The Child with a Chronic or Complex Condition
Developmental aspects
| Developmental Tasks | Potential effects of Chronic illness or Disability | Supportive Intervention |
| Infancy | ||
| Develop a sense of trust | Multiple caregivers and frequent separations, especially if hospitalized | Encourage consistent caregivers in hospital or other care settings. |
| Deprived of consistent nurturing | Encourage parental presence, “rooming in” during hospitalization, and participation in care. | |
| Bond, or attach, to parent | Delayed because of separation; parental grief for loss of “dream” child; parental inability to accept the condition, especially a visible defect | Emphasize healthy, perfect qualities of infant.
Help parents learn special care needs of infant for them to feel competent. |
| Learn through sensorimotor experiences | More exposure to painful experiences than pleasurable ones | Expose infant to pleasurable experiences through all senses (touch, hearing, sight, taste, movement). |
| Limited contact with environment from restricted movement or confinement | Encourage age-appropriate developmental skills (e.g., holding bottle, finger feeding, crawling). | |
| Begin to develop a sense of separateness from parent | Increased dependency on parent for care | Encourage all family members to participate in care to prevent overinvolvement of one member. |
| Overinvolvement of parent in care | Encourage periodic respite from demands of care responsibilities. | |
| Toddlerhood | ||
| Develop autonomy | Increased dependency on parent | Encourage independence in as many areas as possible (e.g., toileting, dressing, feeding). |
| Master locomotor and language skills | Limited opportunity to test own abilities and limits | Provide gross motor skill activity and modification of toys or equipment, such as modified swing or rocking horse. |
| Learn through sensorimotor experience, beginning preoperational thought | Increased exposure to painful experiences | Give choices to allow simple feeling of control (e.g., choice of what book to look at, what kind of sandwich to eat).
Institute age-appropriate discipline and limit setting. Recognize that negative and ritualistic behaviors are normal. Provide sensory experiences (e.g., water play, sandbox play, finger painting). |
| Preschool Age | ||
| Develop initiative and purpose
Master selfcare skills |
Limited opportunities for success in accomplishing simple tasks or mastering self-care skills | Encourage mastery of self-help skills.
Provide devices that make tasks easier (e.g., self-dressing). |
| Begin to develop peer relationships | Limited opportunities for socialization with peers; may appear “like a baby” to age mates
Protection within tolerant and secure family, causing child to fear criticism and withdraw |
Encourage socialization (e.g., inviting friends to play, day care experience, trips to park).
Provide age-appropriate play, especially associative play opportunities. Emphasize child’s abilities; dress appropriately to enhance desirable appearance |
| Develop sense of body image and sexual identification | Awareness of body centering on pain, anxiety, and failure
Sex-role identification focused primarily on mothering skills |
Encourage relationships with same-sex and opposite-sex peers and adults. |
| Learn through preoperational thought (magical thinking) | Guilt (thinking he or she caused the illness or disability or is being punished for wrongdoing) | Help child deal with criticisms; realize that too much protection prevents child from realities of world.
Clarify that cause of child’s illness or disability is not his or her fault or a punishment. |
| School Age | ||
| Develop a sense of accomplishment | Limited opportunities to achieve and compete (e.g., many school absences, inability to join regular athletic activities) | Encourage school attendance; schedule medical visits at times other than school; encourage child to make up missed work. |
| Form peer relationships | Limited opportunities for socialization | Educate teachers and classmates about child’s condition, abilities, and special needs.
Encourage sports activities (e.g., Special Olympics). Encourage socialization (e.g., Girl Scouts, Campfire, Boy Scouts, 4-H Club; having a best friend or club membership). |
| Learn through concrete operations | Incomplete comprehension of the imposed physical limitations or treatment of the disorder | Provide child with information about his or her condition.
Encourage creative activities (e.g., VSA Arts). |
| Adolescence | ||
| Develop personal and sexual identity | Increased sense of feeling different from peers and reduced ability to compete with peers in appearance, abilities, special skills | Help child realize that many of the difficulties the teenager is experiencing are part of normal adolescence (rebelliousness, risk taking, lack of cooperation, hostility toward authority). |
| Achieve independence from family | Increased dependency on family; limited job or career opportunities | Provide instruction on interpersonal and coping skills.
Encourage increased responsibility for care and management of the disease or condition (e.g., assuming responsibility for making and keeping appointment [ideally alone], sharing assessment and planning stages of health care delivery, contacting resources). Discuss planning for future and how condition can affect choices. |
| Form heterosexual relationships | Limited opportunities for heterosexual friendships; less opportunity to discuss sexual concerns with peers
Increased concern with issues such as why did he or she get the disorder and whether he or she will marry and have a family |
Encourage socialization with peers, including peers with special needs and those without special needs.
Encourage activities appropriate for age (e.g., attending mixed-sex parties, sports activities, driving a car). Be alert to cues that signal readiness for information regarding implications of condition on sexuality and reproduction. Emphasize good appearance and wearing stylish clothes, use of makeup. Understand that adolescent has same sexual needs and concerns as any other teenager. |
| Learn through abstract thinking | Decreased opportunity for earlier stages of cognition impeding achievement of level of abstract thinking | Provide instruction on decision making, assertiveness, and other skills necessary to manage personal plans. |
