Pediatric Chronic Illness, Disability, and End-of-Life Care Flashcards
Increasing viability of preterm infants
Portability of life-sustaining technology
Life-extending treatments
Rise in the numbers of children with complex and chronic diseases
Scope of the prob
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
Increasing viability of preterm infants
Can send baby home that has trach; ability give O2 at home
Portability of life-sustaining technology
Prematurity and adv in medical care
Able do surgery and give meds - increase lifespan
Rise in the numbers of children with complex and chronic diseases
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
Chronic or complex diseases
Developmental focus
Family-centered care
Family—Health care provider communication
Establishing a therapeutic relationship
The role of culture
Shared decision-making
“Normalization”
Trends in care
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
Developmental focus
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
Family-centered care
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
Family—Health care provider communication
Build: being there; showing empathy; listen
Ask question and not know answer, find it out
Establishing a therapeutic relationship
How fam func
Not assume something on how looks
Ask what imp to them and how view this better for therapeutic relationship
The role of culture
Get them involved
Explain options and decisions and why doing something
Shared decision-making
Helping fam find what new normal is - how have new fam life with chronic illness that may require lot additional help
“Normalization”
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
The family of the child with chronic/complex conditions
Parental roles
Mother-father differences
Single-parent families
Parents - Impact of the child’s chronic illness
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
Parental roles
Grieve differently; big point contention
Very hard on marriage - often divorce
Do with stress and diff mourning process/coping skills have
Mother-father differences
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
Single-parent families
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
Siblings - Impact of the child’s chronic illness
Concurrent stresses within the family
Coping mechanisms
Parental empowerment
Coping with ongoing stress and periodic crises:
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
Concurrent stresses within the family
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
Coping mechanisms
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
Parental empowerment
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
Assisting fam members in managing feelings
Shock and denial
Adjustment
Reintegration and acknowledgment
Establishing a support system
Parental response to dx of chronic illness/disability - typ order going through; sometimes last longer; job help fam; therapy involved; child life specialist
First given diagnosis
Avoidance behavior
Physician shopping; delay consent for treatment
Act like nothing going on
Shock and denial
Understand is real and is diagnosis
Adjustment
Key
Good for social media - outlet and ability have relationships with parents with others on social media; able have support sys and relationships
Establishing a support system
Greatly depends on age, developmental level, temperament, available coping mechanisms, diagnosis received
Developmental aspects
Coping mechanisms
Responses to parental behavior
The child with a chronic/complex condition
Ways cope with somethings going through and how overcome them
Interventions:
Developmental aspects
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
Interventions: - Developmental aspects
Hopefulness
Health education and self-care
Coping mechanisms
Higher levels hope higher levels resiliency and ability see obstacles as opportunities - if help encourage and give kids hopefulness help them
Hopefulness - Coping mechanisms
More edu kid about diagnosis and promote self-care more hopefulness have and independence have
Child get older need involve them
Health education and self-care - Coping mechanisms
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
Responses to parental behavior
Educate parents how care for child with specific illness
Activities of daily living
Safe transportation
Primary health care
Educating about the disorder and gen health care
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
Activities of daily living
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
Safe transportation
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
Primary health care
Still getting Basic trust, experiences of separation from parents, beginning experience independence - teach independence skills
Early childhood - Promoting normal development
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)
School age - Promoting normal development
Developing independence/autonomy - going through puberty; many delayed and same ?s about sexuality: how envision self as adult
Adolescence - Promoting normal development
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?
Child’s perspective of death
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
Which group struggles the most with coping related to their impending death?
Principles of palliative care
Decision-making at end of life
Treatment options for terminally ill children
Perspectives on care of children at end of life
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
Principles of palliative care
Ethical considerations
Physicians, health care team
Parents
The dying child
Decision-making at end of life
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
Ethical considerations
Make end of life decision; hopefully agreed upon decision
Follow orders - DNR; make sure everyone aware of an order
Physicians, health care team
Large say and how want things as much as possible order things esp with dying child and where take place
Parents
With parents - decide where take place
Hospital
Home care nurse present
Hospice
Treatment options for terminally ill children
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
Nursing care of the child and fam at end of life
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
Fear of pain and suffering
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
Fear of dying alone or of not being present when the child dies
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-
Fear of actual death
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
List physical signs of approaching death-
Grief: A process
Highly individualized
Parental grief
Sibling grief
Grief and mourning
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
Parental grief
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
Anticipatory grief
Seen after year/so after child passed; intrusive thoughts
Extremely depressed; still have denial, anger, sleep disturbances; pay attention to
Complicated grief
Expect with often
Long-lasting
Chronic grief
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
Shadow grief
Grieves that loss
Depending on age; can blame themself even tho nothing do with what they did; imp receive appropriate type of therapy
Sibling grief
Most stressful aspect of nursing
Response similar to that of family members
Self-care measures
Attend funeral service
Nurses’ reactions to caring for dying children
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
Most stressful aspect of nursing
Appropriate if fam ask to be there; built rapport with and often do and is ok to go
Attend funeral service
