Guidelines and Tools for Informing Families of their Child’s Disability
Introduction
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Difficult news is never easy to give or receive. The way in which a family are informed that their child has a disability is an important and sensitive task. The manner in which the news communicated can influence the parent’s levels of distress, their attachment with the child and their relationships with professionals who are likely to be involved in supporting the child and family for years to come. It is vital that this relationship begins well to enhance trust and ensure that the family are comfortable to access the services necessary for the development of their child.
For professionals, informing families of a child’s disability can be an emotional and stressful task. It requires training, support and clear guidance on best practice.
The National Federation of Voluntary Bodies developed evidence-based National Best Practice Guidelines for Informing Families of their Child’s Disability to address this important issue and these were launched by Minister for Health and Children, Mary Harney TD in December 2007. The guidelines were based on a significant consultation and research process and were widely endorsed by professional bodies, parent and family organisations and educational institutions. In 2013 Minister for Health, Dr. James Reilly, TD approved funding to support the national roll-out of the Informing Families Best Practice Guidelines. Work is currently underway with the HSE in planning the national roll-out.
The national roll-out will be informed by the roadmap for implementation developed during a pilot project that took place in the Cork region. Following on from the launch of the Guidelines, the Informing Families Project embraced the challenge to translate research into practice through a two year pilot implementation of the guidelines in the Cork Region, across hospital, community and voluntary disability services. The pilot project took place in 2008 and 2009. The purpose of the pilot project was to gain knowledge to inform national roll-out. The implementation was successfully achieved and the pilot project was announced as one of the recipients of the Taoiseach’s Public Service Excellence Awards 2010.
Through the pilot project in the Cork region a range of valuable tools and materials have been developed which can be used around the country to support the implementation of best practice when informing and supporting families of children with physical, sensory and intellectual disabilities. Mr. John Moloney TD, Minister for Equality, Disability and Mental Health launched these valuable tools on Monday 28 June 2010 in University College Cork
- A website of information to support parents and professionals developed through the pilot project: www.informingfamilies.ie
- The Roadmap for Implementation – Informing Families of their Child’s Disability: Report of the Cork Implementation Project
- An e-Learning module based on evaluated training materials designed to support professionals who work with families of children with disabilities
- A poster highlighting key points of the best practice guidelines as a quick reference guide, entitled the ‘Safe Cross Code’
The pilot project which took place in the Cork region from January 2008 to December 2009 was guided by a Steering Committee of professionals from nursing, medical and allied health backgrounds and was chaired by Ms. Katherine O’Leary, a parent of two children with disabilities. During the Cork Pilot Implementation Project practical measures were undertaken to ensure that the child and family are placed at the centre of the services provided across hospital, community and disability service settings. The project was characterised by partnership and integration between services, disciplines and an enhanced parent-professional partnership.
- During the pilot project a training course was developed, delivered and evaluated; it demonstrated measurable improvement in the comfort, confidence and knowledge of participants with regards to their disclosure practice. This course has now been incorporated onto the medical training and nursing and midwifery training courses in University College Cork.
- There was previously no private room available in the Paediatric Unit in Cork University Hospital. Responding to the needs of families, the Social Work Department at the hospital gave one of their offices to be refurbished as a private room now called ‘Seomra 7’ with comfortable chairs, tea and coffee and a phone where parents can spend some time absorbing the news they have been given.
- A one-page summary poster of the best practice guidelines based on the ‘Safe Cross Code’ was designed and is available for download.
- Protocols for liaising across departments, disciplines and organisations were designed to enhance integration, teamwork and communication.
- A website of information for supply to parents was developed in conjunction with parents and professionals and is now available at www.informingfamilies.ie
Diarmuid O'Leary cuts the ribbon to officially open the new family room in Cork University Hospital
The launch of the report of the Informing Families Cork Implementation Project in UCC
“The huge benefit for me was sitting face to face with colleagues, teasing out ways of simplifying referral from acute to community early intervention services and at the end saying yes this is how it will happen and now finding that it actually works. The group found ways of simplifying processes and procedures by discussing and developing ideas. It struck me how much can be achieved when the various agencies and services meet and have open discussion and communication.”
Breda Long, Early Intervention Project Officer HSE, Principal Speech and Language Therapist
“Difficult news is never easy to give or receive. During the pilot scheme in Cork I have witnessed extraordinary collaboration by professionals across all disciplines. Empathy with families and confidence in this delivery of news is enhanced. The news may be difficult but when parents feel that there is genuine concern for them, their dignity remains intact and there is room for hope. These guidelines provide the roadmap to guide national roll out. My dream is that this blueprint will be adapted to encompass the delivery of all difficult medical news.”
Katherine O’Leary, Parent of two children with disabilities, Chair of Cork Implementation Project.
“The Cork project generated a special energy bringing people from different organisations and disciplines together to find real and tangible ways of implementing the National Guidelines… There was a real sense of working together to make a difference with improved communication between sectors allowing for improvements to happen all through the Pilot Project”
Hilary Lane, Principal Psychologist, Enable Ireland.
‘Seomra 7’ in Cork University Hospital was designed with a lot of care and attention to detail and with full awareness of the nature of its use. Informing families of difficult news concerning a child or much loved family member is never easy and the manner and environment in which this is done will leave a lasting memory. With ‘Seomra 7’ we hope to proffer families a helping hand, an ease of pace and above all respect. The Social Work Dept CUH is very proud to be closely associated with this wonderful initiative.”
Mary Casey, Manager/Social Work Services, Cork University Hospital.
“Anywhere that is dedicated to sensitive or life-changing discussion with parents is essential to modern paediatric care, so the provision of the new room in CUH for communication with families is a very welcome development. Every hospital should have a room like this.”
Professor Jonathan Hourihane, Professor of Paediatrics and Child Health, Cork University Hospital.
You can find all the materials and tools from the Informing Families Project on the new website www.informingfamilies.ie, including the national best practice guidelines, the e-learning module and the report of the Cork Pilot Project, which includes a Roadmap for Implementation and practical recommendations for making the best practice recommendations a reality on the ground.
The work of the Informing Families Project has been kindly supported by the National Federation of Voluntary Bodies, the Health Services National Partnership Forum and the HSE National Social Inclusion Unit.
For further information on the Informing Families Project, please contact Alison Harnett, Project Co-Ordinator, National Federation of Voluntary Bodies, Tel: 091-792316, Email: alison.harnett@fedvol.ie