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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Recommendations made by

Recommendations made by professional focus groups in particular: Informing Families Consultation and Research Report ● Care should be taken to keep the father involved and supported at all times, as sometimes there is a tendency to concentrate exclusively on the needs of the mother. ● The number of staff members that the family have to interact with should be limited at this sensitive time. This can be facilitated by nominating one staff member as a key contact for the family. ● Staff mobile phones should be switched off during the disclosure discussion. ● In the hospital setting, due to frequent rotation of staff, at least one person should be present at the initial disclosure that will be available to meet with the family again to provide continuity of care and information. Summary: It is recommended that a senior staff member should provide the news in a private, comfortable place, with both parents present, and a supporting member of staff should be available to remain/spend time with the family; the diagnosis should not be rushed, and parents should be given the opportunity to see and hold their baby before the news is given. 4.2.2. Communication Themes: The importance of the manner in which a child’s disability is communicated was raised frequently during the parent focus groups in particular. Parents recalled very clearly the words that were used telling them the news, and the way in which they were spoken. “…and its not just a sentence, every word is important because you are hanging on to everything they say and you will remember every word that they say, it sticks in your mind. They need to really plan their sentences and their words because this is going to stay with you for the rest of your life.” (Parent) For those parents who expressed dissatisfaction with how they were told, it was very often in relation to communication that they felt was dismissive, blunt, disrespectful, or when the message was given in a very negative manner. “The Cardiologist came in after a week, with a smile from ear to ear, and said ‘Double whammy; Down Syndrome and hole in the heart, are you over it yet?’ smiling from ear to ear.” (Parent) “It was about twenty past one at night, we went up to the ward, and I was put in a room with five other people. And the nurse told [my husband] he had to go, and we were all to ‘Shhh shhh’ be quiet. I felt that was hard. He had to go home on his own, and I was in hospital on my own. I said [to the Paediatrician] ‘Is it mild? He said to me ‘No, there is no such thing, he is Down Syndrome and he will be for life’. I felt it was a bit harsh and his manner was abrupt.” (Parent) The varied experience that the parents in the following quotation describe took place with two different professionals and shows clearly how the parents distinguished between the adverse news they had received, and the manner in which it was given. “The Paediatrician came and we thought he was very good. He said ‘I can’t give you a definite…’ and he looked at [the baby’s] hand…and said ‘I’m nearly sure he has Downs Syndrome but I couldn’t say for definite. Its 75% but I will have to do some other tests’. The next morning my [Obstetric] Consultant breezed in, looked into the cot and said ‘More than likely age-related type’, and walked back out. And that was the first time that I felt guilt.” (Parent) Parents and professionals alike recommended that the news should be given honestly and sensitively with empathy and humanity, in a non-judgemental fashion. “The hospital and the nurses and the staff were absolutely wonderful… [The Paediatrician] sat down with us… he said one thing to me I will always remember. He said ‘You take care of yourself and I will take care of his health, and between us we will get through this.’” (Parent) 57 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Parents indicated that respect could be shown for their child by simple measures such as using the child’s name. Both parents and professionals stressed the need for hope to be delivered with the diagnosis. “I think we can put a positive slant on it. Now that the problem has been identified, specific things can be put in place to help the child to reach its full potential… now that it’s been identified as a problem we can look at the solutions.” (GP) “[The Paediatrician] came in an hour later and spent time with us and that was very useful…the best part of getting the diagnosis was that [she] spent an awful lot of time with us trying to tell us that it wasn’t the end of the world.” (Parent) “I think hope is an ingredient that isn’t quantifiable, but there’s that balance between giving a positive message but yet not minimising the seriousness of a condition….and not minimising the future but leaving that space that they can hope.” (Psychologist) Several families indicated that they felt that the birth of their child had not been celebrated as it should have been, and felt hurt that the disability became the sole focus at the time of diagnosis. “I think what disappointed me as well was that not one person congratulated us. I find that sad because she’s just a little girl.” (Parent) Some professionals indicated that they thought it would be better to give the worst case scenario, and this contrasted with parents’ views that realistic and positive messages are best. “I said look, if you had an ordinary child, they don’t give you a book saying, look, he’s going to rob a car and he’s going to get a girl pregnant or he’s going to fail his exams. So you have to live life as it goes by. They don’t tell you that with the ordinary child.” (Parent) “I would say to them, if they are fine today, well look you are in good form today but you are going to have bad days and be honest with them. And tell them, down the road you are going to meet various stumbles and you are going to have to get over that. And its not always going to be rosy in the garden, you are going to have very bad days.” (Midwife) “Give us the information we need to deal with over the next few weeks, few months, not all the awful things that could happen.” (Parent) The importance of listening as an integral part of the communication process was highlighted by parents and professionals alike. “If a parent says they are worried about a child’s development you really have to take it seriously.” (GP) “Be there to listen and support and maybe to make sure the child gets what can bring the child on and to get the early intervention – I would see that as being important.” (Public Health Nurse) “We were very lucky to have Dr. ‘P’ because he was like a best friend for the two, two and a half years. Every so often he would bring me in books on syndromes. And he was very good to listen to me, he always asked my opinion on everything...He was just fantastic.” (Parent) Parents indicated that there was a very particular need for sensitivity to be displayed when confirming a diagnosis, even if the parents have previously been made aware of the likely outcome. Several families discussed how any glimmer of hope is clung to until the final diagnosis is made, and therefore confirmation of a likely diagnosis needs to be handled with as much empathy and care as the initial communication of a concern. It should also be noted that the final confirmation may be provided by specialists who have only brief interaction with the parents or by professionals with whom the parents are familiar. “He held up the CAT scan and said ‘yep yep brain damage’ and went to walk away. I told him ‘I didn’t like your manner, you were our 10% hope that we were clinging to.’ He said ‘I’m sorry, I thought you knew’. It wasn’t nice the way he told us.” (Parent) 58

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