Chronically ill children: how families adjust

[Guest guest]

Chronically ill children: how families adjust

By Ramona T. Mercer, PhD, RN, FAAN

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Today increasing numbers of children are discharged from hospitals with

complex monitors, mechanical devices, or treatment regimens that require

families' constant vigilance and supportive care. Some chronic health

problems are diagnosed at birth; others may arise at any point during

childhood. Around 20 million American children and adolescents have chronic

diseases or disabilities.1

Caring for a chronically ill child requires families to adjust and reassess

their monetary and emotional resources. Nurses can help families adjust as

they learn to care for their chronically ill child.

The family's interaction changes when a child is diagnosed with a chronic

illness. Family members often experience shock and disbelief, and sometimes

denial when they learn a child has a chronic illness. Parents express and

experience their emotional distress differently; they may feel anxiety,

depression, guilt, paranoia, anger, irritability, helplessness, frustration,

and fear.1,2 Feelings of guilt, which are especially common when a disease

is genetically transmitted, can lead to overprotectiveness on the mother's

part and withdrawal on the father's part.2 A child's chronic illness can

disturb daily schedules and routines.2

Both parents worry about the child's future; they are fearful and uncertain

about the child's development and lifespan. Mothers report being stressed by

money worries, feeling worn out, not having enough time, and not having

agencies in the community to meet the child's needs. Fathers' major concerns

are about time spent alone with their spouse or partner, the child's health,

and having enough money to meet the family's needs.1

Both parents cope by analyzing the problem, keeping their feelings from

interfering with other aspects of their lives, and expressing their

emotions.1 Mothers tend to cope by using social activities, and fathers tend

to cope by using solitary activities and reasoning strategies.3,4,5 The

family copes by assigning meaning to the illness, calling on religious

beliefs, maintaining hope, and viewing the illness as a family challenge.6

Family adaptation

Family adaptation to chronic illness is an ongoing process that encompasses

several tasks. They include accepting the condition and managing it daily,

and meeting the normal developmental needs of the chronically ill child and

other family members. Other tasks include coping with ongoing stress and

crisis, helping family members manage feelings, educating others about the

chronic condition, and establishing a support system.7

Contrary to popular belief, divorce rates are not higher among families with

chronically ill children. Among 111 families with a child with hemophilia,

52 percent of the parents reported that their marriages were not influenced,

45 percent reported that they had grown closer to each other, and 4 percent

reported they had grown apart.2

Decision making

Making decisions about the chronically ill child's health care is an

important family responsibility. It is influenced by the context of the

illness and the experience of parents and children.8 Today most children

with chronic illness live into adulthood; the majority of ill children are

mildly or moderately affected. Thus, it's important to involve them in

decisions about their care and teach them to assume increasing

responsibility for their care as they mature.8 The American Academy of

Pediatrics' committee on bioethics recommends that children participate in

decisions appropriate to their development, provide agreement to care when

reasonable, and not be excluded from decision making without a persuasive

reason.9 Failing to involve children may damage their sense of self and

hinder their overall adaptation.8

More choices are available for some chronically ill children than others.

That difference in itself can affect the way families see the illness. For

example, in one study parents of children with cystic fibrosis felt that

there were few decisions they could make independently since the outcome of

decisions had serious consequences.8

In contrast, parents of children with scoliosis felt much more involved in

decision making, as did the children. The children were involved in

discussions about surgery, and some had complete control over accepting or

declining the option.8

A study of parents who had a child with diabetes or a life-threatening

illness uncovered three patterns of decision making: dependent, independent,

and collaborative.10 Parents had varying degrees of reliance in healthcare

professionals; they also had different expectations of their relationship

with healthcare providers and of the information that the provider would

communicate to them. These differences determined their decision-making

pattern.

Dependent decision makers tended to be optimistic and trusting about

interventions, rely passively on the professional, and present information

so that professionals could make all of the decisions.10

Independent decision makers saw health professionals as consultants whose

advice they could accept or reject; they sought information from multiple

sources and set the limits for care. For example, they put limits on

sacrifices the family would make to keep their child alive. Independent

decision makers were not actively involved initially, but expanded their

decision-making role as they learned more about the condition.10

Collaborative decision makers negotiated with health professionals about how

to best incorporate care regimens. These parents had developed areas of

expertise that were readily acknowledged by the professionals; the parents

used " tricks of the trade " they had learned through living with the illness

and professionals' help in solving problems. The parents also sought

information and multiple opinions about proposed procedures, by talking to

parents of a child who had already had the procedure, for example. 10

Family management styles

Each family has its own family management style (FMS). Researchers looking

at families with a child who had diabetes, juvenile rheumatoid arthritis,

renal disease, or asthma found differences in the way the families defined

the experience of the illness, managed goals, and handled consequences.

Family management styles are: thriving, accommodative, enduring, struggling,

or floundering.11

Thriving management style: In the thriving FMS, parents describe their

child, the illness, their parenting goals, and behaviors as " normal. "

Parents view the chronically ill children as normal; the children think they

are as healthy as their peers and take part in managing their treatments.

Parents are confident that the illness is manageable and that " life goes

on. " They use a proactive approach to management involving planning and

techniques they've developed to avoid problems or to deal with them if they

arise. There is no evidence of major negative consequences for the family.

The parents see themselves as responding to their situation as a couple.11

Accommodative management style: Although normalcy is also the dominant theme

for the accommodative FMS, some parents view their situation more negatively

than those in the thriving FMS, and others have greater difficulty managing

their child's chronic illness. The child may be viewed as a tragic victim

with fewer life chances, or the illness is seen as ominous in terms of its

seriousness and future complications. In turn, some of the ill children see

themselves as less healthy than their peers. Like parents with a thriving

FMS, most parents with an accommodative FMS have a proactive management

approach. But some focus on complying with physician orders and providing an

accurate account of the child's symptoms so that healthcare professionals

can make treatment decisions. Although the mother and father don't always

have the same approach or level of involvement in illness management, this

did not prove to be a strain for the couple.11

Enduring management style: The theme for families in the enduring FMS is

" difficulty " ; they view their situation negatively and invest much effort in

illness management. The child's future is viewed as irreparably compromised

as a result of the illness, and children in this FMS sometimes describe

themselves as less healthy than their peers. Since the child is viewed as a

tragic figure, parents emphasize protecting the child and restricting the

child's activities. Although parents in the enduring FMS are confident of

their abilities, they emphasize the effort required to follow the treatment

regimen. Although these parents tend to adopt a proactive management

approach, they describe the illness management as a burden. The illness is

at the foreground of their family life, and as such, affects them

negatively. Parents see themselves acting as individuals rather than as a

couple and seem resigned that their differing attitudes will not change.11

Struggling management style: " Parental conflict " is the overall theme of the

struggling FMS. Parents experience conflict in their views of the chronic

illness and their expectations of each other. Mothers view their situation

more negatively than fathers. Mothers tend to think that fathers are not

involved enough in the child's illness management and that fathers are

critical of their efforts. In contrast, fathers often express positive

themes, such as continuing to see the ill child as normal. Mothers often

dread the future and expect that the child's condition will worsen. Parents

do not perceive they are managing the illness as a couple. The children in

the struggling FMS emphasize how their illness limits their lives.11

Floundering management style: In the floundering FMS, confusion is the

underlying theme. Parents view the ill child as a problem child who has

created a difficult parenting situation or as a tragic figure. The parents

are uncertain about how to manage the illness, which they see as a hateful

restriction. They cannot adhere to the treatment regimen and describe

parenting as a burden. Their approach to treatment management is reactive,

and they are unable to describe " tricks of the trade. " Ill children are

uninvolved in their treatment and may say that they deliberately do not

follow physician orders. The illness looms large in the emotional landscape

of the family, and the future is dreaded. Family members see the illness as

a negative situation they cannot manage effectively.11

Impact on siblings

By interacting with siblings, children develop socialization skills and

lifelong bonds. A chronically ill brother or sister affects sibling

relationships in many ways, and responses of siblings are influenced by

their age, sex, developmental level, birth order, and spacing and by the

type of illness, family dynamics, language used to explain the sick child's

condition, and disruption caused by the illness.6

Some well siblings respond by being especially good. Others try to gain

their parents' attention through acting out. The developmental age of a

child influences how he or she perceives a sibling's illness and determines

the child's response to it.

Preschool children are egocentric and believe that their thoughts cause

things to happen. Their major fears are of separation from parents, loss of

control, and bodily injury. Seeing an ill sibling receive treatment may

arouse fear that they will receive the same treatment or catch the

illness.12 On seeing an ill sibling receive extra attention, well

preschoolers may respond with jealousy, anger, and regressive behaviors such

as clinging and thumb sucking.

School-age children are concrete in their thinking. They develop self-esteem

as they learn to master new skills. Children of this age tend to think

illness is caused by bad behavior. They often choose not to disclose a

sibling's illness to their peers out of fear that other children will tease

or ridicule the ill sibling.13

Adolescents, who can reason and think abstractly, are concerned about body

image, privacy, peers, and independence. In one study, young adolescents

revealed a sibling's chronic illness to peers more often than did school-age

children, indicating a more sophisticated understanding that the illness was

not the child's fault.14 Three-fourths of well adolescent siblings talked

about special things they did for their ill siblings; the majority did not

see major changes in their daily lives or peer relationships because of

this.

Family members often perceive their situation differently. On one hand, a

group of mothers with children with cystic fibrosis and a group with well

children rated the dependent care they provided for their children (age 2 to

16) similarly.15 In contrast, when school-age siblings of a child with

cystic fibrosis or asthma were interviewed, 58 percent thought that the ill

child did not receive special treatment, while the remaining 42 percent

reported that their ill sibling received more attention.16 However, most who

thought a sibling received more attention attributed this to practical

differences such as treatments or medications. When differences about

preferential treatment were looked at by group, 60 percent of the siblings

in the cystic fibrosis group and 22 percent in the asthma group believed

their brother or sister received special treatment.

School-age children said their siblings' illnesses had both positive and

negative effects on their lives.16 Positive effects included developing

stronger family relationships, seeing the ill child's health improve, and

gaining greater independence. Major negative effects were worry about the

ill child and disruption of normal activities. Almost half (42 percent) felt

that their ill brother or sister was difficult to get along with, and 26

percent reported they were occasionally jealous of the attention given to

the ill child.

Siblings of children with cystic fibrosis expressed more intense worries

that seemed to affect their mood; 40 percent of the siblings in this group

compared to 11 percent in the asthma group reported that they were the most

disturbed or the most unhappy family member.

School-age siblings expressed a high level of empathy and concern for

brothers or sisters with myelomeni ngocele.17 They told about activities

they enjoyed together, described feelings of protectiveness, and had

concerns that siblings might be injured or die. Well siblings did not

mention any adverse effects on their social life or embarrassment about the

disabled sibling.

Intervention

" Children with chronic illnesses or disabilities are normal children in

abnormal situations, " according to experts.18 For the ill child to receive

the nurturing care needed for healthy growth and development, the parents

and siblings must have their needs met. The accompanying box, " Meeting the

needs of families with a chronically ill child, " summarizes interventions

for families according to informational, social support, and emotional

needs.

Nurses must identify parents' needs through collaborative, systematic

processes to arrive at mutual priorities that will strengthen parents'

ability to nurture their children and meet the family's needs.19 Nurses and

family members have different goals and priorities, and nurses need to

understand parents' and children's perspectives so that they can establish a

partnership. You can strengthen parents' roles as primary caregivers by

realistically assessing parental needs as the course of their child's

chronic illness changes.20

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Ramona T. Mercer, RN, PhD, FAAN, professor emeritus in the department of

family healthcare nursing at UCSF, taught family courses for several years.

Her research has focused on family stress and parenting.

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