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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Age of

Age of parents at time of diagnosis The age range of parents when their child was diagnosed with a disability is widely spread, with parents younger than 15 years to parents of up to 45 years of age receiving the news. 189 responses were received from 184 questionnaires returned, since some mothers and fathers indicated their respective ages when filling out the questionnaire together, in which case both responses were analysed. 75.7% of parents received their diagnosis between the ages of 26 and 40. Frequency 60 50 40 30 20 10 0 3 15 or less Figure 5.5 - Age of parent at time of diagnosis Age of parent at child’s diagnosis Siblings For 37 families (20.1%) the child with a disability was an only child and 144 families (78.3%) had more than one child. Three families did not specify if they had other children. Fourteen families (7.6%) indicated that they had more than one child with a disability. In each of these 14 cases the families reported that they had two children with disabilities. Where families had more than one child with a disability, parents were asked to complete the remainder of the questionnaire in relation to their child who was most recently diagnosed. 5.2.2 Setting/Location and People Present 6 14 16-20 21-25 26-30 31-35 36-40 41-45 The following section of the report describes the setting in which the diagnosis was communicated to the family, and the people who were present. The vast majority (96.2%) of families first received their child’s diagnosis in face to face meetings, with just 3 families (1.6%) receiving the news by telephone. One family were informed of their child’s disability in writing. Presence of family members In almost three quarters of cases the parent being informed of their child’s disability was accompanied by a partner, family member or friend. In approximately one quarter of cases the child was not present at the time of disclosure. Table 5.8 - Presence of family members People Present n= Yes No Missing Partner, family member or friend present 181 72.8% 25.5% 3 Child present 179 71.2% 26.1% 5 42 91 Informing Families Consultation and Research Report 53 48 17 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report People involved in communicating the diagnosis Parents were asked to indicate the professional disciplines that had told them of their child’s disability, and the service setting in which this had taken place. Four spaces were provided for each of these questions and parents were asked to list each of the disciplines, when the diagnosis had taken place over a series of meetings or when there was more than one professional present. Altogether 330 answers were noted in answer to the question of who had given the news. In 60.9% (n=112) of cases there was a paediatrician involved in disclosure. The range of disciplines reported by the parents as being involved was extremely wide with 85 individually mentioned specialties, which narrowed down into 36 broad categories. As detailed on page 85 of the methodology section of this chapter (Table 5.1), the most commonly reported professional discipline noted was ‘Paediatrician’. This discipline was mentioned in 124 of a total of 330 instances (37.6%). The next most commonly mentioned disciplines were Psychologist in 33 instances (10%) followed by Neurologist in 25 instances (7.6%), Obstetrician/Gynaecologist in 11 instances (3.3%), Midwife in nine instances (2.7%) and Audiologist in eight instances (2.4%). The number recorded far exceeds the number of cases because for a large number of families the diagnosis was communicated by more than one individual, be that in one location or in various locations and/or at various stages. Ninety families were told by just one professional on one occasion. The disciplines reported by parents as being involved in the disclosure of their child’s diagnosis work in the medical, nursing and social care sectors. Presence of additional staff members During the parent and professional focus groups it was indicated that the staff member responsible for informing the parents of their child’s diagnosis is sometimes accompanied by second staff member to provide support to both the professional who is giving the news and to the family. Through the questionnaire survey parents were asked if additional staff members were present at the time of their child’s diagnosis, and if so whether this was comfortable and/or helpful. Over half of the families (57.1%) indicated that additional staff members had been present at the diagnosis. Of the 105 families who reported the presence of additional staff members, clear agreement did not emerge as to whether this was helpful or not, as is shown in Table 5.9 below. Almost half found that it was comfortable and helpful, but many families did not. For the majority of respondents the additional staff member present was not previously known to them. Table 5.9 - Presence of additional staff members Was the presence of other staff members … n= Yes No Missing Comfortable? 86 46.7% 35.2% 19 Helpful? 85 45.7% 35.2% 20 Were the additional staff members known to you? 102 33.3% 63.8% 3 Service setting for disclosure of the diagnosis As discussed earlier, respondents were asked to indicate the service settings in which they had received their diagnosis and in so doing to list each setting if the diagnosis had taken place in a number of stages or across settings. Hence, the sum of the settings reported exceeds the total number of cases. As might be expected from the spread of physical, sensory, intellectual disabilities and autistic spectrum disorders reported, the service settings in which these diagnoses were given were varied and covered hospital, community and disability services. Approximately two fifths of the instances recorded related to the Maternity Hospital, but it is important to note that this does not infer 99 separate cases, as some parents received their diagnosis over a period of time within the Maternity Hospital, often from different disciplines at various times. Paediatric Hospitals and Early Services in various disability service providers were the next most common service settings reported. The settings reported are presented in Table 5.10. 92

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