Current Paediatrics
Volume 13, Issue 1 , Pages 30-35, February 2003

Parental reaction to disability

  • Tammy Hedderly (Specialist Registrar Paediatric Neurology)

      Affiliations

    • E3 Corridor Paediatric Neurosciences, Kings College Hospital, Denmark Hill, London, SE5 9RS, UK
    • ,
  • Gillian Baird (Consultant Paediatrician)

      Affiliations

    • Newcomen Centre, Guy's and St Thomas Trust, London, SE1 9RT, UK
    • ,
  • Helen McConachie (Senior Lecturer in Clinical Psychology)

      Affiliations

    • School of Clinical Medical Sciences, Child Health, University of Newcastle, Newcastle upon Tyne, NE2 4AE, UK

Article Outline

Abstract 

When a child is discovered to have a developmental disability, the method and circumstances of telling the parents are of lasting importance, yet there are many difficulties for professionals in carrying out a disclosure of the diagnosis. This paper describes what we know, presented as guidelines, and what we do not know. The immediate impact of their child's disability varies across family members and is influenced by the immediate response of services. Too often, there has been a ‘black hole’ for parents as they wait for support and advice on how to help their child. In the longer term, research now provides an understanding of how families cope and the important resources and strategies on which they draw. Here, we discuss the implications of such research for the services that should be offered and their organization and co-ordination, as well as implications for public policy to combat the economic strain on families.

Keywords: developmental disability, coping, parental attitudes, disclosure of diagnosis

No full text is available. To read the body of this article, please view the PDF online.

 

Back to Article Outline

References 

    REFERENCES
  1. Cunningham CC, Morgan P, McGucken RB. Down's syndrome: is dissatisfaction with disclosure of diagnosis inevitable?. Dev Med Child Neurol. 1984;26:33–39
  2. Sloper P, Turner S. Determinants of parental satisfaction with disclosure of disability. Dev Med Child Neurol. 1993;35:816–825
  3. Quine L, Rutter DR. First diagnosis of severe mental and physical disability: a study of doctor–parent communication. J Child Psychol Psychiatry. 1994;35:1273–1287
  4. Baird G, Scrutton D, McConachie H. Parents' perceptions of disclosure of the diagnosis of cerebral palsy. Arch Dis Child. 2000;83:475–480
  5. Hasnat MJ, Graves P. Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction. J Pediatr Child Health. 2000;36:32–35
  6. Abrams EZ, Goodman JF. Diagnosing developmental problems in children: parents and professionals negotiate bad news. J Pediatr Psychol. 1998;23:87–98
  7. Bartolo PA. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child: Care Health Dev. 2002;28:65–71
  8. Cottrell DJ, Summers K. Communicating an evolutionary diagnosis of disability to parents. Child: Care Health Dev. 1990;16:211–218
  9. O'Sullivan P, Mahoney G, Robinson C. Perceptions of paediatricians' helpfulness: a national study of mothers of young disabled children. Dev Med Child Neurol. 1992;34:1064–1071
  10. Davis H. Counselling Parents of Children with Chronic Illness or Disability. Leicester: BPS Books; 1993;
  11. McConachie H. Breaking the news to family and friends: some ideas to help parents. Ment Handicap. 1991;16:373–381
  12. Bicknell J. The psychopathology of handicap. B J Med Psychol. 1983;56:167–178
  13. Blacher J. Severely Handicapped Young Children and Their Families: Research in Review. London: Academic Press; 1984;
  14. Romans-Clarkson SE, Clarkson FE, Dittner ID. Impact of a handicapped child on mental health of parents. Br Med J Clin Res Edn. 1986;293:1395–1397
  15. Sanders JL, Morgan SB. Family stress and adjustment as perceived by parents of children with autism or Down syndrome: implications for intervention. Child Fam Behav Ther. 1997;19:15–32
  16. Beresford B. Expert Opinions: A National Survey of Parents Caring for a Severely Disabled Child. Bristol: Policy Press; 1995;
  17. Corden A, Sainsbury R, Sloper P. Financial Implications of the Death of a Child. London: Family Policy Studies Centre; 2001;
  18. Beresford B. Resources and strategies: how parents cope with the care of a disabled child. J Child Psychol Psychiatry. 1994;35:171–209
  19. McConachie H. Implications of a model of stress and coping for services to families of young disabled children. Child: Care Health Dev. 1994;20:37–46
  20. Hastings RP, Taunt HM. Positive perceptions in families of children with developmental disabilities. Am J Mental Retard. 2002;107:116–127
  21. Mukherjee S, Beresford B, Sloper P. Unlocking Key Working: An Analysis and Evaluation of Key Worker Services for Families with Disabled Children. Bristol: Policy Press; 1999;
  22. Chamba R, Ahmad W, Hirst M, Lawton D, Beresford B. On the Edge: Minority Ethnic Families Caring for a Severely Disabled Child. Bristol: Policy Press; 1999;
    FURTHER READING
  1. Mitchell W, Sloper P. User-friendly Information for Families with Disabled Children: A Guide to Good Practice. York: York Publishing Services; 2000;
  2. Dobson B, Middleton S, Beardsworth A. The Impact of Childhood Disability on Family Life. York: York Publishing Services for the Joseph Rowntree Foundation; 2001;
  3. Together from the Start. London: DES; 2002;
  • f1 Correspondence to TH. Tel.: +44 (0) 207 737 4000; Fax: +44 (0) 207 346 3445; E-mail: tammyhedderly@hotmail.com

PII: S0957-5839(03)90406-4

doi:10.1054/cupe.2003.0406

Current Paediatrics
Volume 13, Issue 1 , Pages 30-35, February 2003

Article Tools