Pediatric Annals

Enhancing the Coping of Young Children with Disabilities

G Gordon Williamson, PhD, OTR; Shirley Zeitlin, EdD

Abstract

A major task of growing up is to develop an effective coping style for meeting the challenges of daily living. Children with developmental disorders and delays must also learn to cope with the demands created by their medical condition. The pediatrician has an important role in supporting the efforts of these children and their families to achieve optimal adaptation. This article presents an overview of coping in children with handicapping conditions, offers suggestions for identifying their coping strengths and vulnerabilities, and recommends strategies for facilitating their adaptive functioning within the context of a busy pediatric practice.

COPING AND CHILDREN WITH DISABILITIES

Coping is the process of making adaptations to meet personal needs and to respond to the demands of the environment. ' In this process, the child manages daily routines, opportunities, and frustrations in order to maintain or enhance feelings of well-being. Effective coping is achieved when there is a balance between demands and expectations and the ability of the child to meet them. 2 It is influenced by such factors as the child's physical health, temperament, developmental skills, and social support. 5 Significant correlations have been found, particularly in kindergarten- and schoel-aged children, between coping effectiveness and the child's academic achievement and personal sense of competence.4,5

Children who are developmental Iy delayed or disabled frequently have fewer resources for acquiring effective coping strategies than their more typical peers.6'8 A neuromotor, cognitive, or communication handicap may interfere with the child's ability to acquire the developmental skills and coping behaviors necessary to manage. In addition, external stressors, such as hospitalizations, treatment regimes, separation from parents, and restrictions in activity, may place additional demands on the child.9 Although the presence of a disability does not necessarily imply ineffecfive coping, the child with a handicapping condition appears to be more vulnerable to the stress of daily living.10

Table

Since the family is critical to the child's development, consideration needs to be given to the parentchild interaction and the family's coping resources. Table 2 presents three questions that may be considered when observing the parent-child interaction. In addition, key factors are addressed in Table 3 that influence the ability of the parents to cope with child care and family life.

HELPING THE CHILD AND FAMILY COPE

When there are concerns about how the child and family cope, they can be shared and help can be offered. The physician or other qualified staff (ie, nurse, counselor, social worker) can provide information, suggest management strategies, or identify supportive community resources. 12 Perception of how the parents cope will determine how and what information is shared for the family to benefit optimally.

Factual information about the child's condition and prognosis and their impact on development help the family establish appropriate demands and expectations. Although an ongoing issue for most families, it is a special challenge for parents of disabled children not to expect too much or too little. Expectations are important because of their influence on how parents manage interactions with their child. They also set the standard for evaluating their child's efforts.

As many disabled children tend to be passive, strategies can be suggested to parents to facilitate their child's development of effective self-initiated behaviors. Behavior is considered effective when it is appropriate for the situation, appropriate for the child's developmental age, and successfully used by the child to achieve the desired outcome. One useful strategy is to wait for the child to initiate an action (no matter how small) and then to reinforce the child's effort with praise or other encouragement. It helps when the child's environment is uncluttered. When choices are limited, it is…

A major task of growing up is to develop an effective coping style for meeting the challenges of daily living. Children with developmental disorders and delays must also learn to cope with the demands created by their medical condition. The pediatrician has an important role in supporting the efforts of these children and their families to achieve optimal adaptation. This article presents an overview of coping in children with handicapping conditions, offers suggestions for identifying their coping strengths and vulnerabilities, and recommends strategies for facilitating their adaptive functioning within the context of a busy pediatric practice.

COPING AND CHILDREN WITH DISABILITIES

Coping is the process of making adaptations to meet personal needs and to respond to the demands of the environment. ' In this process, the child manages daily routines, opportunities, and frustrations in order to maintain or enhance feelings of well-being. Effective coping is achieved when there is a balance between demands and expectations and the ability of the child to meet them. 2 It is influenced by such factors as the child's physical health, temperament, developmental skills, and social support. 5 Significant correlations have been found, particularly in kindergarten- and schoel-aged children, between coping effectiveness and the child's academic achievement and personal sense of competence.4,5

Children who are developmental Iy delayed or disabled frequently have fewer resources for acquiring effective coping strategies than their more typical peers.6'8 A neuromotor, cognitive, or communication handicap may interfere with the child's ability to acquire the developmental skills and coping behaviors necessary to manage. In addition, external stressors, such as hospitalizations, treatment regimes, separation from parents, and restrictions in activity, may place additional demands on the child.9 Although the presence of a disability does not necessarily imply ineffecfive coping, the child with a handicapping condition appears to be more vulnerable to the stress of daily living.10

Table

TABLE 1Least Effective Coping Behaviors of Young Disabled Children

TABLE 1

Least Effective Coping Behaviors of Young Disabled Children

IDENTIFYING COPING STRENGTHS AND VULNERABILITIES

Information about how the child copes can be collected through parent interviews and observation of the child's interactions during office visits. In children under 3 years of age, the critical coping behaviors to be addressed can be classified in three broad categories - sensorimotor organization, reactive behavior, and selfinitiated behavior."

Sensorimotor organization refers to behaviors that reflect the child's regulation of psychophysiological functions and the ability to integrate the sensory and motor systems. These sensorimotor behaviors involve such factors as the organization of state and arousal, self-comforting behaviors, managing the intensity and variety of sensory stimuli, and the quality of motor control.

Reactive behaviors are used to respond to external demands of the physical and social environments, such as the ability to accept warmth and support from familiar persons, to adapt to daily routines and limits set by the care giver, and to respond to vocal or gestural direction.

Self-initiated behaviors are autonomously generated behaviors used to meet personal needs and interact with objects and people. Whereas reactive behaviors are closely contingent on environmental cues, selfinitiated behaviors are more spontaneous and intrinsically motivated. They include the ability to initiate action to communicate a need, to apply previously learned behaviors to new situations, and to demonstrate persistence during activities.

The authors conducted a study that compared the coping characteristics of 1,035 disabled and 405 nondisabled children ranging in age from 4 to 36 months." It was found that the coping behaviors of the disabled children were significantly less effective than those of the nondisabled infants and toddlers. As a group their coping behaviors were often inconsistent, inflexible, or limited in range. These children were particularly deficient in the use of self-initiated coping behaviors. Table 1 presents the least effective behaviors of this group as identified from an item analysis. They warrant particular attention and monitoring by the pediatrician.

Table

TABLE 2Observation of Parent-Child Interaction

TABLE 2

Observation of Parent-Child Interaction

Table

TABLE 3Family Coping Resources

TABLE 3

Family Coping Resources

Since the family is critical to the child's development, consideration needs to be given to the parentchild interaction and the family's coping resources. Table 2 presents three questions that may be considered when observing the parent-child interaction. In addition, key factors are addressed in Table 3 that influence the ability of the parents to cope with child care and family life.

HELPING THE CHILD AND FAMILY COPE

When there are concerns about how the child and family cope, they can be shared and help can be offered. The physician or other qualified staff (ie, nurse, counselor, social worker) can provide information, suggest management strategies, or identify supportive community resources. 12 Perception of how the parents cope will determine how and what information is shared for the family to benefit optimally.

Factual information about the child's condition and prognosis and their impact on development help the family establish appropriate demands and expectations. Although an ongoing issue for most families, it is a special challenge for parents of disabled children not to expect too much or too little. Expectations are important because of their influence on how parents manage interactions with their child. They also set the standard for evaluating their child's efforts.

As many disabled children tend to be passive, strategies can be suggested to parents to facilitate their child's development of effective self-initiated behaviors. Behavior is considered effective when it is appropriate for the situation, appropriate for the child's developmental age, and successfully used by the child to achieve the desired outcome. One useful strategy is to wait for the child to initiate an action (no matter how small) and then to reinforce the child's effort with praise or other encouragement. It helps when the child's environment is uncluttered. When choices are limited, it is often easier for the child to make a decision and initiate an action.

Many families benefit from contacts with community resources. Organizations dedicated to a particular condition (such as United Cerebral Palsy or the Spina Bifida Association) offer an array of services. Early intervention programs provide developmental and therapeutic activities for the child and assist the parents in adaptive care giving. Support for family members is also available.

As the extra demands of care giving for the disabled child present major stressors, some programs and organizations offer respite care. A community may also have a parent to parent support network or self-help group.

Effective parent and child coping not only enhances the medical management of the child's condition but also influences the well-being of the entire family. The physician has many options to support their coping efforts. Each chooses those that are perceived to be useful and manageable within pediatric practice.

REFERENCES

1. Zeitlin S, Williamson GG, Rosenblatt WP: The coping with stress model: A counseling approach for families with a handicapped child. J Counseling and Dev 1987; 65:445-446.

2. Lerner RM. East PL: The role of temperament in strevs. coping and socioemotional functioning in early development. Inf Mental Health J 1984; 5:148-159.

5. Murphy LB. Monarty A: Vulnerability. Cofmg and Gnneth. New Flavcn. Conn. Yale University Press. 1976.

4. Larson JG: Relationship between coping behavior and academic achievcmem in kindergarten children. Dissertation Abstracts International 1984; 45:2 58A. (University Microfilms No. 84-15514. 147)

5. Zeithn S: Copmg fnwmor? Bensenville, III, Scholastic Testing Service, 1985.

6. Cicchetti D, Serafica F: Interplay among behavioral systems: Illustrations trom the study of attachment, affiliation, and wariness of young children with Down's syndrome. Dev Psych 1981; 17:56-49.

7. Bunker KP. Lewis M: Discovering the competent handicapped intani: A process approach to assessment and intervention. Topics in Earls Childhood Special Education 1982: 2:1-16.

8. Wasscrmand GA. Allen R. Solomon CR: At-risk toddlers and their mothers; The special case ol physical handicap. Child Dev 1985; 58:75-85.

9. Drotar D. Crawford P. Ganofsky MA: Prevention with chronically ill children, in Roberts MC, Peterson L (eds): Prevention of Problems in Children. New York, John Wilev and Sons. 1984.

10. Williamson GG. Zcitlin S: Coping behavior: Implications tor disabled infants and toddlers. Inf Mental Health J. in press.

11. Zellini S, Williamson GG: Early Coping lmentory Bensenville. III. Scholastic Testing Service. 1988.

12. Williamson GG, Zeitlin S: Coping in Young Children Early Intervention to Enhance Adaptive Behavior. Baltimore. Paul Brooks. in press.

TABLE 1

Least Effective Coping Behaviors of Young Disabled Children

TABLE 2

Observation of Parent-Child Interaction

TABLE 3

Family Coping Resources

10.3928/0090-4481-19881201-10

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