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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 There have been several instances where, for cultural reasons, a family member or non-professional translator has not passed on full or accurate information to other non English-speaking family members. “You need to be careful in terms of services because the information doesn’t always pass over …. The male interpreter wasn’t giving the information to the woman. What was a two minute sentence was turned into three words. I knew it couldn’t possibly have been relayed.” (Trainee Paediatrician) Professionals discussed the different understandings of disability present in various cultures and the challenges that exist for staff members to become aware of these meanings and to provide appropriate support. In discussing a family whose baby had been born with Down Syndrome: “They were more isolated than anybody, because of the culture and the fact that the Dad – I couldn’t say he was ashamed of this baby – but it was a sense of pride, that they had a baby with Down Syndrome. She was more isolated […] He didn’t want anybody to talk to her. I don’t know what you do there. The man is the leader of the family, and when it came to talking to the Paediatrician he didn’t even want the wife there, didn’t want her talking to him.” (Midwife) The challenge of providing culturally competent care when disclosing a child’s disability is one that was raised within the project at several different stages, and is an area requiring further research. Recommendations made by professionals 11 ● There should be widespread access to written materials for supply to parents in languages other than English. It was noted that the information being explained to parents can be quite complex and is further complicated when there is a language barrier to be overcome. ● There should be equitable access to appropriate professional interpretation services, with interpreters available in person to attend the diagnosis consultation. It was suggested by some professionals that the interpreter should be made aware of what will be discussed prior to the consultation so that they are prepared when the news is given. ● Some disciplines indicated that it is not good practice to use family members as interpreters and that this practice should not take place, (as also indicated by international best practice guidelines (RFTS, 2003)). However some individuals indicated that this practice does take place in some locations. ● Professionals indicated that there is a need to build up capacity to deal with cultural, ethical and language issues. ● Some disciplines have highlighted a difficulty in verifying that families with limited English proficiency have understood information presented to them. A tendency of people to nod and say ‘Yes’, even when something has not been understood, has been identified. It was recommended that in this case the family should be invited back for a second consultation with interpreters present. It was acknowledged that this may seem offensive to families who have indicated that they feel that their English is adequate, but that without it, the needs of the child can be put at risk. ● Religious preferences of all families, regardless of nationality or culture, should be sought and respected when communicating with families. Some families felt that their religious preferences were not respected when religious comments were made or pastoral care services were provided when the family felt that this was inappropriate. ● Training should be provided to improve cultural awareness, and to take account of existing diversity. This training should include identifying the specific needs of groups such as the Traveller Community. Another aspect of cultural awareness noted was the need to have an understanding of how different cultures interpret disability, and that different cultures have different communication styles, all of which needs to be taken into account when communicating with families. Summary: It is recommended that there should be widespread provision of appropriate interpretation and translation services; the availability of materials in the required languages, which are culturally appropriate; and diversity and disability awareness training which takes account of a new cultural era of diversity in Ireland. 11 Parents with limited English proficiency did not participate in the focus groups, as from a language point of view this would not be an appropriate forum in which to explore their experiences. Further research in this area is recommended. 65 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report 4.2.5. Organisational and planning requirements Themes: Returning to the concept of the initial disclosure of the disability being a process which is undertaken by myriad of professionals, and which can take place in a great number of different circumstances, it is clear that effective practice in this area requires detailed organisation and planning. From the information provided in the focus groups with parents and professionals, it became clear that this planning needs to take place at two levels; at the system or organisation level; and at the team level. System/Organisation Planning The links between the individuals first telling the news and those supporting the family and clarifying the information immediately afterwards, can be within settings or across settings, from acute services to community and disability services. Professionals and parents were unanimous in their assertion that the links between settings are not sufficient and that there is currently a lack of a joined-up systems approach. A GP describes her involvement after parents had been told of their child’s possible diagnosis of Asperger’s Syndrome: “Their second child - their eldest son had possibly Asperger’s Syndrome, he was told on a Friday evening, he arrived in to me at about 4 o’clock absolutely distraught, he’d been told by the Psychologist in the hospital and he was distraught. ..I thought it was so inappropriate, and it took at least 2 hours to calm down that man, and I thought ‘God, if that was my child on a Friday evening, could they not have left it ‘til Monday until there was someone there to support him?’. They could have said, well we’re thinking over the report, I need to talk to someone else about it, come back on Monday and we’ll discuss or whatever. And I had no knowledge of this, I was not aware that this assessment was taking place at that time. I knew something was taking place I had no time or venue or anything, so I was literally outside the whole circle but the minute the news goes down, I’m the first point of contact.” (GP) “Families have to go knocking on doors and sometimes its just luck that they find the right door.” (Social Worker) “One of the things that we were frustrated with was the lack of communication between all these services. As I went to whoever in each one for an appointment I was the one having to explain what ‘Emma’ has. And then I go to the health nurse for the regular check-up and she says ‘She’s not doing things that other children do’ and I say ‘excuse me but she is profoundly deaf’. And they don’t know what to do, they don’t know what kind of developmental things to do. I had to go and photocopy the results – every test that was done I asked for the results and then gave them to the Visiting Teacher. Except for one hospital who gave all the test results to the Visiting Teacher, the Speech and Language Therapist, and anyone who needed them.” (Parent) Parents described the lack of continuity between services having an impact on them in many different ways. In terms of the actual delivery of the diagnosis, it was noted that poor communication between local or regional services and specialist centres to which families were referred for tests and/or a second opinion, meant that the diagnosis was sometimes given insensitively and without preparation, due to professionals assuming that the family had already been given information in another service and therefore communicating without adequate care information which was in fact new to the family. Some parents described a lack of liaison between regional maternity units and specialist paediatric services leading to poor information provision to mothers who were still in-patients in the maternity hospital, while their child had been referred to a specialist centre. “The communication between the [Regional Hospital] and [Paediatric Hospital] was just unreal. I had to ring, myself, every day. To get information was chaotic. If you would ring they would say ‘oh the doctor is not here, they’ll be around for their visits in the morning’. This went on. It was like it was a file you had sent up - it wasn’t like a person. And when you did get through you felt like you were bothering them. I was on to different doctors every day… I had had a ‘Section and had to get out of bed to make all of these phone calls.” (Parent) 66

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