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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families Consultation and Research Report Child’s Gender 51.6% of the children whose parents responded to the questionnaire were male and 46.2% were female. Four parents did not specify their child’s gender. Figure 5.1 - Child’s Gender Child’s age at time of response to Questionnaire Parents were asked to indicate their child’s age at the time of responding to the questionnaire. Of those who responded to this question, all except two children were over two and a half years (30 months) and had not yet reached their seventh birthday (84 months). Three parents (1.6%) did not indicate their child’s age at the time of responding to the questionnaire. The age range captured indicates that although the researchers requested that the questionnaire be sent to the parents of children between the ages of three and six, some parents of younger children received the questionnaire. For one parent whose child was older than seven years there were two children in the family with a disability, and the questionnaire was answered in relation to the older child, who had received a diagnosis more recently than their younger sibling. Frequency 45 30 20 10 0 Female 85 Missing 4 Male 95 Figure 5.2 - Child’s age at time of response | 25 50 75 100 125 Age of child in months 89 Missing Male Female 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Diagnosis given at one time or evolved For over half (52.7%) of the children the diagnosis came at one particular time whereas for 35.9% the diagnosis evolved over time. In responding to the question of how their child’s diagnosis had evolved, 7.6% of families indicated that their child’s diagnosis was still uncertain at the time of responding to the questionnaire. This figure is higher than the number of families (4.3%) who indicated earlier in response to the question of ‘diagnosis/syndrome name’ that they were not given a name for their child’s diagnosis, and may indicate that there was a small number of families for whom a preliminary diagnosis had begun at the time of responding but the final diagnosis had not been made. Ten parents did not respond to this question. Frequency 100 80 Figure 5.3 - Diagnosis came at one time or evolved over time Diagnosis envolved over time Child’s Age at Diagnosis Almost half (46.2%) of the parents received their child’s diagnosis at the time of birth and a much smaller proportion (4.3%) received the news in pregnancy. One family received their child’s diagnosis at the time of adopting their child. The following chart indicates the age of the child when the diagnosis was received (excluding those whose children received their diagnosis before or at birth). 18 There were 91 families who did not receive their child’s diagnosis at or before birth. 45% of these families had received their child’s diagnosis by the time that the child had reached one year. A further 49.5% of these families received the diagnosis when their child was between 1 and 4 years. A small number of respondents had received the diagnosis at a later age, with the eldest child receiving their diagnosis shortly before their eleventh birthday. There were seven non-respondents in this section. Frequency 60 40 20 0 40 30 20 10 0 66 Figure 5.4 - Age of child at time of diagnosis 90 97 Diagnosis came at one particular time 11 Diagnosis is still uncertain | 0.00 25.00 50.00 75.00 100.00 125.00 Child’s age in months at time of diagnosis (diagnosis after birth) 18 For the purposes of this calculation any parents who indicated that the diagnosis was received within the first week were re-categorised as receiving the diagnosis ‘At Birth’

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