Nursing in Pediatric MS

1. Nursing in Pediatric MS Jennifer Boyd, RN, MHSc, CNN(C), MSCN Lynn MacMillan, RN, CNN(C), MSCN Pediatric Multiple Sclerosis Clinic The Hospital for Sick Children Toronto, Canada

2. Developmental Issues • Children are constantly growing and developing • Approach to care changes at different developmental stages • Teens need some private time without parents during clinic visits • Care involves both the child and the family • Suggest collaborating with pediatric professionals to address developmental needs

3. Education and Support of Parents • Initially, the parents are most burdened by the diagnosis • Facilitating adaptation of the parents will facilitate adaptation of the child • Provide current, accurate information • Identify resources (e.g., websites, parent support networks) • Offer hope • Encourage access to personal sources of support • Refer for counseling as needed

4. Education and Support of Parents • Educate parents as the advocates and decision-makers for their children • Discuss possible school issues and advocacy resources • Talk about disclosure of diagnosis to others

5. Education and Support of Children • Provide necessary and requested information at an age appropriate level • Recognize that many do not want a lot of information • Encourage parents to capitalize on opportunities to provide education when their child asks questions • Reassure they are not going to die • Review rationale/benefits and side effects of treatment

6. Education and Support of Children • Encourage them to participate in their regular activities with adaptations as needed • Provide guidance around dealing with fatigue and heat intolerance • Recognize that parents are a child’s primary means of support • Refer to a social worker or psychiatrist at a pediatric facility if counseling needed

7. Communicating with Schools • Obtain consent from parents and assent from child before conveying information to school (verbal and written) • Identify issues that will affect performance and attendance • Advocate for added supports if needed

8. Treatment Challenges • Parents make the treatment decisions • Young children may not have the cognitive maturity to understand the rationale for injections and long-term benefits • Adolescents do not always accept need for therapy

9. Initiating Treatment • Important to make first injection a positive experience • Involve the whole family when teaching • Ensure understanding of rationale • Encourage participation of the child as much as possible • Consider desensitization therapy for intense fear of needles • Use a teaching doll

12. Initiating Treatment • Offer choices (e.g., manual vs autoinjector, location of injection, position) • Explore with the child what would help with coping • Consider using a topical anesthetic cream • Have the parent observe the nurse giving the first injection

13. Advice for Parents • Avoid punishment or removal of privileges for lack of cooperation with injections • Use incentives if necessary • Create expectations about level of cooperation • Use a caring, consistent and persistent approach

14. Teaching Self-Injection • 8 year olds can learn sc injections, adolescents can learn IM injections • Supervision by a parent necessary until competence ensured • Review merits of self-injection • Re-introduce idea periodically as child matures • Encourage increased involvement

15. Adherence Issues • Infrequent problem with younger children due to parental involvement (parents adhere, children comply) • Adolescents may question their parents’ decisions and refuse to initiate or continue treatment

16. Psychosocial Factors that Interfere with Adherence in Adolescents • Want to be like their peers • Concerned about physical appearance • Experiencing a lot of stress • Use denial, acting-out, risk-taking or intellectualization as coping strategies • Concrete and egocentric thinking (believe they are unique and invulnerable, don’t appreciate future consequences)

17. Psychosocial Factors that Interfere with Adherence in Adolescents • Emotional and physical distancing from family with desire to gain control • High degree of irresolvable conflict between parent and child (confrontation, lack of negotiation) • Lack of support from peers • Perceived lack of respect from health care professionals

18. Factors that Promote Adherence in Adolescents • Parental involvement in treatment process • Family harmony and acceptance of teen • Support of peers • Positive, mutually respectful relationships with health care professionals that involves negotiation/re-negotiation • *Involvement in decision-making

19. Strategies for Addressing Adherence Issues • Explore issues that make adherence difficult • Involve teen in decision-making • Emphasize how treatment helps them to take control of their future health (older teens) • Educate at a level they understand and has meaning for them, re-educate periodically • Increase supervision ( clinic visits, phone calls)

20. Strategies for Addressing Adherence Issues • Facilitate negotiation around shared responsibility between parent and child, promote interdependence • Refer for individual or family counseling • Foster an open, caring and supportive relationship between teen and health care professionals (“therapeutic alliance”)

21. Summary • Care needs to be adapted to address developmental issues • Care involves both child and family • Education and support needs of parents and children are different • Supporting the parents supports the child • Advocate around school issues • Make initiation of treatment a positive experience that involves the whole family • Adolescents create unique challenges with treatment adherence • Collaborate with pediatric specialists