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nurs 345: children > ch 36: chronic illness, disability & end of life care > Flashcards

ch 36: chronic illness, disability & end of life care Flashcards

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1
Q

what is happening with children with chronic or complex diseases?

A
  • increase viability of preterm infants
  • life sustaining technology is now portable
  • life extending treatments
  • rise in numbers of children with complex & chronic diseases
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2
Q

what are some examples of technology that is now portable?

A

ventilators & kangaroo pumps

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3
Q

why is there a rise in numbers of children with complex & chronic diseases? what do we have more awareness of?

A
  • we are getting with medicine –> longer lives
  • resuscitating earlier, early as 24 weeks
  • more awareness: investigating, newborn screening, & consulting genetics faster
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4
Q

what is trending in our care with children with chronic / complex diseases?

A
  • developmental focus: early interventions
  • family centered care
  • family health care provider communication
  • establishing a therapeutic relationship
  • role of culture
  • shared decision making
  • “normalization”
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5
Q

what do we do for family centered care?

A
  • supporting
  • social work
  • case managers
  • case coordinators
  • nurses demanding better access
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5
Q

as health care providers, how should we communicate?

A

do NOT be judgemental, have an open & honest discussion

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5
Q

what are the steps in shared decision making?

A
  1. SEEK your patient’s participation
    - regardless of age! change the q’s based on age
  2. HELP your patient explore & compare treatment options
    - tell them ALL the options
  3. ASSESS your patient’s values & preferences
    - what do they want to get out of treatment?
  4. REACH a decision with your patient
    - especially to DNI/DNR
  5. EVALUATE your patient’s decision
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6
Q

what does it mean that there is more “normalization?”

A

children with chronic illness is more normal and they can still do normal things

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6
Q

how does the role of culture affect our care? how do we care for their culture?

A

do NOT stereotype, ask the family what they want

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6
Q

how does a child’s chronic/complex disease affect their family

A
  • emotions are similar to grief, this is normal!
  • divorce is high
  • angry at each other bc of stress
  • separation can happen
  • single parents have financial issues
  • siblings feel alone & parents won’t focus on them
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7
Q

what are some additional stressors on the family with their child with chronic/complex disease?

A

BIGGEST STRESSOR = FINANCE
- insurances can deny paying for things
- families do not get medicaid right away

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8
Q

how do we help families cope?

A

use behaviors aimed at reducing tension
- dogs on call
parental empowerment
- recognizing, promoting, & enhancing competence

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9
Q

what kinds of feelings can the family have when their kid has a chronic illness? how can we help them?

A
  • shock & denial: especially the siblings, they can feel left out
  • adjustment –> can cause anxiety & isolation
  • reintegration & acknowledgement
  • establishing a support system
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10
Q

what are the determinants of health?

A
  • physical environment
  • sociocultural context
  • peers & family
  • coping response
  • behavior
  • biology
  • genes
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11
Q

what are the areas of the spectrum of health? health outcomes & distribution in the population?

A
  • healthy
  • at risk
  • chronic illness
  • impairment
  • functional limitations
  • disability
  • end of life
  • death
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12
Q

what are the policies and other interventions at individual & population levels? strategies to achieve “living well”

A
  • population surveillance
  • public policy
  • media
  • public health
  • community orgs
  • healthcare
13
Q

how do we give nursing care to the family & child?

A
  • assessment: lots of the things are based on looking!
  • providing support at time of diagnosis
  • supporting family’s coping methods
14
Q

how do we support the family’s coping methods? what do we do if the affected child is crying? siblings?

A
  • parent to parent support
  • advocate for empowerment
  • if crying: assess whats wrong then use silence, deep breathing & just be with them
  • be aware of how you approach siblings, it can destroy trust
15
Q

what else do we educate about?

A
  • ADLs
  • possible differences in nutritional requirements: G tube v J tube
16
Q

what is the difference between a G tube & J tube?

A
  • G tube = goes into stomach & stays IN the stomach
  • J tube = goes into stomach & goes INTO & STAYS in jejunum
17
Q

what do we need to consider for safe transportation?

A

car seats!
- if the child is too small –> car bed

18
Q

how do we promote normal development in children with chronic/complex disease?

A
  • early childhood: basic trust, separation from parents, beginning independence
  • school age: industry & activity –> give them school work
  • adolescence: developing independence & autonomy
19
Q

how do we establish realistic future goals for the child? what kinds of problems rise with prolonged survivial?

A
  • cultivate realistic vocations (a strong feeling of suitability for a particular career or occupation)

prolonged survival = new decisions & problems
- independent living
- marriage, employment, & insurance
- reproductive decisions

20
Q

how do we care for children at the end of life? what kinds of decisions we need to help them & the family make?

A
  • palliative care: pain & symptom management

decisions
- ethical considerations
- physicians & health care team needs to help parents
- make sure the dying child is making decisions

21
Q

how do parent’s grief affect other siblings? who has the hardest time with death?

A
  • children COPY parents’ grief response
  • adolescents have the hardest time with death
22
Q

what are some option treatments for end of life child? can a child designate themselves as DNR/DNI?

A
  • hospital
  • home care
  • hospice
  • 18+ yo can only sign their own DNR/DNI
  • 17 & under cand, they need to talk with parents and they have the sign it
23
Q

when the child is going towards end of life, what do we need to care for as the nurse?

A
  • fear of pain & suffering: pain & symptom management, parents & siblings need support
  • child’s fear of dying alone
  • parent’s fear of not being present at time of child’s death
  • fear of actual death
  • place of death: home or hospital
24
Q

after a child dies, what usually happens?

A

organ donation: benefiting another human being
- common question to ask families
- sensitive approach
- legislated in many states
- if there is an unexplained or violent death –> autopsy required by law

25
Q

what should we understand about grief & mourning?

A
  • highly individualized, there is no normal!
  • anticipatory grief
  • mourning process
  • recognize between complicated & abnormal grief
  • parental vs sibling grief
26
Q

what should the nurse’s reaction be to caring for dying children?

A
  • be present with the family
  • use silence

nurs 345: children (23 decks)

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