Event Title

Filling in the Gap: A South African Study on Young Caregivers and ALS

Mentor 1

Melinda Kavanaugh

Location

Union Wisconsin Room

Start Date

28-4-2017 1:30 PM

End Date

28-4-2017 4:00 PM

Description

South Africa has a population of a 55 million people. There are an unknown number of families across South Africa with Motor Neuron Disease (MND) also known as Amyotrophic Lateral Sclerosis (ALS). ALS is a progressive neurological disease where the nerve cells are destroyed and causes disability. Some symptoms include muscle weakness, overactive spasms, fatigue, impaired voice, difficulty swallowing, mild cognitive impairment, shortness of breath and severe unintentional weight loss. This ultimately causes the disease to become fatal. Currently there is no cure but there is medication available that can prolong the disease. While the incidence of ALS among the United States is 2 per 100,000, in South Africa these numbers remain unknown. Providing care, many young caregivers, ranging in age from 8-18, are involved in personal, physical, emotional and/or intimate care for family members with ALS. While working alongside UWM Assistant professor Melinda Kavanaugh, and two other students were given the opportunity to assess young caregivers and their family member with ALS. During the two weeks in country, we took notes, kept a journal, and discussed our experiences daily with Dr. Kavanaugh. We completed 20 family interviews, in both Capetown and Johannesburg, South Africa. Purpose: The goal of this exploratory pilot project was to provide baseline data for long-term projects and research on a previously unknown population, ALS families in South Africa and their young caregivers, ages 8-18. Methods: One on one interviews were conducted with the adults and youth at MND clinics and family homes in both the Capetown and Johannesburg areas. Each interview lasted approximately 30-45 minutes. All interviews were tape recorded for future qualitative analysis. Results: Data revealed extreme time youth spent on caregiving. Youth spent an average of 24 hours a week providing cares to family members, with 65 percent never receiving any caregiving training. Parents were aware of intensity of youth caregiving, but felt they had no choice, while youth felt a strong responsibility for care. Culture and stigma played a large role in knowledge of illness and need for care. Further details will be shared in the poster presentation as results are still being analyzed. Conclusion: Findings suggest that there are potential barriers around patient knowledge, as well as how patients communicate needs, illness and progression to their young caregivers and family members. Understanding these differences can allow potential support programs to be implemented, and provide the development of essential education and critical conversation building among families diagnosed with ALS and their young caregivers.

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Apr 28th, 1:30 PM Apr 28th, 4:00 PM

Filling in the Gap: A South African Study on Young Caregivers and ALS

Union Wisconsin Room

South Africa has a population of a 55 million people. There are an unknown number of families across South Africa with Motor Neuron Disease (MND) also known as Amyotrophic Lateral Sclerosis (ALS). ALS is a progressive neurological disease where the nerve cells are destroyed and causes disability. Some symptoms include muscle weakness, overactive spasms, fatigue, impaired voice, difficulty swallowing, mild cognitive impairment, shortness of breath and severe unintentional weight loss. This ultimately causes the disease to become fatal. Currently there is no cure but there is medication available that can prolong the disease. While the incidence of ALS among the United States is 2 per 100,000, in South Africa these numbers remain unknown. Providing care, many young caregivers, ranging in age from 8-18, are involved in personal, physical, emotional and/or intimate care for family members with ALS. While working alongside UWM Assistant professor Melinda Kavanaugh, and two other students were given the opportunity to assess young caregivers and their family member with ALS. During the two weeks in country, we took notes, kept a journal, and discussed our experiences daily with Dr. Kavanaugh. We completed 20 family interviews, in both Capetown and Johannesburg, South Africa. Purpose: The goal of this exploratory pilot project was to provide baseline data for long-term projects and research on a previously unknown population, ALS families in South Africa and their young caregivers, ages 8-18. Methods: One on one interviews were conducted with the adults and youth at MND clinics and family homes in both the Capetown and Johannesburg areas. Each interview lasted approximately 30-45 minutes. All interviews were tape recorded for future qualitative analysis. Results: Data revealed extreme time youth spent on caregiving. Youth spent an average of 24 hours a week providing cares to family members, with 65 percent never receiving any caregiving training. Parents were aware of intensity of youth caregiving, but felt they had no choice, while youth felt a strong responsibility for care. Culture and stigma played a large role in knowledge of illness and need for care. Further details will be shared in the poster presentation as results are still being analyzed. Conclusion: Findings suggest that there are potential barriers around patient knowledge, as well as how patients communicate needs, illness and progression to their young caregivers and family members. Understanding these differences can allow potential support programs to be implemented, and provide the development of essential education and critical conversation building among families diagnosed with ALS and their young caregivers.