The App aims isto strengthen the capabilities of informal caregivers and promote best practices of care for the Huntington's disease (HD) patients, including basic care practices, exercises to improve mobility, advice about nutrition, recipes, psychological support, and surveys on caregivers' fatigue. This App will enable caregivers to access patient care guides, written and audio-visual information. Once launched, we hope to expand to other regions.
Huntington's disease is a lethal brain disease. We support 125 HD affected families in Colombia. We know there are many more we can't reach. They have difficult access to specialized medical centers, and care is informal. Patients are cared for by their spouses or their children & caregivers lack training & information. Given the complexity of the symptoms & the impact on the family unit, a strategy to educate & prepare caregivers is crucial to the health of their affected relatives.
The caregivers' educational resources phone-based APP will enable caregivers to access, no matter where they live, AV information to manage symptoms & improve care. The APP will contain modules in the areas of nursing, psychology, nutrition, physical therapy, legal advice, and genetic education. Through the APP, caregivers can conduct a survey to enable a focused approach and record their levels of fatigue, and eventually have a channel to directly engage other families and health professionals.
The program encompasses various training modules, adapted to the educational background of informal caregivers, & monitored by health professionals, depending on the needs of the patient in question. The training modules include guides and AV information relevant to the multidimensional care of HD patients. Online workshops and home visits offer practical advice and know-how to help caregivers in Colombia. We hope to roll the APP to other countries after its implementation in Colombia
