Some key
observations included:
- Parents of children on
the
High Tech Program want to be parents first, not case managers or
nurses. They are willing to give care and nursing, but need a good
nights’ sleep, time to spend with their other children, and time to
parent (not nurse) their children with High Tech needs. The current
program puts
enormous training, supervision, and case management demands on parents,
and fails to provide many hours of allocated care, leaving many
families exhausted.
- Children in the High
Tech Program
have complex needs and things can take a downturn very quickly. A
stable situation with nursing care DOES NOT mean nursing and/or nursing
supervision is not regularly needed. Hi-Tech kids are able to avoid
hospitalization through frequent expert assessment that only a
medically trained provider can perform. Families are expert at
observing their children and reading distress, but do not have the
medical expertise to assess varying medical conditions or recommend
required care or response.
- Even a child with High
Tech needs
who is
medically stable needs a primary, hands on (not completely office
based), nurse care manager who is very familiar with the child to
regularly assess the child’s condition and to develop and maintain a
care plan for all care providers. This nurse should also train and
supervise any and all other types of care providers (e.g. High Tech
aides, Personal Care Attendants) about the care plan. Families
agreed that the
credentials of any given caregiver do not necessarily indicate
competency. Families are comfortable with the care of some RNs, LNAs,
High Tech aides, and Personal Care Attendants, and quite uncomfortable
with the care of others in all those categories. However, under the
current system, the less credentialed caregivers tend to put far more
demands on the family for recruitment, training, and supervision than
the higher credentialed care givers.
- Constraints
on “nurse delegation” (that is, who may perform certain procedures or
administer medications) are very inconsistent from provider agency to
provider agency and put tremendous pressure on parents to provide care
or supervise care. Some less credentialed providers are not allowed
(because of some home health agency’s policies) to perform some
technical procedures or administer some medications. Ironically,
parents are routinely expected to, and in some cases must be summoned
or even woken up to perform these procedures despite the presence of a
caregiver trained and competent to perform these functions.
- Fluidity in the program
between periods of medical stability and crisis is needed. Nursing back
up in case of illness needs to be readily available, and it would be
best if the same nurse could follow children in and out of the
hospital.
- The families who
reported the
highest satisfaction with care coordination were those who had a
consistent supervision from a nurse who knew their child, spent time
developing and maintaining a care plan, and who supervised and trained
other care providers. However, even those families were not
experiencing true comprehensive service coordination, as they
personally had to provide the “wrap” to coordinate with other services.
A new model of comprehensive care coordination is required for children
reliant on highly technical medical care.
|
