By Taylor Hansen
Increasingly, “patient-oriented research” is being recognized as essential to creating meaningful changes to the health care system that positively impact the lives of patients. In patient-oriented research, patients and their families are valued as experts in their own experiences and their knowledge can shape every stage of the research process, from the initial design of the project to putting its results into practice. While researchers have extensive knowledge about their research area and important expertise on how to conduct research, patient-partners can contribute a perspective that too often is overlooked (e.g., pointing out challenges or solutions that may only be apparent to patients and families).
The BRIGHT Coaching Program aims to support parents of preschool-aged children who are waiting for services to support their development (e.g., early intervention, hearing and speech services, and occupational therapy). We are currently conducting research to determine if the program is effective in better meeting parents’ needs during this often stressful time.
From the beginning, this program was created with the help of a dedicated Parent Advisory Council including parent-partners from four Canadian provinces, including Nova Scotia. These parents have gone through the process of waiting to access developmental services for their own children and know first-hand how challenging this time can be for families. Their expertise on what parents need to feel more empowered and supported during this often stressful time has shaped every stage of the program’s development and associated research.
I always appreciated the opportunity that my role as a psychologist gave me to interact with patients and families, but before being involved in the BRIGHT Coaching Program I hadn’t had many opportunities to work with them as research partners. The experience and insights that parent partners have brought to this project have been critical in developing a program that considers the needs and realities of the families we hope to help. This project has left me with no doubt that in order for health research and system change to meet the needs of patients and families, it is imperative that we meaningfully listen to and involve them.
Dr. Jillian Filliter
From parent partners, we have learned just how important having flexible scheduling and meeting families where they are is, and we are all feeling this even more during the uncertain times associated with the COVID-19 pandemic. So many families need support, but are already overextended and may only be able to meet in the evenings or schedule a call the same day. Using an online and telephone coaching support system the BRIGHT Coaching Program is able to offer this and our coaches work with families around meeting their scheduling needs.
The program also allows families to receive support in their homes and not have to worry about travelling or arranging child care. They can simply pick up the phone and connect with their coach. In Nova Scotia, many families live in isolated rural areas and accessing services can be a real challenge. The BRIGHT Coaching program aims to help with this by bringing support to those who may otherwise not be able to access it.
While we are currently conducting research to evaluate the outcomes of the BRIGHT Coaching Program, partnering with parents and valuing their expertise has helped us to develop a program that we believe places families’ needs at its core.
We are still recruiting for this project, if you would like to learn more you can visit:
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