The complexity of rare diseases makes communication between adults involved with the care of these children a vital tool. Communication and mutual trust are of the utmost importance.
About the Study
Patients were recruited through the Spanish Rare Disease Federation. Prerequisites called for participants (mothers and fathers), to be regularly attending their children’s checkups and that the children’s diseases cover a wide range of involvements.
Eighteen parents volunteered to participate in the study and ten were chosen. The study’s psychologist sent a brief summary of the focus and goals of the study followed by a written summary of the project.
The goal of the study was to examine the effect of communication on the lives of the young patients calling it ‘adjustment of mutual trust’ a two-way process: parents’ trust in the doctors and the doctor’s trust in the parents.
Yet the authors show how fragile that trust can be when, as one example, the doctor fails to acknowledge an error.
Participants were invited to answer questions about their communication experiences with health professionals and the influence these conversations had on the patients. Responses could be given by email or phone.
The authors chose a category of ‘adjustment and mutual trust.’ This involves the behavior and attitude of doctors that parents trust.
Parents Speak Out
Several parents indicated that it seemed the doctors forgot they were treating a child. They pointed out that this type of treatment can result in an emotional setback for the parents and their children.
On the other hand, trust occurs when the doctors acknowledge the parents’ burden, their uncertainties, and at times their sense of guilt.
Results
Participants agreed on a few ideal characteristics. Parents will have trust in a doctor to the extent that the doctor expresses even a ‘touch’ of empathy.
The study confirms the importance of doctors showing respect, and compassion, providing emotional support, and treating parents as human beings.
Parents expressed their desire for the doctors to understand their feelings toward their child’s illness. They hope to see the doctors going beyond the clinical aspects of their child’s disease.
The study shows that parents trust doctors who offer encouragement but avoid false hope.
This is true as found in a separate study that involved pediatric patients facing death. Some parents felt that the doctor hid certain aspects of their child’s disease in order to keep the parents optimistic. However, this approach only weakened the trust in their doctor.
Conversely, parents have a high level of trust in a doctor who admits that he or she is not familiar with all aspects of a disease. Parents also wish to have the doctor acknowledge their status in decision-making as they are more in tune with their child’s wants and needs than the type of knowledge gained through lab tests and doctor’s visits.
Therefore, many parents believed that they should be actively participating in the decision-making process.
Aside from being sensitive, human, and empathetic, it is also helpful to allow transparency and support parents who are proactive. An important characteristic is being open and always available to parents.
When parents begin to feel isolated and alone in their burden, they may find support by joining an association dedicated to their child’s specific disease. This type of support can be invaluable.
The ultimate goal of doctor-parent communication when treating a child with a rare disease is trust. If trust is present, then all parties are working to provide the best possible care for the child.
A message to parents from Patient Worthy: If you identify with the parents described in this article Patient Worthy and our readers would like to hear from you. Patient/Doctor/Parent trust is a work in progress. Please submit your thoughts and experiences here on our website.
To learn more about this study, click here.
