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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 In the absence of training professionals spoke of how they had learned by ‘trial and error’, with, of course, the attendant difficulties experienced by families who experienced the ‘errors’. “And a problem is that if you are learning on the job you will make some mistakes before you get it right, as a learning skill, so the first people you told, it might not be as well managed as you do nowadays.” (Consultant Paediatrician) “I just felt with the junior team, the questions sometimes - they had a list of questions and wanted to get through it, they wanted to try out everything they had learned. For example, ‘Does anyone in your family have a big head; is anyone in your family a bit slow?’ When the consultant came around we were dealing with a whole different level of experience.” (Parent) “Our skills are developed through trail and error, instinct. One of our Social Workers did training on breaking news. We had an assessment for a child who was diagnosed with autism. The family broke down. The father left with the child. I felt as a Speech and Language Therapist I am not trained for this – I felt we had broken a marriage and ruined a life. Even the pointers the Social Worker gave us were very important.” (Speech and Language Therapist) All of the elements above point to a clear need for communications skills training for professionals, a recommendation which was supported across the board in the focus groups.The parents in particular strongly indicated that the training provided needs to be specifically related to the diagnosis of disability. This was further supported by the assertion of medical professionals that the communication skills required while working on a rotation such as oncology are very different from those required in diagnosing a disability. “I used to assume that once you were good at telling news in one discipline it would follow on and you could do it in every discipline but it’s actually quite different from one to the other. There are different skills for each discipline so it’s an ongoing process that you have to learn. That has to be taken into account in any form of training for breaking news.” (Trainee Paediatrician) Parents expressed the view that there is a lack of disability awareness on the part of professionals in mainstream settings, and that better knowledge of what the disability means to the family and of the reality of disability in the wider sense would lead to the communication of more sensitive and more positive messages at disclosure. It is important to acknowledge the emotional challenge and strain that can be felt by staff members who communicate the news or support families who have been told of their child’s disability. Without taking this impact into account it is likely that the implementation of best practice will be less effective, and that staff members will not receive adequate support. Staff members giving the news of a child’s disability widely described the process as being challenging and emotionally difficult, with many indicating their own feelings of sadness and distress. Some of the professionals responsible for providing the diagnosis mentioned that it can be the toughest aspect of their job, while those supporting the family directly after the diagnosis indicated their feelings of empathy and their wish to show humanity and caring to the parents. “[You feel] sad. You’re a mother yourself. You can be empathetic but you can’t understand. You can try, but I don’t have child with disability and you just can’t imagine know how they must be feeling. You just feel you can’t do anything for them. You do your best as a midwife and as a mother and as an individual. I feel that the only thing I can do is put my arms around her.” (Midwife) “It’s the toughest part of the job really. When you have experience you will prioritise this, because it’s a big priority, because it’s something that parents remember.” (Consultant Paediatrician) “I think the interviews I find can be very stressful because the parents are looking for hope – they are looking for some slight window of hope and they are trying to test you to see - to go over stuff with you, and it can be very difficult and you just have to try.” (Speech and Language Therapist) Particular sensitivity needs to be shown when professionals are themselves the parents of a child with a disability. Several participants in the focus groups who have children with disabilities spoke of feeling that extra responsibility for supporting families is placed on their shoulders, and others mentioned breaches of confidentiality when information regarding their children was made known within staff teams. 71 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report “I am a parent of a child with a disability and sometimes I am landed with it – sometimes I am asked to speak to parents as an expert but I am not…But I do find I’m not afraid to communicate with the family (sometimes) as a parent because I know what they will live with. Sometimes it’s easier to concentrate on the fact that it’s a child and not just a disability. Sometimes I mind and sometimes I don’t. My friends are going in and feeling so awkward, and I feel sorry for them, but they always drag me in as if I’m Mrs know-it-all, and I’m not, I am just speaking from experience.” (Professional focus groups 12 ) Staff members spoke of the impact that tiredness has on their ability to deal with the task of giving the news, and this was echoed by parents’ experiences. “It is more difficult when tired to put across the positive point of view.” (Trainee Obstetrician) “When ‘Tom’ was transferred to the unit- when he was in the Special Care Baby Unit, this junior doctor came in, one morning early, and he had scrubs on and he had the stethoscope wound around his neck and he said ‘I’ve been up all night’ and I said ‘Poor you’. So he put his back against the wall …and he slid down on his hunkers and he said ‘You have a long road ahead of you’ I didn’t need to hear that… You need people to be positive around you.” (Parent) For some staff members the pressures of potential litigation are a source of anxiety and stress, and can even have an impact on the diagnosis given. “….and a fear of litigation is coming very much into it, all our practices for diagnosis; the way we word it, the way you say it, you know – just in case it doesn’t work out the way you said it would at five years ago…at least that’s in the voice at the back of my mind.” (Consultant Psychiatrist) “The other side to that is the legal – If you get it wrong, and somebody has an autism treatment programme, and five years later it turns out the child is ok, they’ll sue you for that, for putting them through that, that we broke up the marriage, maybe somebody committed suicide, you just don’t know how people take it. . If you don’t do the diagnosis of a child that turns out to have autism then they will sue you for that. I think psychologists are between a rock and a hard place. Everybody is, but it is putting pressure on people.” (Psychologist) As well as training provision, professionals discussed other forms of support that should be provided to those communicating the news of a child’s disability. Significant time was spent by during the professional focus groups discussing the topic of debriefing. The debate about the provision of debriefing, and the format that it should take is a complex one, with some disciplines indicating that further support in this area would be beneficial, due to the often emotional and stressful nature of providing a family with the news that their child has a disability, and supporting them directly afterwards. Suggestions such as a weekly visit to the unit from an independent Psychologist, which participants had experienced in other countries, and the use of reflective practice and team debriefing sessions to ‘let off steam’ after difficult periods, were welcomed by many groups. Conversely, other disciplines indicated their reluctance to use debriefing measures; some noting that it would seem ‘soft’ and that they were not encouraged to show emotions, while others doubted the efficacy of debriefing structures. “Doctors aren’t taken to be the touchy feely profession so we tend to not debrief and we’re all very much like ‘keep a stiff upper lip and you just told somebody something horrible but you’re fine about it’. You don’t go and talk to someone else about it, maybe your colleagues, a bit… or when you go home you might get upset and tell your friends about it but at the same time you’re even thinking I shouldn’t be doing this either; they don’t understand or you don’t want to burden them with it.” (Trainee Paediatrician) “We have an extensive caseload and no supervision. I think if you are doing anything that involves counselling at any level then really you are obliged to have supervision. Even if you have a mentor to share what you have experienced and to know that you are doing the right thing. It’s seen as ‘you’re not up for the job’, if you go for support, so we need to change the culture. It’s seen that you can’t cope.” (Public Health Nurse) 12 Discipline withheld for reasons of confidentiality. 72

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