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Looking back, we identify some important things that helped or would have helped our family as we learned about Ari's diagnosis and started down our Road of Hope. Remember, that the nursing case manager's role is to collaborate with the family and pursue the goal of fostering and encouraging the family's independence and self-determination. It is exciting to see when a family has achieved self-advocacy and self-direction of care. To be the most effective in helping patients and families with a diagnosis of chronic disability, keep the following considerations in mind:


General Points to Remember


* The fear during the wait for the diagnosis is agonizing. Denial, depression, and a sense of doom are constant companions.


* Hearing the doctor give the worst possible diagnosis releases terrifying emotions and thoughts.


* Finding ways to cope with a long hospital stay challenges even the most "functional" people to keep from becoming "dysfunctional."


* Going home from the hospital is traumatic. Very little will ever be the same. A new normalcy will develop.


* Reflecting on the long journey ahead, one must never forget to be thankful for the miracles of the past.


* Parents of severely disabled children need time and space to process the implications of their child's illness. It is not acceptable to hear, "When are these parents going to face reality?" This road is not about healthcare workers or teachers or friends seeing the path clearer than the parents. What parents need is for others to walk alongside them.


Help Families Cope With Long-Term Hospitalizations


* When possible, offer to sit with the child so that the parent can take a badly needed break to eat, sleep, shower, or be with his or her spouse or other children.


* Be creative with integrating nursing in play therapy. Teach children and families about their disability and treatment through play.


* Keep an open mind when the parents desire to implement innovative techniques (with the approval of the physician).


* Be a patient and family advocate to physicians. If care needs to be changed, help the family present compelling justifications.


* Call for interdisciplinary care conferences to promote better communication. Include the family so they are present to make informed decisions.


* Offer family counseling, chaplaincy, social work, and support services to the crisis-challenged family. Don't be afraid to offer and keep offering help.


* When families ask for prayer, take that moment to offer a prayer. Ask if you can pray with them.


* Become like family when families are faced with life and death. Offer compassion and strong hugs when appropriate. Sometimes it is not what you say that counts but your loving presence that makes the difference.


* Recommend the hospital library and librarian to assist the parents with research on their child's diagnosis, support groups, searches for funding, and the like. Collect and provide resource information for families.


* Allow families the ability to think through the diagnosis and how to deal with complications. Walk alongside them to be their cheerleader, and when asked, be their coach.


* Understand that society's attitude toward the disabled can be demeaning. Show that you look behind the wheelchair, tracheostomy, physical and mental handicaps, and the like to see the child as a valuable human being. Appreciate and focus on the child's abilities not on his or her disabilities.


* Even with the difficult families, look for the positives. Discover what you can learn from them and thank them for it. It will create better relationships.


Unique Ideas for Discharge Planning

Ask families if they are part of a church group. If they are, it may be evident during the hospital stay. If they are not, encourage them to contact a church for volunteers to assist with siblings, cook meals, run errands, and provide financial assistance for noncovered insurance items. If appropriate, offer to help them find a church. Church families can be extended families with a huge source of spiritual and emotional support.


Finding the foundation associated with their child's disease offers many resources and gives families the feeling that they are not alone. They can be mentored by those families who have fought the same battles that lie ahead of them. For example, the Spinal Muscular Atrophy Web site,, has topics such as understanding SMA, local and international chapters, latest research findings, funding, medical issues, chat rooms, forums, living with SMA, home renovations, recreations and travel, books, insurance, and annual conferences with families, affected children, and professionals.


* Depending on where people live, there may be palliative care programs, pediatric rehabilitation programs, or services such as Sports for the Disabled. Learn about these and offer information to families.



Become a Better Advocate


* Recognize that it takes time for families to grow into the role of advocates. Families must first master the knowledge and skill of how to care for their child. It is important not to overwhelm families at the outset of the disease because they are already overwhelmed. Remember that they did not ask to become nurses along with being parents. Teach gently and slowly and know that you will need to repeat information again and again.


* Begin to train parents by educating them in how to choose the providers that will best meet their child's needs (i.e., home health nurses, equipment companies).


* Educate parents on how to obtain funding and insurance. Teach them how to contest denials from insurance and to advocate for their child with the school system. Alert parents to the pitfalls of lack of funding or denials of services. Teach them how to advocate for their situation effectively to win necessary services.