Our Research Goals
The University of St. Thomas research team will work with persons with ALS (PALS) and their caregivers (CALS) in order to understand their needs and questions, how those needs and questions change during the course of the disease and what would be most helpful to them in dealing with this devastating disease. By observing professional healthcare providers and interviewing them, we hope to understand how they conceive of their work and the needs of those they are serving. Putting the two sets of data together will help us to identify gaps as well as potential means to better serve people with ALS and their caregivers. The anticipated outcome is to develop educational materials and experiences, particularly decision support tools, that address the needs of all the interest groups especially the PALS and CALS.
Our goals include:
- Identify and understand the needs of persons with ALS (PALS), their personal caregivers (CALS) and their professional caregivers (health care and non-profit).
- ALS offers an interesting paradigm for deepening an understanding of patient centered care with progressive disease because this disease has at least four significant and different manifestations depending upon where it starts. The manifestation will result in different expectations, options and outcomes for each patient that requires nuanced tools and processes in a patient-centered care practice.
- Of particular concern is the impact of executive functioning in a significant number of PALS. What tools and processes might be most useful to patients whose disease manifests itself with cognitive impairment? How does patient-centered care need to account for this impairment?
- Conduct a comprehensive review and analysis of current ALS materials, websites, and clinics used by PALS and CALS.
- Written materials are currently “one size fits all” which does not account for the different experiences of patients. PALS report difficulties in “finding themselves” in the resources that are available through official ALS sites.
- Materials are primarily written from a medical perspective. Preliminary data documents the frustration of patients to find answers to the questions that matter most to them as well as anger at the attitude of the patient as the recipient of knowledge rather than a collaborative partner in care decisions.
- Document the differences between the needs of PALS and CALS and the resources available to them. Once we have a sense of the flow of needs and desired outcomes for PALS, the assessment will focus on how current resources address patient priorities. Which resources need to be revised? What needs to be developed?
- Develop decision-making tools and educational processes based on the findings of this study that will better inform, activate and assist PALS and CALS in managing the disease. This will include but not be limited to decision-making tools and processes about living space, finances, work, medication (plus supplements and alternatives), ventilators, feeding tubes, assistive communication devices, energy, hospice care and communication.
- Develop directional strategies (including instruments and educational processes) that will be useful to health care providers in working with PALS and CALS to identify patient priorities and help them to achieve their desired outcomes.
- Field test decision-making tools and educational processes with PALS, CALS and health care providers and modify as needed.
- Disseminate new and revised materials through ALS Association and ALS Association Clinics of Excellence and develop training modules through the University of St. Thomas.
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Thank you for choosing to support this fund. At this time, gifts of any size will be doubled, thanks to a $20 million matching fund created by the university's Board of Trustees to support the Opening Doors capital campaign. This opportunity remains available until the end of the campaign (Oct. 17) or until the matching fund is exhausted – whichever comes first.
For a gift of $1,000 or more, the match will go to the ALS Fund if you so choose. For a gift of under $1,000, the trustees will make a gift of equal size to the university's scholarship endowment. All eligible gifts will be matched when the matching funds are received by St. Thomas. Thank you for your support!
100% of donations will be used for this research project.
All donations are tax-deductible.