Top

Gepubliceerd in:

04-04-2019 | Original Paper

Quality of Life in Immigrant Parents of Children With Autism Spectrum Disorder: A Comparison With Parents From the Host Culture

Auteurs: Marie Millau, Mélina Rivard, Catherine Mello

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 6/2019

Abstract

Objectives

Studies conducted on families of children with autism spectrum disorder (ASD) indicate that the period following the child’s diagnosis can be challenging, especially for immigrant families. Indeed, they tend to have additional difficulties in accessing and using ASD diagnosis and early intervention services. To date, few studies have contrasted the experiences of immigrant and native families.

Method

During the period following their child’s ASD diagnosis, 104 immigrant and Canadian-born mothers and fathers completed the Beach Center FQOL Scale and provided ratings of perceived support.

Results

Immigrant families were less satisfied with their FQOL than Canadian-born parents, but no gender differences were observed. However, gender and immigration-status related patterns emerged with respect to the relative importance and satisfaction levels across dimensions of FQOL. Additionally, fewer immigrant families reported having access to external support, a predictor of FQOL, than Canadian families.

Conclusion

Although no statistically significant gender differences emerged, patterns in the data suggest that each parent may benefit from different services. Overall, these findings highlight the importance of developing programs that take into account parents’ gender and cultural background and provide means of developing external support networks.

vorige artikel Service Intensity/Level of Care Determination in a Child Welfare Population

volgende artikel Adolescent Temperament, but Not Age or Gender, Is Associated with Parental Socialization of Positive Affect

Abidin, R. R. (1995). Manual for the parenting stress index. 3rd ed. Charlottesville, VA: Pediatric Psychology Press.

Alshamri, K. H. (2016). Family quality of life for families of children with intellectual disability in Saudi Arabia (Doctoral dissertation). Western Sydney University. http://researchdirect.uws.edu.au/islandora/object/uws%3A40063.

Baker-Ericzen, M. J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities, 30, 194–204. https://doi.org/10.2511/rpsd.30.4.194.CrossRef

Balcells-Balcells, A., Giné, C., Guàrdia-Olmos, J., & Summers, J. A. (2010). Family quality of life: Adaptation to Spanish population of several family support questionnaires. Journal of Intellectual Disability Research, 55, 1151–1163. https://doi.org/10.1111/j.1365-2788.2010.01350.x.CrossRefPubMed

Barrio, C. (2000). The cultural relevance of community support programs. Psychiatric Services, 51, 879–884. https://doi.org/10.1176/appi.ps.51.7.879.CrossRefPubMed

Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51, 702–714. https://doi.org/10.1111/j.1365-2788.2007.00960.x.CrossRefPubMed

Bayram, N., Thorburn, D., Demirhan, H., & Bilgel, N. (2007). Quality of life among Turkish immigrants in Sweden. Quality of Life Research, 16, 1319–1333. https://doi.org/10.1007/s11136-007-9249-6.CrossRefPubMed

Belizaire, L. S., & Fuertes, J. N. (2011). Attachment, coping, acculturative stress, and quality of life among Haitian immigrants. Journal of Counseling & Development, 89, 89–97. https://doi.org/10.1002/j.1556-6678.2011.tb00064.x.CrossRef

Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavioral disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual and Developmental Disability, 50, 184–198. https://doi.org/10.1111/j.1365-2788.2005.00768.x.CrossRef

Brookman-Frazee, L., Baker-Ericzén, M., Stadnick, N., & Taylor, R. (2012). Parent perspectives on community mental health services for children with autism spectrum disorders. Journal of Child and Family Studies, 21, 533–544. https://doi.org/10.1007/s10826-011-9506-8.CrossRef

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, 238–245. https://doi.org/10.1111/j.1741-1130.2006.00085.x.CrossRef

Brown, I., Anand, S., Fung, A. W. L., Isaacs, B. J., & Baum, N. (2003). Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Disabilities, 15, 207–230. https://doi.org/10.1023/A:1024931022773.CrossRef

Cappe, E, Chatenoud, C., & Paquet, A. (2014). Les caractéristiques des personnes ayant un TSA et des autres membres de la famille influençant l’adaptabilité familiale [Characteristics of persons with autism spectrum disorder and order family members that influence family adaptability]. In C. Chatenoud, J.-C. Kalubi, & A. Paquet (Eds.) La famille et la personne ayant un trouble du spectre de l’autisme: comprendre, soutenir et agir autrement (pp. 51–69). Québec, QC: Éditions Nouvelles.

Cohen, S. R., Holloway, S. D., Domínguez‐Pareto, I., & Kuppermann, M. (2014). Receiving or believing in family support? Contributors to the life quality of Latino and non‐Latino families of children with intellectual disability. Journal of Intellectual Disability Research, 58, 333–345. https://doi.org/10.1111/jir.12016.CrossRefPubMed

Cohen, S. R., & Miguel, J. (2018). Amor and social stigma: ASD beliefs among immigrant Mexican parents. Journal of Autism and Developmental Disorders, 48, 1995–2009. https://doi.org/10.1007/s10803-017-3457-x.CrossRefPubMed

Corcoran, J., Berry, A., & Hill, S. (2015). The lived experience of US parents of children with autism spectrum disorders: a systematic review and meta-synthesis. Journal of Intellectual Disabilities, 19, 356–366. https://doi.org/10.1177/1744629515577876.CrossRefPubMed

Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54, 266–280. https://doi.org/10.1111/j.1365-2788.2010.01258.x.CrossRefPubMed

Daley, T. C., & Sigman, M. D. (2002). Diagnostic conceptualization of autism among Indian psychiatrists, psychologists, and pediatricians. Journal of Autism and Developmental Disorders, 32, 13–23.CrossRefPubMed

Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal on Autism and Developmental Disorders, 38, 1278–1291. https://doi.org/10.1007/s10803-007-0512-z.CrossRef

Dardas, L. A., & Ahmad, M. M. (2015). For fathers raising children with autism, do coping strategies mediate or moderate the relationship between parenting stress and quality of life? Research in Developmental Disabilities, 36, 620–629. https://doi.org/10.1016/j.ridd.2014.10.047.CrossRef

DeJong, G. F. (2000). Expectations, gender, and norms in migration decision-making. Population Studies, 54, 307–319. https://doi.org/10.1080/713779089.CrossRef

Donaldson, S. O., Elder, J. H., Self, E. H., & Christie, M. B. (2011). Fathers’ perceptions of their roles during in‐home training for children with autism. Journal of Child and Adolescent Psychiatric Nursing, 24, 200–207. https://doi.org/10.1111/j.1744-6171.2011.00300.x.CrossRefPubMed

Dunst, C. J., & Bruder, M. B. (2002). Valued outcomes of service coordination, early intervention, and natural environments. Exceptional Children, 68, 361–375. https://doi.org/10.1177/001440290206800305.CrossRef

Families Special Interest Research Group of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (FSIRG IASSID; 2012). Families supporting a child with intellectual or developmental disabilities: The current state of knowledge. Journal of Applied Research in Intellectual Disabilities, 27, 420–430. https://doi.org/10.1111/jar.12078.

Fombonne, E. (2009). Epidemiology of pervasive developmental disorders. Pediatric Research, 65, 591–598. https://doi.org/10.1203/PDR.0b013e31819e7203.CrossRefPubMed

Gardiner, E., & French, C. (2011). The relevance of cultural sensitivity in early intervention. Exceptionality Education International, 21, 34–49.

Gardiner, E., & Iarocci, G. (2012). Unhappy (and happy) in their own way: A developmental psychopathology perspective on quality of life for families living with developmental disability with and without autism. Research in Developmental Disabilities, 33, 2177–2192. https://doi.org/10.1016/j.ridd.2012.06.014.CrossRefPubMed

Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27, 215–222. https://doi.org/10.1080/1366825021000008639.CrossRef

Gray, D. E. (2006). Coping over time: The parents of children with autism. Journal of Intellectual Disability Research, 50, 970–976. https://doi.org/10.1111/j.1365-2788.2006.00933.x.CrossRefPubMed

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, 1069–1083. https://doi.org/10.1111/j.1741-3737.2006.00314.x.CrossRef

Hoffman, C. D., Sweeney, D. P., Lopez-Wagner, M. C., Hodge, D., Nam, C. Y., & Botts, B. H. (2008). Children with autism: Sleep problems and mothers’ stress. Focus on Autism and Other Developmental Disabilities, 23, 155–165. https://doi.org/10.1177/1088357608316271.CrossRef

Hodgetts, S., Nicholas, D., & Zwaigenbaum, L. (2013). Home sweet home? Families’ experiences with aggression in children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 28, 166–174. https://doi.org/10.1177/1088357612472932.CrossRef

Jokinen, N. S. M. (2008). Family quality of life in the context of aging and intellectual disability. Alberta, Canada: University of Calgary. Unpublished doctoral dissertation.

Kayfitz, A., Gragg, M., & Orr, R. (2009). Positive experiences of mothers and fathers of children with autism. Journal of Applied Research in Intellectual Disabilities, 23, 337–343. https://doi.org/10.1111/j.1468-3148.2009.00539.x.CrossRef

Klingner, J. K., Blanchett, W. J., & Harry, B. (2009). Race, culture, and developmental disabilities. In S. L. Odom, R. H. Horner, M. Snell & J. Blacher (Eds.), Handbook on Developmental Disabilities (pp. 55–75). New York, NY: Guilford Press.

Lai, W. W., Goh, T. J., Oei, T. P., & Sung, M. (2015). Coping and well-being in parents of children with autismspectrum disorders (ASD). Journal of Autism and Developmental Disorders, 45, 2582–2593. https://doi.org/10.1007/s10803-015-2430-9.CrossRefPubMed

Lazarus, R. S., & Folkman, S. (1984). S tress, appraisal and coping. New York, NY: Springer.

Lazarus, R. S. (2006). Emotions and interpersonal relationships: Toward a person‐centered conceptualization of emotions and coping. Journal of Personality, 74, 9–46. https://doi.org/10.1111/j.1467-6494.2005.00368.x.CrossRefPubMed

Lin, C., Tsai, Y., & Chang, H. (2008). Coping mechanisms of parents of children recently diagnosed with Autism in Taiwan: A qualitative study. Journal of Clinical Nursing, 17, 2733–2740. https://doi.org/10.1111/j.1365-2702.2008.02456.x.CrossRefPubMed

Luong, J., Yoder, M. K., & Canham, D. (2009). Southeast asian parents raising a child with Autism: A qualitative investigation of coping styles. The. Journal of School Nursing, 25, 222–229. https://doi.org/10.1177/1059840509334365.CrossRef

Lyons, A. M., Leon, S. C., Phelps, C. E. R., & Dunleavy, A. M. (2010). The impact of child symptom severity on stress among parents of children with ASD: The moderating role of coping styles. Journal of Child and Family Studies, 19, 516–524. https://doi.org/10.1007/s10826-009-9323-5.CrossRef

Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51, 141–153. https://doi.org/10.1352/1934-9556-51.3.141.CrossRefPubMed

Mähönen, T. A., Leinonen, E., & Jasinskaja-Lahti, I. (2013). Met expectations and the wellbeing of diaspora immigrants: A longitudinal study. International Journal of Psychology, 48, 324–333. https://doi.org/10.1080/00207594.2012.662278.CrossRefPubMed

Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., & Shattuck, P. T. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99, 493–498. https://doi.org/10.2105/AJPH.2007.131243.CrossRefPubMedPubMedCentral

Matson, J. L., & Nebel-Schwalm, M. (2007). Assessing challenging behaviors in children with autism spectrum disorders: A review. Research in Developmental Disabilities, 28, 567–579. https://doi.org/10.1016/j.ridd.2006.08.001.CrossRefPubMed

Masten, A. S., Burt, K. B., Roisman, G. I., Obradović, J., Long, J. D., & Tellegen, A. (2004). Resources andresilience in the transition to adulthood: Continuity and change. Development and Psychopathology, 16, 1071–1094. https://doi.org/10.1017/S0954579404040143.CrossRefPubMed

McStay, R., Trembath, D., & Dissanayake, C. (2014). Stress and family quality of life in parents of children with autism spectrum disorder: Parent gender and the double ABCX model. Journal of Autism and Developmental Disorders, 44, 3101–3118. https://doi.org/10.1007/s10803-014-2178-7.CrossRefPubMed

Mello, C., Rivard, M., & Terroux, A. (2018). Quality of life in families of young children with autism spectrum disorder at intake. Poster presented at the 2018 Annual Meeting of International Society for Autism Research, Rotterdam, Netherlands.

Meral, B. F., Cavkaytar, A., Turnbull, A. P., & Wang, M. (2013). Family quality of life of Turkish families who have children with intellectual disabilities and autism. Research and Practice for Persons with Severe Disabilities, 38, 233–246. https://doi.org/10.1177/154079691303800403.CrossRef

Millau, M, Rivard, M, Mercier, C., & Mello, C. (2016). Parenting stress in immigrant families of children with an autism spectrum disorder: A comparison with families from the host culture. In C. Roland-Lévy, P. Denoux, B. Voyer, P. Boski, W. K. Gabrenya Jr (Eds.), Unity, diversity, and culture: Research and Scholarship Selected from the 22nd Congress of the International Association for Cross-Cultural Psychology (pp. 312–319). Melbourne, Florida USA: IACCP. www.iaccp.org.

Montes, G., & Halterman, J. S. (2007). Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics, 119, e1040–e1046. https://doi.org/10.1542/peds.2006-2819.CrossRefPubMed

Mugno, D., Ruta, L., D’Arrigo, V. G., & Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22 https://doi.org/10.1186/1477-7525-5-22.CrossRefPubMedPubMedCentral

Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670–684. https://doi.org/10.1016/j.rasd.2009.01.004.CrossRef

Nussbaum, J. F. (2007). Life span communication and quality of life. Journal of Communication., 57, 1–7. https://doi.org/10.1111/j.1460-2466.2006.00325.x.CrossRef

Parellada, M., Boada, L., Moreno, C., Llorente, C., Romo, J., Muela, C., & Arango, C. (2013). Specialty care programme for autism spectrum disorders in an urban population: A case-management model for health care delivery in an ASD population. European Psychiatry, 28, 102–109. https://doi.org/10.1016/j.eurpsy.2011.06.004.CrossRefPubMed

Park, J., Hoffman, L., Marquis, J., Turnbull, A. P., Poston, D., Mannan, H., & Nelson, L. L. (2003). Toward assessing family outcomes of service delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research, 4, 367–384. https://doi.org/10.1046/j.1365-2788.2003.00497.x.CrossRef

Parkhomenko, D. (2016). Quality of life and migration experiences among russian speaking immigrants to the United States of America (Unpublished doctoral dissertation). The Chicago School of Professional Psychology.

Parpa, E., Katsantonis, N., Tsilika, E., Galanos, A., Sassari, M., & Mystakidou, K. (2016). Psychometric properties of the family quality of life scale in Greek families with intellectual disabilities. Journal of Developmental and Physical Disabilities, 28, 393–405. https://doi.org/10.1007/s10882-016-9477-1.CrossRef

Petalas, M. A., Hastings, R. P., Nash, S., Hall, L. M., Joannidi, H., & Dowey, A. (2012). Psychological adjustment and sibling relationships in siblings of children with autism spectrum disorders: Environmental stressors and the broad autism phenotype. Research in Autism Spectrum Disorders, 6, 546–555. https://doi.org/10.1016/j.rasd.2011.07.015.CrossRef

Piazza, V. E., Floyd, F. J., Mailick, M. R., & Greenberg, J. S. (2014). Coping and psychological health ofaging parents of adult children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 119, 186–198. https://doi.org/10.1352/1944-7558-119.2.186.CrossRefPubMedPubMedCentral

Poirier, N., & Goupil, G. (2008). Processus diagnostique des personnes présentant un trouble envahissant du développement au Québec: Expérience des parents [Diagnostic process for persons with a pervasive developmental disorder in Québec: Parents’ experiences]. Journal on Developmental Disabilities, 14, 19–28.

Rivard, M., Mercier, C., Mestari, Z., Terroux, A., Mello, C., & Bégin, J. (2017). Psychometric Properties of the Beach Center Family Quality of Life in French-speaking families with a preschool-aged child diagnosed with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 122, 439–452. https://doi.org/10.1352/1944-7558-122.5.439.CrossRefPubMed

Rivard, M., Terroux, A., Parent-Boursier, C., & Mercier, C. (2014). Determinants of stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44, 1609–1620. https://doi.org/10.1007/s10803-013-2028-z.CrossRefPubMed

Roth, B. M., Kralovic, S., Roizen, N. J., Spannagel, S. C., Minich, N., & Knapp, J. (2016). Impact of autism navigator on access to services. Journal of Developmental & Behavioral Pediatrics, 37, 188–195. https://doi.org/10.1097/DBP.0000000000000261.CrossRef

Schalock, R. L., Brown, I., Brown, R., Cummins, R. A., Felce, D., Matikka, L., & Parmenter, T. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts. Journal of Information, 40, 457–470. https://doi.org/10.1352/0047-6765(2002)0402.0.CO;2.CrossRef

Schlebusch, L., Dada, S., & Samuels, A. E. (2017). Family quality of life of South African families raising children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47, 1966–1977. https://doi.org/10.1007/s10803-017-3102-8.CrossRefPubMed

Sharpe, D. L., & Baker, D. L. (2007). Financial issues associated with having a child with autism. Journal of Family and Economic Issues, 28, 247–264. https://doi.org/10.1007/s10834-007-9059-6.CrossRef

Söderström, S. (2014). Lost in translation? Communication challenges in minority families’ and healthcare workers’ interactions. Disability & Society, 29, 807–820. https://doi.org/10.1080/09687599.2013.848783.CrossRef

Statistics Canada (2017). 2016 Census topic: Immigration and ethnocultural diversity. https://www12.statcan.gc.ca/census-recensement/2016/rt-td/imm-eng.cfm

Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis, J., Hoffman, L., Mannan, H., & Wang, M. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49, 777–783. 10.1352/0047 6765(2002)040,0457:CMAAOQ.2.0.CO;2. https://doi.org/10.1111/j.1365-2788.2005.00751.x.

Svraka, E., Loga, S., & Brown, I. (2011). Family quality of life: Adult school children with intellectual disabilities in Bosnia and Herzegovina. Journal of Intellectual Disability Research, 1434, 1–8. https://doi.org/10.1111/j.1365-2788.2011.01434.x.CrossRef

Turnbull, A. P., Summers, J. A., Lee, S. H., & Kyzar, K. (2007). Conceptualization and measurement of family outcomes associated with families of individuals with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13, 346–356. https://doi.org/10.1002/mrdd.20174.CrossRefPubMed

Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36–49. https://doi.org/10.1016/j.rasd.2015.11.008.CrossRef

Wang, M., Summers, J. A., Little, T., Turnbull, A., Poston, D., & Mannan, H. (2006). Perspectives of fathers and mothers of children in early intervention programmes in assessing family quality of life. Journal of Intellectual Disability Research, 50, 977–988. https://doi.org/10.1111/j.1365-2788.2006.00932.x.CrossRefPubMed

Ward, C. A., Bochner, S., & Furnham, A. (2001). The psychology of culture shock. Hove England: Routledge.

The WHOQOL Group. (1994). Development of the WHOQOL: Rationale and current status. International Journal of Mental Health, 23, 24–56. https://doi.org/10.1080/00207411.1994.11449286.CrossRef

Williford, A. P., Calkins, S. D., & Keane, S. P. (2007). Predicting change in parenting stress across early childhood: Child and maternal factors. Journal of Abnormal Child Psychology, 35, 251–263. https://doi.org/10.1007/s10802-006-9082-3.CrossRefPubMed

Wolery, M., & Garfinkle, A. N. (2002). Measures in intervention research with young children who have autism. Journal of Autism and Developmental Disorders, 32, 463–478. https://doi.org/10.1023/A:1020598023809.CrossRefPubMed

Titel: Quality of Life in Immigrant Parents of Children With Autism Spectrum Disorder: A Comparison With Parents From the Host Culture
Auteurs: Marie Millau
Mélina Rivard
Catherine Mello
Publicatiedatum: 04-04-2019
Uitgeverij: Springer US
Gepubliceerd in: Journal of Child and Family Studies / Uitgave 6/2019
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI: https://doi.org/10.1007/s10826-019-01395-8

Andere artikelen Uitgave 6/2019

Parenting Intervention Combined with Acceptance and Commitment Therapy: Processes of Change

Original Paper

Adolescent Temperament, but Not Age or Gender, Is Associated with Parental Socialization of Positive Affect

Original Paper

Relationship Between Forms of Aggression and Social Status in South Korean Primary School Peer Groups

Original Paper

Making it Meaningful: Caregiver Goal Selection in Positive Behavioral Support

Open Access
Original Paper

Negative Self-Statements Mediate Social Anxiety and Depressive Symptomatology in Youth: The Role of Working Memory

Original Papers

Adolescent Future Expectations Scale for Parents (AFES-p): Development and Validation

Original Paper