PITCH: Post-Stroke Fatigue: Insights of stroke survivors and their carers from an online forum

Problem

A multitude of unmet clinical and social needs are commonly reported by community dwelling stroke survivors. Concerns about long term post stroke fatigue are often described by survivors, yet healthcare professionals in primary care and beyond currently lack an evidence-based management strategy (1). This must be addressed since fatigue after stroke is a common and debilitating problem adversely affecting survivors’ quality of life, social participation, return to work and mortality. Existing literature suggests that online communities are a source of appropriate and accurate information from stroke survivors and carers. As such, defining post-stroke fatigue (PSF) using this data is a reliable method to enable healthcare professionals to identify patients with clinically significant fatigue who may benefit from further investigation and treatment.

Aim:

This study aimed to unpack the construct of post-stroke fatigue by investigating how stroke survivors and carers described fatigue and coping strategies after stroke in an online forum.

1.Wu S, Kutlubaev MA, Chun HY, Cowey E et al. Interventions for post-stroke fatigue. Cochrane Database of Systematic Reviews. 2015, Issue 7.

Approach

An inductive thematic analysis was conducted using the archives (2004-2011) of a UK based web forum TalkStroke. The term ‘tiredness’ was searched and relevant posts identified. Following coding, the analysis was re-focused at the broader level of themes and initial thematic maps were created.

Findings

65 individuals (including 39 survivors, 27 carers; median age of 54) contributed to 89 forum posts. Initial analysis identified six main themes:

1. “Suffering from tiredness”: medicalization of PSF

2. “Tiredness like no other”: a fatigue unique to stroke

3. “Part and parcel”: acceptance and normalisation of PSF

4. “Unwelcome guest”: fighting PSF

5. “Brain healing”: survivors’ biological explanations and beliefs

6. “Pace yourself”: how survivors manage PSF

Suggestions for managing fatigue reoccurred throughout posts, and may be broken down into further sub-themes, including the involvement of healthcare professionals, adopting lifestyle changes, and separating emotional and physical recovery. We identified tensions between themes of acceptance and fighting PSF in descriptions and management suggestions.

Consequences

Research Progression:

Comparative analysis was undertaken with a second researcher to review and refine emergent themes and produce a thematic map. We are currently working towards producing a report to capture the essence of PSF as a construct, with the intention of developing a comprehensive tool to improve management and outcomes in a primary care setting.

Discussion:

Forum analysis demonstrated the variety of ways in which PSF is understood and communicated by stroke survivors and caregivers, and suggestions made to manage the problem from within the community. This insight is a powerful tool for healthcare professionals given the invisible nature of PSF, and has the potential to inform future primary care interventions to provide effective support for stroke survivors and their caregivers.