectual and Developmental Disability, 27(3), 149–160. https://doi.org/10.1080/1366825021000008657
Herrema, R., Garland, D., Osborne, M., Freeston, M., Honey, E., & Rodgers, J. (2017). Mental wellbeing of family members of autistic adults. Journal of Autism and Developmental Disorders, 47(11), 3589–3599.
Hines, M., Balandin, S., & Togher, L. (2014). The stories of older parents of adult sons and daughters with autism: A balancing act. Journal of Applied Research in Intellectual Disabilities, 27(2), 163–173.
Hoekstra, R. A., Vinkhuyzen, A. A., Wheelwright, S., Bartels, M., Boomsma, D. I., Baron-Cohen, S., Posthuma, D., & van der Sluis, S. (2011). The construction and validation of an abridged version of the autism-spectrum quotient (AQ-Short). Journal of Autism and Developmental Disorders, 41(5), 589–596.
Jafari, M., & Ansari-Pour, N. (2019). Why, when and how to adjust your p values? Cell Journal, 20(4), 604–607. https://doi.org/10.22074/cellj.2019.5992
King, G., King, S., Rosenbaum, P., & Goffin, R. (1999). Family-centered caregiving and well-being of parents of children with disabilities: Linking process with outcome. Journal of Pediatric Psychology, 24(1), 41–53. https://doi.org/10.1093/jpepsy/24.1.41
Kroenke, K., Spitzer, R. L., & Williams, J. B. W. (2001). The PHQ-9: Validity of a brief depression severity measure. Journal of General Internal Medicine, 16(9), 606–613. https://doi.org/10.1046/j.1525-1497.2001.016009606.x
Lebeau, R. T., Glenn, D. E., Hanover, L. N., Beesdo-Baum, K., Wittchen, H.-U., & Craske, M. G. (2012). A dimensional approach to measuring anxiety for DSM-5. International Journal of Methods in Psychiatric Research, 21(4), 258–272. https://doi.org/10.1002/mpr.1369
Maenner, M. J., Smith, L. E., Hong, J., Makuch, R., Greenberg, J. S., & Mailick, M. R. (2013). Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities. Disability and Health Journal, 6(1), 8–17. https://doi.org/10.1016/j.dhjo.2012.08.005
Marsack, C., & Samuel, P. (2017). Mediating effects of social support on quality of life for parents of adults with autism. Journal of Autism and Developmental Disorders, 47(8), 2378–2389. https://doi.org/10.1007/s10803-017-3157-6
Mascha, E. J., Dalton, J. E., Kurz, A., & Saager, L. (2013). Understanding the mechanism: Mediation analysis in randomized and nonrandomized studies. Anesthesia and Analgesia, 117(4), 980–994. https://doi.org/10.1213/ANE.0b013e3182a44cb9
Maughan, A. L., & Weiss, J. A. (2017). Parental outcomes following participation in cognitive behavior therapy for children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(10), 3166–3179. https://doi.org/10.1007/s10803-017-3224-z
Mohr, C., Tonge, B., & Einfeld, S. (2005). The development of a new measure for the assessment of psychopathology in adults with intellectual disability. Journal of Intellectual Disability Research, 49(7), 469–480.
Nahlen Bose, C., Bjorling, G., Elfstrom, M. L., Persson, H., & Saboonchi, F. (2015). Assessment of coping strategies and their associations with health related quality of life in patients with chronic heart failure: The brief COPE restructured. Cardiology Research, 6(2), 239–248. https://doi.org/10.14740/cr385w
Ohaeri, J. U., & Awadalla, A. W. (2009). The reliability and validity of the short version of the WHO Quality of Life Instrument in an Arab general population. Annals of Saudi Medicine, 29(2), 98–104. https://doi.org/10.4103/0256-4947.51790
Rattaz, C., Michelon, C., Roeyers, H., & Baghdadli, A. (2017). Quality of life in parents of young adults with ASD: EpiTED cohort. Journal of Autism and Developmental Disorders, 47(9), 2826–2837. https://doi.org/10.1007/s10803-017-3197-y
Renty, J., & Roeyers, H. (2007). Individual and marital adaptation in men with autism spectrum disorder and their spouses: The role of social support and coping strategies. Journal of Autism and Developmental Disorders, 37(7), 1247–1255. https://doi.org/10.1007/s10803-006-0268-x
Sarason, I. G., Sarason, B. R., Shearin, E. N., & Pierce, G. R. (1987). A brief measure of social support: Practical and theoretical implications. Journal of Social and Personal Relationships, 4(4), 497–510.
Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40(2), 167–178. https://doi.org/10.1007/s10803-009-0844-y
Sonido, M. T., Hwang, Y. I., Trollor, J. N., & Arnold, S. R. C. (2019). The mental well-being of informal carers of adults on the autism spectrum: A systematic review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-019-00177-8
Spitzer, R. L., Williams, J. B. W., Kroenke, K., et al. (2014). Test review: Patient Health Questionnaire–9 (PHQ-9). Rehabilitation Counseling Bulletin, 57(4), 246–248. https://doi.org/10.1177/0034355213515305
Su, S. W., & Wang, D. (2019). The reliability and validity of short form-12 health survey version 2 for Chinese older adults. Iranian Journal of Public Health, 48(6), 1014–1024.
Tomeny, T. S., Barry, T. D., Fair, E. C., & Riley, R. (2017). Parentification of adult siblings of individuals with autism spectrum disorder. Journal of Child and Family Studies, 26(4), 1056–1067.
Üstün, T. B., Chatterji, S., Kostanjsek, N., Rehm, J., Kennedy, C., Epping-Jordan, J., Saxena, S., Korff, M. V., & Pull, C. (2010). Developing the World Health Organization disability assessment schedule 2.0. Bulletin of the World Health Organization, 88, 815–823.
Ware, J. E., Kosinski, M., & Keller, S. D. (1996). A 12-Item short-form health survey: Construction of scales and preliminary tests of reliability and validity. Medical Care, 34(3), 220–233.
WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558.
World Health Organisation. (2009). Meeting of regional experts on promotion of mental well-being. India: World Health Organisation. Retrieved from https://apps.who.int/iris/bitstream/handle/10665/205514/B4423.pdf?sequence=1&isAllowed=y