Flashpoints are transition eg from nursery to primary, to secondary, to adult services.
At diagnosis, constantly try to normalise.
Other triggers are new or difficult situations: staff changes esp specialist nurses. Effect on parent’s work, parent’s role in family, child’s fears.
Past experience of medical condition, procedure, hospital/doctors will colour.
Parenting in chronic illness – limit setting vs laxity (love!) in face of illness.
Behaviour as communication of fear, displeasure!
Signs and symptoms – changes in appearance, mood, behaviour, thoughts.
Support at diagnosis: names, phone numbers! Normalise experience and feelings. Signpost peer support, online or other. Written. Practical eg financial, family routines. Joint working for consistent info. Deciding what chats are appropriate with child present. Reiteration.
“Other people in your situation have tried x, y and z. Do any of those sound good?”
Pre-5: encourage play and exploration, avoid interfering with parental proximity.
5-7 May develop magical thinking (I think, and it comes true). Guilt, punishment, contagion? Accept what other children say as true! Imitate parental behaviour. Death as reversible.
Drawing! Check understanding of bodily functions.
Sue Robinson, hospital passport (Janie donnan). For primary school age, app for teens to follow.
Concrete reminder of achievements and rewards.
Hand on tummy, feel rise and fall.
Guidance for parents!
Sucrose. Video for juniors, showing expected techniques.
Functional analysis (ABC) – immediate antecedent (context as much as events), consequences (esp people’s actions, any difference in attention (anything given or taken away)? What would usually happen otherwise?) use diary again. Bedside table! 5-7 days max, can be repeated. Review within 2 weeks.
Pacing – beware boom/bust cycles. Rest before exhausted but maintains daily activity.
Activity record: enjoyment vs pain impact.
Smart goal. Low hanging fruit first! Goal diary – did you achieve it? Rate pain. How did you feel?
If/then plan – beware abandoning at first set back. If you can’t get to school one day, then what will you do? Phone to update? Try harder next day?
How confident? What benefits, what difficulties?
Visualisation – can child describe a scene easily? Else unlikely to work. Personally relevant dream place. Safe and happy. Real or imagined. Describe it in as much detail as you can – all senses. As long as possible; but 5 mins is plenty.
Record positive achievements.
Positivity – but listen empathetically.
[NES study day – Liz Hunter, Ashley Sikoura]