Bridging the Research Gap
From a medical perspective, the face of cystic fibrosis (CF) has changed dramatically over the last 20 years. Procedures for earlier diagnosis and an advanced range of treatments have meant that a substantial number of people with CF are now living well into adulthood.
However, while knowledge of CF has grown in the medical community, it is apparent there are still substantial gaps in the knowledge of professionals in the mental health community in understanding how CF impacts adolescents and young adults, and their families.
While a number studies have been conducted in the United States and parts of Europe examining how adolescents, young adults, and their families are coping with CF, fewer have been conducted in Australia.
Griffith University PhD graduate, Dr. Kaya Beinke, made it her goal to begin to bridge this gap!
Over the last 4 years, Dr. Beinke conducted a large three-state research project which examined coping and communication in families with adolescents and young adults living with CF. This research also included a component which examined knowledge and understanding of CF in the general community.
One of the key findings from this research was that problems in adolescents’ and young adults’ communication with their parents were related to increased levels of depression, anxiety, stress, and decreased levels of positive emotions and hope for the future.
This research also investigated why communication problems arise in the first place. One factor that was found to impact communication was a mutual negativity about CF between young people and their parents (e.g., believing treatments are not effective or that there are many financial and social costs associated with CF).
From the component of Dr. Beinke’s research which examined knowledge and understanding of CF in the general community, it was found that community knowledge of CF was very limited. While most people surveyed were able to identify that CF was a genetic disorder, very few people had a good understanding of the symptoms associated with CF, or the implications of living with CF.
A positive finding from this component of the research was that when people in the general community are given a description of someone with a phlegmy cough taking and taking a number of medications, that person is rated more favourably when CF is given as the reason for the symptoms, in comparison to someone giving “having allergies” as the reason.
Thus, in addition to increasing understanding of the family dynamics associated with coping with CF, Dr. Beinke’s research can also help individuals decide whether to disclose that fact that they have CF to people such as employers, friends or colleagues.
It is now Dr. Beinke’s goal to be able to provide individuals and families with guidance on how to open communication channels and to provide strategies to enhance all family members’ psychological adjustment.
