Chapter 25: Adapting to chronic illness & supporting the family unit Flashcards
chronic illness
illness that has the potential to last throughout the person’s life
- frequency and severity of symptoms may change over time
exacerbation
aggravation of symptoms or the relapse of an acute phase
chronic illness
- 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
children need — and ___ to live their lives as normally as possible and to achieve developmental milestones
independence; support
minimize ____ _____ and hospitalizations by managing health issues to maximize autonomy and normalcy
illnes exacerbations
chronic condition is harder to control when children are…
distressed, anxious, and unhappy
areas to assess w/ chronic illness
- 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
chronic illnesses by body system
- cardiovascular
- neurologic
- respiratory
- renal
- hematologic
- immune
- oncologic
- GI
- dermatologic
- endocrine
establishment of a therapeutic relationship
- 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
components of symptom management
- symptoms experience itself
- strategies used to manage the symptoms
- outcomes influenced by the symptoms
discomfort or pain
- assessment includes the character, location, quality and intensity of pain
- behavioral distress scales
- visual tools
- sensitized
fatigue or extreme tiredness
- 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
nausea or vomiting
- nausea is a sensory experience
- associated w/ meds, antineoplastic drugs, procedures, and other stimuli
emotional distress or anxiety
- separation from home, family, siblings, friends, pets, and familiar surrounding can cause distress
sleep disorders
interrupted sleep, poor quality sleep and shortened sleep
dyspnea or difficulty breathing
- feeling of not being able to effectively breathe, catch one’s breath, or acquire enough air
- physiological components but also emotional components
changes in bowel or bladder function
constipation: poor diet, changes in diet, reduced fluid intake, or poor bowel habits
home care
- 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
hospitalizations and chronically ill children
- 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
day respite centers
- organizations or healthcare centers where a chronically ill child or a technology dependent child can spend time safely w/ knowledgeable and skilled hcp
long term care facilities
- extended care for chronically ill child
pediatric hospice care
- comfort a child
- provide cre at the end of life
assisting children in coping w/ chronic illness
- 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
provide emotional support to children in coping w/ chronic illness
- 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
protecting emotional health - assisting children coping w/ chronic illness
- treat no different than siblings
- seeing other children with the illness can be distressing
depression and chronic illness
- depression should be viewed as a complication
- adolescent girls have a greater risk of developing depression than adolescent boys w/ a chronic illness
assisting children in coping w/ chronic illness when another child dies
- develop feelings of vulnerability
- may become afraid of separations from their parents and family
the effect of chronic illness on the family: parents
- 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
prolonged hospitalization
- hospitalization can be stressful
- can be traumatic for the child
- the longer the hospital stay, the more discomfort for the family and child
the effect of a chronic disease on parenting
- 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
the effect of a chronic disease on siblings
- 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
siblings’ emotions
scared
resentful
angry
embarassed
the effect of a chronic disease on siblings can case the development of…
- empathy for others
- dependability
- patience
- supportiveness to others
- loyalty
- participation in national organizations and support groups is
siblings’ effect of readmission
- hospitalization for complications
- ensure the family feels comfortable, empowered, and ready to take the child home and care for the child independently
child w/ special needs
- 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
