Carers' Experiences, Needs, and Preferences During Inpatient Stroke Rehabilitation: A Systematic Review of Qualitative Studies

Abstract

Objective: To report and synthesize the experiences, needs, and preferences of carers of stroke survivors undergoing inpatient rehabilitation.

Data sources: MEDLINE, CINAHL, Embase, PsycINFO, and Web of Science were searched to March 2016. Reference lists of relevant publications were searched. No language restrictions were applied.

Study selection: Eligible qualitative studies reported the experiences of carers of stroke survivors who underwent inpatient rehabilitation. The search yielded 3532 records; 93 full-text publications were assessed for eligibility, and 34 documents (33 studies) were included. Comprehensiveness of reporting was assessed using the Consolidated Criteria for Reporting Qualitative Health Research framework.

Data extraction: Data on the characteristics of included studies were independently extracted by 2 authors. Differences in data extraction between authors were resolved through discussion or by a third author. All text in studies' results and discussion sections were extracted for analysis.

Data synthesis: Extracted texts were analyzed inductively using thematic synthesis. Seven analytical themes were developed that related to the carers' experiences, needs, and preferences: (1) overwhelmed with emotions; (2) recognition as a stakeholder in recovery; (3) desire to be heard and informed; (4) persisting for action and outcomes; (5) being legitimate clients; (6) navigating an alien culture and environment; and (7) managing the transition home.

Conclusions: This systematic review provides new insights into the experiences, needs, and preferences of carers of stroke survivors undergoing inpatient rehabilitation. Carers experienced distress as they navigated a foreign culture and environment without adequate communication and processes in place for their inclusion. We recommend deliberate efforts to provide a more inclusive environment that better supports and prepares carers for their new role.

Keywords: Caregivers; Qualitative research; Rehabilitation; Review; Stroke.