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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Table 5.10 - Service

Table 5.10 - Service setting for disclosure Service Setting n= Percentage Child Guidance/Development Clinic 3 1.2% Clinic 1 0.4% Cochlear Implant Department 1 0.4% Community Care Services 3 1.2% Disability Service Provider 1 0.4% Disability Support Group 1 0.4% Early Services 23 9.0% Eye Clinic 1 0.4% Family Home 2 0.8% General Hospital (& Local General Hospital) 5 2.0% General Hospital (Maternity Ward) 2 0.8% Health Board 3 1.2% Hospital 11 4.3% Intellectual Disability Service Provider 5 2.0% Local Clinic 3 1.2% Local Health Centre 1 0.4% Maternity Hospital 99 38.7% Outpatients Department/Clinic 2 0.8% Paediatric Hospital 47 18.4% Paediatric Ward General Hospital 1 0.4% Physical Disability Service Provider 9 3.5% Private Practice 5 2.0% Psychological Assessment by post 1 0.4% Regional Hospital 9 3.5% Specialist Deaf Unit 1 0.4% Other 16 6.3% Total 256 Location in which the diagnosis was given Within the more general settings listed above, parents were asked to indicate the actual room, corridor, ward or other location in which the news had been communicated. A wide range of locations in which disclosure first took place was reported. As some families received the news in stages, there were respondents who listed more than one location in which the news was given. All answers in this section were collated together to provide an overall picture of the places in which the diagnosis is provided. Antenatal Clinic (before birth) Corridor Doctor’s surgery or clinic Family Home Labour Ward / Delivery room Maternity / postnatal ward Nursery / Breastfeeding Room Operating Theatre Other Paediatric Outpatients Department Paediatric Ward Private room SCBU / NICU Staff member’s office Theatre recovery room Therapy room Figure 5.6 - Location for disclosure 4 2 3 2 2 1 5 8 8 8 93 Informing Families Consultation and Research Report 13 17 0 10 20 30 40 50 22 24 Frequency 30 44 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Environment As is reported in Table 5.11 below, the majority of respondents were given the diagnosis in a private environment and were not interrupted. However only one third of parents found the environment welcoming and only two fifths found it comfortable. Table 5.11 - Environment for disclosure Environment n= Yes No Missing Private environment 168 71.2% 20.1% 16 Welcoming environment 124 33.7% 33.7% 60 Comfortable environment 135 41.8% 31.5% 49 Free from interruption 177 84.8% 11.4% 7 5.2.3 Communication The following section explores aspects of the communication process in relation to how the diagnosis of the child’s disability was first disclosed to parents. Initiation of discussion The process of disclosure of a child’s disability may begin with the first communication of a concern or it may be possible to immediately provide a clear diagnosis. The data recorded in the focus groups undertaken with parents and professionals indicated that the first concern regarding a child’s development or the presence of a suspected disability may be raised by parents or by professionals, or may come about as the result of routine screening. This concept was examined through the questionnaire survey, which found that in one fifth of cases the discussion in which the diagnosis was given was initiated by parents, and for almost a third it was staff members who introduced to parents the possibility that their child may have a disability. Table 5.12 - Initiation of disclosure discussion Initiation of discussion n= Percentage Initiated by parent 38 20.7% Initiated by staff member 52 28.3% Both the staff and parent had concerns 28 15.2% The concern was identified through routine screening 29 15.8% Don’t know 16 8.7% Missing 21 11.4% Communication of the diagnosis Table 5.13 describes parents’ assessment of the communication skills or styles used in disclosing the news of their child’s disability. Over three quarters of parents felt that their child was referred to respectfully, and three fifths felt that they had been treated with empathy. Almost half of the respondents did not feel that they had been given the news with hope and positive messages, a number slightly exceeding those who felt that these elements were present. A large majority of parents felt that the person giving the news was direct. Approximately two thirds of respondents reported that the person giving the news was a good communicator, and had a good understanding of disability, but significantly fewer felt that the person giving the news understood what the diagnosis would mean for the family. 94

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