The Volta Review - Alexander Graham Bell Association

emphasized their need for educational support at home, which was unavailable
at the first center.
Finally, the rejection of the diagnosis and the necessity of any specialized care
found in 1 family’s response reappears as an important element. After a 2 year
delay and when their second child was born, the UNHS nurse contacted
a larger (re)habilitation center and accompanied the mother during the
assessment on admission and all subsequent therapy sessions. The mother
stated that she had the impression that the larger (re)habilitation center
had more expertise in intervention for newborn children than the first center
that she had attended.
The onset of infant school at one of the “Medical and Educational Services
for the Deaf ” (MED) clusters was a decisive factor for 2 families’ who reported
a second change of (re)habilitation centers. The parents explained their decision
by the practical advantage of the concentration of all necessary services in the
MED clusters.
It appears from parental accounts that both practical factors (travelling
distance and time, correspondence with special education facilities, or opening
hours) and social factors (professional advice, social relations with peers,
or information-seeking by parents) had an influence on their decision to
change centers for outpatient (re)habilitation care.
End of Outpatient Multidisciplinary (Re)habilitation Care
Ending the use of (re)habilitation services is an issue for which little
is known, even though it is a key component in a child’s care trajectory. This
analysis shows that all parents took matters regarding the end of care very
seriously because they reported responsibility, not only for the child’s wellbeing
at a certain point in time but also for the child’s long-term development.
Different experiences were reported in which the interaction with care professionals
clearly plays a major role. All parents reported (re)habilitation care
trajectories of more than 6 years at the time of interview. Most parents had not
considered ending the use of outpatient care; they reported it was necessary
and useful for their child. However, 3 families had decided to call an end to the
use of outpatient care. The burden of therapy for the child was a decisive factor
for 1 family. The parents ended (re)habilitation care after 6 years as a result of
the combination of attending school, doing home work, and going to therapy.
Professional assessment of the child’s educational and social achievements were
reported by 1 family as a decisive factor. After 6 years of outpatient care,
professionals were confident that the child would continue to achieve good
functional and school results without outpatient care. The mother agreed to
end care on the condition that professionals from the center would continue to
participate in meetings with school staff and educational support therapists.
Finally, the unusual disappearance of the child’s hearing loss after 2 years of care
was an obvious reason for 1 family to end care-use. This incident is rare,
314 Hardonk, et al.