Naseef and others point out that there are special circumstances around parents reactions to a childs disability and the resulting grief process. Chronic sorrow can envelope families, and can recur throughout the childs lifetime. Many families describe an underlying chronic sorrow that rises to the surface from time to time, often during transition times in the childs 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.
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 familys learning
style, knowledge base, and readiness. Its also important that nurses acknowledge
the intensity of the parents emotions and voice understanding of the history
underlying this distrust.