Its not unusual for nurses
to voice uncertainty when dealing with families of children with disabilities.
Unless the nurse has parented a child with disabilities or has extensive experience
with families of children with special needs, he or she is unlikely to have a
great deal of personal insight into the parents expectations. A classic
study of families of young children with disabilities found that parents expressed
the following needs:
- family and social support
- financial assistance
- child care
- professional support
- help explaining their
childs disability to others
- a chance to meet other
parents of children with disabilities
The authors were quick to
point out, however, that each family is a unique entity and the needs of individual
families cannot be predicted based on groupings such as the childs disability
or family category. Each family, they emphasize, has its own set of expectations
and requirements that evolve over time (Bailey et al). Nevertheless, it is helpful
for nurses to have an overview of those issues common to most families with
disabilities and to use that overview as a springboard when working with the
family of a child with disabilities has a unique set of expectations that stays
constant over time.
recent studies have investigated parental hopes and expectations with regard to
their children with disabilities:
- An occupational therapy
study determined that parents had two categories of expectations: child-focused
outcomes and parent-focused outcomes. The parents wanted social participation
skills, self-regulation, and perceived competence for their child. They also
wanted professionals to help them master learning strategies to support the
child, and to provide personal validation by showing understanding of the
challenges the parents faced (Cohn et al, 2000).
- A large study of 150,000
families of children with disabilities in the United Kingdom demonstrated
that children with severe disabilities have considerable extra care needs,
and parents want professionals to recognize and explicitly acknowledge these
extra demands (Roberts & Lawton, 2001).
- A national survey of
occupational therapists in the U.S. identified two major areas of parental
focus: the progress of the child and the parents own adjustment to the
childs disability (Hinojosa et al, 2002).
In other words, its
not enough to focus solely on treating the child or supporting the parents.
Nurses who work with families of children with special needs are expected to
demonstrate sensitivity to goals for the child while teaching and providing
validation to the parents. In order to work effectively with the families, professionals
must balance child-centered interventions with time spent acknowledging the
demands faced by the parents. Nurses working with families need to come up with
creative methods for dealing with the psychosocial needs of the entire family.
working with families of children with disabilities are expected to address
the needs of both the parents and the child.
Open-ended discussions, rather
than question-and-answer sessions or formal interviews, can be more useful in
determining the expectations of individual family members at any given point in
time. Interestingly enough, nurses may find that parents are willing to discuss
different aspects of their expectations and explore various issues in different
physical settings. Nurses working with families should take every opportunity
to meet in the family home, rather than a clinical setting, whenever possible.
Valuable interactions can also take place while waiting for an appointment or
evaluation session to begin, over the telephone, and even by email or letter.
Non-leading questions, such as "What are you hoping will change as a result
of ____?" or "What do you want ___ to do for you or your family?"
provide parents with an opening to express their issues and concerns.
inappropriate to discuss family issues in informal settings because the family
might not take the nurse seriously.