Parents of children with T1DM are willing to do whatever is necessary to care for their children, but are faced with insurmountable obstacles. Accurate diagnosis at the primary care level could prevent many children from falling into a coma, or dying. Several of the youth interviewed in this study fell into a coma after being incorrectly diagnosed at hospitals and clinics. The emotional trauma this causes families is long lasting.
In 1999 a three year project was embarked upon to develop and implement a Ghanaian model of a national diabetes care and education programme.13
The purpose of this project was to improve diabetes care at the primary level. The project has been successful in making people aware of type 2 diabetes. However, in doing so, it may have posed an obstacle for children with T1DM. Bringing (needed) attention to Ghanaians dealing with type 2 may have resulted in primary care professionals and the general public associating diabetes only with over weight adults and therefore assigning known diabetic symptoms in youth to other illnesses. Increasing the recognition of T1DM, by integrating with current diabetes awareness campaigns could prove to be a cost effective mode of spreading information.
Diabetes can be a complicated illness, and teachers need to be made comfortable in dealing with it. Parental involvement and administrative support are integral in providing teachers with the necessary knowledge and confidence. As was described by one of the participants, teachers may be “afraid” of the responsibility attached to having a diabetic student, and may restrain them from participating in certain regular class activities. However, this does not benefit the child, but rather acts as a hindrance to normal social experiences. Children with chronic illness typically strive towards normalcy14
, and segregating them from peers only adds to this challenge. Clear communication between parents and teachers is important but not always sufficient.
Future policy should aim to provide a protocol for diabetic children in schools, which informs all teachers and administrators. A protocol would need to cover not only basic information about diabetes, but also designated options for when students' sugars are too high or too low. This study reinforced the conviction that medical professionals are held in high regard in Ghana.9
Information provided by doctors and nurses to schools, has the potential to be persuasive and effective. Community nursing staff, and medical students are two options for informing schools on diabetes.
The financial burden of diabetes in Ghana impacts families on a multitude of levels. It devours incomes, and takes away funds from other family members. It consumes time, energy and opportunities for income generation. It heightens distress levels and it limits the manageability of diabetes. The extensive financial costs result in many Ghanaians not receiving adequate treatment, if any treatment at all. It is well established that the secondary illnesses brought on by poor diabetes management, while often covered by insurance, are much more costly. Proper diabetes care from the outset is not only humane, but a financially sensible policy for governments.
Policy change, reducing the costs of diabetes care in Ghana, for example eliminating import taxes, are not yet feasible3
, however, that does not mean that families are helpless. One relatively simple change that can reduce the time and transportation costs of families would be for pharmacists to provide a selection of insulin brands.
Participants generally agreed upon an increase in support from the GDA for youth with diabetes. Information and events geared at youth with T1DM would require significant volunteer efforts, and if families are short on time, this might not be an immediately feasible goal. The development of informal support groups, as was created by the expert informant and one of the families interviewed, integrated with community health workers would provide accessible and legitimized social care for families. Local support groups for adults have been increasing in the past few years, and have reportedly been beneficial.15
Access to information poses a challenging task. illustrates misconceptions held by youth interviewed on how T1DM is developed. Many participants believed that it was their own poor diet which brought on their illness. Placing the blame of the child or parents is dangerous to family well-being, and contributes to feelings of guilt and stress. Greater access to accurate information would alleviate these unnecessary burdens, could improve care, and provides a greater body of knowledge for families to draw from. While some families found internet sources very useful, most families in Ghana do not have regular access to the internet, and require other forms of information transmission. Assisting families with access to appropriate diet plans, carbohydrate counting lists, and the experiences of other families with diabetes is highly recommended for diabetes care in Ghana.
Results of the diabetes quiz with child and youth participants