The Family System

“After hearing that my child was injured, I felt as if I were slapped in the face; I felt the burning sensation for several minutes. There are some days when I can still feel that sensation on my cheek.” -Mrs.

It is not uncommon for a parent to have such a vis­ceral reaction after hearing that their child has been diagnosed with a serious illness or disability. The way in which the parent or caregiver views the world is immediately changed. They lose their naivety and are forced to recognize the unfairness of the world. The process of this change is at the same time very fast and in slow motion. A parent or caregiver must imme­diately begin to make sense of the medical information presented to them, while at the same time devise a plan for siblings, spouses, or other family members. The family system as they knew it has been permanetly altered, and caregivers must now face the challenge of learning new tools to facilitate their understanding of the child's illness or disability.

Depending upon the diagnosis, the period of understanding the child's illness or disability may unfold within days, months, or years. Physical, emo­tional, and spiritual development will continue to take place, and the caregiver's role as parent will also con­tinue to evolve as they learn new facets of their child's life. Extended family members who may not have been as involved in the past may now join the new family system in order to care for the siblings of a child with an injury or disability.

Traditional family roles and finances may be affected as the family prepares to accommodate the special needs of their child. Parents who in the past never had to rely on social services agencies may now require the tools to apply for public assistance. Applications for Social Security disability; Women, Infants, and Children (WIC); and food stamps may now need to be made in order for the family to survive.

Days before the diagnosis, the family may have been maintaining an organized schedule of work, school, church, recreation, and minimal physical- or health-related issues. Now, the caregiver system is engaged in learning about the special needs of their child, and at the same time, needing to rely on a “health care team” of individuals, none of whom know their child or family history. One complaint that parents have during these intial meetings with the health care team is that it is difficult for the parent to establish themselves as primary caregiver when other members of the team have so much influence upon how the child will be cared for. Parents may have the sense of being “steamrolled” over by the health care team and will need to maintain their role as primary caregiver (8).

In order to prevent these feelings, a parent should be supported by the health care team to continue to be the “expert” about their child and also be encouraged to partcipate as a member of the health care team. A parent or caregiver will be the most successful in caring for their child with an injury or disability if they are given the opportunity to partner with the health care team. The parent of a child with special needs begins to develop new roles and learns how to be the child's advocate, broker, educator, and project manager.

Advocate

In the article “How to advocate for your child,” Shekerjian (12) offers 10 tips to advocate for your child as follows:

1) Define and examine your concerns.

2) Develop possible solutions.

3) Prepare a written document.

4) Meet with the teacher (case manager, staff member).

5) Approach the meeting with a positive attitude.

6) Define the next step.

7) Document events.

8) Follow the chain of command.

9) Consider all educational options.

10) Never forget that you are responsible for the edu­cation (treatment, success) of your child.

Further, Faust (13) believes advocacy to be “a vital element because systems are not always responsive to the individual client.” Parents, as advocates, take on the role of negotiating home care services, educa­tional plans, and other social systems when their child has been diagnosed with a serious illness or injury. Parents have become more and more influential as social change agents, and advocacy is one way in which they make change. For example, a parent may need to call the administrator for their health care policy or legislator in order for their child to receive specialized equipment that may not otherwise be cov­ered. The parent's opinion and understanding of her child's illness or disability may have more influence than the medical team has on the insurance system. One caveat to this example, however, is that parents may not have the energy or expertise to navigate this system without supports.

Broker. To manage, or to “broker,” is the process in which a parent acts as a link or bridge to services (14). Parents with children with special needs are often the primary bridge between the medical staff and ancillary staff in the hospital, community resources, and the educational system. This role is necessary to ensure that services are appropriate and accessible to their child. This role also involves the parent or care­giver being concerned with the “quality and quantity of services.” In other words, a parent will not rely on only the services that are offered, but will challenge the system to communicate in order to create change. This change can occur within or without the hospital system. On the rehabilitation team, for example, the parent communicates with team members from one hospital to another in order to prepare for discharge and ancillary services.

Educator. Parents begin their child's educational pro­cess even before the child is born, as soon as they begin to read the book What to Expect When You Are Expecting (15), and they continue the process as long they live.

Project Manager. “Parents of children with disabili­ties do not see their children's needs dividing neatly along program lines” (16). However, the roles that parents take on should be on their own terms and should be evaluated periodically with staff. This evaluation should include the successes as well as the challenges faced by the family members. A care­ful and honest negotiation is necessary to clarify the needs of the patient and their caregivers. A parent who becomes a skillful advocate, broker, and edu­cator is first and foremost a parent and should be supported in that role, not evaluated on their effec­tiveness in other roles (17).