ch 36: chronic illness, disability & end of life care Flashcards
EXAM 2 content
what is happening with children with chronic or complex diseases?
- increase viability of preterm infants
- life sustaining technology is now portable
- life extending treatments
- rise in numbers of children with complex & chronic diseases
what are some examples of technology that is now portable?
ventilators & kangaroo pumps
why is there a rise in numbers of children with complex & chronic diseases? what do we have more awareness of?
- we are getting with medicine –> longer lives
- resuscitating earlier, early as 24 weeks
- more awareness: investigating, newborn screening, & consulting genetics faster
what is trending in our care with children with chronic / complex diseases?
- developmental focus: early interventions
- family centered care
- family health care provider communication
- establishing a therapeutic relationship
- role of culture
- shared decision making
- “normalization”
what do we do for family centered care?
- supporting
- social work
- case managers
- case coordinators
- nurses demanding better access
as health care providers, how should we communicate?
do NOT be judgemental, have an open & honest discussion
what are the steps in shared decision making?
- SEEK your patient’s participation
- regardless of age! change the q’s based on age - HELP your patient explore & compare treatment options
- tell them ALL the options - ASSESS your patient’s values & preferences
- what do they want to get out of treatment? - REACH a decision with your patient
- especially to DNI/DNR - EVALUATE your patient’s decision
what does it mean that there is more “normalization?”
children with chronic illness is more normal and they can still do normal things
how does the role of culture affect our care? how do we care for their culture?
do NOT stereotype, ask the family what they want
how does a child’s chronic/complex disease affect their family
- 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
what are some additional stressors on the family with their child with chronic/complex disease?
BIGGEST STRESSOR = FINANCE
- insurances can deny paying for things
- families do not get medicaid right away
how do we help families cope?
use behaviors aimed at reducing tension
- dogs on call
parental empowerment
- recognizing, promoting, & enhancing competence
what kinds of feelings can the family have when their kid has a chronic illness? how can we help them?
- shock & denial: especially the siblings, they can feel left out
- adjustment –> can cause anxiety & isolation
- reintegration & acknowledgement
- establishing a support system
what are the determinants of health?
- physical environment
- sociocultural context
- peers & family
- coping response
- behavior
- biology
- genes
what are the areas of the spectrum of health? health outcomes & distribution in the population?
- healthy
- at risk
- chronic illness
- impairment
- functional limitations
- disability
- end of life
- death
what are the policies and other interventions at individual & population levels? strategies to achieve “living well”
- population surveillance
- public policy
- media
- public health
- community orgs
- healthcare
how do we give nursing care to the family & child?
- assessment: lots of the things are based on looking!
- providing support at time of diagnosis
- supporting family’s coping methods
how do we support the family’s coping methods? what do we do if the affected child is crying? siblings?
- 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
what else do we educate about?
- ADLs
- possible differences in nutritional requirements: G tube v J tube
what is the difference between a G tube & J tube?
- G tube = goes into stomach & stays IN the stomach
- J tube = goes into stomach & goes INTO & STAYS in jejunum
what do we need to consider for safe transportation?
car seats!
- if the child is too small –> car bed
how do we promote normal development in children with chronic/complex disease?
- early childhood: basic trust, separation from parents, beginning independence
- school age: industry & activity –> give them school work
- adolescence: developing independence & autonomy
how do we establish realistic future goals for the child? what kinds of problems rise with prolonged survivial?
- 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
how do we care for children at the end of life? what kinds of decisions we need to help them & the family make?
- palliative care: pain & symptom management
decisions
- ethical considerations
- physicians & health care team needs to help parents
- make sure the dying child is making decisions
how do parent’s grief affect other siblings? who has the hardest time with death?
- children COPY parents’ grief response
- adolescents have the hardest time with death
what are some option treatments for end of life child? can a child designate themselves as DNR/DNI?
- 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
when the child is going towards end of life, what do we need to care for as the nurse?
- 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
after a child dies, what usually happens?
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
what should we understand about grief & mourning?
- highly individualized, there is no normal!
- anticipatory grief
- mourning process
- recognize between complicated & abnormal grief
- parental vs sibling grief
what should the nurse’s reaction be to caring for dying children?
- be present with the family
- use silence
