Accepted for/Published in: JMIR Nursing
Date Submitted: Oct 25, 2023
Date Accepted: Feb 12, 2024
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
A Novel Digital Environmental Scan of In-Home Respite Care Services Available to Families with Palliative Care Needs in Quebec
ABSTRACT
Background:
Caregiving dyads in palliative care are confronted with complex care needs. Respite care services can be highly beneficial in alleviating the caregiving burden, supporting survivorship and dying at home. Yet, respite care services are difficult to locate and access in the province of Quebec, Canada, particularly when navigating ubiquitous sources of online health information of varying quality.
Objective:
This project aimed to: (a) compile a list of at-home palliative respite care services in Quebec, Canada, (b) describe key accessibility features for each respite care service, (c) identify accessibility gaps and opportunities, and (d) describe a novel method for conducting environmental scans using Internet search engines, online community health databases, and member checking.
Methods:
A novel environmental scan methodology utilizing two online targeted databases and one Internet search engine was conducted. Results were screened, and data were extracted, descriptively analyzed, and geographically schematized.
Results:
Four hundred and one services were screened, and fifty-two at-home respite care services specific to palliative populations were identified, compiled and analyzed. These respite care services were characterized by various types of assistance, providers, fees, and serviced geographical regions. Accessibility, through the lens of service amenability, availability, eligibility, and compatibility was explored. The data revealed important barriers to accessing respite care services, such as a lack of readily available information on service characteristics, limited availability, and a time-consuming, technical search process for potential respite care users and clinicians to identify appropriate services.
Conclusions:
Both methodological and contextual knowledge have been gained through this environmental scan. Few methodologies for conducting online environmental scans have been clearly articulated, so we applied several learnings from other scans and devised a methodology for conducting an environmental scan using the mixed methods of internet search engines, online community health databases, and member checking. We have carefully reported our methods, so that others conducting community health environmental scans may replicate our process. Furthermore, through this scan, we identified assorted respite care services and pinpointed needs in the provision of these services. The findings highlighted more easily accessible and centralized information about respite care services are needed in Quebec. The data will enable the creation of a user-friendly tool to share with community support services across Quebec, and ultimately help alleviate the added burden caregivers and clinicians face when looking for respite care services in fragmented and complex digital spaces.
Citation
