Words You Never Forget:

Informing and supporting families when a child is diagnosed with a disability

Overview- Informing Families Training

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Part 1

Group Discussion – Challenges experienced in informing & supporting families 

Part 2

‘Words You Never Forget’ film – positive and negative experiences 

Part 3

Presentation of Best Practice Guidelines for informing and supporting families when a child is diagnosed with a disability 

Part 4

Group Discussion - Implementation ‘Where to from here?’ 

Part 5

Parent Input –

where available

Part 1 - Group Discussion In small groups or as a full group discussion (10-15 minutes): What are the challenges involved:

  when communicating the news of a child’s disability to a family? in supporting a family who have been given their child’s diagnosis?

Part 2 DVD Film

Words You Never Forget

 The stories you are about to see were chosen for inclusion in the DVD because they directly represented the findings of the national research which took place to develop the best practice guidelines. Further details on the research will be presented after the film.  It was only possible to tell two particular stories in detail, but the principles apply across the range of ante-natal diagnosis, diagnosis at birth and evolving diagnosis  The principles are also applicable regardless of the discipline(s) involved and whether the communication takes place in a community, hospital or disability service setting.

Part 3 Presentation of Research Findings and Recommendations:

Best Practice Guidelines for i nforming and supporting families when a child is diagnosed with a disability

Informing Families of their Child’s Disability Importance of Disclosure Process For families:    has an impact on levels of distress and anxiety has a bearing on the attachment process can influence parent-professional relationship thereafter. (Cunningham, C 1994) For professionals:    is an emotional and challenging experience, requiring training and support and clear policies to guide practice on the front line (Harnett, A 2007)

Development of the Guidelines

     National Federation of Voluntary Bodies with support from the Health Services National Partnership Forum Evidence-based best practice guidelines launched in December 2007 Endorsement from parents, professionals, HSE, Dept of Health and Children, and international experts, e.g. Harvard Medical School In 2008-2009 the Guidelines were implemented on a pilot basis in the Cork region in:   Acute settings Community settings   Disability service settings Training and Education The evaluation of this project showed that implementation is both viable and also valuable for both staff and families. (The pilot project received the Taoiseach’s Public Service Excellence Award in 2010).

Consultation & Research Programme 1. Literature Review 2. Focus Groups

  7 with parents 15 with professional disciplines 3. National Questionnaire Survey   584 parents (31.5% response rate) 1588 professionals in 27 disciplines (response rate varies per discipline) 4. Consultation & Research Report, Guidelines and DVD

Project Scope

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Physical, Sensory, Intellectual Disability and Autistic Spectrum Disorders

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Ante-natal, at birth, evolving diagnosis

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Hospital, Community, Disability Services

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Professionals in 27 disciplines

Research Findings

Parental Satisfaction with Disclosure

Professional Satisfaction with Disclosure

Satisfaction with disclosure

 Gap between levels of ‘Satisfied’ + ‘Very Satisfied’ reported by parents (36.4%) vs. professionals (62.2%)  Levels of parental satisfaction with disclosure reported in line with those found in the international literature.

 Basis for good practice already in place in Ireland  There are, however, also parents who expressed significant levels of dissatisfaction  And professionals who expressed an urgent need for further support and training to assist in the application of best practice.

Wide range of disciplines involved

 Disclosure is a process rather than a one-off event  It can involve staff members from acute, community, disability service settings  Who have varying levels of experience  From nursing, medical and allied health professional disciplines

(N=184)

Content of the Best Practice Guidelines

Guiding Principles

       Child and Family Centred Demonstrate Respect for Child and Family Sensitive and Empathetic Communication Appropriate, Accurate Information Positive, Realistic Messages, with Hope Team Approach and Planning Focused and Supported Implementation of Best Practice

Full Guidelines can be downloaded from www.informingfamilies.ie

Recommendations - Areas

1. Physical and Social Setting 2. Communication 3. Information and Support 4. Culture and Language 5. Organisation and Planning Requirements 6. Training, Education and Support for Professionals 7. Dissemination

Full Guidelines can be downloaded from www.informingfamilies.ie

1. Physical and Social Setting

 Need for appropriate, private physical environments in which to provide the diagnosis  Both parents to be present (or family member/friend where there is only one parent involved). You may have to explain to the parent present that you would prefer to wait until their partner arrives as there is important news to be imparted; even if this raises concerns.  Child to be present if the diagnosis comes near to the time of birth  Older child should NOT to be present – allow parents to come to terms with the news  Sensitively ensure that the parents are reassured that the baby is alive if not present, before delivering difficult news.

2. Sensitive and Empathetic Communication

“Our experience, based on our engagement with plaintiffs' solicitors, is that a large percentage of cases are taken precisely because the medical staff have not engaged or improperly communicated with parents of children. To clarify this, these plaintiffs stated that but for badly handled or inappropriate or insensitive disclosure, they would not have elected to sue.”

Ciaran Breen, Director State Claims Agency

2. Sensitive and Empathetic Communication  Need for the diagnosis to be delivered with realistic, positive and hopeful messages.

  While 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 prefer to be given a range of the possible outcomes rather than merely ‘worst case scenario’  Simple, non-technical language. Explain medical terminology  Demonstrate respect by using the child’s name – never refer to the child by their diagnosis  Empathy and sensitivity, never judgemental, blunt or rude  Listen to parents, remember that every child is an individual, every family has individual needs  Congratulate new parents on the birth of their baby

“I said look, if you had an ordinary child, they don’t give you a book saying, look, he’s going to rob a car and he’s going to get a girl pregnant or he’s going to fail his exams. So you have to live life as it goes by. They don’t tell you that with the ordinary child.”

Parent of a child with a disability (Harnett et al 2007)

3. Information and Support

       Deficits exist in the information currently provided to parents   63.6% of parents received no written information at the time of diagnosis.

40.8% of parents did not feel they had understood what they were told about the diagnosis Pacing of information to individual parent is very important. Listen to parents to see if they are information-hungry, or if they are feeling overwhelmed by information overload Always schedule a follow-up appointment to take place within 2 weeks Parents are kept up to date with honest information: explain suspected diagnoses being investigated and acknowledge uncertainty Information about the child’s condition, early services and support groups is very important. Seek information about local services available Advise parents that information found on the Internet needs to be approached with caution, and not all information will be applicable to their child. Suggest appropriate sites. Ensure the information you provide is up to date and accurate

4. Culture and Language

 Various cultures have different interpretations of the meaning of disability. In some cultures it can be interpreted as a ‘curse’ a ‘punishment’ or a special blessing. Ascertain the parent’s understanding of disability and sensitively inform parents about the cause of the disability to address any unhelpful understandings. Reassure them that the disability is not anyone’s fault.  Where English is not the first language of the parents, offer to provide interpretation services. Brief the interpreter before informing the family  Even when one of the parents speaks English and the other does not, it is appropriate to offer interpretation services  Use professional interpreters - Do not use family members to interpret, especially not children.  Provide key pieces of written information in translated versions

5. Organisation: Team Approach & Planning

     Deficits in continuity of care – a named liaison person required   Communication within teams to ensure consistent messages for parents Communication between teams or organisations Providing the diagnosis is a priority task, which calls for planning and adequate time to be allocated. Consult with colleagues who are also in contact with the family before communicating the news

Share information

   To avoid repeated history taking To ensure no conflicting messages given to the family To ensure referring party is updated  To ensure if you refer on that the next team know what parents already know (include GP’s, Public Health Nurses, specialist teams in other centres) Take care at shift changeover times to communicate with your team about the news which has been received by the family

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6. Training and Education

High level of professional interest in training and support for in this area:   93% of professional respondents felt communications skills training relevant 80% supported the need for specific training for informing families of child’s disability 

“It’s the toughest part of the job really. When you have experience you will prioritise this because it’s a big priority, because it’s something that parents remember”

Consultant Paediatrician, Harnett et al 2007 Training should include       communications skills training disability awareness cultural awareness and diversity training listening skills role play/experiential training parental input

Summary of Research Findings

 When there are deficits in practice the consequences for parental distress can be significant  When professionals do not feel adequately trained or supported, it increases the stressful nature of this emotionally challenging task  Strong rationale for implementing evidence-based guidelines that aim to ensure a more consistent approach to supporting parents and professionals

Implementation of best practice – rationale

 Poor disclosure practice can: - Impact on the welfare of the child when inadequate information leads to delays in accessing support (Hatton et al 2003) - Increase parental stress at the time of diagnosis and adversely affect the ongoing parent-professional relationship (Harnett et al 2007) - Increase the risk of litigation (Fallowfield and Jenkins, 2004, State Claims Agency 2008)  Dissatisfaction with disclosure is not inevitable and good practice increases parental satisfaction with how they are told of their child’s disability (Cunningham, 1994)

Part 4 Next steps…

Group discussion (20 minutes): What actions would need to be taken to implement the Guidelines      In my own practice?

Within my team?

Between teams in our organisation? Between teams in our region?

When we liaise with other centres?

Further information: [email protected]

Download Guidelines or Research Report & take our E-Learning module: www.informingfamilies.ie

             References Abel J., Dennison S., Senior-Smith, G., Dolley, T., Lovett, J., & Cassidy, S. (2001) Breaking Bad News – development of a hospital-based training workshop. The Lancet Oncology, 2, 380-384. Baird, G, Mc Conachie, H, & Scrutton, D. (2000) Parents perceptions of disclosure of the diagnosis of cerebral palsy. Arch Dis Child, 83, 475-480.

Barnett , M., Fisher, D., Cooke, H., James, P., & Dale, J. (2007) Breaking bad news: consultants’ experience, previous education and views on educational format and timing. Medical Education, 41, 947- 956 Cunningham, C. (1994) Telling Parents their Child has a Disability. In Mittler, P. & Mitter, H. (Eds), Innovations in Family Support for People with Learning Disabilities. Lancashire, England: Lisieux Hall.

Department of Health (1990). Needs and Abilities, Report on the Review Group on Mental Handicap Services. Dublin. Stationery Office.

Doyle, A (2004) Report of the Maternity and Intellectual Disability Review Group on Integrated Patient Care, Dublin: Eastern Regional Health Authority. Fallowfield, L. & Jenkins, V. (2004). Communicating sad, bad, and difficult news in medicine. Lancet, 363, 312 19.

Harnett, A et al (2007). Informing Families of their Child’s Disability – National Best Practice Guidelines. Consultation and Research Report. National Federation of Voluntary Bodies, Galway. Hatton, C., Akram, Y., Robertson, J., Shah, R. & Emerson, E. (2003) The disclosure process and its impact on south Asian families with a child with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 16, 177-188.

Redmond, B (2000) The Needs of Carers of Fragile Babies and Young Children with Severe Developmental Disability. The Centre for the Study of Developmental Disabilities and Department of Social Policy and Social Work, University College, Dublin. Right From The Start Working Group (2003) Right From the Start Template – Good Practice in Sharing the News. London: SCOPE Sloper, P. & Turner, S. (1993) Determinants of parental satisfaction with disclosure of disability. Developmental Medicine and Child Neurology, 35, 816-825.

South Western Area Health Board & Rush, D. (2003) Final Report of Early Services Kildare & West Wicklow study. The Performance Partnership, Galway.