Pediatric Chronic Illness, Disability, and End-of-Life Care

Question 1

Increasing viability of preterm infants
Portability of life-sustaining technology
Life-extending treatments
Rise in the numbers of children with complex and chronic diseases

Answer 1

Scope of the prob

Question 2

40 weeks - full-term baby; want babies to make to - healthiest can be
Variety reasons why born before 40 weeks
Viability: 22 weeks earliest take
Comes with own set probs
Kids born earlier; more severe probs; technology improved so much ability keep longer and give life-saving measure

Answer 2

Increasing viability of preterm infants

Question 3

Can send baby home that has trach; ability give O2 at home

Answer 3

Portability of life-sustaining technology

Question 4

Prematurity and adv in medical care
Able do surgery and give meds - increase lifespan

Answer 4

Rise in the numbers of children with complex and chronic diseases

Question 5

Defn: any medical condition that persists more than a yr and affects sev organ sys or one organ sys critically enough that additional speciality experience crucial
Get variety people involved
Trends in care

Answer 5

Chronic or complex diseases

Question 6

Developmental focus
Family-centered care
Family—Health care provider communication
Establishing a therapeutic relationship
The role of culture
Shared decision-making
“Normalization”

Answer 6

Trends in care

Question 7

Instead chronologic focus
When have these, not focus on timeline milestones; focus on what can do and build off those; go at their own pace and developmental focus

Answer 7

Developmental focus

Question 8

Fam unit: only flourish and thrive with disease if fam thrives; parents extra stress - worry something happen to child and also very worried about finances esp if require lot equipment
Focus on fam and what they need

Answer 8

Family-centered care

Question 9

Providers - in hard spot: giving fam members bad news; ways can be done that are helpful: respond when have open communication, time answer questions, give options, talking through decisions with fam vs what going to do and why doing it - hurt communication if do that
Hurt communication - not being sensitive
Given diagnosis - not think ask questions until later with nurse because there; imp on same pg as docs and giving smae info

Answer 9

Family—Health care provider communication

Question 10

Build: being there; showing empathy; listen
Ask question and not know answer, find it out

Answer 10

Establishing a therapeutic relationship

Question 11

How fam func
Not assume something on how looks
Ask what imp to them and how view this better for therapeutic relationship

Answer 11

The role of culture

Question 12

Get them involved
Explain options and decisions and why doing something

Answer 12

Shared decision-making

Question 13

Helping fam find what new normal is - how have new fam life with chronic illness that may require lot additional help

Answer 13

“Normalization”

Question 14

Support fam’s coping and promote optimal functioning throughout child’s life: on-going esp for those with very chronic and complex conditions
Impact of the child’s chronic illness

Answer 14

The family of the child with chronic/complex conditions

Question 15

Parental roles
Mother-father differences
Single-parent families

Answer 15

Parents - Impact of the child’s chronic illness

Question 16

Extremely stressful
Go through crisis phase - compounded with what child envision - feel options taken away and norm mourn; role is to listen and not feel shameful - need be empathetic
Very sick and not give parents + feedback: feel + and satisfied when kids have + interactions = smile at us, love you, hug you; not give interactions - stressful and hard for parents

Answer 16

Parental roles

Question 17

Grieve differently; big point contention
Very hard on marriage - often divorce
Do with stress and diff mourning process/coping skills have

Answer 17

Mother-father differences

Question 18

Not go to daycare; has be primary care giver - give up job or stay home
Make priority to help them: esp financial; programs in community help these parents

Answer 18

Single-parent families

Question 19

Negatively impacted often
Some negative effects compounded when expected care for them - less attention from parent; have give lot time to sick child
Less financial resources and recreational resources - hurt relationship; make resent sick sibling
Diagnosis made when child older: TBI: healthy child has mourn loss of healthy sibling
Encourage discuss feelings, express feelings, ok to express and not horrible or mean that frustrated with sick sibling - need to express and say how feel
In hospital - encourage parents to spend time with healthy child; feel lot guilt when child in hospital and feel very guilty when leave bedside and make sure not making more guilty; encourage care for self and rest of fam

Answer 19

Siblings - Impact of the child’s chronic illness

Question 20

Concurrent stresses within the family
Coping mechanisms
Parental empowerment

Answer 20

Coping with ongoing stress and periodic crises:

Question 21

Worry about child’s survival
Concerned about meeting normal milestones; attend normal schools - compounded by norm life stressors - finances, job security; more concern - take lot more time off
Marriages and relationships trying keep healthy; worry about impact on other kids
Lot stress initially and during flare-up
Additional stressors

Answer 21

Concurrent stresses within the family

Question 22

Behaviors aimed at reducing tension
2 main behaviors: approachment/avoidance
Approachment - accepting of diagnosis, ask questions, understand impact child long-term, reach out for help; want to see
Avoidance - not trust diagnosis; unrealistic on how child impacted by diagnosis; multiple provider feedback; hop providers for diff diagnosis; not ask questions and not involved, think child ok and nothing wrong; pay attention for

Answer 22

Coping mechanisms

Question 23

Recognizing, promoting, and enhancing competence with parents
Imp - child d/c - parents responsible for them and caring for them
Easy for nurses to care for them - need parents involved - empowered and fully capable of caring of child

Answer 23

Parental empowerment

Question 24

First diagnosed - wide range coping mechanisms
Parental response to dx of chronic illness/disability - typ order going through; sometimes last longer; job help fam; therapy involved; child life specialist

Answer 24

Assisting fam members in managing feelings

Question 25

Shock and denial
Adjustment
Reintegration and acknowledgment
Establishing a support system

Answer 25

Parental response to dx of chronic illness/disability - typ order going through; sometimes last longer; job help fam; therapy involved; child life specialist

Question 26

First given diagnosis
Avoidance behavior
Physician shopping; delay consent for treatment
Act like nothing going on

Answer 26

Shock and denial

Question 27

Understand is real and is diagnosis

Answer 27

Adjustment

Question 28

Key
Good for social media - outlet and ability have relationships with parents with others on social media; able have support sys and relationships

Answer 28

Establishing a support system

Question 29

Greatly depends on age, developmental level, temperament, available coping mechanisms, diagnosis received
Developmental aspects
Coping mechanisms
Responses to parental behavior

Answer 29

The child with a chronic/complex condition

Question 30

Ways cope with somethings going through and how overcome them
Interventions:

Answer 30

Developmental aspects

Question 31

Infant - developing trust - in hospital: multiple caregivers; may not be able to be held; encourage parents be involved; hands on for cares and kangaroo care
Toddler - independence - do little things for self; can feed self and go to bathroom and dress self; take step back
School-age - wins and compete - encourage go to school if possible - opportunities to compete; encourage special olympics

Answer 31

Interventions: - Developmental aspects

Question 32

Hopefulness
Health education and self-care

Answer 32

Coping mechanisms

Question 33

Higher levels hope higher levels resiliency and ability see obstacles as opportunities - if help encourage and give kids hopefulness help them

Answer 33

Hopefulness - Coping mechanisms

Question 34

More edu kid about diagnosis and promote self-care more hopefulness have and independence have
Child get older need involve them

Answer 34

Health education and self-care - Coping mechanisms

Question 35

Tread lightly on as nurses esp when discuss with parents; how parents react to diagnosis and suggestions impact on how kids respond; parents hopeful and optimistic - kids follow and vice versa; negative will hurt child’s response; need have convo with them without children aroun

Answer 35

Responses to parental behavior

Question 36

Educate parents how care for child with specific illness
Activities of daily living
Safe transportation
Primary health care

Answer 36

Educating about the disorder and gen health care

Question 37

How meet needs of child
Possible differences in nutritional requirements - how change diet; how teach overcome some comps and avoid the comps
Make parents comfy and empower them

Answer 37

Activities of daily living

Question 38

How move kids if in wheelchair or not sit normally in carseat
How adjust car/seat to fit properly to ensure safe
Modification regarding car safety

Answer 38

Safe transportation

Question 39

Hearing, vision, dental, immunizations - all extremely imp for kids - can be overlooked when focused on chronic illness
All the usual health care
Communication in an emergency
Parents need have well-versed communication on what is going on with child, med on, illness child has, how impacts treatment child receives

Answer 39

Primary health care

Question 40

Still getting Basic trust, experiences of separation from parents, beginning experience independence - teach independence skills

Answer 40

Early childhood - Promoting normal development

Question 41

Industry (do things for self and master things)/activity (active as possible and involved; not hold them back with fear getting hurt - norm childhood experiences)

Answer 41

School age - Promoting normal development

Question 42

Developing independence/autonomy - going through puberty; many delayed and same ?s about sexuality: how envision self as adult

Answer 42

Adolescence - Promoting normal development

Question 43

Infant - not understand it and understand as permanent; nothing do for their POV
Toddler - very egocentric; not understand concept of death; think as long nap; most impacted by change in routine
Preschooler - starting learn about concept of death; think they caused something: thoughts and actions caused illness/death; cause things from thoughts alone; not think as fully permanent esp as younger preschooler and is reversible
School Age - still believe thoughts and actions caused it at younger age; older age: not their fault - not something did; respond well to logical situations; respond well to discussions; tend personify death; 9-10 adult understanding and concept of death: inevitable, universal, irreversible
Adolescent - complete understanding of death and dying; inevitable, universal, irreversible
Which group struggles the most with coping related to their impending death?

Answer 43

Child’s perspective of death

Question 44

adolescent/teenager - most difficulty; at point in life when decide who are in world; if telling them no longer survive and pass away - no longer know who are and impact have on future

Answer 44

Which group struggles the most with coping related to their impending death?

Question 45

Principles of palliative care
Decision-making at end of life
Treatment options for terminally ill children

Answer 45

Perspectives on care of children at end of life

Question 46

Focuses on optimal symptom managment, helping families align medical intervention with goals for child, assisting with complex decision making and supporting fams
Help with what if fams esp with QOL concerns begin - not used hasten death but for optimal pain and symptom management
Palliative care - begin time diagnosis; begin throughout tragectory of illness
Maximize QOL as defined by parent and kid
Pain and symptom management

Answer 46

Principles of palliative care

Question 47

Ethical considerations
Physicians, health care team
Parents
The dying child

Answer 47

Decision-making at end of life

Question 48

Lots
Euthanasia; assisted suicide
Within code of ethics - not support active intent - end person’s life; not illegal to have assisted suicide; can help with symptom management and pain with dying

Answer 48

Ethical considerations

Question 49

Make end of life decision; hopefully agreed upon decision
Follow orders - DNR; make sure everyone aware of an order

Answer 49

Physicians, health care team

Question 50

Large say and how want things as much as possible order things esp with dying child and where take place

Answer 50

Parents

Question 51

With parents - decide where take place
Hospital
Home care nurse present
Hospice

Answer 51

Treatment options for terminally ill children

Question 52

Entering terminal phase of illness faced with common fears
Fear of pain and suffering
Fear of dying alone or of not being present when the child dies
Fear of actual death

Answer 52

Nursing care of the child and fam at end of life

Question 53

Pain and symptom management
Pain control should be highest priority; children not dosed as should be and underdosed; imp advocate for pt if need more pain med
Some kids if in hospital for awhile - tolerant to pain meds so need up dose; no max dose to give control at end of life; treat pain until comfy
Parents’ and siblings’ need for education and support - child treated at home adequately educate parents (meds, when need call for help - OD or not enough); siblings: common feel isolated and resentful, nurse help fam identify ways for siblings to be involved in care, love helping and participating and impacting, want feel helping sibling, involve in process, not hide from them, also losing that sibling and need be involved as well, consider age and what best for them

Answer 53

Fear of pain and suffering

Question 54

Common
Reassure parents and follow-through that if major changes that call parent
If parent not there that you will be with them and child will not be alone

Answer 54

Fear of dying alone or of not being present when the child dies

Question 55

Diff options for kids
Home deaths - kids or fam may choose pass away peacefully but then change mind and totally fine
Hospital deaths
Hospice
List physical signs of approaching death-

Answer 55

Fear of actual death

Question 56

offer education on process of dying on what see
Senses fade; last sense lose is hearing; cont talk to children
Confused
Lose consciousness
Slurred speech
Muscle weakness
Loss of bowel and bladder control
Decreased appetite and thirst
Difficulty swallowing
Changes in respiratory patterns - Cheyne-Stokes (periods apnea) - can make parents anxious
More edu help alleviate fears

Answer 56

List physical signs of approaching death-

Question 57

Grief: A process
Highly individualized
Parental grief
Sibling grief

Answer 57

Grief and mourning

Question 58

One of hardest types of griefs; never expect lose or bury a child; this type of loss very unimaginable and hard for parents
Anticipatory grief
Complicated grief
Chronic grief
Shadow grief

Answer 58

Parental grief

Question 59

Given diagnosis that child’s condition terminal and not survival
While child alive and while until pass, do start grieving because know inevitable and coming

Answer 59

Anticipatory grief

Question 60

Seen after year/so after child passed; intrusive thoughts
Extremely depressed; still have denial, anger, sleep disturbances; pay attention to

Answer 60

Complicated grief

Question 61

Expect with often
Long-lasting

Answer 61

Chronic grief

Question 62

Hardest types of grief
When parent has seen child’s friends make milestones but child never gets to do that brings back all emotions - brings back the what if

Answer 62

Shadow grief

Question 63

Grieves that loss
Depending on age; can blame themself even tho nothing do with what they did; imp receive appropriate type of therapy

Answer 63

Sibling grief

Question 64

Most stressful aspect of nursing
Response similar to that of family members
Self-care measures
Attend funeral service

Answer 64

Nurses’ reactions to caring for dying children

Question 65

Losing pt esp child not lived full life hard; losing child hard; not get to mourn like parents at that time; responsibility care for parents and emotions and what they are going through - find line between what is appropriate and inappropriate
Remember take care of self and take step back

Answer 65

Most stressful aspect of nursing

Question 66

Appropriate if fam ask to be there; built rapport with and often do and is ok to go

Answer 66

Attend funeral service