Talking with families about a diagnosis of childhood disability Dr Amy Gray Paediatrician 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 Assess what the parent/patient already knows (what they want to know) Use simple, clear language Avoid (or explain) medical terms Take your time, wait for a response Empathise Check for understanding Make a plan to follow up More questions More information Find the right time and place

Essential ingredients Assess what the parent/patient already knows (what they want to know) Use simple, clear language Take your time Wait for a response Empathise Make a plan to follow up More questions More information The right time and place 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...