Hui: a partnership in practice in familial hypercholesterolemia
Jocelyne Benatar1, Tara Evile2, Helen Wihongi3
1Auckland District Health Board, Auckland.
The New Zealand Medical Journal
|September 30, 2020
Summary
Familial hypercholesterolemia (FH) management was improved by empowering whānau with a dedicated social media platform for screening and treatment information. This approach fostered health equity and increased FH screening uptake.
Area of Science:
- Genetics
- Cardiovascular Disease
- Public Health
Background:
- Familial hypercholesterolemia (FH) is a common genetic disorder leading to premature heart disease and death.
- Current screening methods for FH often rely on index patients and may not fully engage extended families (whānau).
- Addressing the needs and views of the entire whānau is crucial for equitable FH management.
Purpose of the Study:
- To empower a large whānau with a history of severe premature heart disease and familial hypercholesterolemia (FH).
- To establish a collaborative approach for managing FH within the whānau.
- To ensure present and future generations receive appropriate screening and treatment for FH.
Main Methods:
- Conducted broad consultations with the whānau.
- Organized a Hui (meeting) to discuss FH management strategies.
- Created a private social media page with FH information and a family tree (with consent).
Main Results:
- The whānau gained ownership of their health information and management.
- Facilitated by health professionals, the initiative led to increased screening and treatment uptake for FH.
- Whānau members became informed advocates, able to educate local health professionals about their condition.
Conclusions:
- Empowering whānau with control over their health information is vital for achieving health equity in FH management.
- A partnership approach, incorporating whānau perspectives, enhances FH screening and treatment.
- A national systematic program is necessary for effective, long-term management of FH to prevent adverse health outcomes.
