The Negative Consequences of Closed Access to Scientific Data and Other Barriers to Information Access - An Analysis of the Health Decisions of Parents Having Children with Autism Spectrum Disorder (ASD)
A diagnosis of autism can present a great challenge to the family with autistic children, especially to parents. Health information-seeking behaviour is described as one of many problem-solving and stress-coping strategies in literature. The information was found to have many important functions, e.g. it can contribute to the process of acceptance, it enables parents to access health care services, then to manage their child's difficult behaviour and it might help parents to respond more effectively to the range of life-changing events that may induce stress. There are many barriers to meeting the information needs of parents having autistic children. Two different types of barriers to information access can be identified: "objective barriers" (problems communicating with health care professionals, healthcare professionals lack of skills and knowledge of managing children with autism, economic barriers to the access of information, information overload and a low level of health literacy) and "subjective barriers" (experience of social isolation and the parents' emotional state during diagnosis, which have the potential to make the families prone to misinformation).The main aim of this paper is to describe the negative consequences of barriers to the access of scientific research and evidence-based healthcare information (e.g.: spreading anti-vaccine messages). The problem will be discussed using the example of the information-seeking and health-related behaviour of parents with autistic children. (original abstract)
- ASD. Data and Statistics, 2014, http://www.cdc.gov/ncbddd/autism/data.html; accessed: 24.03.2015.
- Autyzm - Sytuacja dorosłych. Raport 2013, Fundacja SYNAPSIS, Warszawa 2014.
- Mulligan J., Steel L., Macculloch R., Nicholas D., Evaluation of an information resource for parents of children with Autism Spectrum Disorder, "Autism. Int. J. Res. Pract." 2010; 14 (2): 113-126.
- Osborne L.A., Reed P., Parents' perceptions of communication with professionals during the diagnosis of autism, "Autism" 2008; 12 (3): 309-324.
- Pain H., Coping with a child with disabilities from the parents' perspective: the function of information, "Child Care Health Dev." 1999; 25 (4): 299-312.
- Murphy T., Tierney K., Parents of Children with Autistic Spectrum Disorders (ASD): A Survey of Information Needs, http://www.ncse.ie/uploads/1/parents_of_children_with_asd.pdf; accessed: 24.03.2016.
- 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 Int. J. Res. Pract." 2004; 8 (4): 387-407.
- Hall H.R., Graff J.C., Parenting challenges in families of children with autism: a pilot study, "Issues Compr. Pediatr. Nurs." 2010; 33 (4): 187-204.
- Goin-Kochel R.P., How many doctors does it take to make an Autism Spectrum Diagnosis?, "Autism" 2006; 10 (5): 439-451.
- Rhoades R.A., Scarpa A., Salley B., The importance of physician knowledge of Autism Spectrum Disorder: results of a parent survey, "BMC Pediatr." 2007; 7: 37.
- Nissenbaum M.S., The interpretative conference: sharing a diagnosis of autism with families, "Focus Autism Dev. Disabil." 2002; 17: 30-43.
- Mackintosh V.H., Myers B.J., Goin-Kochel R.P., Sources of information and support used by parents of children with Autism Spectrum Disorders, "J. Dev. Disabil." 2005; 12 (1): 41-51.
- Derguy C., Having a child with autism: What kind of needs and support expectations for parents?, "Eur. Psychiatry" 2013; 28 (suppl. 1).
- Brogan C.A., Knussen C., The disclosure of a diagnosis of an Autistic Spectrum Disorder: determinants of satisfaction in a sample of Scottish parents, "Autism" 2003; 7 (1): 31-46.
- Abbott M., Bernard P., Forge J., Communicating a diagnosis of Autism Spectrum Disorder - a qualitative study of parents' experiences, "Clin. Child Psychol. Psychiatry" 2013; 18 (3): 370-382.
- O'Reilly M., Karim K., Lester J.N., Separating "emotion" from "the science": exploring the perceived value of information for parents and families of children with Autistic Spectrum Disorder, "Clin. Child Psychol. Psychiatry" 2015; 20 (3): 500-514.
- Stoner J.B., Bock S.J., Thompson J.R., Angell M.E., Heyl B.S., Crowley E.P., Welcome to our world: parents' perceptions of interactions between parents of young children with ASD and education professionals, "Focus Autism Dev. Disabil." 2005; 20 (1): 39-51.
- Starke M., Moller A., Parents' needs for knowledge concerning the medical diagnosis of their children, "J. Child Health Care Prof. Work Child Hosp. Community" 2002; 6 (4): 245-257.
- Benderix Y., Nordstrom B., Sivberg B., Parents' experience of having a child with autism and learning disabilities living in a group home: a case study, "Autism Int. J. Res. Pract." 2006; 10 (6): 629-641.
- Ludlow A., Skelly C., Rohleder P., Challenges faced by parents of children diagnosed with autism spectrum disorder, "J. Health Psychol." 2012; 17 (5): 702-711.
- Stephenson J., Carter M., Kemp C., Quality of the information on educational and therapy interventions provided on the web sites of national autism associations, "Res. Autism Spectr. Disord." 2012; 6 (1): 11-18.
- Metz B., Mulick J.A., Butter E.M., Autism: A late-20th-century fad magnet, in: J.W. Jacobson, R.M. Foxx, J.A. Mulick (eds), Controversial Therapies for Developmental Disabilities Fad, Fashion, and Science in Professional Practice, Lawrence Erlbaum, Mahwah, NJ 2005: 237-263.
- Matson J.L., Adams H.L., Williams L.W., Rieske R.D., Why are there so many unsubstantiated treatments in autism?, "Res. Autism Spectr. Disord." 2013; 7 (3): 466-474.
- Bazzano A., Zeldin A., Schuster E., Barrett C., Lehrer D., Vaccine-related beliefs and practices of parents of children with Autism Spectrum Disorders, "Am. J. Intellect. Dev. Disabil." 2012; 117 (3): 233-242.
- Abu Kuwaik G., Roberts W., Zwaigenbaum L., Bryson S., Smith I.M., Szatmari P. et al., Immunization uptake in younger siblings of children with Autism Spectrum Disorder, "Autism Int. J. Res. Pract." 2014; 18 (2): 148-155.
- Rosenberg R.E., Law J.K., Anderson C., Samango-Sprouse C., Law P.A., Survey of vaccine beliefs and practices among families affected by Autism Spectrum Disorders, "Clin. Pediatr. (Phila.)" 2013; 52 (9): 871-874.
- Wakefield A.J., Murch S.H., Anthony A., Linnell J., Casson D.M., Malik M. et al., Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children, "Lancet" 1998; 351 (9103): 637-641.
- Offit P.A., Coffin S.E., Communicating science to the public: MMR vaccine and autism, "Vaccine" 2003; 22 (1): 1-6.
- Godlee F., Smith J., Marcovitch H., Artykuł Wakefielda wiążący szczepionkę MMR z autyzmem był oszustwem. 2011, http://pediatria.mp.pl/szczepieniaochronne/show.html?id=59132; accessed: 24.03.2015.
- The Editors of the Lancet, Retraction - Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children, "The Lancet" 2010; 375 (9713): 445.
- Hebert E.B., Koulouglioti C., Parental beliefs about cause and course of their child's autism and outcomes of their beliefs: a review of the literature, "Issues Compr. Pediatr. Nurs." 2010; 33 (3): 149-163.
- Horvath K., Stefanatos G., Sokolski K.N., Wachtel R., Nabors L., Tildon J.T., Improved social and language skills after secretin administration in patients with Autistic Spectrum Disorders, "J. Assoc. Acad. Minor Physicians Off. Publ. Assoc. Acad. Minor. Physicians" 1998; 9 (1): 9-15.
- Levy S.E., Hyman S.L., Novel treatments for Autistic Spectrum Disorders, "Ment. Retard Dev. Disabil. Res. Rev." 2005; 11 (2): 131-142.
- Williams K., Wray J.A., Wheeler D.M., Intravenous secretin for Autism Spectrum Disorders (ASD), "Cochrane Database Syst. Rev." 2012; 4 (Journal Article): CD003495.
- Goin-Kochel R.P., Myers B.J., Mackintosh V.H., Parental reports on the use of treatments and therapies for children with Autism Spectrum Disorders, "Res. Autism Spectr. Disord." 2007; 1 (3): 195-209.
- Levy S.E., Hyman S.L., Complementary and alternative medicine treatments for children with Autism Spectrum Disorders, "Child Adolesc. Psychiatr. Clin. N. Am." 2008; 17 (4): 803-20, ix.
- Al Anbar N.N., Dardennes R.M., Prado-Netto A., Kaye K., Contejean Y., Treatment choices in Autism Spectrum Disorder: the role of parental illness perceptions, "Res. Dev. Disabil." 2010; 31 (3): 817-828.
- Whitehouse A.J., Complementary and alternative medicine for Autism Spectrum Disorders: rationale, safety and efficacy, "J. Pediatr. Child Health" 2013; 49 (9): E438-442: quiz E442.
- Green V.A., Pituch K.A., Itchon J., Choi A., O'Reilly M., Sigafoos J., Internet survey of treatments used by parents of children with autism, "Res. Dev. Disabil." 2006; 27 (1): 70-84.
- Bowker A., D'Angelo N.M., Hicks R., Wells K., Treatments for autism: parental choices and perceptions of change, "J. Autism Dev. Disord." 2011; 41 (10): 1373-1382.
- Hanson E., Kalish L.A., Bunce E., Curtis C., McDaniel S., Ware J. et al., Use of complementary and alternative medicine among children diagnosed with Autism Spectrum Disorder, "J. Autism Dev. Disord." 2007; 37 (4): 628-636.
- Wong H.H., Smith R.G., Patterns of complementary and alternative medical therapy use in children diagnosed with Autism Spectrum Disorders, "J. Autism Dev. Disord." 2006; 36 (7): 901-909.
- Mandell D.S., Novak M., The role of culture in families' treatment decisions for children with Autism Spectrum Disorders, "Ment. Retard Dev. Disabil. Res. Rev." 2005; 11 (2): 110-115.
- Miller V.A., Schreck K.A., Mulick J.A., Butter E., Factors related to parents' choices of treatments for their children with Autism Spectrum Disorders, "Res. Autism Spectr. Disord." 2012; 6 (1): 87-95.
- Rahbar M.H., Ibrahim K., Assassi P., Knowledge and attitude of general practitioners regarding autism in Karachi, Pakistan, "J. Autism Dev. Disord." 2011; 41 (4): 465-474.
- Garg P., Lillystone D., Dossetor D., Kefford C., Chong S., An exploratory survey for understanding perceptions, knowledge and educational needs of general practitioners (GSs) regarding autistic disorders in New South Wales (NSW), Australia, "J. Clin. Diagn. Res. JCDR" 2014; 8 (7): PC01-09.
- Shah K., Research in brief: what do medical students know about autism?, "Autism Int. J. Res. Pract." 2001; 5 (2): 127-133.
- Kulczycki E., Otwarte czasopisma. Zakładanie czasopism naukowych oraz transformacja czasopism zamkniętych, Stowarzyszenie EBIB, Toruń 2013.