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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 Number of staff members present at disclosure The most common number of staff members present when the diagnosis was communicated, in the cases described in the professional questionnaire, was two (26.9%). In a smaller number of cases (15.5%) there was only one staff member present. Five respondents stated that there were more than four professionals present when the news was given. In 14.3% of disclosures the staff members present were not known to the family. The respondents were asked to reflect on whether the number of people present was comfortable and helpful to the family, and to the professional respondent themselves. The findings from the data recorded can be seen in Table 5.47 below. Table 5.47 - Effect of number of staff members present n= Yes No Missing Do you think the number of people present was… Comfortable for the family? 132 52.9% 2.5% 106 Helpful to the family? 89 31.9% 5.5% 149 Comfortable for you? 88 33.2% 3.8% 150 Helpful to you? 84 29.4% 5.9% 154 Family members/friends present at disclosure Professionals responding to the questionnaire indicated that in 17.6% of cases, the person receiving the news of their child’s disability was alone. This compares with 25.5% of parent respondents who indicated that there was no family member or friend present. The news was most often given to the mothers, with fathers present in just over half of cases, as can be seen in Table 5.48 below. Table 5.48 - Presence of family members/friends Family members/friends present at disclosure n= Percentage Child (Older/Teenager) 1 0.4% Family Friend 1 0.4% Father 129 54.2% Grandfather 1 0.4% Grandmother 2 0.8% Grandparents 2 0.8% Maternal Aunt 1 0.4% Mother 169 71.0% Mother’s Partner 1 0.4% Siblings 1 0.4% Uncle 2 0.8% Missing 64 26.9% 38.2% of professionals indicated that the child was present at the disclosure, with this question not being applicable for the 8.8% of diagnoses which were given before birth. 117 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Location in which the diagnosis was given Within the wider service setting category professional respondents were asked to specify the actual room or location where the news was given. In keeping with the results of the parent questionnaire, there was a wide spread of responses indicating where disclosure took place. Respondents specifically noted ‘Private Room’ as the location in 14.3% instances, the most common location. However, it is important to note that a number of the other specified locations might be considered private rooms as well. The next most common location was the ‘Therapy Room’ (11.3%), followed by the ‘Paediatric Ward’ (7.7%), ‘Staff Member’s Office’ (7.3%) and ‘Doctor’s Surgery or Clinic’ (6.9%). A&E / Neurosurgical unit Antenatal Clinic (before birth) Audiology Assessment Room Doctor’s surgery or clinic Family Home Labour Ward / Delivery room Maternity / postnatal ward Operating Theatre Other Paediatric Outpatients Department Paediatric Ward Parent room / kitchen Private room SCBU / NICU Staff member’s office Therapy room Figure 5.17 – Location for disclosure 0 10 20 30 40 Environment Table 5.49 below indicates that, in the opinion of the professional respondents, the environment was private the majority of the time, and was comfortable in half of cases. However just two fifths of professionals found the environment welcoming. A very small number of respondents indicated that interruptions had occurred during the time in which parents were told of their child’s disability. Table 5.49 - Environment for disclosure Environment n= Yes No Missing Private environment 165 67.2% 2.1% 73 Welcoming environment 120 40.8% 9.7% 118 Comfortable environment 137 50.8% 6.7% 101 Were there interruptions? 122 5.0% 46.2% 116 118 1 1 4 5 6 7 6 5 7 6 15 18 19 Frequency 17 28 34

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