(Lesson 4- Table of Contents) (Next) (Glossary)

According to Frank14, honoring the uniqueness of each person's bereavement experience is when true caring begins. When working with the parent of a child with a congenital defect or a person with a newly diagnosed genetic condition, the following recommendations are offered. These recommendations are not in a specific order since many of them overlap in time.

1. Explore your own history or experiences with loss and grief. These experiences affect how you work with a person in grief. Critical incident debriefing and/or talking with a support team or colleagues are also important for the professionals working with grieving families as this can help prevent burnout.

2. Understand that mourning is a process necessary for health and adaptation. It is associated with reactions and feelings that are essential for resolution of the loss.

3. Obtain a history from your patient or the parents of the losses they have previously experienced and the coping mechanisms they utilized.

4. Provide a "safe" place for interaction as grief and the feelings that accompany it leave a person "vulnerable."

5. Provide your patient and the members of the family with facts and anticipatory guidance for the future. The information to provide includes (1) diagnosis, prognosis, life expectancy, etc.; (2) information about the stages, length and cyclical nature of the grief process; (3) physical symptoms or feelings they may experience; (4) reactions from society; (5) anniversary dates that may trigger a grief response; and (6) society's response and expectations about losses. All information should be verbally reviewed as well as written for later reference.

6. Validate feelings, but do not state that you "know how they feel" unless you have had a similar experience.

7. Realize that all societies define expectations of how one should grieve. Educate yourself about the various cultures in your area and their views concerning children with congenital/genetic defects and death. Support the parents or person with an illness in a culturally sensitive manner.

8. Acknowledge and reinforce to other family members that each person will grieve differently and in a different time frame according to personality, previous experiences, culture and philosophy of life and death.

9. During the initial days after the diagnosis, your patient or the parents may need very explicit instructions. Write down all instructions for the child's care, all appointments and important phone numbers. Remind them that they need to eat regular meals. Suggest that they write down the meals they have eaten so they don't skip meals. This is especially helpful when there are other children involved.

10. Assist the parents, patient or family in identifying the resources and support systems they have used in the past. Suggest that they develop a list of things they need assistance with so when someone asks them if they can help in some way, they have an answer. Items on such a list may include answering the phone for an hour, making a meal, doing a load of laundry or baby-sitting the children.

11. Provide the parents, the patient and grandparents with information about support groups for persons in similar situations.

12. If possible, arrange for home health follow-up for a period of time. Following hospital discharge, many new questions or situations will arise that require assistance.

13. Concerns about financial matters may be overwhelming and prevent progression through the grief process. Provide information about financial assistance (e.g., Supplemental Security Income (SSI)) when the parent or patient expresses financial concerns.

14. Provide parents with information concerning the other children in the family and how they may express grief. Age appropriate books to loan to families are also a good idea.

15. Empower families by helping them develop skills and by providing them with information so they can act on their own behalf.

Lesson 4- Table of Contents) (Next) (Glossary)