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Nursing Care General Notes

These are some examples and more information is given in the Cases for Discussion module.

Potential problems

Nursing support

Prolonged symptoms before diagnosis causing distress, fear and low mood

Ensure family, child, young person are included in discussions about care. Ensure understanding of condition, prognosis and treatment. Allow time for questions and concerns addressed. Observe eye contact, interaction, signs of distress and consider psychology support if required.

General ill health and potential loss of joint function or muscle strength affecting ability to maintain own personal hygiene

Altered dietary intake and medications may alter bowel habit

Assess activities of daily living, identifying individual impact of condition and assist with hygiene as required. 
Assess patient safety if muscle weakness an issue. Encourage independence within patient's ability. Ensure privacy and dignity is upheld and offer escort to bathroom if required.
Assess stool output – if constipated discuss use of laxatives. Consider inflammatory bowel disease with increased frequency, abdominal pain, blood or mucus in stools, mouth ulcers.

Impact of diagnosis upon the family

Provide disease information in varying formats to improve understanding; signpost to further information (e.g websites). Discuss role of the specialist team. Ensure family know how and who to contact for advice.
Discuss how family will care for their child who may be unwell for a prolonged time. Family members may need to consider time off work to look after their child and see GP for a sick note if required. Specialist team may provide letter to employer if necessary. Child may require time off full time school so educational needs need to be considered.
Encourage attendance at appointments and aid understanding as to why review is necessary. Rationalise appointments  to minimise disruption to family and school life.

Child is immunocompromised due to underlying condition and / or subsequent treatment

Child is vulnerable to infections and atypical presentation of sepsis

Child nursed in a cubicle where possible. Be aware that children may deteriorate quickly.
If temperature >37.5 degrees Celsius on two occasions (or 38 degrees on a single occasion) then infection screen is needed.
Teach parents how to check their child’s temperature and when to seek advice. Educate about individual medication regimes including action of drugs and possible side effects. If taking steroids, ensure advice given regards not stopping steroids without discussion with specialist team. Give advice regarding contact with chicken pox and shingles and management.
Advise vaccines to avoid (i.e.live vaccines).
Liaise with local hospital for shared care if required.

Diagnosis during adolescence may compound problems with altered body image e.g corticosteroids causing weight gain, acne, striae

Side effects are usually reversible once corticosteroids are reduced. Dietary advice to minimise weight gain.
Liaison is important to support teachers and young person.
Consider specific medication for acne and cosmetic treatments for striae.

Absence from school may impact on peer interactions, education and examinations

Fatigue and tiredness may affect school attendance

Promote support from peers, family, teachers. Liaison with school (teachers, school nurse) improve understanding of the condition, treatments and impact on education. Support young people to explain condition and treatments.
There is risk of bullying and problems with peer interactions.
Fatigue and poor sleep are common with impact on normal routines. Families need support to re-establish bed time, sleep hygiene and appropriate rest. Pacing and building up of stamina need support from the multidisciplinary team (MDT). Liaison with school for reasonable adjustments may be required (phased return to school and a flexible time table to minimise moving classrooms or use of stairs).
“Do’s and Don’ts” for sport, school trips and activities. Input from physical therapists important. Encourage normal activities when disease is controlled.
Consider deferring examinations or informing examination boards in advance with potential for extra time or scribe.

Menstrual cycles can be affected by chronic illness or corticosteroids

Consider referral for contraceptive pill; note concerns about oestrogen containing pills that may exacerbate disease flares in some conditions e.g. Juvenile Systemic Lupus Erythematosus.

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