“Words you never forget” Best-practice guidelines to support professionals when informing families of their child’s disability

Alison Harnett, Informing Families Project Co-ordinator. (National Federation of Voluntary Bodies Providing Services to People with Intellectual Disability) Photos: Tommy Clancy Previous page: Alex and Max Crowe at the launch of the Informing Families Guidelines, 3 December 2007 Left: Katherine O’Leary (Parent, Chair of the Informing Families Project Cork), Mary Harney, TD, Minister for Health and Children), Miriam O’Callaghan (RTÉ) and Alison Harnett (Informing Families Project Coordinator) at the Informing Families launch, December 2007.

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The National Federation of Voluntary Bodies Providing Services to People with Intellectual Disability (National Federation) is an umbrella group of organisations which provide services and supports to people with intellectual disabilities in Ireland. The member organisations of the National Federation have a long history of advocacy for people with intellectual disabilities and their families. In keeping with this tradition of advocacy, the National Federation has worked over the past number of years with families and professionals to develop a set of best-practice guidelines to support professionals when they first inform a family that their child has a disability. The guidelines came about in response to feedback from families to National Federation member organisations over many years, indicating that some had not been given the news of their child’s disability in an appropriate way, and that this had caused distress for families at a very sensitive time. Similarly, professionals had indicated that they found the experience of communicating this news to the family challenging, and that they would welcome guidance and support in how best to undertake the communication.

Development of the Guidelines

In 2004, at the beginning of the project to develop the guidelines, the National Federation employed a Project Coordinator, and set up a Steering Committee in order to fully consult with parents and professionals. The Steering Committee was made up of representatives from parent organisations, professional bodies (medical, nursing and allied health professions), trade unions, and statutory bodies including the Department of Health and Children and the HSE. The Committee was chaired by Dr John Hillery (President of the Medical Council of Ireland 2004-2007, and Consultant Psychiatrist with Stewart’s Hospital and St John of God Hospitaller Services). The project was supported by the Health Services National Partnership Forum.

The Steering Committee guided the work of the project to ensure that the guidelines would be based on strong evidence, so that professionals could have confidence adopting them in practice. The following stages were carried out to gather the evidence for the guidelines:

Stage 1:

  • A review of relevant national and international literature and Irish policies relating to how families are told of their child’s disability
  • Exploratory interviews with families and professionals

Stage 2:

  • 7 focus groups with parents of children with disabilities (physical, sensory, intellectual, multiple disabilities and autistic spectrum disorders) from around Ireland
  • 15 focus groups with various professional disciplines who are involved in informing families of their child’s disability or supporting families when they are given this news

Stage 3:

  • A national questionnaire survey disseminated to 584 families of children with disabilities between the ages of 3 and 6
  • A national questionnaire survey disseminated to 1588 professionals from medical, nursing and allied health disciplines

The information gathered in all three stages was analysed and combined to provide the best practice guidelines for informing families of their child’s disability. The guidelines produced relate to physical, sensory, intellectual and multiple disabilities, and autistic spectrum disorders. They are designed to be used in hospital, community and disability services, whether the diagnosis comes during pregnancy, at birth or in an evolving diagnosis that could take weeks, months or even years.

The Guidelines were launched by Minister for Health and Children Mary Harney, TD, in December 2007, and they have received broad welcome and endorsement from parent groups, professional bodies, trade-unions, the Department of Health and Children, and the HSE.

Results of the Research

Through the research undertaken a picture emerged of current practice in Ireland in how families are informed of their child’s disability. It became clear that there is a very wide range of professionals involved in communicating the news to families or supporting families who have just been given the news. The highest number of families in this study had been given the news by a consultant paediatrician or a psychologist, but there were many other disciplines listed including midwives, obstetricians, trainee doctors, paediatric or neonatal nurses, neurologists, speech and language therapists, audiologists and others—29 different disciplines in all. The diagnoses also came in a wide variety of locations and service settings, including the labour ward, consultant or therapist’s rooms, corridors, clinics and out-patient departments.

Families in Ireland reported varied levels of satisfaction with how they were given the news of their child’s disability; representing a wide range of experiences, as the chart below shows. The levels of satisfaction reported by Irish parents are similar to those reported in studies from other countries, and these results indicate that there is a basis for good practice already in existence, with some families receiving the news in a helpful way. It also shows that there is a need to provide support to professionals to ensure that this good practice happens consistently, and to reduce the numbers of parents who are dissatisfied with the process. Professionals, too, expressed their wish for further support and education, with 93% of professional respondents indicating that they felt communication skills training would be relevant and 80% supporting the need for specific training in informing families of their child’s disability.

Figure 1: How satisfied were you with how you were informed about your child’s disability?

The research identified some key areas where improvements in practice were required: information provision; continuity of care; the need for realistic, positive and hopeful messages; and the need for sensitive and empathetic communication to be used consistently. In terms of information provision, 63.6% of parents indicated that they had received no written information at the time of their child’s diagnosis, while 40-8% said that they did not feel they had understood what they had been told. This indicates the need for professionals to have access to up-to.date, accurate, appropriate and multilingual information to provide to parents at the time of diagnosis.

Deficits in continuity of care and liaison meant that some families received very confusing information, or were given sensitive news inadvertently when there was a lack of appropriate communication. This indicates the need for communication and liaison to take place within and between teams and organisations to ensure that the family receive continuity of care.

The research also strongly indicated the need for appropriate, private physical environments in which to provide the diagnosis, as many parents had been given their child’s diagnosis without privacy and not in an appropriate place in which they could absorb the news.

One of the key findings of the study was the need for the news of a child’s diagnosis to be communicated with realistic, hopeful and positive messages. Whilst 84.8% of parents found that the professional giving the news was direct, only 46.7% felt that they had been given the news with hope and positive messages. Parents suggested that they would prefer to be given the range of possible outcomes rather than merely the ‘worst case scenario’, and that messages of hope could include letting the family know that they will not be alone, but will be supported through the times ahead. The research also found that it is vitally important to show respect for the child and family, including using the child’s name rather than referring to them by the name of their diagnosis, and seeing the individual child rather than focusing on the disability alone. Unfortunately some families were given the news insensitively or in an abrupt way. All of the above findings point to the importance of training in communication skills and in the specific skills required when informing families of their child’s disability.

Best practice guidelines

Taking on board the results of the research, the guidelines provide practical recommendations to professionals in the following key areas:

  • Physical and social setting for the disclosure
  • Communication
  • Information and support
  • Culture and language
  • Organisation and planning requirements
  • Training, education and support for professionals
  • Dissemination

The specific recommendations are informed by an overarching set of guiding principles, which include: child- and family-centred disclosure; demonstrating respect for the child and family; sensitive and empathetic communication; appropriate and accurate information; team approach and planning; and positive, realistic messages with hope.

Implementation of the guidelines

From the outset an important aspect of the Informing Families Project has been to ensure that there is a coherent and comprehensive implementation strategy, so that the guidelines would not merely become ‘another report on the shelf’. Following the launch of the guidelines in December 2007, the Health Services National Partnership Forum generously provided financial support for the project to move into the second phase, i.e. dissemination and implementation. This implementation is in two strands—at the national level (in which the guidelines are being disseminated to all of the relevant professional bodies and trade unions and through training initiatives at undergraduate and postgraduate level) and through a pilot implementation project in the Cork region.

The Cork Implementation Project is taking an integrated approach to adopting the guidelines across hospital, community and disability-service settings, and brings together a Steering Group made up of a range of professionals from each of the disciplines identified through the research. The Cork project is chaired by Ms Katherine O’Leary, a parent of two children with disabilities; one with a physical disability and one with an intellectual disability. The aim of the project is to implement the guidelines locally in the Cork region and to provide a template for further national roll-out.

A number of key supports are being developed through the Cork Implementation Project, including an online information resource which will provide English and translated information to professionals for supply to parents, training materials, and protocols and checklists for practice and liaison at the time of a child’s diagnosis. Planning is in place to roll out these developments over the coming year, and to evaluate the pilot project to inform further implementation.

The National Federation and those working with the Informing Families Project would like to express their sincere thanks to all who contributed to the development of the guidelines, and most especially to the parents who shared their very personal experiences, which have been of enormous benefit in understanding the needs of families at the time of a child’s diagnosis.

The National Best Practice Guidelines for Informing Families of their Child’s Disability, and a consultation and research report which describes their development can be downloaded from www.fedvol.ie . A DVD training aid entitled Words You Never Forget is also available. This film portrays the experiences of two families who received their child’s diagnosis—one in a positive manner and another in an unhelpful way. The film also provides input from the perspectives of professionals involved in informing families of the news. The DVD and printed copies of the Guidelines and Consultation and Research Report can be ordered by contacting the Informing Families Project Coordinator (alison.harnett@fedvol.ie).