Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

03-01-2024 | Original Article

Parental Quality of Life and Impact of Multidisciplinary Intervention for Children with Autism Spectrum Disorders: A Qualitative Study

Auteurs: Chiara Fante, Raffaele De Luca Picione, Barbara Dioni, Tommaso Manari, Cinzia Raffin, Francesca Capelli, Christian Franceschini, Vittorio Lenzo, Alessandro Musetti

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 1/2025

Abstract

The presence of a child with Autism Spectrum Disorder (ASD) in the family can have a negative impact on parental Quality of Life (QoL), but evidence on how treatments for children with ASD can affect parental QoL is currently limited. In this qualitative study, we develop a semi-structured interview in order to investigate the impact of ASD on the QoL of mothers and fathers from a subjective perspective, as well as the effect of the intervention on their QoL and adjustment process. The sample consisted of 31 parents of children with ASD severity 2 or 3, aged 5 to 11 years, undergoing a multidisciplinary intervention. In order to identify emerging themes from the interview transcripts, a Thematic Analysis was conducted using a bottom-up approach. We identified three main themes relating to parental QoL (ASD impact on QoL, useful external resources, QoL improvement-related factors) and five themes relating to parents’ views on the intervention (positive impact on parent, dissatisfaction with previous interventions, parental involvement, useful features, critical issues). The results provide indications of the process of parental adaptation and the components of interventions that foster an improvement in their QoL. In conclusion, living with a child with ASD can have a significant influence on a parents’ QoL, not just physically and emotionally, but also in terms of general goals, family structure, and social interactions.

vorige artikel Profiling Autism and Attention Deficit Hyperactivity Disorder Traits in Children with SYNGAP1-Related Intellectual Disability

volgende artikel Lockdown Drills and Young Children with Autism Spectrum Disorder: Practitioner Confidence, Experiences, and Perceptions

Abolkheirian, S., Sadeghi, R., & Shojaeizadeh, D. (2022). What do parents of children with autism spectrum disorder think about their quality of life? A qualitative study. Journal of Education and Health Promotion, 11(1), 169. https://doi.org/10.4103/jehp.jehp_887_21.CrossRefPubMed

American Psychiatric Association (2022). Diagnostic and statistical manual of mental disorders: DSM-5-TR (5th edition, text rev.). American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425787.

Anan, R. M., Warner, L. J., McGillivary, J. E., Chong, I. M., & Hines, S. J. (2008). Group Intensive Family Training (GIFT) for preschoolers with autism spectrum disorders. Behavioral Interventions, 23(3), 165–180. https://doi.org/10.1002/bin.262.CrossRef

Baghdadli, A., Pry, R., Michelon, C., & Rattaz, C. (2014). Impact of autism in adolescents on parental quality of life. Quality of Life Research, 23(6), 1859–1868. https://doi.org/10.1007/s11136-014-0635-6.CrossRefPubMed

Bourke-Taylor, H., Pallant, J. F., Law, M., & Howie, L. (2012). Predicting mental health among mothers of school-aged children with developmental disabilities: The relative contribution of child, maternal and environmental factors. Research in Developmental Disabilities, 33(6), 1732–1740. https://doi.org/10.1016/j.ridd.2012.04.011.CrossRefPubMed

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

Bray, L., Carter, B., Sanders, C., Blake, L., & Keegan, K. (2017). Parent-to-parent peer support for parents of children with a disability: A mixed method study. Patient Education and Counseling, 100(8), 1537–1543. https://doi.org/10.1016/j.pec.2017.03.004.CrossRefPubMed

Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services. Autism, 8(4), 409–423. https://doi.org/10.1177/1362361304047224.CrossRefPubMed

Cappe, E., Wolff, M., Bobet, R., & Adrien, J. L. (2011). Quality of life: A key variable to consider in the evaluation of adjustment in parents of children with autism spectrum disorders and in the development of relevant support and assistance programmes. Quality of Life Research, 20(8), 1279–1294. https://doi.org/10.1007/s11136-011-9861-3.CrossRefPubMed

Cooper, J. O., Heron, T. E., & Heward, W. L. (2007). Applied behavior analysis. Pearson Education.

Corsano, P., Musetti, A., Guidotti, L., & Capelli, F. (2017). Typically developing adolescents’ experience of growing up with a brother with an autism spectrum disorder. Journal of Intellectual & Developmental Disability, 42(2), 151–161. https://doi.org/10.3109/13668250.2016.1226277.CrossRef

Dardas, L. A., & Ahmad, M. M. (2014). Validation of the World Health Organization’s quality of Life Questionnaire with parents of children with autistic disorder. Journal of Autism and Developmental Disorders, 44(9), 2257–2263. https://doi.org/10.1007/s10803-014-2110-1.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 of Autism and Developmental Disorders, 38(7), 1278–1291. https://doi.org/10.1007/s10803-007-0512-z.CrossRefPubMed

Derguy, C., Roux, S., Portex, M., & M’bailara, K. (2018). An ecological exploration of individual, family, and environmental contributions to parental quality of life in autism. Psychiatry Research, 268, 87–93. https://doi.org/10.1016/j.psychres.2018.07.006.CrossRefPubMed

Diener, E., & Suh, E. (1997). Measuring quality of life: Economic, social, and subjective indicators. Social Indicators Research, 40(1/2), 189–216. https://doi.org/10.1023/A:1006859511756.CrossRef

Edwards, A. G., Brebner, C. M., McCormack, P. F., & MacDougall, C. J. (2018). From ‘parent’ to ‘expert’: How parents of children with autism spectrum disorder make decisions about which intervention approaches to access. Journal of Autism and Developmental Disorders, 48, 2122–2138. https://doi.org/10.1007/s10803-018-3473-5.CrossRefPubMed

Estes, A., Swain, D. M., & MacDuffie, K. E. (2019). The effects of early autism intervention on parents and family adaptive functioning. Pediatric Medicine, 2, 21–21. https://doi.org/10.21037/pm.2019.05.05.CrossRefPubMed

Gardner, L. M., Campbell, J. M., Keisling, B., & Murphy, L. (2018). Correlates of DSM-5 Autism Spectrum disorder levels of support ratings in a clinical sample. Journal of Autism and Developmental Disorders, 48(10), 3513–3523. https://doi.org/10.1007/s10803-018-3620-z.CrossRefPubMed

Gray, D. E. (1993). Perceptions of stigma: The parents of autistic children. Sociology of Health and Illness, 15(1), 102–120. https://doi.org/10.1111/1467-9566.ep11343802.CrossRef

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.CrossRefPubMed

Guidotti, L., Musetti, A., Barbieri, G. L., Ballocchi, I., & Corsano, P. (2021). Conflicting and harmonious sibling relationships of children and adolescent siblings of children with autism spectrum disorder. Child: Care Health and Development, 47(2), 163–173. https://doi.org/10.1111/cch.12823.CrossRefPubMed

Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y.CrossRefPubMed

Hou, Y., Kim, S. Y., Hazen, N., & Benner, A. D. (2017). Parents’ perceived discrimination and adolescent adjustment in Chinese American families: Mediating family processes. Child Development, 88(1), 317–331. https://doi.org/10.1111/cdev.12603.CrossRefPubMed

Howley, M. (2015). Outcomes of structured teaching for children on the autism spectrum: Does the research evidence neglect the bigger picture? Journal of Research in Special Educational Needs, 15(2), 106–119. https://doi.org/10.1111/1471-3802.12040.CrossRef

Ji, B., Sun, M., Yi, R., & Tang, S. (2014). Multidisciplinary parent education for caregivers of children with autism spectrum disorders. Archives of Psychiatric Nursing, 28(5), 319–326. https://doi.org/10.1016/j.apnu.2014.06.003.CrossRefPubMed

Jones, S., Bremer, E., & Lloyd, M. (2017). Autism spectrum disorder: Family quality of life while waiting for intervention services. Quality of Life Research, 26(2), 331–342. https://doi.org/10.1007/s11136-016-1382-7.CrossRefPubMed

Kallio, H., Pietilä, A. M., Johnson, M., & Kangasniemi, M. (2016). Systematic methodological review: Developing a framework for a qualitative semi-structured interview guide. Journal of Advanced Nursing, 72(12), 2954–2965. https://doi.org/10.1111/jan.13031.CrossRefPubMed

Kuckartz, U., & Rädiker, S. (2019). Analyzing qualitative data with MAXQDA. Springer International Publishing.

Leadbitter, K., Macdonald, W., Taylor, C., Buckle, K. L., Aldred, C., Barrett, B., Barron, S., Beggs, K., Blazey, L., Bourne, K., Byford, S., Charman, T., Collino, J., Colmer, R., Cutress, A., Green, J., Harrop, C., Houghton, T., Howlin, P., & White, L. (2020). Parent perceptions of participation in a parent-mediated communication-focussed intervention with their young child with autism spectrum disorder. Autism, 24(8), 2129–2141. https://doi.org/10.1177/1362361320936394.CrossRefPubMed

Lichtlé, J., Downes, N., Engelberg, A., & Cappe, E. (2020). The effects of parent training programs on the quality of life and stress levels of parents raising a child with Autism Spectrum disorder: A systematic review of the literature. Review Journal of Autism and Developmental Disorders, 7(3), 242–262. https://doi.org/10.1007/s40489-019-00190-x.CrossRef

McCann, D., Bull, R., & Winzenberg, T. (2012). The daily patterns of time use for parents of children with complex needs: A systematic review. Journal of Child Health Care, 16(1), 26–52. https://doi.org/10.1177/1367493511420186.CrossRefPubMed

McConachie, H., & Diggle, T. (2007). Parent implemented early intervention for young children with autism spectrum disorder: A systematic review. Journal of Evaluation in Clinical Practice, 13(1), 120–129. https://doi.org/10.1111/j.1365-2753.2006.00674.x.CrossRefPubMed

McConachie, H., Randle, V., Hammal, D., & Le Couteur, A. (2005). A controlled trial of a training course for parents of children with suspected Autism Spectrum Disorder. The Journal of Pediatrics, 147(3), 335–340. https://doi.org/10.1016/j.jpeds.2005.03.056.CrossRefPubMed

McConkey, R., Cassin, M. T., & McNaughton, R. (2020). Promoting the social inclusion of children with ASD: A family-centred intervention. Brain Sciences, 10(5). https://doi.org/10.3390/brainsci10050318.

McPhilemy, C., & Dillenburger, K. (2013). Parents’ experiences of applied behaviour analysis (ABA)-based interventions for children diagnosed with autistic spectrum disorder. British Journal of Special Education, 40(4), 154–161. https://doi.org/10.1111/1467-8578.12038.CrossRef

Mello, C., Rivard, M., Terroux, A., & Mercier, C. (2019). Quality of life in families of young children with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 124(6), 535–548. https://doi.org/10.1352/1944-7558-124.6.535.CrossRefPubMed

Mesibov, G. B., & Shea, V. (2010). The TEACCH program in the era of evidence-based practice. Journal of Autism and Developmental Disorders, 40, 570–579.

Mesibov, G. B., Shea, V., & Schopler, E. (2005). The TEACCH approach to autism spectrum disorders. Springer Science & Business Media.

Moody, E. J., Kaiser, K., Sharp, D., Kubicek, L. F., Rigles, B., Davis, J., McSwegin, S., D’Abreu, L. C., & Rosenberg, C. R. (2019). Improving family functioning following diagnosis of ASD: A randomized trial of a parent mentorship program. Journal of Child and Family Studies, 28(2), 424–435. https://doi.org/10.1007/s10826-018-1293-z.CrossRef

Musetti, A., Manari, T., Dioni, B., Raffin, C., Bravo, G., Mariani, R., Esposito, G., Dimitriou, D., Plazzi, G., Franceschini, C., & Corsano, P. (2021). Parental quality of life and involvement in intervention for children or adolescents with autism spectrum disorders: A systematic review. Journal of Personalized Medicine, 11(9), 894. https://doi.org/10.3390/jpm11090894.CrossRefPubMedPubMedCentral

Osborne, L. A., McHugh, L., Saunders, J., & Reed, P. (2008). Parenting stress reduces the effectiveness of early teaching interventions for autistic Spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1092–1103. https://doi.org/10.1007/s10803-007-0497-7.CrossRef

Pozo, P., Sarriá, E., & Brioso, A. (2014). Family quality of life and psychological well-being in parents of children with autism spectrum disorders: A double ABCX model: Family quality of life and psychological well-being. Journal of Intellectual Disability Research, 58(5), 442–458. https://doi.org/10.1111/jir.12042.CrossRefPubMed

Probst, P., & Glen, I. (2011). TEACCH-based interventions for families with children with autism spectrum disorders: Outcomes of a parent group training study and a home-based child–parent training single case study. Life Span and Disability, 14(2), 111–138.

Robert, M., Leblanc, L., & Boyer, T. (2015). When satisfaction is not directly related to the support services received: Understanding parents’ varied experiences with specialised services for children with developmental disabilities. British Journal of Learning Disabilities, 43(3), 168–177. https://doi.org/10.1111/bld.12092.CrossRef

Sanz-Cervera, P., Fernández-Andrés, I., Pastor-Cerezuela, G., & Tárraga-Mínguez, R. (2018). The effectiveness of TEACCH intervention in autism spectrum disorder: A review study. Papeles Del Psicólogo, 39(1), 40–50.

Scott, T. M., & Cooper, J. T. (2017). Functional behavior assessment and function-based intervention planning: Considering the simple logic of the process. Beyond Behavior, 26(3), 101–104. https://doi.org/10.1177/1074295617716113.CrossRef

Sofronoff, K., Leslie, A., & Brown, W. (2004). Parent management training and Asperger Syndrome: A randomized controlled trial to evaluate a parent based intervention. Autism, 8(3), 301–317. https://doi.org/10.1177/1362361304045215.CrossRefPubMed

Turner-Brown, L., Hume, K., Boyd, B. A., & Kainz, K. (2019). Preliminary efficacy of family implemented TEACCH for toddlers: Effects on parents and their toddlers with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49, 2685–2698. https://doi.org/10.1007/s10803-016-2812-7.CrossRefPubMed

Van Bourgondien, M. E., Reichle, N. C., & Schopler, E. (2003). Effects of a model treatment approach on adults with autism. Journal of Autism and Developmental Disorders, 33, 131–140. https://doi.org/10.1023/A:1022931224934.CrossRefPubMed

van Schalkwyk, G. I., & Dewinter, J. (2020). Qualitative research in the Journal of Autism and Developmental disorders. Journal of Autism and Developmental Disorders, 50(7), 2280–2282. https://doi.org/10.1007/s10803-020-04466-8.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

Virués-Ortega, J. (2010). Applied behavior analytic intervention for autism in early childhood: Meta-analysis, meta-regression and dose–response meta-analysis of multiple outcomes. Clinical Psychology Review, 30(4), 387–399. https://doi.org/10.1016/j.cpr.2010.01.008.CrossRefPubMed

Westman Aandersson, G., Miniscalco, C., & Ggillberg, N. (2017). A 6-year follow-up of children assessed for suspected autism spectrum disorder: Parents’ experiences of society’s support. Neuropsychiatric Disease and Treatment, 13, 1783–1796. https://doi.org/10.2147/NDT.S134165.CrossRef

Titel: Parental Quality of Life and Impact of Multidisciplinary Intervention for Children with Autism Spectrum Disorders: A Qualitative Study
Auteurs: Chiara Fante
Raffaele De Luca Picione
Barbara Dioni
Tommaso Manari
Cinzia Raffin
Francesca Capelli
Christian Franceschini
Vittorio Lenzo
Alessandro Musetti
Publicatiedatum: 03-01-2024
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 1/2025
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-023-06225-x

Andere artikelen Uitgave 1/2025

Examining Diagnostic Trends and Gender Differences in the ADOS-II

Original Paper

The Relationship Between Social Skills and Sensory Profile, Emotion Regulation, and Empathizing/Systemizing in Adolescents on the Autism Spectrum

Original Paper

Comparison of the Clancy Autism Behavior Scale and Autism Behavior Checklist for Screening Autism Spectrum Disorder

Original Paper

Early Intervention Provider-Reported NDBI Use and Relationships with Provider- to System-Level Implementation Determinants

Original Paper

Correction to: The Moderating Effect of Sex on Autistic Trait Emotional Intelligence, Alexithymia, and Empathy

Open Access
Correction

Development of a Novel Telemedicine Tool to Reduce Disparities Related to the Identification of Preschool Children with Autism

Article

Bohn Stafleu van Loghum

Welkom bij Scalda & Bohn Stafleu van Loghum

Registreer

Login

Parental Quality of Life and Impact of Multidisciplinary Intervention for Children with Autism Spectrum Disorders: A Qualitative Study

Abstract

Andere artikelen Uitgave 1/2025

Examining Diagnostic Trends and Gender Differences in the ADOS-II

The Relationship Between Social Skills and Sensory Profile, Emotion Regulation, and Empathizing/Systemizing in Adolescents on the Autism Spectrum

Comparison of the Clancy Autism Behavior Scale and Autism Behavior Checklist for Screening Autism Spectrum Disorder

Early Intervention Provider-Reported NDBI Use and Relationships with Provider- to System-Level Implementation Determinants

Correction to: The Moderating Effect of Sex on Autistic Trait Emotional Intelligence, Alexithymia, and Empathy

Development of a Novel Telemedicine Tool to Reduce Disparities Related to the Identification of Preschool Children with Autism

Bohn Stafleu van Loghum

Welkom bij Scalda & Bohn Stafleu van Loghum

Registreer

Login

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Examining Diagnostic Trends and Gender Differences in the ADOS-II

The Relationship Between Social Skills and Sensory Profile, Emotion Regulation, and Empathizing/Systemizing in Adolescents on the Autism Spectrum

Comparison of the Clancy Autism Behavior Scale and Autism Behavior Checklist for Screening Autism Spectrum Disorder

Early Intervention Provider-Reported NDBI Use and Relationships with Provider- to System-Level Implementation Determinants

Correction to: The Moderating Effect of Sex on Autistic Trait Emotional Intelligence, Alexithymia, and Empathy

Development of a Novel Telemedicine Tool to Reduce Disparities Related to the Identification of Preschool Children with Autism