Views
5 years ago

chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

REFERENCES Informing

REFERENCES Informing Families Consultation and Research Report Abel, J., Dennison, S., Senior-Smith, G., Dolley, T., Lovett, J. & Cassidy, S. (2001). Breaking bad news – development of a hospital-based training workshop The Lancet Oncology, 2, 380-384 Ablon, J. (2000). Parent’s responses to their child’s diagnosis of neurofibromatosis 1. American Journal of Medical Genetics, 93, 136-42. Abramsky, L. (2001) What parents are told after prenatal diagnosis of a sex chromosome abnormality: interview and questionnaire study. British Medical Journal, 322, 463-466. Ahmann, E. (1998) Review and commentary: two studies regarding giving “bad news”. Pediatric Nursing, 24(6), 554-6. Andrew, A.K. (1989) Meeting the needs of young deaf-blind children and their parents. I. Child Health and Development, 15, 195-206. Baird, G, Mc Conachie, H, & Scrutton, D. (2000) Parents perceptions of disclosure of the diagnosis of cerebral palsy. Arch Dis Child, 83, 475-480. Barnett, D., Hunt, K.H., Butler, C.M., McCaskill, J.W.IV, Kaplan-Estrin, M. & Pipp-Siegel, S. (1999) Indices of attachment disorganisation among toddlers with neurological and non-neurological problems. (in Attachment Disorganisation (eds J. Soloman & C. George), pp.189- 212. Guilford Press, New York. Barnett, M.; Fisher, D.; Cooke, H.; James, P. & Dale, J. (2007) Breaking bad news: consultants' experience, previous education and views on educational format and timing. Medical Education, 41, 947-956 Bowlby, J. (1969) Attachment and Loss, Volume 1: Attachment. Hogarth Press, London. Brogan, A. and Knussen, C. (2003) The disclosure of a diagnosis of an autistic spectrum disorder. Autism, 7(1), 31-46. Buckman, R. (1984) How to break bad news; why is it so difficult? British Medical Journal, 288, 1597-9. Campbell, E.M., Sanson-Fisher, R.W. (1998) Breaking bad news 3: Encouraging the adoption of best practices. Behav Med, 24 (2), 73-80. Clements, M. & Barnett, D. (2002) Parenting and attachment among toddlers with congenital anomalies. Infant Mental Health Journal, 23, 625-642. Cunningham, C. (1994) Telling Parents their Child has a Disability. In Mittler, P. & Mitter, H. (Eds), Innovations in Family Support for People with Learning Disabilities. Lancashire, England: Lisieux Hall. Cunningham, C. Morgan, P.A. & McGuckan, R.B. (1984) Down’s Syndrome: Is dissatisfaction with disclosure of diagnosis inevitable? Developmental Medicine and Child Neurology, 26, 33-39. Cunningham, Newton, R., Appleton, R., Hosking, G. & McKinlay, I. (2002) Epilepsy - giving the diagnosis. A survey of British paediatric neurologists. Seizure, 11(8), 500-11. Davies, C. (2000) Motherhood. Down’s syndrome: a breast feeding challenge British Journal of Midwifery, 8(7), 432-7. Davis, H. (1993) Counselling Parents of Children with Chronic Illness or Disability. Leicester: The British Psychological Society. Degener & Koster-Dreese Degener (1995) Human Rights and Disabled Persons, London: Martinus Nijhoff Publishers. Department of Health (1990). Needs and Abilities, Report on the Review Group on Mental Handicap Services. Dublin. Stationery Office. Department of Health and Children (2007) Standards for the Assessment of Need process under Part 2 of the Disability Act 2005. The Stationery Office Government Publications. Dublin. Department of Health (1996a). A Strategy for Equality - Report of the Commission on the Status of People with Disabilities. The Stationery Office Government Publications. Dublin. Department of Health (1996b). Towards an Independent Future – Report of the Review Group on Health and Personal Social Services for People with Physical and Sensory Disabilities. The Stationery Office Government Publications. Dublin. Department of Health (2001). Quality and Fairness, A Health System for You. The Stationery Office Government Publications. Dublin. Department of Justice Equality and Law Reform (1999). Towards Equal Citizenship – Progress Report on the Implementation of the Recommendations of the Commission on the Status of People with Disabilities. The Stationery Office Government Publications. Dublin. Department of Justice Equality and Law Reform (2004) Education for Persons with Special Educational Needs Act 2004. The Stationery Office Government Publications. Dublin. Department of Justice Equality and Law Reform (2005) National Disability Strategy. The Stationery Office Government Publications. Dublin. Dickson, D., Hargie, O., Brunger, K. & Stapleton, K. (2002) Health professionals perceptions of breaking bad news International Journal Health Care Quality Assurance Inc Leadership Health Serv, 15(6-7), 324-336. Doran, J. (1999) When Babies are Born with Special Needs: Revelation of the News, Reactions to it and Coping with the Child on a Short and Long Term Basis. M.Sc in Applied Social Research, Trinity College Dublin. Dublin. 161

Informing Families Consultation and Research Report REFERENCES Downs Syndrome Association (2006) Pregnancy and Birth. Experiences of Parents who Have a Child with Downs Syndrome. Middlesex: Downs Syndrome Association National Office. (www.down-syndrome.org.uk). Doyle, A., Galligan, K., Barron, S. & Mulvany, F. (2006). National Physical and Sensory Disability Database Committee Annual Report 2005. Dublin: Health Research Board. Doyle, A. (2004) Report of the Maternity and Intellectual Disability Review Group on Integrated Patient Care, Dublin: Eastern Regional Health Authority. Fallowfield, L. & Jenkins, V. (2004). Communicating sad, bad, and difficult news in medicine. Lancet, 363, 312-19. Featherstone, H. (1980) A Difference in the Family. Life with a Disabled Child. New York: Basic Books. Garwick, A., Paterson, J., Bennett, F.C. & Blum, R.W. (1995) How Families First Learn about Their Child’s Chronic Condition. Archive Paediatric Adolescent Medicine, 149, 991-997. Gatford, A. (2001) Learning disability nursing. Down's syndrome: experiences of mothers from different cultures. British Journal of Nursing, Oct 11-24; 10(18):1193-9. Girgis, A. & Sanson-Fisher, R.W. (1995) Breaking bad news: Consensus guidelines for medical practitioners. Journal of Clinical Oncology, 13(9),2449-2456. Girgis, A. & Sanson-Fisher, R.W. (1998) Breaking bad news 1: Current best advice for clinicians. Behavioural Medicine, 24(2), 53-59. Guralnick, M.J. (1997) The Effectiveness of Early Intervention. Paul H. Brookes publishing Co., Baltimore, Maryland. Hammond, I. Franche, R.L., Black, D.M., & Gaudette, S. (1999) The radiologist and the patient: breaking bad news. Canadian Association of Radiologists Journal, 50(4), 233-34. Hanson, M. & Lynch, E.W. (1995) Early intervention - Implementing Child and Family Services for Infants and Toddlers who are at risk or disabled. Austin, Texas: Pro-Ed. Hasnat, M.J. & Graves, P. (2000) Disclosure of developmental disability: a study of paediatricians' practices. Journal of Paediatrics and Child Health, 36(1), 27-31. Hasnat, M.J. & Graves, P. (2000) Disclosure of developmental disability: A study of parent satisfaction and the determinants of satisfaction. Journal of Paediatrics and Child Health, 36(1), 32-35. Hatton, C., Akram, Y., Shah, R., Robertson, J. & Emerson, E. (2002) Supporting South Asian families with a child with severe disabilities. Institute for Health Research, Lancaster University: Lancaster (Department of Health) Hatton, C., Akram, Y., Robertson, J., Shah, R. & Emerson, E. (2003) The disclosure process and its impact on south Asian families with a child with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 16, 177-188. Health Information Quality Authority (2007) Standards for the Assessment of Need. See website: www.hiqa.ie Hedov, G., Wikblad, K. & Anneren, G. (2002) First information and support provided to parents of children with Down syndrome in Sweden: Clinical goals and parental experiences. Acta Paediatr, 91(12), 1344-9. Hedov, G. (2002) Swedish parents of children with Down’s syndrome. A study on the initial information and support, and the subsequent daily life. Comprehensive summaries of Uppsala Dissertations from the Faculty of Medicine 1198. Acta Universitatis Upsaliensis, Uppsala. Herbert, E. (1995) Parents’ reported responses to the disclosure of Down Syndrome. Down Syndrome Research and Practice, 3(2), 39-44 Howe, D. (2006) Disabled children, parent-child interaction and attachment. Child and Family Social Work, 11, 95-106. Huebner, R.A., & Thomas, K.R. (1995) The relationship between attachment, psychopathology and childhood disability. Rehabilitation Psychology, 40, 111-124. Johnson, C., Hesssl, D., Blasey, C., Eliez, S., Erba, H., Dyer-Friedman, J. et al (2003) Factors associated with parenting stress in mothers of children with Fragile X Syndrome. Journal of Developmental and Behavioural Paediatrics, 24, 267-275. Kealy, S. (2004) Early Intervention. In Noonan Walsh, P, and Gash, H. (Eds), Lives and Times: Practice, Policy and People with Disabilities. Wicklow: Rathdown Press. Kubler-Ross, E. (1969) On Death and Dying. MacMillan Publishing Co. New York. Leonard, A. (1994, updated 1999) Right From The Start, Looking at Diagnosis and Disclosure. London: SCOPE. Levinson, D. & Gaccione, L. (1997) Health and Illness. Santa Barbara: ABC-CLIO, pp. 102–4. Lewis, V. (2003) Development and Disability. Blackwell, Oxford. Marris, P. (1974) Loss and Change. Routledge Kegan Paul. Marvin, R. & Pianta, R. (1996) Mothers reactions to their child’s diagnosis: relations with security of attachment. Journal of Clinical Child Psychology, 25, 436-445. 162

Best Practice Guidelines - National Federation of Voluntary Bodies
presentation - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
Next Steps Project - National Federation of Voluntary Bodies
Open hearts - National Federation of Voluntary Bodies
Questions re final document - National Federation of Voluntary Bodies
Annual Report 2008 - National Federation of Voluntary Bodies
Annual Report 2005 - National Federation of Voluntary Bodies
Annual Report 2011 - National Federation of Voluntary Bodies
friendships and taboos - National Federation of Voluntary Bodies
Toward Having a Good Life - National Federation of Voluntary Bodies
Achieve More 2 - National Council for Voluntary Organisations
annual report 2006 annual report 2006 - National Federation of ...
Fish friers Review - Mar / Apr 2012 - Issue 2 - National Federation of ...
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
Programme - National Federation of Voluntary Bodies
Programme - National Federation of Voluntary Bodies
Community Participation - National Federation of Voluntary Bodies
NEXT STEPS PROJECT - National Federation of Voluntary Bodies
Reading list - National Federation of Voluntary Bodies
Easy to read programme - National Federation of Voluntary Bodies
Research Strategy - National Federation of Voluntary Bodies
Programme available here - National Federation of Voluntary Bodies
The National Federation of Voluntary Bodies Living Options for ...
Fed Vol-A4x4NL-61760 - National Federation of Voluntary Bodies
Annual Report 2010 - National Federation of Voluntary Bodies