Impact of Diagnostic Practices on the Self-Reported Health of Mothers of Recently Diagnosed Children with ASD
Abstract
:1. Introduction
2. Method
2.1. Participants
2.2. Materials
2.3. Procedure
3. Results
4. Discussion
5. Conclusions
Author Contributions
Conflicts of Interest
References
- O’Hare, A. Autism spectrum disorder: Diagnosis and management. Arch. Disabl. Child. Educ. Pract. 2009, 94, 161–168. [Google Scholar] [CrossRef] [PubMed]
- Cassidy, A.; McConkey, R.; Truesdale-Kennedy, M.; Slevin, E. Preschoolers with Autism Spectrum Disorders: The impact on families and the supports available to them. Early Child Dev. Care 2007, 178, 115–128. [Google Scholar] [CrossRef]
- Keenan, M.; Dillenburger, K.; Doherty, A.; Byrne, T.; Gallagher, S. The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. J. Appl. Res. Intellect. Disabil. 2010, 23, 390–397. [Google Scholar] [CrossRef] [Green Version]
- Phelps, K.W.; Hodgson, J.L.; McCammon, S.L.; Lamson, A.L. Caring for an individual with autism disorder: A qualitative analysis. J. Intellect. Dev. Disabil. 2009, 34, 27–35. [Google Scholar] [CrossRef] [PubMed]
- Resch, J.A.; Benz, M.R.; Elliott, T.R. Evaluating a dynamic process model of wellbeing for parents of children with disabilities: A multi-method analysis. Rehabil. Psychol. 2012, 57, 61–72. [Google Scholar] [CrossRef] [PubMed]
- Siklos, S.; Kerns, K.A. Assessing the diagnostic experiences of a small sample of parents of children with Autism Spectrum Disorders. Res. Dev. Disabil. 2007, 28, 9–22. [Google Scholar] [CrossRef] [PubMed]
- Stallard, P.; Lenton, S. How satisfied are parents of preschool children who have special needs with the services they have received? A consumer survey. Child Care Health Dev. 1992, 18, 197–205. [Google Scholar] [CrossRef] [PubMed]
- Zhang, W.; Yan, T.T.; Du, Y.S.; Liu, X.H. Relationship between coping, rumination and posttraumatic growth in mothers of children with Autism Spectrum Disorders. Res. Autism Spectr. Disord. 2013, 7, 1204–1210. [Google Scholar] [CrossRef]
- Brogan, C.A.; Knussen, C. The disclosure of a diagnosis of an Autism Spectrum Disorder. Autism 2003, 7, 31–46. [Google Scholar] [CrossRef] [PubMed]
- Chamak, B.; Bonniau, B.; Oudaya, L.; Ehrenberg, A. The autism diagnostic experiences of French parents. Autism 2011, 15, 83–97. [Google Scholar] [CrossRef] [PubMed]
- Davis, N.O.; Carter, A.S. Parenting stress in mothers and fathers of toddlers with Autism Spectrum Disorders: Associations with child characteristics. J. Autism Dev. Disord. 2008, 38, 1278–1291. [Google Scholar] [CrossRef] [PubMed]
- Goin-Kochel, R.P.; Mackintosh, V.H.; Myers, B.J. How many doctors does it take to make an autism spectrum diagnosis. Autism 2006, 5, 439–451. [Google Scholar] [CrossRef] [PubMed]
- Mansell, W.; Morris, K. A survey of parents’ reactions to the diagnosis of an Autistic Spectrum Disorder by a local service: Access to information and use of services. Autism 2004, 8, 387–407. [Google Scholar] [CrossRef] [PubMed]
- Osborne, L.A.; Reed, P. Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism 2008, 12, 259–274. [Google Scholar] [CrossRef] [PubMed]
- Dempsey, I.; Keen, D.; Pennell, D.; O’Reilly, J.; Neilands, J. Parent stress, parenting competence and family-centered support to young children with an intellectual or developmental disability. Res. Dev. Disabil. 2009, 30, 558–566. [Google Scholar] [CrossRef] [PubMed]
- Dumas, J.E.; Wolf, L.C.; Fisman, S.N.; Culligan, A. Parenting stress, child behavior problems, and dysphoria in parents of children with autism, down syndrome, behavior disorders, and normal development. Exceptionality 1991, 2, 97–110. [Google Scholar] [CrossRef]
- Osborne, L.A.; Reed, P. Stress and self-perceived parenting behaviors of parents of children with autistic spectrum conditions. Res. Autism Spectr. Disord. 2010, 4, 405–414. [Google Scholar] [CrossRef]
- Lecavalier, L.; Leone, S.; Wiltz, J. The impact of behaviour problems on caregiver stress in young people with Autism Spectrum Disorders. J. Intellect. Disabil. Res. 2006, 50, 172–183. [Google Scholar] [CrossRef] [PubMed]
- Bloch, J.S.; Weinstein, J.D. Families of young children with autism. Soc. Work Ment. Health 2010, 8, 23–40. [Google Scholar] [CrossRef]
- Dale, E.; Jahoda, A.; Knott, F. Mothers’ attributions following their child’s diagnosis of Autistic Spectrum Disorder: Exploring links with maternal levels of stress, depression and expectations about their child’s future. Autism 2006, 10, 463–479. [Google Scholar] [CrossRef] [PubMed]
- Quine, L.; Pahl, J. First diagnosis of severe mental handicap: A study of parental reactions. Dev. Med. Child Neurol. 1987, 29, 232–242. [Google Scholar] [CrossRef] [PubMed]
- Robbins, F.R.; Dunlap, G.; Plienis, A.J. Family characteristics, family training, and the progress of young children with autism. J. Early Interv. 1991, 15, 173–184. [Google Scholar] [CrossRef]
- Hutton, A.M.; Caron, S.L. Experiences of families with children with autism in rural New England. Focus Autism Other Dev. Disabil. 2005, 20, 180–189. [Google Scholar] [CrossRef]
- Midence, K.; O’Neil, M. The experience of parents in the diagnosis of autism: A pilot study. Autism 1999, 3, 273–285. [Google Scholar] [CrossRef]
- Logue-Kennedy, M.; Dewitt, P.; Dignan, E.; O’Hagan, L.; Lyons, R.; O’Shaughnessy, C. Collaboration in addressing current and future service provision for Auditory Processing Disorder (APD) for children in Ireland. Phys. Rev. 2008, 13, 2. [Google Scholar]
- Minnes, P.; Steiner, K. Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or down syndrome. Child Care Health Dev. 2009, 35, 250–256. [Google Scholar] [CrossRef] [PubMed]
- Mulligan, J.; Steel, L.; MacCulloch, R.; Nicholas, D. Evaluation of an information resource for parents of children with autism spectrum disorder. Autism 2010, 14, 113–126. [Google Scholar] [CrossRef] [PubMed]
- Bartolo, R. Communicating a diagnosis of developmental disability to parents. Child Care Health Dev. 2002, 28, 65–71. [Google Scholar] [CrossRef] [PubMed]
- Osborne, L.A.; McHugh, L.; Saunders, J.; Reed, P. Parenting stress reduces the effectiveness of early teaching interventions for Autistic Spectrum Conditions. J. Autism Dev. Disord. 2008, 38, 1092–1103. [Google Scholar] [CrossRef] [PubMed]
- Eisenhower, A.S.; Baker, B.L.; Blacher, J. Preschool children with intellectual disability: Syndrome specificity, behaviour problems, and maternal well-being. J. Intellect. Disabil. Res. 2005, 49, 657–671. [Google Scholar] [CrossRef] [PubMed]
- Hayes, S.A.; Watson, S.L. 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. J. Autism Dev. Disord. 2013, 43, 629–642. [Google Scholar] [CrossRef] [PubMed]
- Gallagher, A.; Phillpis, A.C.; Drayson, M.T.; Carroll, D. Parental caregivers of children with developmental disabilities mount a poor antibody response to pneumococcal vaccination. Brain Behav. Immun. 2009, 23, 338–346. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Boyd, B.A. Examining the relationship between stress and lack of social support in mothers of children with autism. Focus Autism Other Dev. Disabil. 2002, 17, 208–215. [Google Scholar] [CrossRef]
- Wolf, L.C.; Noh, S.; Fisman, S.N.; Speechley, M. Brief report: Psychological effects of parenting stress on parents of autistic children. J. Autism Dev. Disord. 1989, 19, 157. [Google Scholar] [CrossRef]
- Allik, H.; Larsson, J.-O.; Smedje, H. Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health Qual. Life Outcomes 2006, 4, 1. [Google Scholar] [CrossRef] [PubMed]
- Mugno, D.; Ruta, L.; D’Arrigo, V.G.; Mazzone, L. Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health Qual. Life Outcomes 2007, 5, 22. [Google Scholar] [CrossRef] [PubMed]
- Kazak, A.; Alderfer, M.; Rourke, M.; Simms, S.; Streisand, R.; Grossman, J. Posttraumatic stress symptoms (PTSS) and posttraumatic stress disorder (PTSD) in families of adolescent childhood cancer survivors. J. Pediatr. Psychol. 2004, 29, 211–219. [Google Scholar] [CrossRef] [PubMed]
- Mowery, B.D. Post-traumatic stress disorder (PTSD) in parents: Is this a significant problem? Pediatr. Nurs. 2011, 37, 89–92. [Google Scholar] [PubMed]
- Scottish Intercollegiate Guidelines Network (SIGN). Assessment, Diagnosis and Clinical Interventions for Children and Young People with Autism Spectrum Disorders. A National Clinical Guideline; Scottish Intercollegiate Guidelines Network (SIGN): Edingburg, UK, 2007. [Google Scholar]
- Sloper, P.; Turner, S. Service needs of families of children with severe physical disability. Child Care Health Dev. 1993, 18, 259–282. [Google Scholar] [CrossRef]
- Gotham, K.; Pickles, A.; Lord, C. Standardizing ADOS scores for a measure of severity in Autism Spectrum Disorders. J. Autism Dev. Disord. 2009, 39, 693–705. [Google Scholar] [CrossRef] [PubMed]
- Lord, C.; Rutter, M.; DiLavore, P.C.; Risi, S. ADOS. Autism Diagnostic Observation Schedule Manual; WPS: Los Angeles, CA, USA, 1999. [Google Scholar]
- Roid, G.H.; Miller, L.J. Leiter International Performance Scale—Revised; Stoelting: Wood Dale, IL, USA, 1997. [Google Scholar]
- Dunn, L.; Dunn, L. Peabody Picture Vocabulary Test-III; American Guidance Service: Circle Pines, MN, USA, 1997. [Google Scholar]
- Zigmond, A.S.; Smith, R.P. The hospital anxiety and depression scale. Acta Psychiatr. Scand. 1983, 67, 361–370. [Google Scholar] [CrossRef] [PubMed]
- Friedrich, W.N.; Greenberg, M.T.; Crnic, K. A short-form of the questionnaire on resources and stress. Am. J. Ment. Defic. 1993, 88, 41–48. [Google Scholar]
- Osborne, L.A.; McHugh, L.; Saunders, J.; Reed, P. A possible contra-indication for early diagnosis of autistic spectrum conditions: Impact on parenting stress. Res. Autism Spectr. Disord. 2008, 2, 707–715. [Google Scholar] [CrossRef]
Scale | Mean (SD; Range) | Leiter | BPVS |
---|---|---|---|
ADOS (CSS) | 6.54 (1.81; 3–10) | −0.457 *** | −0.411 *** |
Leiter-R (Standard) | 70.16 (16.47; 35–109) | 0.822 *** | |
BPVS (Standard) | 63.44 (18.95; 2–104) |
Mean (SD) | Speed | Interpersonal Skills | Communcation | Helpfulness | Coherence | Overall | |
---|---|---|---|---|---|---|---|
3.63 (2.02) | 4.22 (1.95) | 3.61 (1.87) | 3.39 (2.04) | 3.84 (2.12) | 18.69 (7.33) | ||
Parent age | 39.34 (8.24) | 0.043 | 0.014 | 0.148 | −0.115 | −0.005 | −0.011 |
Autism Spectrum Disorder (ASD) Severity | 24.02 (7.13) | −0.054 | −0.094 | −0.066 | 0.101 | 0.036 | −0.018 |
Intellectual Functioning | 70.16 (16.47) | 0.164 * | 0.053 | 0.159 * | 0.018 | 0.035 | 0.115 |
Verbal Functioning | 63.44 (18.95) | 0.208 ** | 0.124 | 0.219 ** | 0.087 | 0.132 | 0.209 ** |
Child age | 8.64 (4.53) | −0.048 | −0.053 | −0.017 | −0.109 | −0.050 | −0.040 |
Child age at diagnosis | 5.45 (3.85) | −0.267 *** | −0.120 | −0.100 | −0.047 | 0.000 | −0.155 * |
Child age at first problem | 2.41 (2.72) | −0.117 | 0.051 | 0.013 | −0.008 | 0.085 | −0.073 |
Time to diagnosis | 35.01 (37.75) | −0.185 * | −0.110 | −0.074 | −0.015 | 0.012 | −0.094 |
Duration of diagnosis | 16.75 (11.14) | −0.148 | −0.093 | −0.093 | 0.011 | 0.028 | −0.092 |
Number professionals | 5.41 (2.46) | −0.081 | −0.119 | −0.175 * | 0.100 | −0.200 ** | −0.156 * |
HADS-A | HADS-D | GHQ | QRS | |
---|---|---|---|---|
Mean | 10.67 | 9.59 | 29.98 | 26.77 |
(SD) | (3.95) | (3.37) | (19.31) | (9.13) |
Parent age | −0.064 | 0.112 | −0.255 * | −0.041 |
Autism Severity | 0.019 | −0.107 | 0.002 | 0.205 * |
Intellectual Functioning | −0.067 | 0.117 | 0.015 | −0.318 *** |
Verbal Functioning | −0.162 * | 0.092 | −0.063 | −0.384 *** |
Child age | −0.066 | 0.021 | −0.262 ** | −0.117 |
Child age at diagnosis | 0.046 | 0.080 | −0.104 * | −0.226 * |
Child age at first problem | 0.015 | 0.005 | 0.131 | −0.003 |
Time to diagnosis | −0.003 | 0.053 | −0.257 * | −0.308 *** |
Duration of diagnosis | −0.048 | 0.042 | −219 * | −0.306 *** |
Number of professionals | 0.421 *** | −0.056 | 0.178 * | 0.068 |
HADS-A | HADS-D | GHQ | QRS | |
---|---|---|---|---|
Perceived speed | −0.295 ** | −0.222 ** | −0.208 ** | −0.064 |
Prof. interpersonal skill | −349 *** | −0.103 | −0.275 ** | −0.007 |
Prof communication | −0.362 *** | −0.107 | −0.231 ** | −0.136 |
Helpfulness | −472 *** | −0.227 ** | −0.216 * | −0.030 * |
Coherence | −0.584 *** | −0.086 | −0.283 ** | −0.156 ** |
Overall | −0.542 *** | −0.211 ** | −0.294 *** | −0.155 * |
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Reed, P.; Picton, L.; Grainger, N.; Osborne, L.A. Impact of Diagnostic Practices on the Self-Reported Health of Mothers of Recently Diagnosed Children with ASD. Int. J. Environ. Res. Public Health 2016, 13, 888. https://doi.org/10.3390/ijerph13090888
Reed P, Picton L, Grainger N, Osborne LA. Impact of Diagnostic Practices on the Self-Reported Health of Mothers of Recently Diagnosed Children with ASD. International Journal of Environmental Research and Public Health. 2016; 13(9):888. https://doi.org/10.3390/ijerph13090888
Chicago/Turabian StyleReed, Phil, Lucy Picton, Nicole Grainger, and Lisa A. Osborne. 2016. "Impact of Diagnostic Practices on the Self-Reported Health of Mothers of Recently Diagnosed Children with ASD" International Journal of Environmental Research and Public Health 13, no. 9: 888. https://doi.org/10.3390/ijerph13090888
APA StyleReed, P., Picton, L., Grainger, N., & Osborne, L. A. (2016). Impact of Diagnostic Practices on the Self-Reported Health of Mothers of Recently Diagnosed Children with ASD. International Journal of Environmental Research and Public Health, 13(9), 888. https://doi.org/10.3390/ijerph13090888