Many of the participants reported feeling a lack of support
from any type of formal organization. It needs to
be noted that informal networks of support were developed
with doctors and family members, and were highly
appreciated. Participants described the important
role played by extended family in supporting and caring
for the child, as well as, contributing to the financial
burden. In addition, a few families highlighted the
assistance they received from their physician. Doctors
treating the diabetic children were reported to be very
accessible, understanding, and in some cases offered an
informal payment scheme to make insulin affordable.
The Ghana Diabetes Association (GDA) is a full member
of the International Diabetes Federation (IDF), and
is a national association concerned with diabetes or
diabetes related conditions in Ghana. Few participants
reported having any knowledge of the GDA. Those
who did were unsure of its services for children, believing
that it was largely concerned with adults. Children
and parents expressed a need for a regular support
group, or “diabetes club” specifically for youth.
The doctor attending to many of the children interviewed
held a informational group session, which educated
patients on diabetes care, and offered an opportunity
for children and parents to share and compare
experiences. This session was valued by families, and
proved to be an effective way to dispel misconceptions
and disseminate information. One family interviewed
started a juvenile diabetes club. Both the diabetic youth
and her parents reported that this club has been a beneficial
and enjoyable venture. However, they also noted
the time, energy and financial costs they personally
incurred, and the need for more formal juvenile diabetes
organizations.