Words You Never Forget:

1

• Words You Never Forget
• Informing and supporting families when a child is
  diagnosed with a disability

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Overview- Informing Families Training

• 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

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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 childs
  disability to a family?
• in supporting a family who have been given their
  childs diagnosis?

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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.

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• Part 3
• Presentation of Research Findings
• and Recommendations
• Best Practice Guidelines for informing and
  supporting families when a child is diagnosed
  with a disability

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Informing Families of their Childs 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)

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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 Taoiseachs Public Service
  Excellence Award in 2010).

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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

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Project Scope

• Physical, Sensory, Intellectual Disability and
  Autistic Spectrum Disorders
• Ante-natal, at birth, evolving diagnosis
• Hospital, Community, Disability Services
• Professionals in 27 disciplines

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Research Findings
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Parental Satisfaction with Disclosure
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Professional Satisfaction with Disclosure
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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.

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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

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(N184)
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Content of the Best Practice Guidelines
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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

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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

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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.

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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

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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 childs 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

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I said look, if you had an ordinary child, they
dont give you a book saying, look, hes going to
rob a car and hes going to get a girl pregnant
or hes going to fail his exams. So you have to
live life as it goes by. They dont tell you that
with the ordinary child. Parent of a
child with a disability (Harnett et
al 2007)
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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 childs 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

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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 parents
  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 anyones 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

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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 GPs, 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 childs disability
• Its the toughest part of the job really. When
  you have experience you will prioritise this
  because its a big priority, because its
  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

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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

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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 childs
  disability
• (Cunningham, 1994)

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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?

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Further information Alison.harnett_at_fedvol.ie
Download Guidelines or Research Report take
our E-Learning module www.informingfamilies.ie
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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 Childs 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.