Abstract
The parents of children with life threatening or terminal illnesses were interviewed about their experiences of the way in which they were told the diagnosis. The interview was piloted on 25 families and then administered in a semistandardised manner to a further 45 families. Parents were asked how satisfied they were with the initial discussion about the diagnosis: 23 families were satisfied with how much information they were given; 22 with the information concerning prognosis; 20 with the pacing of the information; 33 with who was present; 32 with arrangements for follow up; and 26 were satisfied overall with the initial discussion. Clear patterns emerged about which elements of the discussion parents appreciated or resented. For example, they valued an open, sympathetic, direct, and uninterrupted discussion of the diagnosis in private that allowed sufficient time for them to take the news in and for doctors to repeat and clarify information. They disliked evasive or unsympathetic brief interviews. All parents remembered vividly the manner in which the diagnosis was imparted, and some were still preoccupied with this many years later. Analyses were carried out to test the possibility that reports of satisfaction and dissatisfaction were a function of current depression and anxiety, but no evidence was found for this.
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Selected References
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- Cunningham C. C., Morgan P. A., McGucken R. B. Down's syndrome: is dissatisfaction with disclosure of diagnosis inevitable? Dev Med Child Neurol. 1984 Feb;26(1):33–39. doi: 10.1111/j.1469-8749.1984.tb04403.x. [DOI] [PubMed] [Google Scholar]
- Findlay I. I., Smith P., Graves P. J., Linton M. L. Chronic disease in childhood: a study of family reactions. Br J Med Educ. 1969 Mar;3(1):66–69. doi: 10.1111/j.1365-2923.1969.tb01595.x. [DOI] [PubMed] [Google Scholar]
- Firth M. A. Diagnosis of Duchenne muscular dystrophy: experiences of parents of sufferers. Br Med J (Clin Res Ed) 1983 Feb 26;286(6366):700–701. doi: 10.1136/bmj.286.6366.700. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Fulton R., Gottesman D. J. Anticipatory grief: a psychosocial concept reconsidered. Br J Psychiatry. 1980 Jul;137:45–54. doi: 10.1192/bjp.137.1.45. [DOI] [PubMed] [Google Scholar]
- Greenberg L. W., Jewett L. S., Gluck R. S., Champion L. A., Leikin S. L., Altieri M. F., Lipnick R. N. Giving information for a life-threatening diagnosis. Parents' and oncologists' perceptions. Am J Dis Child. 1984 Jul;138(7):649–653. doi: 10.1001/archpedi.1984.02140450031010. [DOI] [PubMed] [Google Scholar]
- Kaplan D. M., Grobstein R., Smith A. Predicting the impact of severe illness in families. Health Soc Work. 1976 Aug;1(3):71–82. doi: 10.1093/hsw/1.3.71. [DOI] [PubMed] [Google Scholar]
- Koch C. R., Hermann J., Donaldson M. H. Supportive care of the child with cancer and his family. Semin Oncol. 1974 Mar;1(1):81–86. [PubMed] [Google Scholar]
- Mulhern R. K., Crisco J. J., Camitta B. M. Patterns of communication among pediatric patients with leukemia, parents, and physicians: prognostic disagreements and misunderstandings. J Pediatr. 1981 Sep;99(3):480–483. doi: 10.1016/s0022-3476(81)80355-1. [DOI] [PubMed] [Google Scholar]
- Myers B. A. The informing interview. Enabling parents to 'hear' and cope with bad news. Am J Dis Child. 1983 Jun;137(6):572–577. [PubMed] [Google Scholar]
- Quine L., Pahl J. First diagnosis of severe mental handicap: characteristics of unsatisfactory encounters between doctors and parents. Soc Sci Med. 1986;22(1):53–62. doi: 10.1016/0277-9536(86)90308-4. [DOI] [PubMed] [Google Scholar]