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Caring for Children with Orthotic/ Prosthetic Needs

Mary Novotny, MS, RN
Ann Swagman, MPH, CPNP, RN

Introduction

The keys to success in any professional practice are knowing the client and providing services geared to individual needs. In the case of children requiring orthotic and/or prosthetic care, success involves acknowledging that both the parent(s) and the child are clients. The practitioner providing services also needs to understand the concerns related to various developmental stages and how the condition affects the entire family. This article will discuss child development theory and relate developmental concepts to the specific needs of families that require O&P care. The theoretical framework is based primarily on Erik Erikson's theory of psychosocial development and on Piaget's stages of cognitive development. The focus is on children with physical disabilities. Relatively normal cognitive and psychosocial development is assumed; however, some of this information may apply to children with developmental delays as well.

Developmental Theory

Erikson conceived the life span as a progressive series of conflicts that must be resolved positively for healthy psychosocial development to occur. Table I outlines Erikson's psychosocial and Piaget's cognitive phases for each stage of development (1).

Each theorist emphasizes the uniqueness of each stage and its associated tasks, thereby distinguishing childhood from other phases of the life cycle. Recognizing that children are not miniature adults and acknowledging their unique needs is the first step to delivering effective care. Consequently, viewing the adaptive tasks and coping skills related to each age group provides a basis for professional interventions to enhance normal development.

Infancy (Birth to one year)

The development of a sense of trust is basic to a healthy personality. Babies learn to trust through consistent loving care provided by parents or caretakers. Feeding, bathing, diapering and cuddling activities teach baby that the world is a safe and reliable place. The result is a sense of faith and optimism. Children who are neglected will develop mistrust of their parents, and by extension of the world, other people and themselves.

The extent to which a baby's physical condition and appearance influences the parents' ability to bond and to provide loving care should be evaluated. The family's attitudes and behavior may affect the infant's developing body image and self-concept as well as the ability to trust.

Bonding can be facilitated by listening to parents' feelings and acknowledging their sorrow about the amputation or congenital absence. At the same time, practitioners should focus on the whole child. By demonstrating and pointing out the baby's strengths and normal skills, the professional can avoid overemphasis on the orthopedic challenge.

Professionals must recognize the impact of parents' feelings, perceptions and understanding on the child's outcome. Maintaining consistency and continuity of care helps the professional to realize parents' concerns, address the issues and promote trust and rapport. Too often, encounters with insensitive or uninformed caregivers enhance parents' guilt, negative self-esteem and frustration, creating barriers to a helping relationship (2). Addressing parents' needs can increase compliance, enhancing both practitioner success and family satisfaction with treatment.

The primary goal for prosthetic-orthotic fitting at this age is accepting and assimilating the device into the child's developing body image (3). Parents will need much education about the device, its use and care. Professionals should include demonstrations as well as written instructions whenever possible. Donning a device, which seems easy to the experienced professional, is nearly impossible for the parent with an active child. This should always be practiced as part of the fitting protocol.

Introducing parents to other families with children with similar diagnoses or to a support group can be helpful. Peers often share experiences, information and common problems, allowing parents and children to meet role models and learn novel coping techniques. Toddlerhood (One to three years) Erikson characterizes these years as the struggle to achieve autonomy as opposed to shame and self-doubt. Children increasingly are able to control their own bodies as well as their surroundings, and they delight in exercising these new abilities. Their battle cry is "I can do it myself!" The task for parents is to encourage rather than suppress independence. Parents need to set appropriate limits while providing an environment that gives the child a safe and secure setting to explore.

For children with disabilities, a sense of autonomy is a wonderful gift. Both parents and professionals need to promote a "can do" attitude at every opportunity. Professionals can help by providing children with O&P designs that are developmentally appropriate, allowing them to master normal activities for their age. Parents should be encouraged to allow independence and accept unsuccessful trials without criticism rather than doing things for their child. Focusing on the child's abilities rather than the "dis"ability can result in a sense of self-control and willpower for the child.

Power struggles between parent and child are common at this age. Conflicts may arise around issues of toilet training, feeding or bedtime. Power struggles may also encompass wearing the prosthetic or orthotic device. A firm yet gentle approach is often helpful. Offering choices about other things can help the child retain some sense of control. For example, the child might choose whether to get dressed (and don the orthosis or prosthesis) before or after breakfast. The child is given a choice, but not about whether to wear the device. Cooperation may also be enhanced by making a game of things and trying to avoid conflict when the child is tired. There will be times when parents and professionals should refrain from insisting the device be worn and try again when the timing is better.

Parents can be practitioners' best ally in determining when and how to accomplish a fitting or other difficult procedure with the least amount of stress to the child (and the practitioner). Professionals should recognize that most children cooperate better during peak" times (often after napping or meals) than they do when they are tired or upset, and schedule appointments accordingly. Keeping Mom or Dad nearby also will help calm most children, particularly when separation anxiety is an issue.

Children have a short attention span. Practitioners should be flexible and creative in their approaches, and use distraction if procedures require cooperation. TV, video cartoons and books work well.

Early Childhood (Three to five years)

Preschool children are developing initiative, or the ability to pursue activities constructively. This age group is active and eager, with vigorous imaginations. They sometimes confuse fantasy and reality. Their increasing verbal skills allow them to communicate well. Since children's activities may sometimes be in conflict with their parents' desires (i.e., coloring the living room walls), the challenge for parents is to teach appropriate behavior while encouraging exploration and initiative. At this age, children also begin to relate to peers, identify with the same-sex parent and develop a conscience. Hoped-for personality outcomes are direction, purpose and the courage to pursue a goal.

Including the child in conversation, rather than talking about him in his presence, acknowledges the child as a person. Children who are physically different from others may well begin to note that difference and to comment about it now, if they have not before. Their increased verbal skills allow them to ask questions and to express feelings about being different. They may also have misconceptions about their differentness due to their immature cognitive abilities. Parents and professionals should acknowledge the difference (and perhaps the associated anger and sadness). It is helpful to provide realistic information, giving honest explanations and clearing up misconceptions, in a simplified, loving and supportive manner.

Studies have shown that hospitalization, surgery and changes in body image are more disruptive to children of preschool age than infants (4). When new procedures are involved, most children want to know "how will it feel" or "why do I have to It is good to explain how things work, to allow the child to "assist" by holding things or to provide verbal clues during a procedure. This allows a sense of mastery and control for the preschooler while diminishing anxiety and enhancing cooperation.

Children may also become self-conscious around their peers due to their playmates' curiosity about their orthopedic challenge and prosthesis or orthosis. By example and by discussion, parents and professionals can help children to be more comfortable with these situations. Answering questions, role-playing responses and demonstrating the devices to friends and teachers have all been shown to be helpful (5). Children must be able to participate and to try new things successfully to develop initiative.

Middle Childhood (Six to 12 years)

Erikson describes the school-age years as a time of industry and activity. Children are eager to be involved in a variety of activities. This is a time that builds on the earlier foundations of trust, independence and self-confidence. The outcome, as children experience the satisfaction of completing a task or doing well in an activity, is a sense of competence. Friendships and peer groups become increasingly important. Children learn the rules, they learn to compete, and they learn to cooperate. If children live with unrealistic expectations or are unable to experience success in their endeavors, they may develop a sense of inferiority.

Intellectually, school-age children are moving away from intuitive learning toward learning based on their own concrete experiences. As they develop the ability to think systematically and to organize and classify their experiences, they leave behind the tendency to confuse reality and fantasy that is typical of preschoolers.

School-aged children with disabilities need support and understanding to cope with peer group situations. They need opportunities to participate in the normal activities of their age group. Take time to share information and resources about camps, sports and other activities where children can compete successfully and in which they can contribute to the accomplishment of a task or goal.

Teasing is common during the school years. Children may be teased about any physical difference. While difficult, it helps parents to remember that teasing happens to most children, with or without a disability, at some time. Children can sometimes ignore the episode, but more often they can learn to defuse it by teasing back. Since teasing often stems from fears on the part of the teaser, providing education and information to the child's class may be helpful.

This age group needs recognition. Professionals can promote self-esteem by addressing both parent and child by name. Children need explanations of their treatment they can understand in terms of their own experiences. Creative thinking and problem solving, encouragement and support can contribute to providing these children with a positive outcome.

Adolescence (13 to 18 years)

The teen years are characterized by rapid physical and emotional changes. It is a time of separating from family and developing one's own identity. Intellectually, adolescents develop the ability to conceptualize, to hypothesize and to think abstractly.

Adolescents face many physical and emotional conflicts in the transition to adulthood. This period is marked by increased attention to body image, sexuality and acceptance. Overemphasis on the disability and fear of failure resulting from a lack of information may compel the adolescent to underestimate current and future personal, vocational and economic capabilities (6). Professionals need to be sensitive to adolescent concerns about privacy, confidentiality and independence. The teen who is treated as an adult usually rises to the occasion. Engaging in conversation about current interests and identifying concerns about function or cosmesis of their orthotic or prosthetic devices can be revealing. Many times modifications can be made to decrease self-consciousness or accommodate special needs, such as sports participation. An awareness of options and the ability to participate in decision-making is important at this age.

Conclusion

Prosthetists and orthotists are crucial members of the team caring for children with orthopedic challenges. By understanding developmental needs of children and being sensitive to parental concerns, the practitioner enhances the effectiveness of care and becomes a valued ally for children and their families.

MARY NOVOTNY, MS, RN, is an educator and consultant who has specialized in the care of adult and child amputees for more than 14 years. She has written, lectured and coordinated a number of national projects on consumer advocacy and information. Ms. Novotny serves as consumer liaison to the Academy board of directors, the Amputee Coalition of America and several other national and local agencies.

ANN SWAGMAN, MPH, CPNP, RN, is currently employed as a pediatric nurse practitioner in Grand Rapids, Mich. Previously, she was associated with the Area Child Amputee Center at Mary Free Bed Hospital and Rehabilitation Center for eight years. She has worked in a variety of community health settings.

References:

1. Carlson C, Ricci J, Shade-Zedlow Y. Psychological aspects of disability in children. Pediatrician August 1990;17:4:213-21.
2. Alexander R, Tompkins-McGill P. Notes to the experts from the parent of a handicapped child. Social Work July-August 1987;32:4:361-2.
3. Celikol F. The upper limb-deficient child: a brief review of treatment strategies and modifications as the child grows. Physical Disabilities 1979;2:4:6.
4. Swagman A et al. Family perceptions regarding conversion surgery experiences. Journal of the Association of Children's Prosthetic-Orthotic Clinics Winter 1990;25:3:50-5.
5. Talbot D. Helping the limb-deficient child deal with social reactions to a physical difference. Journal of the Association of Children's Prosthetic-Orthotic Clinics Winter 1990;25:3:76-80.
6. Novotny MP. Psychosocial issues affecting rehabilitation. In: Friedman LW, ed. Physical Medicine and Rehabilitation Clinics of North America. May 1991;2:2:373-93.