The right of minors with Type 1 diabetes to participate in medical decision-making

Abstract

Emphasis on the active involvement and participation of minors has increased and should also be reflected in the health care setting. This study assesses the involvement of minors in medical decisions and treatment adherence to Type 1 diabetes based upon four objectives, namely identifying the models of participation of minors to understand better their involvement in medical decision-making; assessing children and youth involvement in decisions having to do with Type 1 diabetes management; assessing children and youth self-care in the treatment adherence of Type 1 diabetes; and making relevant recommendations aimed at improving the participation of children and youths in medical decision-making and treatment adherence. Adopting a cross-sectional survey research design, data was collected by means of two validated face-to-face questionnaires, the Decision-Making Involvement Scale (DMIS) and the Self-Care Inventory (SCI). A representative sample population of seventy-five minor patients with Type 1 diabetes, aged eight to sixteen years and a parent/guardian attending the paediatric outpatients clinic at Mater Dei Hospital were gathered based on the set criteria and their assent/consent to participate in the study. With a majority of the data collected being quantitative, the use of the computer software Microsoft Access and Microsoft Excel aided in transposing the data into figures and presented in tables and graphs. The qualitative data retrieved from certain open-ended questions, observations made from being present during the clinic appointment and the advantage of face-to-face questioning were classified accordingly and presented with excerpts from the participants. Findings indicated that the minors under study are aware of the daily tasks involved in treatment adherence and that influences such as, school and peers may be hindering their self-management skills. Moreover, as the minor’s development stage enables a shift of responsibility from parent to child, family communication may greatly influence the participatory role a minor can play in the decision-making of Type 1 diabetes management. With the minor being given more opportunity to express and seek, as the parent seeks to listen and support, the right of minors to participate is enhanced independent of who makes the final decision. The study revealed both strengths and limitations, mostly associated with the research design chosen. Recommendations for increased human resources, increased awareness of Type 1 diabetes, changes in health care policy and further research, may ultimately enhance the right to participation, giving minors the opportunity to become active agents in their own lives, have a voice which will be listened to, respected and given its due weight whilst also being entitled to the necessary protection due their relative immaturity and youth.