Juvenile idiopathic arthritis Flashcards
Factors that influence the interaction of illness:
Nature of the illness (sx, systems affected, tx) Child's age/development Child temperament (individual qualities) Culture (beliefs, preferences) Family Health beliefs about illness, tx. Family development Family functioning Socio-economic factors Support Approach to health care relationships.
'’Developmental Delays’’ in chronic illness issues:
- Usually excluded from definitions/research in ‘‘chronic illness’’
- Adds complexity clinically and in terms of research.
Juvenile idiopathic arthritis is
-an auto-immune/inflammatory disease, affecting joints.
Juvenile idiopathic arthritis onset (age)?
- Onset between 18 months and 16 y.o
- 40% between 18-36 months
Juvenile idopathic arthritis sx:
- Synovium becomes very thick, joints very stiff and painful.
- Sx fluctuate rapidly, can be predictable and unpredictable (Flare up and remission sometime on the same day)
- Affecting MSK function
Juvenile idiopathic arthritis high risk of:
Uvitis (inflammation of the eyes)
Video project saw on the class is to show:
- How child in school living with chronic disease must learn self-advocacy
- Sensitize school personnel to the impact of arthritis is significant and variable and the impact on student performance and enjoyment.
Toddlers (ages)
15-48 months
Toddlers: special challenges
- Become ‘‘independent’’, rapid development changes
- Challenges for parent to know the ‘‘normal’’
- Toddlers cannot explain easily how they feel (need to see through their behaviors)
- Difficult to console when in pain
- They are Distressed by medical care/intervention
School-age: special challenges
- Increased independence/competence
- More needs for information about disease and tx
- Illness may affect school performance and extra-curricular choices
- Most of the children want to be ‘‘normal’’; the sense of self is affected by peers.
Adolescence: Special challenges
- move into independent functioning; role of parent changing/ complex for all (Parental support = better outcomes)
- Activities with peers becomes priority, sense of self may be affected by the disease.
- Increase in ‘‘risky’’ behaviors (eg. Compromise with meds and alcohol, immunocompromise patient with marijuana due to the mold, risk of a fungus infection in the lung)
- Tendency to make decisions based on short-term goals (eg.lifestyle) rather than long-term outcomes.
- HARD for them to telling their teacher about JIA.
Chronic illness in childhood consequences:
- Require a new definition of ‘‘normal’’
- Can impact on all aspects of family life and child’s life
- Coping or learning to live with the illness as a dynamic process.
- '’qualities’’ of the illness have an impact
Eg. of ‘‘qualities’’ of the illness having an impact:
- Predictable vs unpredictable
- Degree of symptoms
- Life-threatening?
- Visibility to others
- Degenerative vs ‘‘may go away’’
Burden of care for pt/family:
- Meds/diets/physio/braces/…
- Needs assistance with ADL
- Degree of risk (diabetes/severe asthma..)
- Frequency of appointments
'’Normalization’’
- Defined as a family management style
- '’Preferred’’ approach (cultural specific?)
- Associated with good psycho-social outcomes for pt. (not always associated with max adherence to tx)
How do we learn to manage discomfort, pain?
VARIABLE
- Variability in pain chemistry
- Individual temperament (eg. anxiety, sensitivity, ability to self-soothe)
- Emotional state/cognition
- Maternal anxiety
- Pain allowing for ‘‘stress avoidance’’
A dilemma for parents managing with their child’s pain:
- Mother with baseline higher anxiety = child more pain/more incapacity
- Catastrophizing mindset = more protectiveness and more expression of pain
- Parent can solidify pain pathway (eg. Exam, say too much pain and can skip the exam, parents accept. = solidify the response)
- Parent solidifying pain pathway: Proven that those children experience more pain in adulthood
- To not solidifying pain pathway: Catch them before they complain about pain, give them attention before. Give them snack, hug, play with them (all about strong listening/awareness skills)
Nursing role in acute care setting with the child/family with chronic illness:
- Be aware of trajectory of illness (new diagnosis vs 3rd admission vs complication)
- Engage with parents (the expert of their child)
- Curiosity about their beliefs regarding dx, tx, etc.
In an inter-disciplinary care team, the role of nurses:
- Ability to communicate, articulate assessment and plan
- Advocacy for the patient
