Education and Support
Education and support is a vital aspect of management and delivered by all members of the MDT.
- Families will often contact nurses for advice and it is important that they know when to seek advice and how to get in touch. This refers to education and support for patients, families and health care providers about the condition, treatment and management plan. Good understanding is key to safe and effective care especially as many treatments can be delivered at home or in shared care with clinicians working in different hospitals.
- The PRINTO Information leaflets for families about rheumatic diseases are useful and available in many languages.
- The following table includes some examples of the breadth of general topics
|Patient may have prolonged symptoms before diagnosis causing distress, fear & low mood||Ensure family, child, young person are included in discussions. Ensure understanding of condition, prognosis & treatment plans. Allow time for questions to be asked and concerns addressed. Observe eye contact, interaction, signs of distress & consider psychology support.|
|General ill health & 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, identify impact of condition & assist with hygiene. Assess patient safety if muscle weakness an issue. Encourage independence within patient's ability. Ensure privacy & dignity & offer escort to bathroom if required. Assess stool output – if constipated discuss use of laxatives. Consider if patient has signs of inflammatory bowel disease, increased frequency, abdominal pain, blood or mucus in stools, mouth ulcers.|
|Impact of diagnosis upon the family||Provide family, child, young person with disease information in varying formats to improve understanding; signpost to further information (e.g., websites). Discuss with family the role of the specialist team. Make sure family know how & 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 & see GP for a sick note if required. Specialist team may provide letter to employer if necessary. Child may require time away from full time school so educational needs must be considered. Encourage attendance at appointments & aid understanding as to why review is necessary. Aim to rationalise appointments if possible to minimise disruption to family & school life.|
|Immunocompromised due to underlying condition & subsequent treatment. Child vulnerable to infections and atypical presentation of sepsis||Child should be nursed in a cubicle where possible. Record vital observations (Patient Early Warning [PEWs] chart). 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 & when to seek advice. Educate parents / patient if age appropriate about individual medication regime including action of the drug, side effects. If taking steroids ensure advise not stopping steroids without discussion with specialist team. Give advice regarding contact with chicken pox, shingles & management. Advise parents / child about vaccines. Liaise with local hospital so that local care can be provided if required.|
|Diagnosis during adolescence compound problems with altered body image e.g., corticosteroids causing weight gain, acne, striae||Explanation that side effects are usually reversible once corticosteroids are reduced. Advice to minimise weight gain. Liaison with school is particularly important to support teachers & young person in school. Consider treatment for acne & cosmetic treatments for striae.|
|Absence from school may impact on peer interactions, education & examinations. Fatigue & tiredness may affect school attendance||Promote understanding & support from peers, family, teachers. Liaison with school (teachers, school nurse) to improve understanding of condition, treatments & impact on education. Support young people by explaining their condition & treatments to peers and teachers. There is risk of bullying & problems with peer interactions. Fatigue & poor sleep are common with impact on normal routines. Families may need support to re-establish bed time, sleep hygiene & appropriate rest. Pacing & building up of stamina need support from MDT, phased return to school & a flexible time table to minimise moving classrooms or use of stairs. “Do’s & Don’ts” for sport, school trips & activities. Input from physical therapists to encourage normal activities when disease is controlled. Consider deferring examinations or informing exam boards; potential for extra time or scribe support.|