51. Development of a Bereaved Care Partner Survey to Capture the ALS Supportive Care Experience.
- Author
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Tang, Janette, Lomen-Hoerth, Cathy, Galea, Marinella D., Lindenberger, Elizabeth, Brizzi, Kate, Cohen, Eve, Long, Judith, Meister, Sarah, Merrill, Gregory, Pantilat, Steve Z., and Bischoff, Kara E.
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AMYOTROPHIC lateral sclerosis , *SOCIAL workers , *CAREGIVERS , *DELPHI method , *NONPROFIT organizations - Abstract
1. Understand the modified Delphi process used by a multisite, interdisciplinary group to develop and test a novel bereaved carer survey tool. 2. Consider how bereaved carer surveys can be used to assess the quality of care received and identify areas in need of improvement. Through a modified Delphi method, we developed a 29-item bereaved care partner survey tool for amyotrophic lateral sclerosis (ALS) to understand the quality of the supportive care received throughout the illness. We are currently testing it and anticipate that it can be used broadly to assess the quality of supportive care received and identify areas for improvement. Current bereaved caregiver surveys focus primarily on the experience with care in the final days of life. We sought to develop a novel bereaved care partner survey tool for those who lost a loved one to amyotrophic lateral sclerosis (ALS) that assesses their experience with care provided throughout the illness by ALS and palliative care (PC) clinicians, in order to understand and improve quality of care. Using a modified Delphi method, we developed a survey tool with input from a diverse panel of 7 ALS and PC physicians, 1 nurse, 1 social worker, 2 chaplains, 1 advocate, and 2 caregiver representatives from 3 institutions and a non-profit ALS advocacy organization. The panel: 1) reviewed existing bereaved carer surveys, 2) brainstormed domains and questions to include, 3) honed these through two iterative rounds of review, and 4) refined the instrument through editing. The survey was piloted with 3 bereaved caregivers to ensure clarity and test its length. The final survey tool includes 17 core items and 9 brief demographic questions. Questions inquire about whether patients and carers received adequate help with: physical symptoms, emotional and practical needs, education, preparing for what was to come, and bereavement. Questions also asked about whether care was: person-centered, culturally-sensitive, and consistent with the patients' values and preferences. During the pilot, all 3 bereaved caregivers agreed that the survey was comprehensive, relevant, and an appropriate length. Through a modified Delphi method, we developed a 26-item bereaved caregiver survey for ALS to understand the quality of the supportive care that patients and carers received throughout the illness. We are currently testing it at multiple sites and anticipate that it can be used broadly to understand quality of supportive care for people with ALS and their carers and identify areas for improvement. Loss, Grief, Bereavement; Quality Improvement [ABSTRACT FROM AUTHOR]
- Published
- 2024
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