The Palliative Care Information Needs of Patients with Amyotrophic Lateral Sclerosis and their Informal Caregivers: A Scoping Review
| Autor: | Jacqueline Gillespie, Christine L. Watt, Antoine Przybylak-Brouillard |
|---|---|
| Rok vydání: | 2021 |
| Předmět: |
medicine.medical_specialty
Palliative care MEDLINE Information needs Context (language use) CINAHL PsycINFO 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) Health care Humans Medicine 030212 general & internal medicine General Nursing business.industry Amyotrophic Lateral Sclerosis Palliative Care Neurodegenerative Diseases Anesthesiology and Pain Medicine Caregivers 030220 oncology & carcinogenesis Family medicine Quality of Life Neurology (clinical) business |
| Zdroj: | Journal of Pain and Symptom Management. 62:848-862 |
| ISSN: | 0885-3924 |
| DOI: | 10.1016/j.jpainsymman.2021.03.008 |
| Popis: | Context Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease, associated with impaired quality of life for patients and caregivers. As treatment is largely supportive, early involvement of palliative care (PC) is recommended as standard of care. Despite this, literature surrounding PC information needs is limited. Objectives To explore the PC information needs of patients with ALS and their caregivers and identify gaps in the literature. Methods A scoping review using MEDLINE, EMBASE, CINAHL and PsycINFO databases (2000-2019) was conducted. Articles examining PC information needs as stated by ALS patients and/or current/bereaved caregivers were included. Studies examining other diagnoses and those focused on healthcare workers were excluded. Thematic synthesis was used to summarize and identify prevalent domains and themes in the literature. Results 581 articles underwent primary screening, with thirty-two ultimately included (26 original articles, six reviews). Fourteen examined information needs of both patients and caregivers, 13 caregivers only, 5 patients only. The most common PC information needs were as follows: for patients, disease course/prognosis (n = 10), general disease information (n = 9), decision-making (n = 7) and symptoms (n = 6); for caregivers, services and resources (n = 15), disease course/prognosis (n = 14), general disease information (n = 13) and skills (n = 10). There was substantial variability in information needs, both between patients and caregivers and among members of the same group. Conclusion ALS patients and caregivers have unique and varying PC information needs. Future research should better characterize these needs to improve patient and caregiver quality of life. The delivery of information must be tailored to individual patient or caregiver preferences. |
| Databáze: | OpenAIRE |
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