English

Barre latérale de l'article

PDF (English)
Publié-e : juill. 19, 2024
DOI : https://doi.org/10.18192/uojm.v13i1.6430
Mots-clés :
English

Contenu principal de l'article

Marie Dominique Antoine
Department of Communication, Faculty of Arts, University of Ottawa, Ottawa, Ontario, Canada
https://orcid.org/0000-0002-9355-2001

Résumé

Background: Despite the widespread use of complementary and alternative medicine (CAM) for autistic children, little is known about the communication flow between the different parties involved in the care (i.e., parents/caregivers, conventional providers, alternative practitioners). This study aimed to describe how communication occurs through the first year of care to identify challenges and potential barriers to communication that may affect the care of autistic children.


Methods: From an ecological perspective, we collected qualitative data through 12 semi-structured interviews with six parents/caregivers, three conventional providers (family doctor, neurodevelopmental pediatrician, psychologist), and three alternative practitioners (naturopath, occupational therapist, speech and language pathologist) operating in Ottawa, Canada. The data was interpreted using thematic analysis. 


Results: Findings revealed that parents/caregivers are the only links between the health professionals of both streams. The communication between parents/caregivers and conventional providers faces a perceived lack of knowledge of these professionals relating to CAM, a lack of care integration, flexibility, and time constraints. In alternative care settings, care integration and time constraints are an issue. From the five contexts examined, only the organizational and interpersonal contexts influence communication flow within the system.


Conclusions: The increasing interest in alternative medicine is forcing changes in the healthcare system. Within the identified themes in the current study, the necessity for communication between all parties involved in the care of autistic children is evident. More ASD and CAM-related training for providers and openings for information-sharing between the two streams would support effective parent/caregiver-care provider communication. These findings contribute to a better understanding of the role of communication in the care management of autism, which has implications for effective autism care.

Renseignements sur l'article

Numéro
Vol. 14 No. 1 (2024): Mises à jour en médecine familiale
Rubrique
Original Research
Licence Creative Commons

Cette œuvre est sous licence Creative Commons Attribution - Pas d'Utilisation Commerciale - Pas de Modification 4.0 International.

  1. Les auteurs qui publient dans le JMUO gardent les droits d’auteur de leurs articles, incluant tous les brouillons et la copie finale publiée dans le journal
  2. Bien que le JMUO n’a pas les droits d’auteur des articles soumis, en acceptant de publier dans le JMUO, les auteurs donnent le droit au journal d’être les premiers à publier et à distribuer leurs articles.
  3. Par la suite, les auteurs peuvent soumettre leurs documents à d’autres publications, incluant des revues ou des livres, avec un remerciement de leur première publication dans le JMUO
  4. Des copies du JMUO seront distribuées à la fois sous format papier et en ligne, et tous les matériaux seront accessibles au public en ligne. Le journal n’a pas de responsabilité légale par rapport à la distribution publique du contenu.
  5. Prière de vous assurer que tous les auteurs, les coauteurs et les investigateurs 
  6. Le contenu est rendu disponible sous licence Creative Commons Attribution - Pas d'Utilisation Commerciale - Pas de Modification 4.0 International.
Biographie de l'auteur-e

Marie Dominique Antoine, Department of Communication, Faculty of Arts, University of Ottawa, Ottawa, Ontario, Canada

Marie Dominique Antoine est candidate au doctorat en communication spécialisée en communication organisationnelle. Elle est titulaire d’un diplôme en droit juridique, et d’une maîtrise en communication. Sa recherche se concentre sur sur la communication et santé, plus particulièrement, les troubles du spectre de l’autisme. Sa thèse de maîtrise porte sur la communication dans la prise en charge des enfants autistes. Les objectifs étaient de comprendre comment la communication s’effectue au sein du système de soins de santé lors de la prise en charge d’enfants autistes, afin d’identifier les obstacles potentiels à la communication entre parents et prestataires de soins. Son étude doctorale vise à explorer les informations disponibles fournies aux parents dans les établissements de soins de santé conventionnels après un diagnostic d’autisme de l’enfant et les perceptions parentales de ces informations par rapport à leur utilisation dans la prise de décision concernant le traitement. Plus précisément, l’objectif est d’évaluer dans quelle mesure il existe un écart entre les informations disponibles et les informations utilisées dans la prise de décision et comment les parents font face à cet écart.

Références

Government of Canada. Autism:About, causes and co-occuring conditions. 2022-04-07. Available from: https://www.canada.ca/en/public-health/services/diseases/autism-spectrum-disorder-asd.html.

Volkmar, F. R., & Wiesner, L. A. Wiesner. Healthcare for children on Autism spectrum: A guide to medical, nutritional, and behavioral issues. Bethesda: Woodbine House Inc.; 2004.

Strunk, J., Leisen, M., & Shubert, C. Using a multidisciplinary approach with children diagnosed with autism spectrum disorder. Journal of Interprofessional Education & Practice. 2017; 8: 60-68.

The College of Physicians & Surgeons of Alberta (CPSA). Practising Outside of Established Conventional Medicine. 2021 Jan. Available from : https://cpsa.ca/physicians/standards-of-practice/practising-outside-established-conventional-medicine/.

Jacobs, B., Gundling, K. Evidence-Based Guide to Complementary and Alternative Medicine. United States: American College of Physicians; 2009.

Smith, C. A., Parton, C., King, M., & Gallego, G. Parents’ experiences of information-seeking and decision-making regarding complementary medicine for children with autism spectrum disorder: a qualitative study. BMC Complementary Medicine and Therapies. 2020 Jan; 20(4): 1-13.

Höfer, J., Hoffmann, F., Kamp-Becker, I., Küpper, C., Poustka, L., Roepke, S., et al. Complementary and alternative medicine use in adults with autism spectrum disorder in Germany: results from a multi-center survey. BMC Psychiatry. 2019; 19(53): 1-8.

Hopf, K. P., Madren, E., & Santianni, K. A. Use and Perceived Effectiveness of Complementary and Alternative Medicine to Treat and Manage the Symptoms of Autism in Children: A Survey of Parents in a Community Population. The Journal of Alternative and Complementary Medicine. 2016; 22(1): 25-32.

Levy, S. E., Frasso, R., Colantonio, S., Reed, H., Stein, G., Barg, F. K., et al. Shared Decision Making and Treatment Decisions for Young Children With Autism Spectrum Disorder. Academic Pediatrics. 2016 Aug; 16(6): 571-578.

Centers for Disease Control and Prevention. Treatment and Intervention Services for Autism Spectrum Disorder. 2019 Sep. Available from: https://www.cdc.gov/ncbddd/autism/treatment.html#ref.

Cooper, A., Gray, J., Willson, A., Lines, C., McCannon, J., & McHard, K. Exploring the role of communications in quality improvement: A case study of the 1000 Lives Campaign in NHS Wales. Journal of Communication in Healthcare. 2015: 76-84.

Fong Ha, J., & Longnecker, N. Doctor-Patient Communication: A Review. Ochsner Journal. 2010; (10.1): 38-43.

Street Jr., R. L., Gordon, H., & Haidet, P. Physicians’ communication and perceptions of patients: Is it how they look, how they talk, or is it just the doctor? Social Science & Medicine. 2007 Aug; 65(3): 586-598.

Rickel, A. U., & Wise, T. N. Understanding Managed Care - An introduction for health care professionals. New York: Karger; 2000.

Autism Research Institute (ARI). Symptoms of Autism; 2021. Available from: https://www.autism.org/symptoms-of-autism/?gclid=CjwKCAjwquWVBhBrEiwAt1KmwsJCHxABlb9aW-A1bLo6buS5A7Ji-7yE3nkbrI-Arwxpkl28YcaYMhoCq1AQAvD_BwE.

Myles, B. S., Swanson, T. C., Holverstott, J., & Duncan, M. M. Autism Spectrum Disorders: A handbook for parents and professionals. Westport: Praeger Publishers; 2007.

Poirier, A., Goupil, G. Processus diagnostique des personnes présentant un trouble envahissant du développement au Québec: expérience des parents. Journal on Developmental Disabilities. 2008; 14(3): 19-28.

Elfer, J. H., & D'Alessandro, T. Supporting Families of Children With Autism Spectrum Disorders: Questions Parents Ask and What Nurses Need to Know. Pediatric Nursing 2009; 35(4): 240-253.

Aussilloux, C., Baghdadli, A., & Brun, V. Autisme et communication. Paris: Masson; 2004.

Autism Canada. Provincial and Territorial Funding Programs for Autism Therapy; 2017. Available from: https://autismcanada.org/wp-content/uploads/2017/12/AC_ProgramsForAutismTherapy.pdf.

Hoffer, A., & Saul, A. W. Orthomolecular medicine for everyone: Megavitamin therapeutics for families and physicians. Laguna Beach, CA: Basic Health Publications, Inc; 2008.

Höfer, J., Hoffman, F., & Bachman, C. Use of complementary and alternative medicine in children and adolescents with autism spectrum disorder: A systematic review. Sagepub. 2017; 21(4): 387-402.

Carel, Havi. Illness. Stocksfield: Acumen Publishing Limited; 2008.

Von Bertalanffy, L. Perspectives on general systems theory: Scientific-philosophical studies. New York: Braziller ; 1975.

Von Bertalanffy, L. Théorie générale des systèmes. Paris: Dunod; 1968.

Street, R.L. Communicating in Medical Encounters: An Ecological Perspective. In Handbook of Health Communication. Thompson, Theresa L., et al. Handbook of health communication. London: Lawrence Erlbaum Associates Publishers; 2003. 63-89.

Patton, M.Q. Enhancing the quality and credibility of qualitative analysis. Health Sciences Research. 1999 Dec ; 34(5.2): 1189-1208.

Carter, N., Bryant-Lukosius, D., DiCenso, A., Blythe, J., & Neville, A. J. The use of triangulation in qualitative research. Oncology Nursing Forum. 2014 Sep; 41(5): 545-547.

Wilson, M., Whelan, T., Milne, L., Hamilton, D., Jacobs, D., & Pilkington, P. A thematic analysis of influences on parents’ autism intervention decisions. Research in Developmental Disabilities. 2021 Oct; 117: 1-10.

Feinberg, E., & Vacca, J. The Drama and Trauma of Creating Policies on Autism: Critical Issues to Consider in the New Millennium. Focus on Autism and Other Developmental Disorder. 2000; 15(3): 130-137.

Stoner, J. B., Angell, M. E., House, J. J., & Bock, S. J. Transitions: Perspectives from Parents of Young Children with Autism Spectrum Disorder (ASD). Journal of Developmental and Physical Disabilities. 2007; 19: 23-39.

Shepherd, D., Csako, R., Landon, J., Goedeke, S., & Ty, K. Documenting and Understanding Parent’s Intervention Choices for Their Child with Autism Spectrum Disorder. Journal of autism and developmental disorders. 2018 Apr; 48(4): 988-1001.

Braun, Virginia et Victoria Clarke. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006: 77-101.

Corden, K., Brewer, R., & Cage, E. A Systematic Review of Healthcare Professionals’ Knowledge, Self-Efficacy and Attitudes Towards Working with Autistic People. Review Journal of Autism and Developmental Disorders. 2021 May : 1-14.

Malik-Soni, N., Shaker, A., Luck, H., Mullin, A. E., Wiley, R. E., Lewis, M. S., et al. Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatric Research. 2022 Apr; 91(5): 1025-1035.

Levy, S. E., & Fiks, A. G. Shared decision making for children with developmental disorders: recent advances. Academic Pediatrics. 2018 May; 18(4): 364-365.

Myers, L., Karp, S. M., Dietrich, M. s., Looman, W. S., & Lutenbacher, M. Family Centered Care: How Close Do We Get When Talking to Parents of Children Undergoing Diagnosis for Autism Spectrum Disorders? Journal of Autism and Developmental Disorders. 2021 Sep; 51(9): 3073-3084.

Frame, K., & Casey, L. Variables influencing parental treatment selection for children with autism spectrum disorder. Children and Youth Services Review. 2019; 106 : 1-9.

Matson, J. L., Adams, H. L., Williams, L. W., & Rieske, R. D. (). Why are there so many unsubstantiated treatments in autism? Research in Autism Spectrum. 2013; 7(3): 466–474.

Hashim, J.M. Patient-Centered Communication: Basic Skills. American Family Physician. 2017 Jan; 95(1): 29-34.

Institute of Medicine. Complementary and Alternative Medicine in the United States. Washington, DC: National Academies Press (US); 2005.

Berman, B. M., Singh, B. B., Hartnoll, S. M., Singh, K. B., & Reilly, D. Primary care physicians and complementary-alternative medicine: training, attitudes, and practice patterns. Journal of the American Board of Family Practice. 1998: 272-281.

Mire, S. S., Geay, W., Kubiszyn, T., Burridge, A. B., & Goin-Kochel, R. P. Parent Perceptions About Autism Spectrum Disorder Influence Treatment Choices. Focus on Autism and Other Developmental Disabilities. 2017; 32(4): 305-318.

Gibson, A. N., Kaplan, S., & Vardell, E. A Survey of Information Source Preferences of Parents of Individuals with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. 2017; 47(7): 2189-2204.

Grant, N., S. Rodger et T. Hoffmann. Intervention decision-making processes and information preferences of children with autism spectrum disorders. Child: care, health and development. 2015; 42(1): 125-134.

Dinora, P., Bogenschutz, M., & Lynch, K. Factors That May Influence Parent Treatment Decision Making for Young Children with Autism Spectrum Disorder. Journal of Social Work in Disability & Rehabilitation. 2017: 377-395.

Smith, G. D., & Wu, S.-C. Nurses’ beliefs, experiences and practice regarding complementary. Journal of Clinical Nursing. 2012 Sep; 21(17-18): 2659-2667.