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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 Information about tests undertaken For over three quarters of children tests were carried out or investigations undertaken subsequent to the disclosure of the disability or developmental concern, and these tests were explained to a large majority of the parents who responded, as can be seen in Table 5.18 below. Table 5.18 - Information regarding tests Information about tests undertaken After the news was given were any n= Yes No Missing tests/investigations undertaken? [Of those people who answered that tests 175 77.7% 16.8% 9 were undertaken] ‘Were they explained to you? 138 87.4% 9.1% 5 Provision of follow-up meetings/appointments and named contacts Approximately half of the families in this study left the initial disclosure meeting with a named contact person who they could meet or telephone for support or information but a significant proportion did not have this support available. Almost a third of parents were not provided with a follow up appointment to discuss the diagnosis or raise concerns. Table 5.19 - Follow-up appointments and named contacts Provision of follow-up n= Yes No Missing Was a contact name provided after the first meeting? Were you offered a follow-up appointment to discuss 178 51.6% 45.1% 6 the diagnosis in more detail or clarify concerns? 175 65.2% 29.9% 9 Of the families that were offered a follow-up, six indicated that they had to wait six months for the appointment, and two stated that their follow-up appointment was scheduled for the following year. Frequency 60 50 40 30 20 10 0 Less than 1 week Figure 5.8 – Length of time before follow-up appointment 7 7 14 32 1-2 weeks 3-4 weeks Longer than 4 weeks Age of parent at child’s diagnosis 97 17 No follow up appointment scheduled 6 Other 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Provision of support options Parents were asked to comment on the provision of support options that had been mentioned in the parent and professional focus groups as being important, and to also indicate their preferences for these elements of support being offered. Tables 5.20 and 5.21 below, show that although approximately half of parents would like to be offered contact with other families of children with disabilities, in reality this was not available for almost three quarters of respondents. A similar trend is observed for the option of counselling. Just over half of parents would like to be put in contact with a social worker or liaison person, which corresponds closely with slightly less than half of parents who were offered this option. In a comments section which was provided with these questions, parents indicated that it is important to appropriately pace the provision of these support options as many parents may wish for contact with other families or the option of counselling at a later date but would find the introduction of these concepts inappropriate if provided too early, for instance at the initial disclosure. Table 5.20 - Support options offered Support option offered n= Yes No Missing Contact with other parents of children with disabilities 167 16.8% 73.9% 17 Contact with a social worker/liaison person 176 48.9% 46.7% 8 The option of counselling 163 15.2% 73.4% 21 Table 5.21 - Parental preferences for support options Parental preference for support options n= Yes No Missing Contact with other parents of children with disabilities 156 46.2% 38.6% 28 Contact with a social worker/liaison person 156 56.5% 28.3% 28 Counselling 157 46.2% 39.1% 27 5.2.5 Culture and Language Cultural and Linguistic Appropriateness of Information As reported in Table 5.23, parents were asked to indicate whether they felt the information they had been provided with was appropriate to their culture (regardless of their first language). Two thirds found that the information was appropriate, for a small percentage it was not, and for almost a quarter of parents they either did not receive any information or ticked ‘Don’t Know’ in relation to this question. Table 5.22 - Cultural Appropriateness of Information Culture n= Yes No No Don’t Missing Information Know Received Was the information you were given appropriate to your culture? 171 65.8% 4.3% 13.6% 9.2% 13 Within the small group of respondents whose first language was not English, less than 10% reported receiving written information in their first language, and less than 20% were provided with the option of an interpreter. Table 5.23 - Language and Interpretation Services Provided Language n= Yes No No Missing Information Received If your first language is not English were you provided with written information in your first language? 8 9.1% 54.5% 9.1% 3 If your first language is not English was the option of an interpreter provided? 8 18.2% 54.5% - 3 98

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