Expériences des pères concernant le diagnostic de "trouble du spectre de l'autisme" de leur enfant: une revue narrative de la recherche internationale

Aperçu: G.M.

But et objectifs:
Le but de cette revue systématique était d'identifier les points de vue et les expériences des pères concernant le diagnostic de "trouble du spectre de l'autisme" de leur enfant. 

Contexte:
Le diagnostic de "trouble du spectre de l'autisme" d'un enfant peut être une expérience stressante, créant de l'incertitude pour les parents. Il y a eu une recherche limitée sur les points de vue et les expériences des pères en ce qui concerne le diagnostic de "trouble du spectre de l'autisme" de leur enfant. 

Conception:
Une revue systématique de la littérature des études de recherche quantitatives, qualitatives et de méthodes mixtes. Sources de données: Academic Search Complete, CINAHL, MEDLINE et PsycINFO. 

Méthodes:
D'août à octobre 2020, deux auteurs ont indépendamment procédé à une extraction systématique des données et évalué les études à l'aide d'un instrument reconnu. La liste de contrôle PRISMA a été utilisée dans l'examen. 

Résultats:
Neuf articles répondaient aux critères d'inclusion. Quatre thèmes ont émergé: (a) la reconnaissance graduelle du retard de développement, (b) un moment émotionnel, (c) faire face et adaptation et (d) les ajustements continus du rôle de père. 

Conclusions:
Les infirmières et autres professionnels doivent travailler en collaboration avec les pères pour améliorer leurs expériences et fournir du soutien au moment du diagnostic de "trouble du spectre de l'autisme".

. 2021 May 5. doi: 10.1111/jocn.15781. 

Experiences of fathers regarding the diagnosis of their child with autism spectrum disorder: A narrative review of the international research

Michael Brown  ¹ , Lynne Marsh  ¹ , Edward McCann  ²

Affiliations

• PMID: 33951251
• DOI: 10.1111/jocn.15781

Abstract

Aim and objectives: The aim of this systematic review was to identify the views and experiences of fathers regarding their child's Autism Spectrum Disorder diagnosis.

Background: The diagnosis of a child's Autism Spectrum Disorder may be a stressful experience, creating uncertainty for parents. There has been a limited research focus on the views and experiences of fathers in relation to the diagnosis of Autism Spectrum Disorder of their child.

Design: A systematic literature review of quantitative, qualitative and mixed-methods research studies.

Data sources: Academic Search Complete, CINAHL, MEDLINE and PsycINFO.

Methods: From August to October 2020, two authors independently performed a systematic data extraction and appraised the studies using a recognised instrument. The PRISMA checklist was used in the review.

Results: Nine papers met the inclusion criteria. Four themes emerged: (a) gradual recognition of developmental delay, (b) an emotional time, (c) coping and adaptation and (d) ongoing adjustments to the fathering role.

Conclusions: Nurses and other professionals need to work collaboratively with fathers to improve their experiences and provide supports at the time of Autism Spectrum Disorder diagnosis.

Keywords: ASD; autism spectrum disorder; diagnosis; fathers; nurses; support; systematic review.

© 2021 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.

References

REFERENCES

1. 1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5. 5th Edition. ). American Psychiatric Association.
2. 1. Barnard-Brak, L., Richman, D., Ellerbeck, K., & Moreno, R. (2017). Health care provider responses to initial parental reports of autism spectrum disorder symptoms: Results from a nationally representative sample. Child and Adolescent Mental Health, 22(1), 30-35.
3. 1. Brian, J. A., Zwaigenbaum, L., & Ip, A. (2019). Standards of diagnostic assessment for autism spectrum disorder. Paediatrics & Child Health, 24(7), 444-451.
4. 1. Broomhill, R., & Sharp, R. (2012). Australia’s parental leave policy and gender equality: An international comparison. Australian Workplace Innovation and Social Research Centre: The University of Adelaide.
5. 1. Burrell, A., Ives, J., & Unwin, G. (2017). The experiences of fathers who have offspring with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(4), 1135-1147.
6. 1. Centre for Disease Control and Prevention. (2015). Data & statistics on autism spectrum disorder. Retrieved from https://www.cdc.gov/ncbddd/autism/data.html
7. 1. Cheuk, S., & Lashewicz, B. (2016). How are they doing? Listening as fathers of children with autism spectrum disorder compare themselves to fathers of children who are typically developing. Autism, 20(3), 343-352.
8. 1. Christensen, D. L., Braun, K. V. N., Baio, J., Bilder, D., Charles, J., Constantino, J. N., Daniels, J., Durkin, M. S., Fitzgerald, R. T., Kurzius-Spencer, M., Lee, L.-C., Pettygrove, S., Robinson, C., Schulz, E., Wells, C., Wingate, M. S., Zahorodny, W., & Yeargin-Allsopp, M. (2018). Prevalence and characteristics of autism spectrum disorder among children aged 8 years-autism and developmental disabilities monitoring network, 11 sites, United States, 2012. MMWR Surveillance Summaries, 65(13), 1.
9. 1. Corman, M. K. (2009). The positives of caregiving: Mothers’ experiences caregiving for a child with autism. Families in Society, 90(4), 439-445.
10. 1. 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.
11. 1. Critical Appraisal Skills Programme. (2013). 10 questions to help you make sense of qualitative research. Public Health Resource Unit.
12. 1. Crowe, B. H., & Salt, A. T. (2015). Autism: The management and support of children and young people on the autism spectrum (NICE Clinical Guideline 170). Archives of Disease in Childhood-Education and Practice, 100(1), 20-23.
13. 1. Dunlap, J. J., & Filipek, P. A. (2020). CE: Autism spectrum disorder: The nurse's role. AJN, American Journal of Nursing, 120(11), 40-49.
14. 1. Frye, L. (2016). Fathers’ experience with autism spectrum disorder: Nursing implications. Journal of Pediatric Health Care, 30(5), 453-463.
15. 1. Ghaderi, G., & Watson, S. L. (2019). “In medical school, you get far more training on medical stuff than developmental stuff”: Perspectives on ASD from Ontario physicians. Journal of Autism and Developmental Disorders, 49(2), 683-691.
16. 1. Hannon, M. D., & Hannon, L. V. (2017). Fathers’ orientation to their children’s autism diagnosis: A grounded theory study. Journal of Autism and Developmental Disorders, 47(7), 2265-2274.
17. 1. Hend, M. S. (2017). Assessment of family physicians’ knowledge of childhood autism. Family Medicine and Community Health, 5(4), 266-274.
18. 1. Hiremath, C. S., Sagar, K. J. V., Yamini, B. K., Girimaji, A. S., Kumar, R., Sravanti, S. L., Padmanabha, H., Vykunta Raju, K. N., Kishore, M. T., Jacob, P., Saini, J., Bharath, R. D., Seshadri, S. P., & Kumar, M. (2021). Emerging behavioral and neuroimaging biomarkers for early and accurate characterization of autism spectrum disorders: A systematic review. Translational Psychiatry, 11, 42.
19. 1. Hyman, S. L., Levy, S. E., & Myers, S. M. (2020). Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1).
20. 1. Jackson, L., Keville, S., & Ludlow, A. K. (2020). Mothers’ experiences of accessing mental health care for their child with an autism spectrum disorder. Journal of Child and Family Studies, 29(2), 534-545.
21. 1. Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S. (2010). The experience of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23(4), 390-397.
22. 1. Kim, S. K., McKay, D., Ehrenreich-May, J., Wood, J., & Storch, E. A. (2020). Assessing treatment efficacy by examining relationships between age groups of children with autism spectrum disorder and clinical anxiety symptoms: Prediction by correspondence analysis. Journal of Affective Disorders, 265, 645-650.
23. 1. Kong, X., Liu, J., Chien, T., Batalden, M., & Hirsh, D. A. (2020). A systematic network of autism primary care services (SYNAPSE): A model of coproduction for the management of autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(5), 1847-1853.
24. 1. Legg, H., & Tickle, A. (2019). UK parents’ experiences of their child receiving a diagnosis of autism spectrum disorder: A systematic review of the qualitative evidence. Autism, 23(8), 1897-1910.
25. 1. Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466-474.
26. 1. Manor-Binyamini, I. (2019). Listening to Bedouin fathers of children with autism spectrum disorder. Transcultural Psychiatry, 56(2), 345-358.
27. 1. Marsh, L., Brown, M., & McCann, E. (2020). The views and experiences of fathers of children with intellectual disabilities: A systematic review of the international evidence. Journal of Policy and Practice in Intellectual Disabilities, 17(1), 79-90.
28. 1. Martinez, M., Thomas, K. C., Williams, C. S., Christian, R., Crais, E., Pretzel, R., & Hooper, S. R. (2018). Family experiences with the diagnosis of autism spectrum disorder: System barriers and facilitators of efficient diagnosis. Journal of Autism and Developmental Disorders, 48(7), 2368-2378.
29. 1. Martins, C. D., Walker, S. P., & Fauche, P. (2013). Fathering a child with autism spectrum disorder: An interpretative phenomenological analysis. Indo-pacific Journal of Phenomenology, 13(1).
30. 1. McIntyre, L. L., & Brown, M. (2018). Examining the utilisation and usefulness of social support for mothers with young children with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 43(1), 93-101.
31. 1. Moher, D., Shamseer, L., Clarke, M., Ghersi, D., Liberati, A., Petticrew, M., Shekelle, P., Stewart, L. A., & PRISMA-P Group. (2015). Prefered reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015statement. Systematic Reviews, 4(1), 1-9.
32. 1. Nicholas, D. B., Muskat, B., Zwaigenbaum, L., Greenblatt, A., Ratnapalan, S., Kilmer, C., Craig, W., Roberts, W., Cohen-Silver, J., Newton, A., & Sharon, R. (2020). Patient-and family-centered care in the emergency department for children with autism. Pediatrics, 145(Supplement 1), S93-S98.
33. 1. O’Halloran, M., Sweeney, J., & Doody, O. (2013). Exploring fathers’ perceptions of parenting a child with Asperger syndrome. Journal of Intellectual Disabilities, 17(3), 198-213.
34. 1. Paynter, J., Davies, M., & Beamish, W. (2018). Recognising the “forgotten man”: Fathers’ experiences in caring for a young child with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 43(1), 112-124.
35. 1. 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.
36. 1. Pottas, A., & Pedro, A. (2016). Experiences of father carers of children with autism spectrum disorder: An exploratory study. Journal of Psychology in Africa, 26(6), 551-554.
37. 1. Potter, C. A. (2017). “I received a leaflet and that is all”: Father experiences of a diagnosis of autism. British Journal of Learning Disabilities, 45(2), 95-105.
38. 1. Precious, K. (2020). Informed, involved, or empowered? Three ideal types of autism policy design in Western Europe. European Policy Analysis, https://doi.org/10.1002/epa2.1092
39. 1. Rafferty, D., Tidman, L., & Ekas, N. V. (2020). Parenting experiences of fathers of children with autism spectrum disorder with or without intellectual disability. Journal of Intellectual Disability Research, 64(6), 463-474.
40. 1. 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, 22(4), 458-477.
41. 1. Reed, P., & Osborne, L. A. (2019). Reaction to diagnosis and subsequent health in mothers of children with autism spectrum disorder. Autism, 23(6), 1442-1448.
42. 1. Rushbrooke, E., Murray, C. D., & Townsend, S. (2014). What difficulties are experienced by caregivers in relation to the sexuality of people with intellectual disabilities? A qualitative meta-synthesis. Research in Developmental Disabilities, 35(4), 871-886.
43. 1. Seymour, M., Giallo, R., & Wood, C. E. (2020). Perceptions of social support: Comparisons between fathers of children with autism spectrum disorder and fathers of children without developmental disabilities. Journal of Intellectual Disability Research, 64(6), 414-425.
44. 1. Simelane, A. P. (2020). Understanding daily parenting stresses in caring for children with autism spectrum disorders. South African Journal of Child Health, 14(3), 115-118.
45. 1. Terry, G., Hayfield, N., Clarke, V., & Braun, V. (2017). Thematic analysis. The Sage 556 Handbook of. Qualitative Research in Psychology, 30, 17-37.
46. 1. Tinsley, E. (2020). At a glance: Identifying autism in children. Journal of Health Visiting, 8(3), 106-108.
47. 1. Urbanowicz, A., Parkin, T., van Dooren, K., Girdler, S., Ciccarelli, M., & Lennox, N. (2020). The experiences, views, and needs of health professionals who provide care to adults on the autism spectrum. Research and Practice in Intellectual and Developmental Disabilities, 1-14.
48. 1. Vacca, J. J. (2013). The parenting process from the father’s perspective. Best Practices in Mental Health, 9(2), 79-93.
49. 1. Veritas Health Innovation (2020). Covidence systematic review software, Melbourne, 553 Australia. Retrieved from www.covidence.org
50. 1. Vernhet, C., Dellapiazza, F., Blanc, N., Cousson-Gélie, F., Miot, S., Roeyers, H., & Baghdadli, A. (2019). Coping strategies of parents of children with autism spectrum disorder: A systematic review. European Child & Adolescent Psychiatry, 28(6), 747-758.
51. 1. Ward, S. L., Sullivan, K. A., & Gilmore, L. (2016). Practitioner perceptions of the assessment and diagnosis of autism in Australia. Australian Psychologist, 51(4), 272-279.
52. 1. World Health Organization. (2013). Meeting report: Autism spectrum disorders and other developmental disorders: From raising awareness to building capacity. World Health Organization.