Social participation following right hemisphere stroke: influence of a cognitive-communication disorder

Background: The ability to return to social activities and roles is an important focus of rehabilitation for people affected by stroke. Rehabilitation professionals currently have limited evidence on the impact of a cognitive-communication disorder (CCD) following right hemispheric (RH) stroke on social participation, and how to support return to social activities and roles. Aims: This study describes (1) social participation change as reported by people with RH stroke; (2) compares social participation change across two groups based on the presence or absence of CCD following RH stroke; and (3) compares self and proxy reports of changes in participation. Methods & Procedures: A telephone survey was conducted with randomly selected people with first onset, unilateral RH stroke, and with matched significant others (proxies). The Sydney Psychosocial Reintegration Scale (SPRS-2) was utilised to explore change associated with stroke across Occupational Activities (OA), Interpersonal Relationships (IR) and Independent Living Skills (LS). Survey responses were compared utilising independent t-tests across two groups based on the presence or absence of CCD. Participant-proxy agreement was established using inter-rater correlation coefficient. Outcomes & Results: Change in social participation was reported for thirty-six participants with an average age of 65.95 years (SD = 13.09), of whom 58.3% were male and 38.9% employed at the time of the stroke. Time post-stroke to completion of the SPRS-2 ranged from six to 33 months. Most participants (94.4%, n = 34) reported change in at least one of the SPRS-2 domains. The presence of CCD had an impact on social participation as measured on the SPRS-2, which was significantly different to what was reported by participants without a communication impairment post-RH stroke (p = 0.02.) Inter-rater agreement statistic (Kappa) indicated a fair participant-proxy dyad agreement in the group with CCD, and a moderate agreement in the group without CCD across the SPRS-2 domains. Conclusions: Changes in social participation following RH stroke occur across Occupational Activities, Interpersonal Relationships and Independent Living Skills for the majority of people and occur with greater frequency and degree where a CCD is present. This exploratory study highlights the importance of rehabilitation goals that address social participation to reduce potential social isolation in people with CCD post-RH stroke. Further identification of risk factors for social participation restriction in this population is required to better inform rehabilitation timing and focus.