What Do Families Expect?


It’s not unusual for nurses to voice uncertainty when dealing with families of children with disabilities. Unless the nurse has parented a child with disabilities or has extensive experience with families of children with special needs, he or she is unlikely to have a great deal of personal insight into the parents’ expectations. A classic study of families of young children with disabilities found that parents expressed the following needs:

The authors were quick to point out, however, that each family is a unique entity and the needs of individual families cannot be predicted based on groupings such as the child’s disability or family category. Each family, they emphasize, has its own set of expectations and requirements that evolve over time (Bailey et al). Nevertheless, it is helpful for nurses to have an overview of those issues common to most families with disabilities and to use that overview as a springboard when working with the family.


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Each family of a child with disabilities has a unique set of expectations that stays constant over time.

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Three recent studies have investigated parental hopes and expectations with regard to their children with disabilities:

In other words, it’s not enough to focus solely on treating the child or supporting the parents. Nurses who work with families of children with special needs are expected to demonstrate sensitivity to goals for the child while teaching and providing validation to the parents. In order to work effectively with the families, professionals must balance child-centered interventions with time spent acknowledging the demands faced by the parents. Nurses working with families need to come up with creative methods for dealing with the psychosocial needs of the entire family.


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Nurses working with families of children with disabilities are expected to address the needs of both the parents and the child.
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Open-ended discussions, rather than question-and-answer sessions or formal interviews, can be more useful in determining the expectations of individual family members at any given point in time. Interestingly enough, nurses may find that parents are willing to discuss different aspects of their expectations and explore various issues in different physical settings. Nurses working with families should take every opportunity to meet in the family home, rather than a clinical setting, whenever possible. Valuable interactions can also take place while waiting for an appointment or evaluation session to begin, over the telephone, and even by email or letter. Non-leading questions, such as "What are you hoping will change as a result of ____?" or "What do you want ___ to do for you or your family?" provide parents with an opening to express their issues and concerns.

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Itís inappropriate to discuss family issues in informal settings because the family might not take the nurse seriously.
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