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Transcript of Talking with families about a diagnosis of childhood disability Dr Amy Gray Paediatrician Centre for...
Talking with families about a diagnosis of childhood disability
Dr Amy GrayPaediatrician
Centre for International Child Health, University of Melbourne, Australia
Health Frontiers, Lao PDR
Overview
• The diagnosis of disability– The doctor’s perspective– The family’s perspective
• Breaking bad news• Experiences and challenges in Lao PDR
The doctor’s perspective
• Diagnosis of disability can be difficult• The problems may be clear but cannot be
given “a name”• The diagnosis may be clear but we are not
clear what it means for any one child
The family’s perspective
• Often bad news...– A problem that cannot “be fixed”– Loss of hope and expectations– Changed view of the future
• May be a relief...– An answer to their worries or questions– An understanding of what the future might hold– May remove guilt
Do not forget the child...
• This happens...even in paediatrics
• We think – the child is too young to understand– a child with a disability cannot understand
• Remember physical disability in many cases is not associated with intellectual disability
Breaking bad news
• A stressful process for the person giving and receiving the news
• Good communication skills are the key• Remember the parent/patient may only take
in the first few sentences – Repeat important parts of the conversation and
key messages– Provide written information– Make a time to talk again
Essential ingredients
Essential ingredients
Take time to understand the cultural environment and family context
Experience in Lao PDR
• A junior doctor comes to ask some advice...– She has seen a 4 year old boy– Main problem: leg pain and difficulty walking– He has been to every hospital in Vientiane, 2 in
Thailand, and private clinics– No diagnosis
More information...
• Problem is not pain, but weakness• Problems began when he was young• First walked when he was 20 months• In the last 2 years more difficulty running, and
now walking
More information
• Examination shows – muscle weakness– Thin upper legs – Enlarged calf muscles– Gower’s sign
Dx: Muscular Dystrophy(Duchenne’s/Beckers)
Questions
• Doctor– Can it be cured?
• Response– “If not, then there is
nothing to do”
• Family– Can it be cured?
• Response– “If not then we can stop
using our money trying to find an answer”
What other questions should we ask?
• What can we do... – to improve quality of life?– to improve survival?
• What services/help is available?– Physiotherapy– Help with mobility– Nutrition support– Regular follow up with the same health provider
What other questions should we ask?
• What does this mean for the child/family?
• What problems do we need to monitor, prevent and treat?– Eg Down Syndrome and thyroid function– Eg Cerebral palsy and seizure control
• What does the family want/need?
Families/patients don’t always know what to ask...
...or how to ask it
Challenges in Lao PDR
• Lack of knowledge about child disability• Tests for confirming diagnoses not available• May not have “the words” for explaining the
problem• Words that are available are used incorrectly– Cerebral palsy used as a name for many problems
that are not cerebral palsy
Challenges in Lao PDR
• Focus in hospitals on “cure”• Families (and doctors) want to know if the
problem “can be cured”...if it cannot, no other help may be offered or asked for
• Many doctors assume there are no resources to help children with disabilities
• Services may not be available• Follow up is difficult
Strengthening counselling for childhood disability is vital for providing better care
...but this cannot be done in isolation from the rest of the health system
Counselling the patient/family
Better diagnosis (knowledge, tests,
resources)Family context, understanding
Medical education/resources Community education, resources, access to health care
Medical services: treatment,
monitoring follow-up
Support services (physiotherapy,
nutrition)
Awareness, availability, access, affordability...