Special Considerations

Naseef and others point out that there are special circumstances around parents’ reactions to a child’s disability and the resulting grief process. Chronic sorrow can envelope families, and can recur throughout the child’s lifetime. Many families describe an underlying chronic sorrow that rises to the surface from time to time, often during transition times in the child’s life. In some cases, the chronic sorrow has debilitating long-term effects on family functioning.

Nurses who have formed parent/professional partnerships with the family can watch for signs of chronic sorrow, and may recommend professional counseling if the sorrow significantly impairs family functioning or care of the child with disabilities. It is also helpful to gently remind the family that the emotion can recur at times of transition, and prepare them for planned transitions. For example, when their child is about 2-1/2 years old and the parent/professional team begins to plan for the transition from the early intervention program to the school system, many families feel sorrow as they face the loss of particular hopes and dreams for their child.

When the child’s disability is not readily apparent at birth, parents may face a long period of anxiety and uncertainty before the child’s differences are acknowledged and diagnosed by professionals. And many times the diagnosis is elusive, incorrect, or incomplete for quite a period of time. During this difficult and stressful time, parents may receive confusing, conflicting, or erroneous information that engenders stress and distrust of healthcare professionals.

Nurses working with the family during this period can serve an invaluable function by interpreting complex reports, supporting thefamily during diagnostic procedures and appointments, and obtaining accurate written information that reflects the family’s learning style, knowledge base, and readiness. It’s also important that nurses acknowledge the intensity of the parents’ emotions and voice understanding of the history underlying this distrust.