Caregivers Training Program (In person and App)

Factor-H has established formal collaborations with the University of Antioquia and the University of Medellín in Medellín (State of Antioquia), and the University Metropolitana (Barranquilla, State of Atlántico) to assist caregivers and the patients we directly support in Colombia (currently >130 families).

Our employees work only in defined regions of Colombia and we are presently unable to support other families in most of the country. Many families throughout Colombia live far away from centers with experience in HD care (located in the large urban centers in the country) and have little support to manage the many complications families experience at the various stages of the disease. Because of our field work and our ongoing collaboration with specialized HD centers and medical professionals, we have defined key areas for intervention at a broader scale, based on our understanding of the many problems HD families, and caregivers in particular, experience throughout Latin America. The objective is to start launching this program in Colombia, but with an aspiration to quickly apply this methodology to other countries.

The goal of this caregiver’s program is to strengthen the capabilities of informal caregivers and promote best practices of care for the patients, which change during the progression of the disease. The caregivers’ program aims to create an organized safe space where caregivers can be provided with a holistic management approach for the disease symptoms in a home setting, which often times is of a very basic nature due to the impoverished conditions that many families experience. The approach is two-fold: 1) to conduct in person training for caregivers, starting with the families already affiliated with Factor-H on the Caribbean Coast of Colombia, and in Antioquia State. This aspect will be coordinated by our social workers together with medical professionals from University of Antioquia and University Metropolitana. 2) To generate a phone- and web-based app to facilitate training in basic care practices, exercises to improve mobility for the patient at all stages of the disease, as well as advice about nutrition, psychological support, and as a way to remain engaged directly with professionals via an ASK ME functionality in the App. A multi-disciplinary team of health professionals is already in place at the University of Antioquia. The App is a digital instrument that will enable caregivers to access patient care guides (written and audio-visual) generated in a way that is culturally sensitive to local customs. The App has been designed as a collaboration between IT engineers from the University of Medellín and a private hosting corporation, Ingrapes SAS.

We are in the process of finalizing fundraising for the completion of all of the App modules and launching it broadly in Colombia. Eventually we hope to extend it to other Spanish speaking countries.

Our methodology includes three distinct phases: an initial phase to establish a baseline of knowledge about individual patients and caregivers; a second phase to implement a set of training modules including health management and caregiver support; and a follow-up phase for the caregivers. The initial focus will be on the families within the orbit of Factor-H and affiliated institutions and patient associations in Colombia (currently 109 families on the coast + 26 families in Antioquia). Additional families will be added once identified and consent forms are obtained, if families want to be contacted via the App. Regardless, all interested individuals will be able to assess care information through the App.

Specific Objectives

• Establish training courses for health professionals in areas relevant to the care of the HD patient, which can be easily used by local health professionals in regions far from established clinical centers of excellence in HD.
• Establish training courses for family caregivers to guide best care practices at all stages of the disease.
• The design and management of the phone and web-based app to facilitate questions and answers between family members and health professionals.
• Organize home visits and in-person training for family members, including in topics relevant for patients in conditions of complete dependen In particular, the areas of nursing, psychology, nutrition and physical therapy will receive special attention. Home-visits will include hands-on training by professionals, as well as training about the phone App and through videos. We will also be distributing educational brochures and instructions in case of emergencies.

Modules currently included in the app

• Basic education module: survey includes information about the caregiver, socio-economic conditions of the household, characteristics of the patient and stage of dependency. Also includes basic education about Huntington’s disease.
• Nutrition module: personalized survey that include the patient’s weight & height, dental condition, problems with swallowing, accessibility to food sources, food preferences, allergies, as well as recommendations for improvement nutritional aspects of care.
• Physiotherapy module: movement assistance; fall prevention; minimizing risks at home; assistance for dressing, showering, bathing, etc.; late-stage patient care once bedridden.
• Education about the Colombian health system module: navigating the health care system (public and private); how to claim a patient’s rights under Colombian law; how to claim the disability pension; how to claim the age-based pension scheme; part of the module includes access to free legal assessment from the team at the university of Antioquia.
• Caring for the caregiver module: application of the Zarit Scale to determine level of caregiver fatigue and strategies to diminish fatigue.
• Caring at home module: education about accident prevention at home; best practices in high-risk situations, choking while eating, in situations of aggressive behavior, what to do if a patient runs away, etc.
• Panic button: functionality to facilitate access to emergency assistance