CH 19 | Family-Centered Care of the Child with Chronic Illness or Disability

Parents in thriving families: a. stress normalcy and feel confident. b. have an enduring management style. c. feel competent but burdened. d. feel dominated by the illness.

a. stress normalcy and feel confident.

A condition that interferes with daily functioning for more than 3 months

chronic illness

A disability that has existed since birth but is not necessarily hereditary

congenital disability

What are some parental role stresors identified as having an impact on the marriage?

- one parent taking on burden of home care - financial burden - fear of DC dying - pressure from relatives - hereditary nature of the illness - fear of pregnancy

Describe at least two effective methods of support that would help families manage their emotional response to the diagnosis of a disability or chronic illness in their child.

Facilitate support from professionals; encourage expression of emotions; describe the behavior; give evidence of understanding; give evidence of caring; help parents focus on feelings; facilitate parentto-parent support

List at least five characteristics of parental overprotection.

Makes many sacrifices; helps the child even when the child is capable; provides inconsistent discipline; is dictatorial; hovers and overdoes praise; protects the child from every discomfort; restricts play; denies the child opportunities for growth; sets goals too high or too low; monopolizes the child's time

Describe at least three guidelines for the nurse to use when providing ongoing information to the family with a disabled or chronically ill child.

Share complete information. Share information in manageable doses. Be sensitive to parents' reactions. Listen carefully. Provide technical information in understandable terms. Offer to share information. Provide information about resources

T/F The earlier the onset of a limiting illness, the better the individual is able to adjust to it.

T later onset involves additional grieving of loss while adapting

Which one of the following diseases is the most common chronic childhood illness? a. Asthma b. Congenital heart disease c. Cancer d. Spina bifida

a. Asthma

The program formerly known as Crippled Children's Services, which provides financial assistance for children with many disabling conditions, is now called: a. Programs for Children with Special Needs. b. National Information Center for Children and Youth with Disabilities. c. Association for the Care of Children's Health. d. Alliance for Health, Physical Education, Recreation and Dance.

a. Programs for Children with Special Needs.

Hope in the chronically ill child's family would be considered: a. a way to absorb stress in a manageable way. b. negative coping with a serious diagnosis. c. a maladaptive mechanism for dealing with the inevitable death. d. to have the same meaning for the nurse and the family.

a. a way to absorb stress in a manageable way.

The effectiveness of the family's support system depends on the: a. ability to match the best source of support for each need. b. diversity of the family's social network. c. extended family and their availability. d. extended family and their resources.

a. ability to match the best source of support for each need. marital relationship primary source of support; best predictor of coping B/adjustment

The purpose of the initial assessment of coping mechanisms in a child who is disabled is for the nurse to: a. determine help that the family may want or need. b. establish rapport with the child and family. c. provide care from stage to stage of development. d. provide care from phase to phase of the disorder.

a. determine help that the family may want or need. well-adapted children gradually learn to accept their phys limitations normalization of DC's life to alleviate feeling different (don't confine play to bedroom, encourage anything that DC perceives as attractive, don't overprotect) hopefulness establishing realistic future goals (gradual process if severe disability); realistic vocations if applicable; financial planning for entirely dependent DC, residential placement

The individualized family service plan (IFSP) is: a. developed jointly by families and professionals. b. a comprehensive insurance plan for families with a disabled child. c. developed by a team of professionals for the disabled child. d. a plan that finances direct services for the disabled child.

a. developed jointly by families and professionals. consists of info relating to DC's current dvp level, family needs/strengths to improve dvp, services reqd, main outcomes for child/family allows nurses to ID/assess children at risk for disability

Nurses who provide support to parents of a child with a disability should develop an attitude that has all of the following characteristics except the belief that: a. every person has burdens to bear. b. trust is a foundation for good communication. c. parents are experts about their own child. d. parents and professionals are colleagues.

a. every person has burdens to bear.

The adjustment of the family to caring for and living with the child with special needs is greatly influenced by the: a. functional burden. b. severity of the condition. c. complexity of the care. d. resources required for care.

a. functional burden.

Out-of-home placement of a child with a disability: a. may be the best option if the integrity of the family unit is in jeopardy. b. occurs if coping strategies are not employed within the home. c. is becoming increasingly difficult to accomplish. d. demonstrates that the family is maladjusted

a. may be the best option if the integrity of the family unit is in jeopardy. may occur if coping strategies are not employed within the home increasingly difficult to secure

In adjusting to a child's chronic illness, the father is more likely than the mother to: a. suffer from isolation. b. use an emotional release. c. perceive he is coping poorly. d. view the child's temperament as influential

a. suffer from isolation. - lack of social support, compounded by HC team that disregards dad parenting can become unrewarding to parent, making them overlook child's personal comfort and failure to offer DC any praise - edu on what is reasonable to expect from child, help ID strengths, praise parent, help finding respite care parental role inequities may dvp; divide tasks according to comfort/skill level but involve both in making decisions so that burden is not on one parent; less skillful parent may be criticized when they do try to hel

Which age does disability pose a challenge/risk? Self-concept and body image

adolescence independence attainment may be difficult if dependent on others for care (often want to take full control over care), causing family strains and tendency toward rebellion via noncompliance and increased risk taking give greater role in teens own tx (scheduling, signing an assent to consent, view test results), openly discus sexual issues

Approach/Avoidance? A father asks the nurse to explain a diagnosis again.

approach

Approach/Avoidance? A father stops at a friend's house and talks about his child's poor prognosis.

approach

Approach/Avoidance? A mother asks her neighbor to watch her older child for a few hours while she is at the clinic.

approach

Approach/Avoidance? A mother tells the nurse that she is afraid to tell her child about his or her poor prognosis.

approach

Approach/Avoidance? A father's alcohol use increases to the point of being excessive.

avoidance

Approach/Avoidance? A mother begins to cry in the nurse's office at school, saying that she always gets depressed at the beginning of the new year.

avoidance

Approach/Avoidance? A mother never carries a glucose source for her toddler who takes insulin for type 1 diabetes mellitus

avoidance

Emphasizing the characteristics that the disabled child has in common with other children, rather than viewing the disabilities within a pathologic framework, best describes which one of the following approaches to care of the disabled child? a. Chronologic b. Developmental

b. Developmental d/t where children are at developmentally to understand their response to chronic illnesss

Which one of the following strategies would be inappropriate for the nurse to use when teaching families with children who are disabled? a. Give information that meets the child's current needs. b. Give as much information as possible at the time of diagnosis. c. Answer the child's questions openly. d. Repeat information as often as needed.

b. Give as much information as possible at the time of diagnosis.

Which of the following is not necessarily a criterion to consider when selecting parents to offer support to other parents of children with disabilities? a. The parents should possess advocacy and problem-solving skills. b. The parents should have a child with the same diagnosis. c. The parents should have a nonjudgmental approach to problem solving. d. The parents should be good listeners

b. The parents should have a child with the same diagnosis. should be veterans; parent-self help groups beneficial

Which one of the following characteristics would most likely indicate that a sibling of a child with a disability is having difficulty? a. Sharing b. Withdrawal c. Competing d. Compromising

b. Withdrawal

When initially informing the family of a child's serious condition, the nurse should: a. explain that, with time, everything will be all right. b. accept any emotional reaction without judgment. c. decide when and how to tell the child about the diagnosis. d. use therapeutic touch to stimulate free expression of feelings.

b. accept any emotional reaction without judgment. families often react with guilt, denial, or anger; promote strengths and dvp potential during care conference promote open comm b/w DC and fam in telling the child, parents often use euphemisms to protect DC

Corbin and Strauss's chronic illness trajectory model is based on the idea that the: a. family understands the meaning of the illness situation. b. course of the illness changes over time. c. family member roles do not change with illness. d. coping patterns for the illness can be learned.

b. course of the illness changes over time.

The child who is disabled tends to develop appropriate independence and achievement when the parents: a. protect the child from all dangers. b. establish reasonable limits. c. emphasize the child's limits. d. isolate the child to avoid peer rejection

b. establish reasonable limits.

A strategy that is recommended to promote normalization in children with special needs would be to: a. avoid discussing issues of appearance in the adolescent. b. focus on the areas of ability and competence. c. establish special family rules for the child with a disability. d. allow children with special needs to make all decisions about their care.

b. focus on the areas of ability and competence. child redefine illness as they grow

A strategy for the nurse to encourage parents to express their feelings about the diagnosis of a chronic illness in their child would be to: a. tell them that what they are going through is completely understandable. b. help them focus on their emotions. c. explain the policies and procedures regarding visiting hours. d. review the disease process with them

b. help them focus on their emotions.

Which of the following statements about the time of diagnosis is false? a. Parents may not remember all that is said. b. Parents remember the tone of the communication. c. Parents cannot sense the tone of the communication. d. Parents may not hear all that is said.

c. Parents cannot sense the tone of the communication. most prefer simple, clear explanation of the dx (what is/not known about dx, prognosis, advice, Q&A, sympathy) assess comprehension

The nurse's response to anger in parents of a disabled child should be: a. reciprocal anger. b. disapproval. c. acceptance. d. avoidance

c. acceptance.

If a family member reacts to the diagnosis of a chronic illness with denial, the nurse would recognize that denial is: a. an abnormal response to grieving this type of loss. b. preventing treatment and rehabilitation. c. necessary to prevent disintegration. d. necessary for the child's optimum development.

c. necessary to prevent disintegration. * physician shopping, attributing sx to minor condition, refusing dx results, delaying tx, acting optimistic, refusing to tell anyone, insist everyone is lying, denying hospital admission reason, asking no questions respect as short-term responses

To help siblings prepare for the changes in the disabled child, the nurse should: a. wait until questions are asked, since siblings often desire little or no involvement. b. recognize that permitting sibling hospital visits will increase stress in the whole family. c. reassure siblings that they will continue to be involved in the care whenever possible. d. help the sibling realize that the disabled child needs more parental attention

c. reassure siblings that they will continue to be involved in the care whenever possible. - helps avoid jealousy and anger what siblings piece together/overhear often worse than the truth; imagine gruesome things siblings must be prepared for changes in DC and informed they can visit sibling regularly scheduled time for phone talk with parents if they have to be absent for DC

The adolescent patient with a disability or chronic illness should be transferred to an adult provider: a. when the patient reaches the age of 18 years. b. when the patient reaches the age of 16 years. c. when the patient knows about the chronic condition and is prepared for the transition. d. it is best not to change providers.

c. when the patient knows about the chronic condition and is prepared for the transition. AGE AIN"T NOTHING BUT A NUMBER readiness to assume tx management responsibility, prior tx involvement, demosntration of responsible judgjment, coping ability nurse supports by presenting idea, assessing DC/fam readiness

Which of the following is an example of how chronic illness and disability affect children's health, functional status, and family functioning? a. Families do not bring the disabled child for health care often. b. Siblings' routines are completely separated from those of the disabled child. c. Parents are usually not able to meet the child's normal developmental needs. d. Disabled children are often absent from school.

d. Disabled children are often absent from school. more likely to be victim of emo/sexual abuse, have B problems, drop out of school, be involved in juvie well sibling often neglected

Which one of the following statements is false about family members' perceptions of a child's illness or disability? a. Children may interpret the illness or disability as a punishment. b. Family members are usually shocked to learn that their child has a serious illness or disability. c. Parents may interpret the illness or disability as a punishment. d. Family members usually have no knowledge about the disorder when they learn their child has it

d. Family members usually have no knowledge about the disorder when they learn their child has it * may interpret as inherited or d/t prego B diagnosis often experienced as crisis, whether expected or not assess previous knowledge/experience with the chronic disease and correct any falacies reveal any imagined causes so guilt/blame/anger can be overcome

Which one of the following stressors can usually be predicted for a child with special needs? a. The approximate cost of the yearly medical bills b. The future needs for residential care c. The types of schooling and vocational training that will be needed d. The stress of developmental milestones and the start of school

d. The stress of developmental milestones and the start of school

Nursing interventions that can encourage and empower families include: a. fostering normalization. b. teaching coping skills. c. assisting to define social support networks. d. all of the above.

d. all of the above.

Research indicates that, compared with their peers, siblings of a child with a disability exhibit: a. greater independence. b. more maturity. c. an increased sense of responsibility. d. all of the above.

d. all of the above. younger children become more irritable/withdrawn; older act out often a decrease in normal family activities, personal items, and attn for the sibling may feel unappreciated for the added responsibilities

When the parents of a child with special needs experience chronic sorrow, the process: a. of grief is pronounced and self-limiting. b. involves social reintegration after grieving. c. is characterized by realistic expectations. d. is interspersed with periods of intensified grief.

d. is interspersed with periods of intensified grief. especially on dates of significant external events

A goal that would be considered inappropriate for family-centered care would be to: a. maintain family routine in the hospital. b. empower the family members. c. support the family during stressful times. d. maintain a high level of professional control.

d. maintain a high level of professional control. * involvement of family in decisions about care, they are ultimate care experts respect family/indiv strengths foster family competence/confidence empower family to advocate for the child if fam not in hospital, maintain routines

Parents who provide adequate physical care but detach themselves emotionally from the child characterizes the type of parental reaction known as: a. overprotection. b. denial. c. gradual acceptance. d. rejection.

d. rejection. - provide adequate phys care but nag/scold child overprotection caters to every desire denial; no condition exists or tries to overcompensat

When working with people of other cultural backgrounds who are caring for a child with a disability, the nurse should plan care that: a. uses a family member to translate into the family's language. b. incorporates the generalized culture of the United States. c. recognizes that culture fully defines how the child and family will react. d. remains consistent with the family's cultural practices when possible.

d. remains consistent with the family's cultural practices when possible.

In regard to denial, it is imperative that health professionals: a. actively attempt to remove the denial behaviors. b. repeatedly give blunt explanations. c. label denial as maladaptive. d. understand the concept of denial.

d. understand the concept of denial. often labeled as maladaptive and try to strip it away through repeated, blunt explanation of prognosis only maladaptive when it impedes recognition of tx/ rehabilitative goals

What are some complex care educational considerations?

describe limitations of disability on ADLs address nutritional problems, often overnutrition don't neglect basic child care, immunizations, injury prevention, dental health, etc med alert band in case of emergency

Any mental and/or physical disability that is manifested before age 22 years and is likely to continue indefinitely

developmental disability

A result of an impairment that could be physical, cognitive, mental, sensory, emotional developmental, or a combination of these

disability

Includes any systematic and sustained effort to assist young, disabled, and developmentally vulnerable children from birth to 3 years of age

early intervention PL 99-457 and IFSP |\

Goal of care is to minimize the manifestatioins of the illness and maximize the child's cognitive, physical, and psychosocial potential

family-centered care

The two most important environments for the child who is disabled or chronically ill are _______________ and __________________.

home and school is second most important setting

A system of care with the goals to normalize the child's life, lessen disruption on the family, and maximize the child's growth and development

home care priorities of family value as significant in the care of an ill child as they are in the care of healthy children

A loss or abnormality of a structure or function

impairment

Which age does disability pose a challenge/risk? Attachment

infancy disruption of routines and physical discomfort hinders ability to explore environment vis sensorimotor stimulation, impairing development of basic trust visible defect may hinder parental attachment as they mourn loss of perfect child; poor prognosis > emotional detachment utilize 24/7 visitation hours, limit # of caregivers

The process of integrating children with special needs into regular classrooms and child care centers

mainstreaming moving beyond family env into school is crucial dvp task of >5y.o.

Describe how an extended family member may be a source of stress to the parents of the disabled or chronically ill child.

may attempt to reassure parents that the child "will grow out of"" his/her disability, ask probing questions, stare, discrimination

Refers to establishing a normal pattern of living

normalization routines for disabled child should be fitted into the family's schedule, not vice versa

What two long-term coping strategies of familial adaption are related to a high level of family functioning?

parent's ability to assign illness meaning within an existing med/scientific or spiritual philosophy of life; things work out for the best ability to share burdens imposed by the illness intra-/extrafamilially

Which age does disability pose a challenge/risk? Social development

preschool age acquiring sense of initiative may lack energy/resources to engage in social relationships, may also be restricted to home difficulty building healthy sexual ID/body image b/c so linked with pain/disability (understanding confined to the senses) feeling of guilt for "causing" illness give clear/honest explanation of procedure (fear of body mutilation), provide activities for max motor dvp (may try to compensate with intellectual activities before dvp ready), maintain discipline, SIMPLE answers, imaginary play

What right does the law PL94-142 provide to disabled children?

requires states to ID/dx/teach/provide related services to disabled kids 3-21y.o.

Which age does disability pose a challenge/risk? Participation

school age lack of energy may prevent from extracurriculars, deeper understanding of differences may cause DC to hide illness, questioning of illness/meds/tx role play as "returning pupil", prepare class for returning student, involvement in affected/unaffected programs both helpful

What are the 5 distinct family management styles?

thriving, accommodating, enduring, struggling, and floundering thriving and accommodating see child as "normal", parents confident in ability to manage, children see themselves as "healthy" - accommodating are a bit more negative and are more compliant enduring see illness as a burden; DC is tragic figure whose life chances have been ruined - protective struggling have conflict over how to best manage condition, less support from each other floundering is overruled by confusion on best management; negatively viewed, child is tragic figure, burden/difficult

Which age does disability pose a challenge/risk? Mobility

toddlerhood language and mobility is primary tool for gaining sense of autonomy; helplessness may result from incapacitation mastered dvp tasks often easily lost during suffering of illness exacerbation; B regression attachment to parent allows for greater ability to withstand stress, but hospitalization impedes process establish routines in hospital, bring comfort toys (see hospital as punishment)