Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis
| Autor: | Susan M. Maixner, Henry L. Paulson, Slande Alliance, Melissa J. Armstrong, Angela C. Taylor, Pamela Corsentino |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
Lewy Body Disease
Male Gerontology Health Knowledge Attitudes Practice Palliative care Attitude of Health Personnel media_common.quotation_subject Context (language use) behavioral disciplines and activities Article Interviews as Topic 03 medical and health sciences 0302 clinical medicine Qualitative analysis mental disorders medicine Humans Family Quality (business) Qualitative Research Quality of Health Care media_common Terminal Care 030214 geriatrics Dementia with Lewy bodies business.industry Communication General Medicine Continuity of Patient Care medicine.disease United States nervous system diseases Hospice Care Caregivers Quality of Life Female business End-of-life care 030217 neurology & neurosurgery Health care quality Qualitative research |
| Zdroj: | Am J Hosp Palliat Care |
| ISSN: | 1938-2715 1049-9091 |
| DOI: | 10.1177/1049909119897241 |
| Popis: | Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States. Methods: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care. Results: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice. Conclusion: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|