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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Table 5.13 -

Table 5.13 - Communication of the diagnosis Informing Families Consultation and Research Report Communication n= Yes No Missing During the consultation did you feel that... You were treated with empathy 153 59.2% 23.9% 31 Your child was referred to respectfully 164 77.7% 11.4% 20 You were given the news with hope, and with positive messages 163 46.7% 41.8% 21 The person giving the news had a good understanding of disability 163 62.0% 26.6% 21 The person giving the news was approachable 162 58.7% 29.3% 22 The person giving the news was understanding 167 66.3% 24.5% 17 The person giving the news was direct 168 84.8% 6.5% 16 The person giving the news a good communicator 169 62.5% 29.3% 15 The person giving the news understood what it would mean for you and your family 159 46.7% 39.7% 25 Your reaction to the news was acknowledged/taken into account by the person who told you? 168 61.4% 29.9% 16 Comprehension of the diagnosis The results in Table 5.14 below show that following the initial diagnosis disclosure two fifths of parents did not feel that they had understood what they had been told about their child’s disability. More than three quarters of parents felt that they had an opportunity to ask questions. Table 5.14 - Comprehension of the Diagnosis Comprehension of the diagnosis Did you feel you had understood what you n= Yes No Missing had been told about the diagnosis 179 56.5% 40.8% 5 Were you given an opportunity to ask questions 173 76.6% 17.4% 11 5.2.4 Provision of Information and Support The following section of the report examines the type, volume and quality of information provided to parents when their child’s diagnosis was disclosed, and the support options that were made available to the family at that time. Amount/level of information received Parents were asked to evaluate the level of information that they received at the first diagnosis disclosure. Although half of the parents felt that enough information was provided, almost two fifths of parents did not feel that they had received sufficient information when the diagnosis was first disclosed, and a small amount of families felt that they were provided with too much. The majority of parents (56%) were not asked if they would like to receive more information. Table 5.15 - Amount/level of information received Information received n= Percentage Enough information 91 49.5% Too much information 12 6.5% Too little information 73 39.7% Missing 8 4.3% Total 184 100% 95 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Quality of information When asked about the information that they had received, approximately half of the families recorded that it had been easily understood, with slightly less than half indicating that it had been up to date and easy to remember. In 24 cases respondents reported that they received no information. Table 5.16 - Quality of Information Quality of information Was the information you received… n= Yes No No Information Received Missing Easily understood 165 54.9% 21.7% 13.0% 19 Easy to remember 144 44.0% 21.2% 13.0% 40 Up to date 130 45.1% 12.5% 13.0% 54 Too technical 136 19.0% 39.7% 13.0% 52 Timing of written information Almost two thirds of respondents did not receive written information at the initial disclosure discussion. As reported in Table 5.17 below, slightly fewer than half indicated that they had received written information at a later time. Table 5.17 - Timing of Written Information Timing of written information received Were you given written information… n= Yes No Missing At the time of diagnosis 141 13.0% 63.6% 43 At a later date 146 46.2% 33.2% 38 Information from those who provided details of when they received written information is set out in Figure 5.7 below. Of those who indicated that they had received written information later than the time of diagnosis, some received it over a period of time or at various points following the diagnosis or during the process of an evolving diagnosis and some did not recall precisely when information had been provided. These answers are captured in the ‘Other’ column. There is a variance in the length of time represented by the bars in the chart since there was a concentration of information-giving activity up to the first 8 weeks, and following that the time-frame is considerable more spread out in the data. Frequency 40 30 20 10 0 34 0 - 2 weeks Figure 5.7 – Timeframe of written information provision 12 3 - 4 weeks 3 7 6 2 2 5 - 6 weeks 96 7 - 8 weeks 2 - 5 months 6 - 12 months more than 12 months 24 other

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