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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 one additional focus group, parents of children who are currently older were invited to participate. The ages of the children whose parents participated in this group ranged from 11 to 33 years. These parents responded to an invitation to attend the focus group, which was issued to all members of a small parent-support group of which they were members. The rationale for including this group was that the evaluation of information from this group alongside the information from the parents of the younger children allows comparison between earlier practice and how the diagnosis has been communicated more recently. This gives an indication of some recommendations that were considered important by parents hearing the news up to thirty three years ago, and which parents hearing the news in the last six years still find important. Ethical Considerations and Informed Consent In working with each of the agencies, the ethical considerations of running the focus groups were given strong consideration, due to the sensitive nature of the material, and due to the event being quite recent for some parents. To this end each service provider was asked to choose a nominated contact person to co-facilitate the group together with the Project Co-ordinator. This contact person was available as a support to parents, should they feel in any way distressed after attending the group. In the case of the parents of the older children, the group was organised through a parent’s support group, and was co-facilitated by a Social Worker who was available to the parents subsequently for any support needs. For the six groups with recent diagnoses the lower age limit was placed at three years to minimise the number of participating parents for whom the disclosure event was particularly recent, and could therefore be more upsetting. It was also reiterated to parents in an introductory letter and verbally at the start of the groups that this can be an emotional topic to discuss, and that they should only provide information which they were comfortable sharing. The letter, distributed to each potential participant, indicated the purpose of the study, the voluntary nature of participation, intended use of the material and assured confidentiality. Signed consent was obtained from each focus group participant. Selection of Participants - Professionals In the case of professionals working in the area of disclosure of the news of disability to a family, the initial interviews indicated the involvement of a wide range of disciplines. It was clear therefore that there was a need to consult with a broad range of the key stakeholders. In order to achieve this, the fifteen groups listed in Table 4.2 were agreed through consultation with the Informing Families Steering Committee. For each of the disciplines listed a representative national organisation, professional body, trade union or agency was contacted to request participants. In the case of Ultrasonographers no such organisation currently exists at a national level, and these participants were therefore contacted by telephoning each of the maternity hospitals and units in the Republic of Ireland, to invite participants directly. Each of the professional focus groups was cofacilitated by two facilitators from the Health Services National Partnership Forum, with the Project Co-ordinator in attendance. All professional and parent focus groups were audio recorded with the consent of participants, and were subsequently transcribed for analysis. 49 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Table 4.2 - Disciplines involved in Professional Focus Groups Discipline Organising Partner Consultant Obstetricians/Gynaecologists Irish Hospital Consultants Organisation Trainee Obstetrician/Gynaecologists Institute of Obstetrics and Gynaecology, RCPI Consultant Paediatricians Irish Hospital Consultants Organisation Trainee Paediatricians Faculty of Paediatrics, RCPI Consultant Psychiatrists Irish Faculty of Child Psychiatry Neonatal Nurses Irish Nurses Organisation Midwives Irish Nurses Organisation Paediatric Nurses An Bord Altranais Ultrasonographers Organised directly through maternity units and hospitals GP’s Irish College of General Practitioners Public Health Nurses Organised through Directors of Public Health Nursing Social Workers The National Social Work Qualifications Board Speech and Language Therapists The Irish Association of Speech and Language Therapists Psychologists The Psychological Society of Ireland Early Intervention Irish College of General Practitioners Early Intervention Multidisciplinary Group Accessed through national organisations and early services teams. Included: Dieticians Home Teachers Occupational Therapists Physiotherapists Registered Nurses Intellectual Disability Total Number of Groups 15 Ethical Considerations and Informed Consent – Professional Focus Groups Informed consent for the professional focus groups was obtained through an information letter and consent form that was signed by each participant. The information letter set out the purpose of the focus group and the intended use of the material gathered, along with the voluntary nature of participation, and the confidentiality and anonymity policy agreed. Questions A semi-structured schedule was used to guide the discussion and maintain consistency across groups, but the structure also allowed for participants in groups to raise topics and issues. The following questions were put to parents: 1. What was your experience of being told that your child has a disability? 2. How would you recommend that families should be told about their child’s disability in the future? (Incorporating prompts where necessary of: “What did you find most helpful about the way in which you were told?” and “What did you find least helpful about the way in which you were told?”) The following questions were put to the professional disciplines: 1. What is your involvement in the process of informing a family of their child’s disability? 10 2. What is working well in current practice in how families are informed? 3. What is not working well in current practice in how families are informed? 4. How do you feel when you inform a family that their child has a disability? 10 This question emerged as a requirement after the first three groups had been run on a pilot basis, and there are therefore three groups for whom this question did not form part of the focus group. 50

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