title: Social participation following right hemisphere stroke: Influence of a cognitive-communication disorder.
Creators: name: Hewetson, Ronelle
Publisher: name: Griffith University
Year: 2018
Subjects: subject: Impact of aphasia
subject: Social isolation risk
subject: Communication impairment
subject: Cognitive-communication disorder (CCD)
subject: Right hemisphere (RH) stroke
subject: Social participation restriction
subject: Impaired social cognition post RH stroke
subject: Rehabilitation goals

description: Background The ability to communicate is essential for engaging in social roles and maintaining relationships. Communication effectiveness or style may change suddenly following a stroke, and create negative consequences related to role engagement and relationship maintenance, which in turn may affect quality of life (QoL). A social isolation risk emerges, which has been explored for people with the communication impairment of aphasia. In response, the speech pathology community has been generating research about the impact of aphasia and establishing clinical service provision guidelines to ensure access to communication focussed rehabilitation. At present, however, the variable influence of a cognitive-communication disorder (CCD) arising following right hemisphere (RH) stroke on social role and relationship maintenance has not received equitable speech pathology research nor clinical interest. The dearth of evidence is surprising as CCD occurs with similar frequency to aphasia, and the impairments that arise may alter both communication effectiveness and style. This thesis supports the statement by Margaret Blake that “work is needed to right this ship that is listing to the left” (Blake, 2016, p. 64) by exploring long-term outcomes following a RH stroke. Research aims The primary objective of the research was to explore social participation in the presence of a RH stroke, with a focus on risk factors for social participation restriction and the significance of participation change related to relationship maintenance and quality of life. Three aims were addressed, namely to 1) determine perceived change in social participation as reported by people with RH stroke (self-report) and significant others (proxy-report), to 2) explore risk factors for, and the ability of routinely administered acute-stage screens to predict, social participation restriction in people with a RH stroke, and lastly to establish the significance of the change by 3) exploring the relationship between social participation, social network change and quality of life in those with a CCD characterised by impaired social cognition. Methodology This research used a mixed methods approach, in which sequential explanatory and concurrent triangulation typologies allowed for exploration of aims across studies. A number of data collection and analysis methods were used. Firstly, a telephone survey, utilising the Sydney Psychosocial Reintegration Scale (SPRS-2), was conducted with 36 people with RH stroke and 33 significant others. Analysis allowed for description of social participation change, and comparison of reported change based on the presence or absence of CCD. Participant-proxy agreement was furthermore determined. The second aim was addressed in a two-step process, firstly through a retrospective chart audit of 115 consecutively admitted patients with stroke that allowed a description of frequency of CCD and access to rehabilitation in comparison to people with aphasia. This was followed by establishing the sensitivity and specificity of routinely administered screens of cognition and communication related to predicting future social participation in people with RH stroke. The third aim explored the impact or significance of social participation change, which was addressed through a multiple-case study method. Propositions related to changes in social networks, relationships and quality of life were confirmed or refuted for seven cases, drawing on multiple data sources including semi-structured interviews with participant-proxy dyads, and completion of a number of scales. Key findings The majority of participants with RH stroke (94.4%, n = 34) reported change in at least one SPRS-2 domain. The presence of CCD, however, had an impact on social participation as reported on the SPRS-2, which was significantly different to what was reported by participants without a communication impairment (p = 0.02). Inter-rater agreement indicated a fair participant-proxy dyad agreement in the group with CCD (kappa = 0.36), and a moderate agreement in the group without CCD (kappa = 0.43). CCD (66% of RH stroke group, n = 58) was diagnosed with similar frequency to aphasia (68% of LH stroke group, n = 57), and hospital discharge with ongoing communication impairments was comparable. People with CCD were less likely to be referred for ongoing community-based rehabilitation than people with aphasia. A comparison of acute hospital administered screening measures revealed that a communication screen was more sensitive in predicting who would experience changes in future social participation (77% accurately identified) than an executive function task (54%) and a global cognition screen (50%). The communication screen; that considered lexicalsemantics, discourse, prosody and pragmatics, also yielded the fewest false negatives. Lastly, the significance of social participation change was explored by considering changes to relationships, social roles and networks and perceptions of QoL. People with impaired social cognition post RH stroke experienced social network change, with a reduction in network size reported by 71.4% (n = 5). The loss of friends accounted for the greatest reduction in network size. Interpersonal relationship change was reported often (n = 6, 85.7%), with potential contributors to relationship change including altered personality, communication style and spousal roles. All participant-proxy dyads reported that QoL changed because of stroke, which was most apparent where valued social roles were lost. Energy, personality, thinking and family roles were the domains reported to be most affected on a QoL scale. Conclusions and recommendations This synthesis of qualitative and quantitative findings highlights the risk of social participation change that exists following a RH stroke in the presence of CCD. The research also provides the first description of the multifactorial process and experience of returning to and maintaining relationships, social roles and networks in the presence of CCD characterised by social cognition impairment. Addressing unmet social participation needs by improving social connectedness should form part of rehabilitation goals for people with RH stroke and those within their social networks. An exploration of social isolation risk factors present during the acute-stage post RH stroke is required to better inform rehabilitation timing and focus.