Child with chronic condition Flashcards
What is chronic fatigue syndrome?
- CFS/ ME affects around 20,000 young people in the UK
- Unexplained fatigue >3months
- Significant impairment of functioning not relieved by rest
- Post exertional malaise
- No other cause found after investigation
- Associated cognitive difficulties, chronic pain, non refreshing sleep
What is avoidant/ restrictive food intake disorder (ARFID)?
- Most common type of eating disorder - previously known as eating disorder not otherwise specified
- Can be a mix of signs and symptoms associated with anorexia and bulimia
Implications of a chronic illness/ diagnosis
- Time off school and difficulty completing work
- Feeling different to friends
- Needing to plan meals and medications
- Increased dependence on parents when independence is normally developing
- Impact on employment
- Future fertility
- Life expectancy
First sign of puberty in girls?
- First sign of puberty in girls is breast development (Tanner stage 2)
- Menarche follows within 2 yrs
- Early growth spurt
First sign of puberty in boys
- First sign of puberty in boys is testicular enlargement (Tanner stage 2)
- Later growth spurt
What is Fraser / Gilick competence?
- A young person under 16 can consent to treatment provided he or she is competent to understand the nature, purpose and possible consequences of the treatment proposed
Competent if:
- Understands the doctor’s advice
- Doctor cannot persuade the young person to inform his or her parents
- Young person is very likely to begin or continue having sexual intercourse with or without contraception
- The young persons physical or mental health or both are likely to deteriorate if he or she does not receive contraceptive treatment
- The young persons best interest require the doctor to give contraceptive advice or treatment or both without parental consent
HEEADSSS framework
Framework to ask children about personal life
- Home
- Education
- Eating
- Activities
- Drugs
- Sexuality
- Suicide
- Safety
Why might a young person miss their medications?
- Poorly developed abstract thinking and planning
- They forget
- Difficulty in managing future self
- Feels bulletproof and long term implications are not a priority right now
- Rejection of medical professionals as part of normal peer identification and separation from parents
- Side effects unacceptable e.g. weight gain with insulin or feeling spaced out with anticonvulsants
- Not a rebellion against their condition
When does palliative care begin?
At time of diagnosis
*Palliative care does not mean end of life care
Palliative car: symptom control
- Pain: one of the most common symptoms to manage. Treatment tailored to cause of pain e.g. bone vs nerve pain. In children with communication difficulties always consider pain in hips (time in wheelchair), teeth (decay) and abdomen
- Nausea and vomiting: review medication to see if it’s the cause of the symptoms, consider whether the cause is central when prescribing anti-emetics, jejunal feeding can help
- Seizures: anticonvulsants, check medications are not interfering with the metabolism of others
- Agitation: sedatives, address underlying cause/ pain
Psychological and spiritual aspects of palliative care
Available from:
- Specialist psychological support
- Community nursing teams
- Specialist nurses
- GP
- Hospice teams: often build a relationship with the child and their parents
Spiritual support
- Faith leaders
- Often people do not describe themselves as religious but have a sense of spirituality
- Can be difficult in times of crisis and can challenge beliefs
- Professionals working in palliative care or closely with families can help support during this time
What is the doctrine of double effect?
Risk of hastening death is accepted if the intention of using the drugs is solely to control symptoms when death is inevitable
Care of a child after death
- Most hospices have refrigerated bed rooms - families often report a very positive experience after being allowed time to spend time with their loved one after they have passed
- Allows families to grieve at own pace
- Practical support to arrange funerals
- Bereavement support likely needed for months and years
Outline the needs of a child following diagnosis of DM
Depends on the age of the child
- Child aged 4 wont have much awareness of what’s going on but will be scared, information for parents
- Aged 9: more aware, may be able to check blood glucose, still need support from school staff to check glucose levels and give injections etc
- Aged 13: moving around in school, moving classrooms etc, will be doing almost all diabetes related tasks, school staff need to be aware of emergencies
- Aged 18: from children’s clinic to adult clinic, transition should be gradual
Signs that patients are struggling with DM control
- Testing: several tests in a day but then none for a number of days
- Insulin: missing doses, no carb counting or correcting high levels
- Hypoglycaemia: seems sporadic, can be severe with patient needing help to manage, not correcting with recommended dextrose tablets
- Some signs of early complications