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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

● Suggested formats

● Suggested formats for the production of the Guidelines included: - Flowchart - Poster - Leaflet - Booklet - Laminated sheet - 10-page report - Full evidence-based report - Induction pack - A binder which allows updates to be easily incorporated - Website - National TV and Media coverage Informing Families Consultation and Research Report Summary: It is recommended that a multi-faceted, interdisciplinary approach to the implementation of best practice in informing families of their child’s disability should be adopted. Implementation should take account of existing communication gaps and the differing information needs and communication styles of the various disciplines involved. The guidelines should be disseminated through training and mentoring; induction programmes; existing communication networks and through the use of tools such as checklists and laminated posters in the practice setting. Effective dissemination will require management support and buy-in from all key stakeholders. The focus group with parents of children who are now older (between the ages of 11 and 33 at the time of participation) revealed that the fundamental concerns of parents at the time of disclosure; in particular for appropriate information and sensitive, empathetic communication; have remained unchanged over the past thirty years and were as pertinent three decades ago as they are today. The parents who participated in this group still vividly remembered being given their child's diagnosis, including the location, the people present and the manner of the disclosure. Some aspects of practice have changed significantly since that time; in particular there is a greater inclusion of fathers in the maternity setting; parents in this group who had received their child’s diagnosis in the maternity hospital recalled that the father was not permitted to attend the birth, and was allowed to visit only briefly. Although fathers are now welcomed at the birth, parents today still express the often unmet need for partners to be allowed to stay overnight when adverse news has been given. The need for positive messages was also a theme common in discussing recent disclosures and those which took place some time ago. Service provision for children has developed in the past three decades, a point which the parents of older children noted as a positive message for parents receiving their diagnosis today; and they also indicated the importance of linking parents with other families of children with similar disabilities. 75 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report 4.3 Summary The focus group consultation process revealed a complex range of circumstances and a wide variety of personnel involved in communicating to families in Ireland the news of their child’s disability. Diagnosis can be made at the ante-natal stage, at birth, or in an evolving situation that can take weeks, months or even several years; leading to a myriad of disciplines providing information and support across hospital, disability and community services. Staff members and families alike indicated that while there is some good practice in place it is not consistent across individual practitioners or across settings. This is causing many parents to experience a less than satisfactory service, while the lack of resources and support for staff often leaves them without adequate physical environments, training and guidance in this sensitive task. Parents have spoken of aspects of current practice causing additional distress at what can already be a very difficult time, and professionals have clearly indicated that the process is an emotional and challenging one and that they have a requirement for support in this area. The issues which both parent and professional groups most consistently identified as requiring the most urgent need for improvements were: ● Issues with the style and method of communication ● A lack of continuity of care ● Inconsistent provision of comprehensive, accurate and up to date information ● Inappropriate physical environments in which the news is delivered leading to a lack of privacy for parents, and to staff members having to do their best to communicate sensitively in clinical settings not designed or adapted for private or sensitive communication ● Insufficient training, support and guidance for professionals The results detailed above provide clear recommendations for best practice in an Irish context, developed by parents living in Ireland and professionals working in an Irish context. The key points of recommended practice are summarised below. ● Physical and Social Setting; a senior staff member should provide the news in a private, comfortable place, with both parents present, and a supporting member of staff should remain/spend time with the family; the diagnosis should not be rushed, and in the maternity setting it is important to ensure that parents must have seen and if possible held their baby before the news is given. ● Communication; respect and empathy should be shown to the family; honest and straightforward communication and simple language should be used; all medical terminology should be explained; the child should be referred by name and not diagnosis; positive messages and hope should be given with the news. Positive messages can include focusing on the individual baby or child and not solely on the disability; and indicating the support and assistance that will be provided to the family. ● Information Provision and Support: the family should be kept up to date at all times; there should be co-ordinated availability of accurate, up to date information for parents and professionals; with written material provided on benefits and entitlements, support groups, and early intervention services; parent’s individual needs regarding how much information should be presented and at what pace, should be taken into account when communicating. ● Culture and Language: 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. ● Organisation and Planning Requirements: an interdisciplinary team approach is necessary; continuity of care is vital within and between settings, and very particularly in the initial period after discharge from hospital services; a liaison/link person should provide this continuity and co-ordinate the interdisciplinary team response as well as offering direct support to the family; a follow up appointment should be scheduled within 24-48 hours of the initial disclosure to clarify the information provided and answer questions. ● Training, Education and Support for Professionals: 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. ● Dissemination: management buy-in will be required for implementation of the guidelines; various formats of information should be provided including leaflets, booklets, checklists and laminated sheets containing the guidelines; displayed in community and hospital service settings; training should be provided as detailed above; the Guidelines should be included in accreditation schemes; and there should be direct communication of Guidelines from professional bodies, trade unions and academic faculties. 76

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