Chapter 21: Caring for a Child with a Disability

Question 1

Emotional Concerns

Answer 1

• distressing because of the disruption of normal routine, the conveyance of continuous “bad news” or prognostics, the reconfirmation of future emotional and physical concerns, and the awareness of financial implications the diagnosis and treatment provoke
• nurse can help the family access community resources that can provide ongoing emotional support
• can show parents on to obtain health insurance for their child

Question 2

Developmental Conerns

Answer 2

-because of constant medical and surgical interventions, the child may demonstrate either signs of regression to more immature behaviors or surprising evidence of “maturity beyond their years”

Question 3

Physical Concerns

Answer 3

-child with a disability undergoing surgery (especially at younger age), may experience rapid fluid and electrolyte changes; these conditions may require intensive care procedures that are worrisome to parents and often painful for children
>children with severe congenital heart problems face a lifetime of corrective procedures to augment initial surgeries or pharmacological therapies that consume time, energy, and finances
-both parent and child need to learn physical self-care techniques, such as diabetes or anticoagulation monitoring
>abnormalities can affect several body systems so visits must be made to several different medical specialists who may require multiple pharmaceutical regimens

Question 4

Caregiver Fatigue

Answer 4

-taking care of a child with disability takes a toll on the entire family
-respite care developed
-most disabilities in childhood result in multiple visits to clinics, hospitals, or rehab centers= disrupting normal activity and sleep patterns
-it requires more energy for a disabled child to perform even the simplest of tasks than it does for a healthy kid; these kids have extra requirements for stamina, calories, vitamins, minerals, and protein to accomplish normal daily activities, let alone learning developmentally appropriate mental skills
-these children need additional sleep but may have more trouble getting enough sleep if the demands of their care interfere with a normal sleep pattern
>all of these factors contribute to caregiver fatigue

Question 5

Respite care

Answer 5

developed in response to the needs of parents of extremely disabled children to give short-term relief from the 24-hour surveillance and care often required in cases of severe disability

Question 6

Resiliency

Answer 6

-resiliency theory defines the protective factors in families, schools, and communities that exist in the lives of children
>process of adapting well in the face of adversity, trauma, tragedy, threats, or significant sources of stress
-four common attributes of resilient children include social competence, problem solving skills, autonomy, and a sense of purpose and future
>nurse can help parents and children develop resiliency and positive self-esteem by fostering a mix of love and nurturing in the face of overwhelming stressors
>emotional security and maturity provide the foundation for resiliency

Question 7

Caring for the Child with a Disability

Answer 7

• maintain a respectful attitude toward the parent and the child
• assess the child’s communication strategies and incorporate them in the nursing plan of care
• listen carefully to the parent’s concerns, realizing that parents often “know their child best”
• evaluate how social and health-care agencies can assist parents and the child to manage the disability–financial, medical, and community services
• assess the child’s skills for coping with pain or fatigue
• evaluate the need for respite care and reliable community resource providers