Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

16-10-2020 | Original Paper

Couples’ Experiences of Parenting a Child After an Autism Diagnosis: A Qualitative Study

Auteurs: Naomi Downes, Jérôme Lichtlé, Kristopher Lamore, Marie-Joëlle Orêve, Emilie Cappe

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 8/2021

Abstract

After a child is diagnosed with autism, parents’ relationships are impacted as they reorganize their daily lives to support their child’s specific needs. A better understanding of parenting couples’ adaptation is needed to accompany them during this period. This qualitative study explored couples’ experiences after their child’s autism diagnosis. An inductive thematic analysis among ten couple interviews (N = 20) revealed three key themes: emotional experiences, external support, and adaptation. Overall, the quality of couples’ relationships before having a child influenced their relationship after the diagnosis. In general, parents presented complementary coparenting roles, while different opinions about how to raise the child strained their relationship. Helping parents adapt to a diagnosis together could prove to be important for future interventions and research.

vorige artikel A Preliminary Epidemiologic Study of Social (Pragmatic) Communication Disorder Relative to Autism Spectrum Disorder and Developmental Disability Without Social Communication Deficits

volgende artikel Characterization of Special Interests in Autism Spectrum Disorder: A Brief Review and Pilot Study Using the Special Interests Survey

Altiere, M. J. & Von Kluge, S. (2009). Family functioning and coping behaviors in parents of children with autism. Journal of Child and Family Studies, 18, 83–92. https://doi.org/10.1007/s10826-008-9209-y.CrossRef

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorder (5th ed.). Washington, DC: American Psychiatric Association.CrossRef

Arnaud, M., Baduel, S., Guillon, & Q. Rogé, B. (2019). Télésanté : les thérapies médiatisées par les parents [Telehealth: Technological therapies for parents]. Enfance, 1(1), 99–118. https://doi.org/10.3917/enf2.191.0099.CrossRef

Baghdadli, A., Beuzon, S., Bursztejn, C., Constant, J., Desguerre, I., Rogé, B., Squillante, M. Voisin, J., & Aussilloux, C. (2006). Recommandations pour la pratique clinique du dépistage et du diagnostic de l’autisme et des troubles envahissants du développement [Recommendations for clinical practice screening autism and pervasive developmental disorders]. Archives de Pédiatrie, 13(4), 373–378. https://doi.org/10.1016/j.arcped.2005.12.011.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

Bearss, K., Burrell, T. L., Stewart, L. M., & Scahill, L. (2015). Parent training in autism spectrum disorder: What’s in a name? Clinical Child and Family Psychology Review, 18(2), 170–182.CrossRef

Benson, P. R., & Kersh, J. (2011). Marital quality and psychological adjustment among mothers of children with ASD: Cross-sectional and longitudinal adjustment. Journal of Autism and Developmental Disorders, 41, 1675–1685.CrossRef

Bjørnholt, M., & Farstad, G. R. (2012). ‘Am I rambling?’ on the advantages of interviewing couples together. Qualitative Research, 14(1), 3–19. https://doi.org/10.1177/1468794112459671.CrossRef

Bodenmann, G. (2005). Dyadic coping and its significance for marital functioning. In T. A. Revenson, K. Kaysor, & G. Bodenmann (Eds.), Couples coping with stress: Emerging perspectives on dyadic coping (pp. 33–50). Washington DC: American Psychological Association.CrossRef

Bodenmann, G., Meuwly, N., Bradbury, T. N., Gmelch, S., & Ledermann, T. (2010). Stress, anger, and verbal aggression in intimate relationships: Moderating effects of individual and dyadic coping. Journal of Social and Personal Relationships, 27(3), 408–424. https://doi.org/10.1177/0265407510361616.CrossRef

Bodenmann, G., Falconier, M. K., & Randall, A. K. (2019). Dyadic coping: A collection of recent studies. Frontiers Media SA. https://doi.org/10.3389/978-2-88963-031-8.CrossRef

Bonis, S. (2016). Stress and parents of children with autism: A review of literature. Issues in Mental Health Nursing, 37(3), 153–163. https://doi.org/10.3109/01612840.2015.1116030.CrossRefPubMed

Boshoff, K., Gibbs, D., Phillips, R. L., Wiles, L., & Porter, L. (2019). A Meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis. Health & Social Care in the Community, 27(4), 143–157. https://doi.org/10.1111/hsc.12691.CrossRef

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa.CrossRef

Brown, M., Whiting, J., Kahumoku-Fessler, E., Witting, A. B., & Jensen, J. (2020). A dyadic model of stress, coping, and marital satisfaction among parents of children with autism. Family Relations, 69(1), 138–150. https://doi.org/10.1111/fare.12375.CrossRef

Carlsson, E., Miniscalco, C., Kadesjö, B., & Laakso, K. (2016). Negotiating knowledge: Parents' experience of the neuropsychiatric diagnostic process for children with autism. International Journal of Language & Communication Disorders, 51(3), 328–338. https://doi.org/10.1111/1460-6984.12210.CrossRef

Chamak, B., & Bonniau, B. (2018). « Mon fils, c’est ma petite entreprise ! » Les parcours des enfants autistes entre carence de soins et inégalités sociales en Seine-Saint-Denis [“My son is my own little business!” The trajectory of autistic children in Seine-Saint-Denis: shortage of care and social inequality]. Anthropologie & Santé. https://doi.org/10.4000/anthropologiesante.3395

Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162. https://doi.org/10.1177/1362361315573636.CrossRefPubMed

Decroocq, C., Soulas, T., Lichtlé, J., Sankey, C., Engelberg, A., & Cappe, É. (2020). Facilitators’ perspectives on a psychoeducational program for parents of an autistic child. Autism, 24(5), 1273–1285. https://doi.org/10.1177/1362361319899766.CrossRefPubMed

Derguy, C., Roux, S., Portex, M., & M’bailara, K. (2017). An ecological exploration of individual, family, and environmental contributions to parental quality of life in autism. Psychiatry Research, 268, 87–93.CrossRef

Downes, N. & Cappe, É. (2019). Expériences des couples, des grands-parents et de la fratrie: Revue de la littérature nationale et internationale [Couples', grandparents', and siblings' experiences:A national and international literature review]. In C. Derguy and E. Cappe (Eds.), Familles et Troubles du Spectre de l’Autisme [Families and autism] (p. 213–226). Paris, France: Dunod.

Ekas, N. V., Timmons, L., Pruitt, M., Ghilain, C., & Alessandri, M. (2015). The power of positivity: Predictors of relationship satisfaction for parents of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(7), 1997–2007. https://doi.org/10.1007/s10803-015-2362-4.CrossRefPubMed

Favez, N. (2017). Psychologie de la coparentalité [Psychology of co-parenting]. Malakoff: Dunod.CrossRef

Gable, S., Crnic, K., & Belsky, J. (1994). Coparenting within the family system: Influences on children's development. Family Relations: An Interdisciplinary Journal of Applied Family Studies, 43(4), 380–386.CrossRef

García-López, C., Sarriá, E., Pozo, P., & Recio, P. (2016). Supportive dyadic coping and psychological adaptation in couples parenting children with autism spectrum disorder: The role of relationship satisfaction. Journal of Autism and Developmental Disorders, 46(11), 3434–3447.CrossRef

Gau, S. S.-F., Chou, M.-C., Chiang, H.-L., Lee, J.-C., Wong, C.-C., Chou, W.-J., et al. (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6(1), 263–270. https://doi.org/10.1016/j.rasd.2011.05.007.CrossRef

Gentles, S. J., Nicholas, D. B., Jack, S. M., McKibbon, K. A., & Szatmari, P. (2019). Parent engagement in autism-related care: A qualitative grounded theory study. Health Psychology and Behavioral Medicine, 7(1), 1–18.CrossRef

Gentles, S. J., Nicholas, D. B., Jack, S. M., McKibbon, K. A., & Szatmari, P. (2020). Coming to understand the child has autism: A process illustrating parents' evolving readiness for engaging in care. Autism, 24(2), 470–483.CrossRef

Goedeke, S., Shepherd, D., Landon, J., & Taylor, S. (2019). How perceived support relates to child autism symptoms and care-related stress in parents caring for a child with autism. Research in Autism Spectrum Disorders, 60, 36–47.CrossRef

Gouin, J.-P., Scarcello, S., da Estrela, C., Paquin, C., & Barker, E. T. (2016). Dyadic coping and inflammation in the context of chronic stress. Health Psychology, 35(10), 1081–1084. https://doi.org/10.1037/hea0000395.CrossRefPubMed

Guest, G., Namey, E., & Chen, M. (2020). A simple method to assess and report thematic saturation in qualitative research. PLoS ONE, 15(5), e0232076. https://doi.org/10.1371/journal.pone.0232076.CrossRefPubMedPubMedCentral

Harper, A., Dyches, T. T., Harper, J., Roper, S. O., & South, M. (2013). Respite care, marital quality, and stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(11), 2604–2616. https://doi.org/10.1007/s10803-013-1812-0.CrossRefPubMed

Hartley, S. L., Barker, E. T., Seltzer, M. M., Greenberg, J. S., & Floyd, F. J. (2011). Marital satisfaction and parenting experiences of mothers and fathers of adolescents and adults with autism. American Journal on Intellectual and Developmental Disabilities, 116(1), 81–95.CrossRef

Hartley, S. L., Mihaila, I., Otalora-Fadner, H. S., & Bussanich, P. M. (2014). Division of labor in families of children and adolescents with autism spectrum disorder. Family Relations, 63, 627–638. https://doi.org/10.1111/fare.12093.CrossRefPubMedPubMedCentral

Hastings, R. P. (1997). Grandparents of children with disabilities: A review. International Journal of Disability, Development, and Education, 44, 329–340.CrossRef

Haute Autorité de Santé. (2018, February 19th). Autisme de l’enfant : accélérer les étapes jusqu’au diagnostic, agir sans attendre [Autism among children: speed up the steps until diagnosis, act now] [Press release]. Retrieved from https://www.has-sante.fr/jcms/c_2829131/fr/autisme-de-l-enfant-accelerer-les-etapes-jusqu-au-diagnostic-agir-sans-attendre

Heitzman-Powell, L. S., Buzhardt, J., Rusinko, L. C., & Miller, T. M. (2014). Formative evaluation of an ABA outreach training program for parents of children with autism in remote areas. Focus on Autism and Other Developmental Disabilities, 29(1), 23–38.CrossRef

Hill-Chapman, C. R., Herzog, T. K., & Maduro, R. S. (2013). Aligning over the child: Parenting alliance mediates the association of autism spectrum disorder atypicality with parenting stress. Research in Developmental Disabilities, 34(5), 1498–1504. https://doi.org/10.1016/j.ridd.2013.01.004.CrossRefPubMed

Hillman, J. L., Wentzel, M. C., & Anderson, C. M. (2017). Grandparents’ experience of autism spectrum disorder: Identifying primary themes and needs. Journal of Autism and Developmental Disorders, 47(10), 2957–2968. https://doi.org/10.1007/s10803-017-3211-4.CrossRefPubMed

Hirsch, K. H., & Paquin, J. D. (2019). “The Stress of the Situation has Changed us Both”: A grounded theory analysis of the romantic relationship of parents raising children with autism. Journal of Child and Family Studies, 28(10), 2673–2689. https://doi.org/10.1007/s10826-019-01448-y.CrossRef

Hock, R. M., Timm, T. M., & Ramisch, J. L. (2012). Parenting children with autism spectrum disorders: A crucible for couple relationships. Child & Family Social Work, 17(4), 406–415. https://doi.org/10.1111/J.1365-2206.2011.00794.X.CrossRef

Hutton, A. M., & Caron, S. L. (2005). Experiences of families with children with autism in Rural New England. Focus on Autism and Other Developmental Disabilities, 20(3), 180–189. https://doi.org/10.1177/10883576050200030601.CrossRef

Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277.CrossRef

Kayser, K., & Revenson, T. A. (2016). Including the cultural context in dyadic coping: Directions for future research and practice. In M. K. Falconier, A. K. Randall, & G. Bodenmann (Eds.), Couples coping with stress: A cross-cultural perspective (pp. 285–299). New York: Routledge/Taylor & Francis Group.

Kwok, S. Y. C. L., Leung, C. L. K., & Wong, D. F. K. (2014). Marital satisfaction of Chinese mothers of children with autism and intellectual disabilities in Hong Kong. Journal of Disability Research, 58(12), 1156–1171. https://doi.org/10.1111/jir.12116.CrossRef

Lai, W. W., & Oei, T. P. S. (2014). Coping in parents and caregivers of children with autism spectrum disorders (ASD): A review. Review Journal of Autism and Developmental Disorders, 1, 207–224. https://doi.org/10.1007/s40489-014-0021-x.CrossRef

Landa, R. J. (2018). Efficacy of early interventions for infants and young children with, and at risk for, autism spectrum disorders. International Review of Psychiatry, 30(1), 25–39. https://doi.org/10.1080/09540261.2018.1432574.CrossRefPubMed

Le, Y., McDaniel, B. T., Leavitt, C. E., & Feinberg, M. E. (2016). Longitudinal associations between relationship quality and coparenting across the transition to parenthood: A dyadic perspective. Journal of Family Psychology, 30(8), 918–926. https://doi.org/10.1037/fam0000217.CrossRefPubMedPubMedCentral

Lickenbrock, D. M., Ekas, N. V., & Whitman, T. L. (2011). Feeling good, feeling bad: Influences of maternal perceptions of the child and marital adjustment on well-being in mothers of children with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 41(7), 848–858. https://doi.org/10.1007/s10803-010-1105-9.CrossRefPubMed

Lundahl, B. W., Tollefson, D., Risser, H., & Lovejoy, M. C. (2008). A meta-analysis of father involvement in parent training. Research on Social Work Practice, 18(2), 97–106. https://doi.org/10.1177/1049731507309828.CrossRef

MacPhail, C., Khoza, N., Abler, L., & Ranganathan, M. (2016). Process guidelines for establishing Intercoder Reliability in qualitative studies. Qualitative Research, 16(2), 198–212. https://doi.org/10.1177/1468794115577012.CrossRef

Marciano, S. T., Drasgow, E., & Carlson, R. G. (2015). The marital experiences of couples who include a child with autism. The Family Journal, 23(2), 132–140. https://doi.org/10.1177/1066480714564315.CrossRef

May, C. D., Fletcher, R., Dempsey, I., & Newman, L. (2015). Modeling relations among coparenting quality, autism-specific parenting self-efficacy, and parenting stress in mothers and fathers of children with ASD. Parenting: Science and Practice, 15(2), 119–133. https://doi.org/10.1080/15295192.2015.1020145CrossRef

May, C. D., St George, J. M., Fletcher, R. J., Dempsey, I., & Newman, L. K. (2017). Coparenting competence in parents of children with ASD: A marker of coparenting quality. Journal of Autism and Developmental Disorders, 47(10), 2969–2980. https://doi.org/10.1007/s10803-017-3208-z.CrossRefPubMed

Mcgrew, J. H., & Keyes, M. L. (2014). Caregiver stress during the first year after diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorders, 8, 1373–1385.CrossRef

McHale, J. P. (1995). Coparenting and triadic interactions during infancy: The roles of marital distress and child gender. Developmental Psychology, 31(6), 985–996.CrossRef

Mikulincer, M., & Shaver, P. R. (2012). Adult attachment orientations and relationship processes. Journal of Family Theory & Review, 4(4), 259–274.CrossRef

Mulligan, J., MacCulloch, R., Good, B., & Nicholas, D. B. (2012). Transparency, hope, and empowerment: A model for partnering with parents of a child with autism spectrum disorder at diagnosis and beyond. Social Work in Mental Health, 10(4), 311–330. https://doi.org/10.1080/15332985.2012.664487.CrossRef

O’Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A., & Cook, D. A. (2014). Standards for reporting qualitative research: A synthesis of recommendation. Academic Medicine, 89(9), 1245–1251.CrossRef

Pepperell, T. A., Paynter, J., & Gilmore, L. (2018). Social support and coping strategies of parents raising a child with autism spectrum disorder. Early Child Development and Care, 188(10), 1392–1404. https://doi.org/10.1080/03004430.2016.1261338.CrossRef

Peterson, J., & Hawley, D. (1998). Effects of stressors on parenting attitudes and family functioning in a primary prevention program. Family Relations, 47(3), 221–227. https://doi.org/10.2307/584970.CrossRef

Poslawsky, I. E., Naber, F. B., Van Daalen, E., & Van Engeland, H. (2014). Parental reaction to early diagnosis of their children's autism spectrum disorder: an exploratory study. Child Psychiatry and Human Development, 45(3), 294–305. https://doi.org/10.1007/s10578-013-0400-z.CrossRefPubMed

Rabba, A. S., Dissanayake, C., & Barbaro, J. (2019). Parents’ experiences of an early autism diagnosis: Insights into their needs. Research in Autism Spectrum Disorders, 66, 101415. https://doi.org/10.1016/j.rasd.2019.101415.CrossRef

Rankin, J. A., Paisley, C. A., Tomeny, T. S., & Eldred, S. W. (2019). Fathers of youth with autism spectrum disorder: A systematic review of the impact of fathers’ involvement on youth, families, and intervention. Clinical Child and Family Psychology Review. https://doi.org/10.1007/s10567-019-00294-0.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(7), 1609–1620. https://doi.org/10.1007/s10803-013-2028-z.CrossRefPubMed

Rodrigue, J. R., Morgan, S. B., & Geffken, G. R. (1990). Families of autistic children: Psychological functioning of mothers. Journal of Clinical Child Psychology, 19(4), 371–379. https://doi.org/10.1207/s15374424jccp1904_9.CrossRef

Rogé, B. (2019). Diagnostic et intervention précoce dans les TSA : des enjeux de société [Diagnosis and early intervention in autism: Society’s challenges]. Enfance, 1(1), 5–12. https://doi.org/10.3917/enf2.191.0005.CrossRef

Saini, M., Stoddart, K. P., Gibson, M., Morris, R., Barrett, D., Muskat, B., et al. (2015). Couple relationships among parents of children and adolescents with Autism Spectrum Disorder: Findings from a scoping review of the literature. Research in Autism Spectrum Disorders, 17, 142–157. https://doi.org/10.1016/j.rasd.2015.06.014.CrossRef

Sankey, C., Derguy, C., Ilg, J., Clément, C., & Cappe, É. (2019). Supporting parents of a child with Autism Spectrum Disorder: the French awakening. Journal of Autism and Developmental Disorder, 49(3), 1142–1153. https://doi.org/10.1007/s10803-018-3800-x.CrossRef

Sim, A., Cordier, R., Vaz, S., & Falkmer, T. (2016). Relationship satisfaction in couples raising a child with autism spectrum disorder: A systematic review of the literature. Research in Autism Spectrum Disorders, 31, 30–52. https://doi.org/10.1016/j.rasd.2016.07.004.CrossRef

Sim, A., Cordier, R., Vaz, S., Parsons, R., & Falkmer, T. (2017). Relationship satisfaction and dyadic coping in couples with a child with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(11), 3562–3573.CrossRef

Thullen, M., & Bonsall, A. (2017). Co-parenting quality, parenting stress, and feeding challenges in families with a child diagnosed with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(3), 878–886. https://doi.org/10.1007/s10803-016-2988-x.CrossRefPubMed

Van Egeren, L. A. (2004). The development of the coparenting relationship over the transition to parenthood. Infant Mental Health Journal, 25, 453–477. https://doi.org/10.1002/imhj.20019.CrossRef

Vernhet, C., Dellapiazza, F., Blanc, N., Cousson-Gélie, F., Miot, S., Roeyers, H., et al. (2019). Coping strategies of parents of children with autism spectrum disorder: A systematic review. European Child and Adolescent Psychiatry, 28(6), 747–758. https://doi.org/10.1007/s00787-018-1183-3.CrossRefPubMed

Viera, A. J., & Garrett, J. M. (2005). Understanding interobserver agreement: The Kappa statistic. Family Medicine, 37(5), 360–363.PubMed

Wachtel, K., & Carter, A. S. (2008). Reaction to diagnosis and parenting styles among mothers of young children with ASDs. Autism: The international Journal of Research and Practice, 12(5), 575–594. https://doi.org/10.1177/1362361308094505.CrossRef

Weber, P. H. (2012). A comparison of parental stress and marital/couple satisfaction as reported by parents raising children diagnosed with Pervasive Developmental Disorder: An online mixed methods study. (Doctoral dissertation). Available from Proquest. (3497863).

Yi, H., Siu, Q. K. Y., Ngan, O. M. Y., & Chan, D. F. Y. (2019). Parents’ experiences of screening, diagnosis, and intervention for children with autism spectrum disorder. American Journal of Orthopsychiatry, 90(3), 297–311. https://doi.org/10.1037/ort0000433.CrossRef

Yirmiya, N., Seidman, I., Koren-Karie, N., Oppenheim, D., & Dolev, S. (2015). Stability and change in resolution of diagnosis among parents of children with autism spectrum disorder: Child and parental contributions. Development and Psychopathology, 27(4), 1045–1057. https://doi.org/10.1017/S095457941500067X.CrossRefPubMed

Zemp, M., Milek, A., Cummings, E. M., & Bodenmann, G. (2017). Longitudinal interrelations between dyadic coping and coparenting conflict in couples. Journal of Child and Family Studies, 26(8), 2276–2290. https://doi.org/10.1007/s10826-017-0742-4.CrossRef

Titel: Couples’ Experiences of Parenting a Child After an Autism Diagnosis: A Qualitative Study
Auteurs: Naomi Downes
Jérôme Lichtlé
Kristopher Lamore
Marie-Joëlle Orêve
Emilie Cappe
Publicatiedatum: 16-10-2020
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 8/2021
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-020-04744-5

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 8/2021

Collateral Effects of Behavioral Treatment for Problem Behavior on Caregiver Stress

Overcoming Language Barriers between Interventionists and Immigrant Parents of Children with Autism Spectrum Disorder

Brief Report: Associations Between Cognitive Control Processes and Traits of Autism Spectrum Disorder (ASD), attention-Deficit/Hyperactivity Disorder (ADHD) and Anxiety in Children at Elevated and Typical Familial Likelihood for ASD

Healthcare Costs of Pediatric Autism Spectrum Disorder in the United States, 2003–2015

Peripheral Blood S100B Levels in Autism Spectrum Disorder: A Systematic Review and Meta-Analysis

Implicit Semantic Processing of Linguistic and Non-linguistic Stimuli in Adults with Autism Spectrum Disorder