Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

08-06-2022 | Original Paper

In Their Own Words: Mothers Narrate the Lived Experience of Raising Children with Developmental Disorders Who Engage in Socially Disruptive Conduct

Auteur: Rondalyn Varney Whitney

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 8/2023

Abstract

The occupational role of a mother parenting a child with developmental and socially disruptive conduct is unique. How mothers express their experiences is poorly explored in the literature. This study aims to better understand mothers’ description of their unique experiences in order to better inform interventions. Using a narrative inquiry approach, mothers convey unique stressors related to two central themes (role fulfillment and role support) during a journal writing intervention. Studying mothers’ own words as they attempted to make sense of their experiences aligns with the foundational principles of narrative medicine: People make sense of their experiences through storytelling. Knowledge gained from this research underscores the importance of centering a mother’s voice in order to create effective interventions.

vorige artikel Neural Processing of Speech Sounds in ASD and First-Degree Relatives

volgende artikel ‘They ask no questions and pass no criticism’: A mixed-methods study exploring pet ownership in autism

Alleen toegankelijk voor geautoriseerde gebruikers

Sites included Sensory Street, NLDline, Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD), McNeeds Yahoo Group, OT Connections and The Autism Montgomery of Maryland. Support groups included Kennedy Krieger Institute and Johns Hopkins Medicine—Baltimore.

The ‘node tree’ from Nvivo with full list of initial codes arranged by the first order concepts, second order themes and theoretical categories is available on request.

Abidin, R. R. (1995). Parenting stress index manual (3rd ed.). Psychological Assessment Resources Inc.

Adams, K. (1999). Writing as therapy. Counseling and Human Development, 31(5), 1–16.

American Occupational Therapy Association [AOTA]. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2).

Bar, M. A., & Jarus, T. (2015). The effort of engagement in everyday occupations, role overload, and social support on health and life satisfaction among mothers. International Environmental Research and Public Health, 12(6), 6045–6065. https://doi.org/10.3390/ijerph120606045CrossRef

Barton, R., Corban, A., Herrli-Warner, L., McClain, E., Riehle, D., & Tinner, E. (2013). Role strain in occupational therapy fieldwork educators. School of Occupational Therapy, University of Indianapolis. https://doi.org/10.3233/WOR-121508CrossRef

Benson, P. R. (2006). The Impact of child symptom severity on depressed mood among parents of children with ASD. Autism Developmental Disorders, 36, 685–695.CrossRef

Cacioppo, J., & Patrick, W. (2009). Loneliness: Human nature and the need for social connection. W.W. Norton & Company.

Charon, R. (2001). Narrative medicine: A model for empathy, reflection, profession, and trust. JAMA, 286(15), 1897. https://doi.org/10.1001/jama.286.15.1897CrossRefPubMed

Charon, R. (2006). Narrative medicine: Honoring the stories of illness. Oxford University Press.

Clandinin, D. J. (2019). Journeys in narrative inquiry: The selected works of D. Jean Clandinin (1st ed.). Routledge. https://doi.org/10.4324/9780429273896CrossRef

Clandinin, D. J., & Connelly, F. M. (2004). Narrative Inquiry: Experience and story in qualitative research. Jossey-Bass.

Clark, F. A. (2015). Lifestyle redesign. The intervention tested in the USC well elderly studies. AOTA Press.

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 Developmental Disorders, 38, 1278–1291.CrossRef

DeGrace, B. (2004). The everyday occupations of families with children with autism. American Journal of Occupational Therapy, 58(5), 341–419.

Goldberg, J. S., & Carlson, M. J. (2014). Parents’ relationship quality and children’s behavior in stable married and cohabitating families. Journal of Marriage and Family, 76(4), 763–777.CrossRef

Goldstein, L. H., Harvey, E. A., & Freidman-Weieneth, J. L. (2007). Examining subtypes of behavior among 3-year-old children, Part III: Investigating differences in parenting practices and parenting stress. Journal of Abnormal Child Psychology, 35, 125–136.CrossRefPubMed

Heiman, T., & Berger, O. (2008). Parents of children with Asperger syndrome or learning disabilities: Family environment and social support. Research in Developmental Disabilities, 29, 289–300.CrossRefPubMed

Hoffman, C., Sweeney, D., Hodge, D., Lopez-Wagner, M., & Looney, L. (2009). Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 24(3), 178–187.CrossRef

Law, M. (2002). Participation in the occupations of everyday life. The American Journal of Occupational Therapy, 56(6), 640–649. https://doi.org/10.5014/ajot.56.6.640CrossRefPubMed

Lee, L., Harrington, R., Louie, B., & Newschaffer, C. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160.CrossRefPubMed

Little, L. (2002). Differences in stress and coping for mothers and fathers of children with Asperger’s syndrome and nonverbal learning disorders. Pediatric Nursing, 28(6), 565.PubMed

Mariotti, A. (2015). The effects of chronic stress on health: New insights into the molecular mechanisms of brain-body communication. Future Science, 1(3), FSO23.

McCormack, C. (2004). Storying stories: A narrative approach to in-depth interview conversations. International Journal of Social Research Methodology, 7(3), 219–236.CrossRef

McLaughlin, D. P., & Harrison, C. A. (2006). Parenting practices of mothers of children with ADHD: The role of maternal and child factors. Child and Adolescent Mental Health, 11, 82–88.CrossRefPubMed

Miles, M. B., Huberman, A. M., & Saldaña, J. (2014). Qualitative data analysis: A methods sourcebook (3rd ed.). Sage.

Ottenbacher, K., & Cusick, A. (1990). Goal attainment scaling as a method of clinical service evaluation. American Journal of Occupational Therapy, 44(6), 519–525.CrossRef

Pennebaker, J. (2007). Emotion, disclosure and health (5th ed.). American Psychological Services.

Pennebaker, J. W. (1993). Putting stress into words: Health, linguistic, and therapeutic implications. Behavior Research and Therapy, 31(6), 539–548.CrossRef

Perry, D. F. (2007). A missed opportunity: Categorical programs fail to meet the needs of young children and their caregivers. Journal of Early Intervention, 29(2), 107–110.CrossRef

Polatajko, H. J., & Mandich, A. D. (2004). Enabling occupation in children: The Cognitive Orientation to daily Occupational Performance (CO–OP) approach. CAOT Publications.

Polatajko, H. J., Mandich, A. D., Miller, L. T., & Macnab, J. J. (2001). Cognitive Orientation to daily Occupational Performance (CO–OP): Part II—The evidence. Physical and Occupational Therapy in Pediatrics, 20, 83–106.CrossRefPubMed

Polkinghorne, D. E. (1995). Narrative configuration in qualitative analysis. In J. A. Hatch & R. Wisniewski (Eds.), Life history and narrative. Falmer Press, Taylor & Francis Inc.

Saldaña, J. (2009). The Coding Manual for Qualitative Researchers. Sage.

Segal, R. (2000). Adaptive strategies of mothers with children with attention deficit hyperactivity disorder. American Journal of Occupational Therapy, 54(3), 300–306.CrossRef

Seltzer, M., Almeida, D., Greenberg, J., Savla, J., Stawski, R., Hong, J., & Taylor, J. (2009). Psycho social and biological markers of daily lives of midlife parents of children with disabilities. Journal of Health and Social Behavior, 50(1), 1–15.CrossRefPubMedPubMedCentral

Silverman, D. (2014). Interpreting qualitative data (5th ed.). SAGE Publications.

Tunali, B., & Power, T. G. (2001). Coping by redefinition: Cognitive appraisals in mothers of children with and without autism. Journal of Autism and Developmental Disorders, 32, 25–34.CrossRef

USC Mrs, TH. (2020). Chan Division of Occupational Science and Occupational Therapy. About Health Coaching. Retrieved from http://chan.usc.edu/patient-care/faculty-practice/about.

Whitney, R. V., & Smith, G. (2015). Emotional disclosure through journal writing: Telehealth intervention for maternal stress and mother-child relationships. Journal of Autism & Developmental Disorders, 45(11), 3734–3745.CrossRef

Yamada, A., Kato, M., Suzuki, M., Suzuki, M., Watanabe, N., Akechi, T., & Furukawa, T. A. (2012). Quality of life of parents raising children with pervasive developmental disorders. BioMed Central Psychiatry, 12(119), 1–8.

Zemke, R., & Clark, F. (1996). Occupational science: The evolving discipline. FA Davis.

Titel: In Their Own Words: Mothers Narrate the Lived Experience of Raising Children with Developmental Disorders Who Engage in Socially Disruptive Conduct
Auteur: Rondalyn Varney Whitney
Publicatiedatum: 08-06-2022
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 8/2023
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-022-05578-z

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 8/2023

The Kind of Friend I Think I Am: Perceptions of Autistic and Non-autistic Young Adults

Examining associations between prenatal biomarkers of oxidative stress and ASD-related outcomes using quantile regression

Neural Processing of Speech Sounds in ASD and First-Degree Relatives

Treatment of Attention-Deficit/Hyperactivity Disorder with Medication in Children with Autism Spectrum Disorder With and Without Intellectual Disability: A DBPNet Study

A Preliminary Evaluation of a Brief Behavioral Parent Training for Challenging Behavior in Autism Spectrum Disorder

Risk factors for ASD