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Children's Medical Services - Special services for children with special needs
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Infant Toddler Development Training
Module 6, Lesson 1

Effect of Health Problems on Families

mother and father holding kidsThe ITDS should have an acute awareness of the societal changes in the demographics of families. He/she must be very respectful of the differences in cultural as well as individual responses to challenging situations. A family can be defined as a single parent, either by choice or by death or divorce, a blended family, or may consist of multigenerational members. Children now are often raised by parents with alternate lifestyles, foster or adoptive parents, grandparents or other kin, or by non-relatives.

For many families a major impact of having an infant or toddler with a developmental disorder or chronic health condition is considered the loss of the dream. A typically developing robust child may not be a reality. When this occurs, each family member must cope and adjust in his/her own time and way.

The perceptions of the family can be influenced by all of the following: the visibility of the condition, the functional limitations that are expected for the child, the presence or absence of cognitive impairment, the presence of pain and suffering for the child, and the expectations that family members had for the child.

Stresses on Mothers

In many families the burden of care for a child with special needs and chronic health problems falls to the mother. This can include responsibility for special diets, arranging transportation, medical care, adaptive equipment, medical financing, baby sitters, and loss of time at a paying job. Additionally, the presence of functional and cognitive limitations in a child are linked to increased stress in mothers.

Chronic Sorrow

Some family members may experience chronic sorrow. Olshansky (1962) first identified the notion of chronic sorrow in families who have children with special needs. Chronic sorrow does not imply that families who have children with special needs are not normal and do not enjoy typical family activities. Rather, it refers to the fact that incidences such as visits to specialists for a diagnosis or planning meetings for services may bring up earlier grief reactions.

Searching for Information

Often families will search extensively for information about their child's condition and sometimes may neglect the emotional needs of the child's siblings or others in the family. The number of children who do not have an actual diagnosis of a chronic disability is estimated to be around 30%. This is very frustrating to families who want to know the cause, as well as the possible treatments. Assisting families to find the appropriate specialist to establish a diagnosis is important. Practitioners who label a child without first establishing causation may contribute to the stress that families feel. It should be noted, however, that for a small percent of children, a definitive diagnosis and causation will never be made.

Financial Pressures

The family is also dealing with the pressures of an added economic burden because of the cost of the health care, particularly if the child needs the services of multiple specialists. This includes the financial burden and expenses that are not usually covered by most third party payers.

ITDS Awareness

2 women talkingThe ITDS should be attuned to adjustment concerns and use reflective listening strategies to assist families going through a difficult time without judging what sometimes may seem like irrational mood swings. For example, sometimes a parent may lash out at a provider yet their anger is not directed at the person but rather they are displaying anger because they feel a helplessness to cure the child or better a situation. The ITDS must be alert to opportunities when positive feedback on the parents' competence can be provided to enhance the capacity of the parents to feel a sense of competence in their care giving skills. Families who feel competent adjust much more readily to parenting a child with special needs.

Not all families welcome extensive interventions as some view visits and strategies as an intrusion. How does the team make adjustments that show respect for a family who expresses this concern?

What other special circumstances could the ITDS encounter where adjustments in location, duration, and frequency or types of support vary?

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