Chapter 25: Adapting to chronic illness & supporting the family unit

Question 1

chronic illness

Answer 1

illness that has the potential to last throughout the person’s life
- frequency and severity of symptoms may change over time

Question 2

exacerbation

Answer 2

aggravation of symptoms or the relapse of an acute phase

Question 3

chronic illness

Answer 3

• illness for more than 3 months of a year
• causes hospitalizations
• causes increased medical needs
• has phases of “quiet” and “active” periods
• goal of care: provide as normal as possible a childhood

Question 4

children need — and ___ to live their lives as normally as possible and to achieve developmental milestones

Answer 4

independence; support

Question 5

minimize ____ _____ and hospitalizations by managing health issues to maximize autonomy and normalcy

Answer 5

illnes exacerbations

Question 6

chronic condition is harder to control when children are…

Answer 6

distressed, anxious, and unhappy

Question 7

areas to assess w/ chronic illness

Answer 7

• poor sleeping habits and loss of sleep
• fatigue
• poor eating habits
• emotional distress, mood swings, fear and anger
• talk about death
• not cooperating w/ the medical treatment, nursing care, and illness self management plans

Question 8

chronic illnesses by body system

Answer 8

• cardiovascular
• neurologic
• respiratory
• renal
• hematologic
• immune
• oncologic
• GI
• dermatologic
• endocrine

Question 9

establishment of a therapeutic relationship

Answer 9

• parents may feel blame, guilt, anger, despair, and anguish
• attempt to develop a therapeutic relationship
• family needs an effective listener
• therapeutic relationship challenging if parents blame the healthcare system for the child’s condition
• provide info about support groups, organizations, and educational books, websites, and videotapes
• discuss prognosis only AFTER the physician has discussed it
• understanding cultural variations

Question 10

components of symptom management

Answer 10

• symptoms experience itself
• strategies used to manage the symptoms
• outcomes influenced by the symptoms

Question 11

discomfort or pain

Answer 11

• assessment includes the character, location, quality and intensity of pain
• behavioral distress scales
• visual tools
• sensitized

Question 12

fatigue or extreme tiredness

Answer 12

• fatigue is a sensation of tiredness
• assessed using physiological indicators, psychological indicators, and self reports
• associated w/ anemia, pain, exhaustion, sleep deprivation, and prolonged hospitalization

Question 13

nausea or vomiting

Answer 13

• nausea is a sensory experience
• associated w/ meds, antineoplastic drugs, procedures, and other stimuli

Question 14

emotional distress or anxiety

Answer 14

• separation from home, family, siblings, friends, pets, and familiar surrounding can cause distress

Question 15

sleep disorders

Answer 15

interrupted sleep, poor quality sleep and shortened sleep

Question 16

dyspnea or difficulty breathing

Answer 16

• feeling of not being able to effectively breathe, catch one’s breath, or acquire enough air
• physiological components but also emotional components

Question 17

changes in bowel or bladder function

Answer 17

constipation: poor diet, changes in diet, reduced fluid intake, or poor bowel habits

Question 18

home care

Answer 18

• sense of control and familiarity
• family must have the skills to provide all aspects of care
• support the technology dependent child
• family needs to feel comfortable w/ care and know how and when to respond to an emergency at home

Question 19

hospitalizations and chronically ill children

Answer 19

• may require hospitalization as the condition moves from stable to an acute episode of complications
• family must have a list of medications and treatments; can describe medical history and previous hospitalizations

Question 20

day respite centers

Answer 20

• organizations or healthcare centers where a chronically ill child or a technology dependent child can spend time safely w/ knowledgeable and skilled hcp

Question 21

long term care facilities

Answer 21

• extended care for chronically ill child

Question 22

pediatric hospice care

Answer 22

• comfort a child
• provide cre at the end of life

Question 23

assisting children in coping w/ chronic illness

Answer 23

• children receives cues from their environment that they have a chronic illness
• child understands not being measured by response to illness —> valued as separate from chronic illness state
• perceive the past as a place before medical treatments

Question 24

provide emotional support to children in coping w/ chronic illness

Answer 24

• provide routine
• acknowledge that emotional turmoil is normal, expected, and acceptable
• show an understanding of child’s distress
• provide a reward system
• make sure all adults in the child’s life understand the severity of the illness

Question 25

protecting emotional health - assisting children coping w/ chronic illness

Answer 25

- treat no different than siblings - seeing other children with the illness can be distressing

Question 26

depression and chronic illness

Answer 26

- depression should be viewed as a complication - adolescent girls have a greater risk of developing depression than adolescent boys w/ a chronic illness

Question 27

assisting children in coping w/ chronic illness when another child dies

Answer 27

- develop feelings of vulnerability - may become afraid of separations from their parents and family

Question 28

the effect of chronic illness on the family: parents

Answer 28

- increased stress, worry, and burden of care for the child - other children may feel they are not getting enough support or attention from their parents - whole family may suffer - may need respite care and assistance - causes disruption in family life

Question 29

prolonged hospitalization

Answer 29

- hospitalization can be stressful - can be traumatic for the child - the longer the hospital stay, the more discomfort for the family and child

Question 30

the effect of a chronic disease on parenting

Answer 30

- continues even during periods of exacerbation and hospitalization - child still needs discipline and boundaries when ill - teach about the illness according to developmental level - may create unfair expectations of the healthy children - need to acknowledge that they need help - carve out time to be together - set limits and expectations of behavior

Question 31

the effect of a chronic disease on siblings

Answer 31

- are required to adjust to life changes - feel left out, left behind, and without opportunities to be the center of attention - preschool age siblings through magical thinking may feel they caused the illness - some younger siblings may wish they were sick

Question 32

siblings' emotions

Answer 32

scared resentful angry embarassed

Question 33

the effect of a chronic disease on siblings can case the development of...

Answer 33

- empathy for others - dependability - patience - supportiveness to others - loyalty - participation in national organizations and support groups is

Question 34

siblings' effect of readmission

Answer 34

- hospitalization for complications - ensure the family feels comfortable, empowered, and ready to take the child home and care for the child independently

Question 35

child w/ special needs

Answer 35

- multiple impairments, dependence on technology, significant physical, sensory, or cognitive disabilities, or a combination of these - describes a child with a chronic illness needing daily care, medications, treatments, or procedures - care needs similar to a child w/ a chronic illness