Nursing in Pediatric MS

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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

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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

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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

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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

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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

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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 childs primary
  means of support
• Refer to a social worker or psychiatrist at a
  pediatric facility if counseling needed

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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

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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

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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

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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

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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

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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

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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

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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, dont appreciate
  future consequences)

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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

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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

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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)

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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)

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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