Communicating with parents of chronically ill children

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Communicating with parents of chronically ill
children

• Anette H. Graungaard

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Frequency of disability in children

• 1 of newborn children are having severe
  disabilities
• Approximately 600 children/year in Denmark
• 50 of children with neurological disabilities
  do not get an aetiological diagnosis (Van
  Karnebeek CD et al. 2005 Am J Ment Retard)

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Chronic diseases

• Cystic fibrosis (12500)
• Cancer (160/year in DK)
• Urinary tract malformations (0,5-1100)
• Heart malformations (0,5-1100)
• Club foot (11000)
• Atopic dermatitis (3100 in infants)
• Epilepsy (4-51000 young children)

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Critical points of encounter

• The diagnostic process
• Diagnosis
• Discharge from hospital
• Establishing a new life
• Comorbidity
• Intercurrent (normal) diseases
• Children's check-ups/vaccinations
• Parents and siblings health and encounters

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The development of a theory of
resource-creation through a qualitative study of
parents of a severely disabled child
How do they manage?
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Research questions

• How do parents manage?
• And how do we improve support?

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A short presentation of methods

• Longitudinal design with repeated qualitative
  interviews with both parents with a two-year
  interval
• Inclusion within 3.5 months (1-9 months) after
  disability was diagnosed or strongly suspected
• Analysed with the Grounded Theory method (GT)

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INTERVIEW FAMILIES

• Girl, 1 month, microcephalia, Died 10 months old
• Boy, 10 months, myelomeningocele.
• Boy, 22 months, Wolf-Hirschhorn syndrome
• Girl, 1 month, Downs syndrome

• Boy, 8 months, infantile spasms.
• Boy, 10 months, unknown diagnosis
• Boy, 2 months, unknown diagnosis, died 22 months
  old
• Boy, 4 months, unknown diagnosis

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Results related to critical times of encounter

• Before the diagnosis
• Realizing the diagnosis
• Transition to a new daily life

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Before the diagnosis

• Parents experienced symptoms not recognized by
  health professionals
• parents confidence was shattered

It was the day after he was born, we noticed some
strange spasms in his arms and some blinking with
the eyes but then they said that we shouldnt
worry, it was presumably just stomach
problems (Beate)
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Before diagnosis 2

• Parents experienced everything as normal
• the suspicion of a disability was a shock

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Realising the diagnosis
Realising a known diagnosis
Realising an unknown diagnosis
(Graungaard A. 2007)
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How to inform?

• Severe brain damage its like being knocked
  out, why dont they just say now we will see
  what future brings?
• (Anders 1875)

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Parents coping with diagnosis

• Possibility of acting
• Creation of future pictures
• Maintenance of hope

I cant live if I dont hope for something, I
cant, even if maybe I know deep down that the
hope is unrealistic (Beate, 2860)
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Opposing emotions

• uncertainty lt---------------gt certainty
• hope/denial lt---------------gt realization
• frustration lt---------------gt confidence
• powerlessness lt--------------gtacting
  possibilities

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What can the GP do?

• Contact the parents
• Home visiting
• Get information about the child
• Support parents coping efforts
• Acknowledge parents contradicting feelings
• Support or emphasize positive, healthy or strong
  characteristics of the child

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• I think we really needed someone who said well
  you have got a disabled child, and that may get
  really tough, but disabled children are also
  wonderful children. I really missed someone who
  said that
• Frida

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Transition to a new life

• Parents reported consequences of the childs
  disability on almost all parts of life
• Interacting with the health care system and
  social service system was frustrating and
  resource- consuming

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A family ?
Dep. of Pediatrics
Dep. of orthopaedic surgery
physio- therapist
Children counsellor
University hospital
Dep. of cardiology
Occupational therapist
Ophthal- mologist
Local hospital
Special- institution
General practitioner
case- worker
psychologist
Special teacher
Disability team
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Parents as key workers

• We needed somebody who helped us, looked at the
  family, saw what we needed, and then fought this
  crazy battle with the local authorities for us,
  about money that is distributed the wrong way. It
  is too much to handle when you have so much else
  on your mind
• Frida

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What can the GP do?

• Contact the family
• Home visiting
• Get a picture of the familys greatest needs at
  the moment
• Clarify the familys resources
• Support the parents key worker function
• Get to know the familys social worker

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How to communicate?

• Parents current stage and mode of realization
• Consequences of parents experiences during the
  diagnostic process
• Parents changing emotional states
• Parents use of coping strategies
• Fathers and mothers are different

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Obstacles in supporting the family

• Lacking information from the hospital
• Lacking knowledge of the childs condition
• Lacking time!
• Lacking payment for extra work
• Does the family need/want my help?

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Advantages for the GP

• Knowing the family during pregnancy- and maybe
  longer
• Knowing siblings
• Knowing former medical and psycho-social history
  of the parents (at least the mother)
• Use to work in the bio-psycho-social framework
• Located in the familys neighborhood
• Responsible for vaccination and regular health
  check-ups during childhood

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Take home messages

• It is possible to ease parents troubles even
  when it is not possible to heal the child
• It is necessary to support parents as key workers
  and their interaction with the social service
  system
• Always be aware of the child's abilities as well
  as the disabilities

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Thank you for your attention