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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 ● Parents and professionals indicated the clear need for continuity of care to be provided within service settings (e.g. where more than one medical or social care team are involved in providing the diagnosis) and across settings (e.g. when families are discharged from hospital settings into the community, or are awaiting referral to Early Services). A named liaison person is required to provide continuity of care and co-ordinate the team approach in these situations, to avoid the very distressing vacuum that many parents and professionals described following discharge before reaching Early Services, and the mixed messages that were often received when internal teams did not effectively communicate. ● The findings of the focus groups and national questionnaire survey of parents and professionals indicated that in Ireland there are professionals from many disciplines and experience levels, working in many different service settings, who first inform families that their child has a disability, or provide support during the process of this disclosure. The data gathered from the various consultation and research strands confirmed the involvement of professionals: • From hospital, community, and disability service settings • Working in medical, nursing and allied health professional fields • Whose levels of experience range from newly qualified to having over 35 years of experience • And whose frequency of involvement ranges from less than once per year to over 35 times per year. The broad range of disciplines involved, many of whom are in mainstream rather than disability-specific services, means that clear planning and ownership of tasks within the disclosure and support process; interdisciplinary training; and a structured approach to dissemination of best practice is necessary. ● Previous Irish research (Doyle, 2004) indicated an absence of consistent guidelines or local policies in place to guide professionals breaking the news to families that their child has a disability. The results of the focus groups of the Informing Families Project and the professional questionnaire support this finding and indicate that professionals working in disclosure of disability or supporting families who receive the diagnosis would welcome clear guidelines and training in best practice. ● Existing strategies in the UK for implementing best practice when informing families of their child’s disability were found through evaluation to have lacked effectiveness because one third of key staff members were unaware of the guidelines (Fallowfield & Jenkins, 2004), indicating the need for a comprehensive communications strategy to accompany the dissemination and implementation of best practice guidelines. Conclusions International experience, and the non-implementation of existing policy recommendations, indicates that if Best Practice Guidelines are published and circulated without the back-up of a clear implementation strategy, the recommendations will remain just that, and the needs identified clearly over the past 17 years will remain unaddressed. This report therefore recommends the implementation of the following evidence-based best practice guidelines, and the undertaking of a coordinated, adequately resourced approach to implementation which is integrated across hospital, community, and disability service settings. The National Best Practice Guidelines for Informing Families of their Child’s Disability fall into two sections; Guiding Principles and Best Practice Recommendations. The Guiding Principles apply regardless of the circumstances of disclosure. The Recommendations are non-prescriptive, and in addition to being informed by the above principles will require adaptation to the circumstances of disclosure, including: ● Hospital / community / disability service setting / family home ● Ante-natal diagnosis 2 / diagnosis at birth / evolving diagnosis ● Physical / sensory / intellectual / multiple disabilities and autistic spectrum disorders ● Unexpected event / predicted disclosure following assessment or tests These guidelines adopt a person-centred approach whereby the child and the family are at the centre of the measures undertaken at the time of disclosure and in the ongoing parent-professional relationship. 2 Joan Lalor et al (2007) have conducted Irish research into the specific elements of practice that relate to disclosing a concern or diagnosis during pregnancy. A further reading list in this regard can be found on page 164 of the Reference section. 9

Informing Families Consultation and Research Report INFORMING FAMILIES OF THEIR CHILD’S DISABILITY NATIONAL BEST PRACTICE GUIDELINES Guiding Principles Whilst every disclosure event is unique, the National Best Practice Guidelines for Informing Families of their Child’s Disability have identified that the following Guiding Principles should be applied in every case. 1. Family Centred Disclosure Disclosure must be family-centred and tailored to the emotional and informational needs of each individual family. The family should be provided with choice and options in the support that they receive during the disclosure process (e.g. family-friendly appointment times, private accommodation, contact with other families, counselling, etc.). 2. Respect for Child and Family At all times it is necessary to demonstrate respect for the child and family. This should include using the child’s name, acknowledging and supporting the family’s dignity, emotions and reactions, and respecting cultural and linguistic diversity. 3. Sensitive and Empathetic Communication Sensitive communication that is open, honest, empathetic and understanding is essential. Whilst unavoidable difficulties in implementing best practice in other areas may be understood by parents, blunt or insensitive communication invariably leads to significant and lasting dissatisfaction. 4. Appropriate, Accurate Information Meeting the family’s information needs is a key priority that influences subsequent levels of parental stress and satisfaction. It is essential to pace the information in accordance with the needs of the individual family; (including how recently they have received the diagnosis, any current medical needs, and potential levels of distress or shock) to provide sufficient information whilst avoiding information overload. 5. Positive, Realistic Messages and Hope Realistic, positive messages and hope should be given with the diagnosis - not merely the worst case scenario. The emphasis should be on the child first, and the disability second. Encouraging staff members to support parents who wish to celebrate their child may include disability awareness training and an exploration of various definitions of hope which parents find appropriate and helpful (e.g. reassurance that support and help are available). 6. Team Approach and Planning Informing a family of their child’s disability is a process rather than a once-off event. Preparation, planning, team work, close communication between staff members and liaison between agencies/service providers is essential to successful implementation of best practice. 7. Focused and Supported Implementation of Best Practice Support for implementation of the Guidelines is required at all levels, including management, to ensure that planning takes account of the need for appropriate physical environments; provides for information ownership; and facilitates agreed protocols for dealing with different disclosure scenarios. The Guidelines are non-prescriptive, and in addition to being informed by the above principles, will require adaptation to the circumstances of disclosure, including: ● Hospital / community / disability service setting / family home ● Ante-natal diagnosis / diagnosis at birth / evolving diagnosis ● Physical / sensory / intellectual / multiple disability and autistic spectrum disorders ● Unexpected event / predicted disclosure following assessment or tests 10

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