Whenever
possible, seek buy-in from all involved family members. Parents often
have a hard time accepting a new diagnosis of less visible disabilities, such
as ADHD or oppositional-defiant disorder*, in an older
child. Many times, grandparents will have even more difficulty understanding
the child’s disability. If the grandparent is highly involved in the
child’s life or influential with the child’s parents, nursing approaches
will ultimately fail unless the grandparents are included in the process.
A little extra time meeting with the grandparents, or involving them in a
family support group, can ease the way for the child’s enrollment in
special programs at school or in the community.
Instant
Feedback:
In
some families, the nurse needs to address the concerns of extended family members
in addition to dealing with the child’s parents.
Use
and facilitate negotiation as an effective problem-solving strategy. When
a child has special needs, the family is constantly stressed by the usual
demands of childhood plus all of the issues around the child’s disability.
Parents are often tired, overwhelmed, and may feel alienated from one another.
In that environment, problems can seem larger than they really are and decisions
may be made unilaterally or on the spur of the moment. The nurse can provide
real assistance to the family when she employs, models, and teaches simple
negotiation skills.
Instant
Feedback:
Disagreements
between the childs parents are private, and the nurse has no role in the decision-making
process.
Provide
honest information that is tailored to reflect the family’s information-processing
style and capacity. Over the past fifty years, attitudes and beliefs about
childhood disabilities have changed tremendously. There are many newer publications
containing outstanding information for children with disabilities. Unfortunately,
there are also many print and online resources for parents that are inaccurate,
misleading, or unnecessarily depressing. It’s important that the nurse
determine the family’s preferred media (e.g., web sites, journals, or
books) as well as their ability to handle information at any given point in
time. Rather than providing reams of information, the nurse should thoughtfully
select the resources most appropriate for the family and highlight the most
relevant portions. In addition to the web sites listed
at the end of this program, there are excellent books written for parents.
Help
the family reframe problems, putting them in a fresh perspective with constructive
action. Without a great deal of experience with children who have special
needs, parents may view problems in a one-dimensional way that excludes
alternative solutions. The child’s father, for example, may push his
daughter with disabilities to learn downhill skiing because the rest of
the family enjoys that activity. The child’s mother, more cognizant
of her daughter’s impairments, may want to limit winter activities
to snowmen and snowballs. Faced with conflicting ideas and at a standstill,
the couple may become bitter about the issue. The nurse working with the
family can help tremendously by letting the family know about adapted ski
lessons at a nearby resort, or put them in touch with the local Special
Olympics coach.
Instant
Feedback:
When
working with parents who have very different solutions in mind for a problem,
the nurse may be able to help by introducing new ideas that address the beliefs
of both partners.