This App will enable caregivers to access patient care guides, written and audio-visual, generated in a culturally-sensitive manner. The aim of this program is to 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. Once launched, we hope to expand to other regions.
Many of the HD families live in conditions of extreme vulnerability and in areas with difficult access or away from large medical centers that can provide expert assistance. Most affected patients are cared for by their spouses or in many cases, their young children. Given the complex manifestation of the disease and its impact on the family unit, a long-lasting process of educating family members so they can better assist their families is crucial to the health of the entire community.
The caregivers educational resources APP will enable caregivers to access, at their convenience, a holistic management approach for the disease symptoms. Together with home visitations and training of family members by professionals, in the areas of nursing, psychology, nutrition, physical therapy for example, the APP will empower and relieve the caregivers. Through the APP, caregivers will conduct a survey to enable a focused approach and their levels of fatigue to access relevant guidance.
The program encompasses three training modules, adapted to the educational background of the caregivers, and monitored by the various health professionals, depending on the needs of the patient in question. The training modules include written and audiovisual materials made when possible with in-person visits.Online workshops and home visits to offer talks that include recommendations will relieve and empower caregivers in Colombia to start then rolled out to other countries, reaching many more.
This project has provided additional documentation in a XLSX file (projdoc.xlsx).