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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 “For doctors it’s just assumed ‘ok, next baby’ and it’s just assumed that you are going to be ok about it, and I don’t know why that is.” (Trainee Paediatrician) All agreed that informal debriefing with colleagues is one effective avenue to relieve stress, and many noted the need for further exploration of this area. Recommendations Recommendations made by both professional and parent groups: ● Training provision in the skills needed to inform families of their child’s disability should be increased and provided on a widespread basis. ● Training provided should include; ● communication skills training, ● counselling skills ● cultural awareness and diversity training ● input and feedback from parents ● debriefing ● reflective practice ● It was agreed that it is not appropriate for training to take place during the diagnosis consultation. The practical difficulties that this presents for training should be addressed, it was recommended, by role play training, and mentoring schemes where trainees receive a graduated introduction to the role on a team basis; beginning with involvement in the process through paper work and follow-up and moving on to the initial communication at a later stage when they have gained experience. Staff members who are not directly involved in providing care or support to the parents should not be brought into the diagnosis consultation. ● Parents should be informed and offered the choice of whether training takes place during the consultation. Recommendations made by parent groups in particular: ● Disability awareness training in mainstream services should be increased, as many families indicated that they felt professionals would be better able to communicate in an empathetic and positive manner if they had more disability awareness training in general, and more understanding of what the diagnosis of disability means to families in particular. ● Parents focus groups indicated that key components of the training provided should include communications skills training and in particular the use of sensitive and appropriate language. ● It is important that professionals learn listening skills and how to respond appropriately to the various reactions that the news may cause, including shock. ● Parents indicated that they had experienced staff members communicating inappropriate displays of excitement on the identification of an unusual or rare diagnosis. It was recommended instead that when communicating with the family, care should be taken to focus on what the diagnosis will mean for the child and family; and that this should be emphasised in training courses. ● Parents in several groups indicated the need for professionals to understand the importance of support groups and services to the family, so that professionals will be aware of the necessity to provide information on these services to families. ● Where relevant, professionals should be provided with training in specific methods of communication skills such as sign language. ● Families indicated the need for broader disability awareness programmes for the general public. Recommendations made by professional focus groups in particular: ● Professionals still currently receiving training indicated that the provision of communications skills training should take place at the appropriate time – the provision of this input should be concentrated when trainees begin working with service users, families and patients rather than during classroom-based education, to ensure its relevance and impact. ● Several participants in the professional focus groups raised the possibility that only those concerned with the issue of good communication would attend training, and that by default these may be the people who already have an awareness and concern for best practice in this area. It was suggested therefore that there should be a mandatory element to the training to ensure the guidelines reach those who have most need for improvement in their practice. Summary: It is recommended that training and guidelines should be provided to support staff in the implementation of best practice including interdisciplinary training with role play, undergraduate and continuing professional education training in communication skills, mentoring schemes, and diversity and cultural awareness training. 73 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report 4.2.7. Dissemination of the guidelines and best practice Professionals were asked to make suggestions for effective strategies to ensure successful implementation of the guidelines within their own particular discipline, as well as how implementation should be co-ordinated in general. The key finding to emerge from this element of the focus groups is that one process of dissemination will not suit all groups, and that varying information needs and communication styles of different disciplines will need to be catered for in the implementation plan. Suggestions for sustained and continuing implementation of agreed best practice included working through established communication networks in each of the professions; providing various information formats such as reports, checklists, laminated posters; along with ensuring that the guidelines form part of the induction process in each setting, and have clear ownership with members of staff responsible in each location. All of the above would not be sufficient for change to be effected, it was suggested, unless there was management endorsement for the implementation of the guidelines. Staff members indicated that without this support it would be very difficult for front line staff to encourage and adopt new practices. Training at undergraduate level and for those already in practice is a central element of dissemination; professionals indicated that running information and training days would be a more effective way of ensuring practice is implemented then merely circulating the Guidelines. Recommendations made by professional focus groups ● The Guidelines should be disseminated through training - aspects of which include communication skills, role playing, mentoring, debriefing, reflective practice etc, as mentioned above in section 6 of this chapter (Training, Education and Support for Professionals). Professionals in several groups recommended that the training should be mandatory, examinable, and should form part of Continuous Professional Development. ● It was suggested that the Guidelines should be provided to staff members working in general health care settings where disability may be diagnosed and not just specialists who work with disability on a daily basis. ● A network of staff members trained in the guidelines should be responsible for local dissemination and implementation of best practice. All key stakeholders should be involved in the planning for implementation within settings and across settings in each local area. ● An introduction to the guidelines should be included in induction programmes, to ensure sustainability through staff turnover. ● Checklists should be introduced, and along with this a nominated person should be appointed to ensure that all tasks have been completed by members of the multi-disciplinary team. The liaison person recommended in Section 5 (Organisational and Planning Requirements) of this chapter would ideally adopt this role. ● It was indicated that it is necessary for senior practitioners to ‘buy in’ to the implementation of the Guidelines before real changes will be seen on the ground. In addition it was recommended that the Guidelines should be ‘fed down’ via management to demonstrate organisational commitment to implementation. ● It is vital to provide an evidence base for any best practice to be implemented - without statistical evidence to support implementation; it will be very difficult to encourage change. Along with the evidence base it is important that the information disseminated includes direct quotations of parents’ experience. ● The Guidelines should be disseminated through existing communication networks of professional bodies, training faculties and trade unions, and through email groupings of specialist professions. Medical students recommended that the Guidelines should be disseminated through the Medical Council. ● Adding an information session on the Guidelines to the agenda of existing information and training days will help to ensure that the maximum amount of relevant people are in attendance. ● Networking within and across disciplines and partnership working should be encouraged through the dissemination of the Guidelines. ● It was recommended that best practice in informing families of their child’s disability should constitute part of hospital accreditation processes. ● Several disciplines within community and hospital settings recommended that the Guidelines should be produced on a laminated poster that could be displayed in the work setting, so that staff members have a quick reference guide and that having the information displayed in the environment will encourage familiarity. It was also mentioned that displaying the Guidelines would help support professionals who would like to point out shortcomings in practice to colleagues, since it would provide a clear indication of the expected standards of practice. 74

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