The experience of close personal relationships after stroke: scoping review and thematic analysis of qualitative literature

Abstract

Background and Purpose: Psychosocial difficulties, including changed relationships are among the most pervasive and concerning issues following stroke. This study aimed to collate and thematically analyse qualitative literature describing the experience of close personal relationships from the perspective of stroke survivors. Method: Using a scoping review methodology, four databases (CINAHL/EBSCO, MEDLINE/Pubmed, Embase, Psychinfo) were systematically searched, yielding 3100 citations. Following exclusion of duplicates and screening against inclusion criteria at title/abstract and full text levels, 53 articles were included in the review. Data were charted and thematically analysed. Results: While research has increased since 2000, longitudinal designs are few. Four overarching themes and 12 subthemes were identified. ‘Social disruption’ described changing social worlds, lost social opportunities and shrinking networks. ‘Changed relationships’ included changed family and spousal relationships and changed parenting relationships. The third theme ‘relationships help’ highlighted positive aspects including belonging, support and a life worth living. The final theme was ‘coping with an altered social world’ and described adjustment and emotional responses. Conclusions: Relationships are an important aspect of life post stroke but are subject to changes and challenges. This article brings together a breadth of qualitative data to describe lived experiences. Further research, in particular, longitudinal research is required.

Communication partner training with familiar partners of people with aphasia: A systematic review and synthesis of barriers and facilitators to implementation

“…Aphasia, a language disorder that affects up to 38% of stroke survivors (Berthier, 2005), leads to disrupted communication and relationships between people with aphasia (PWA) and their significant others, including family and friends (Bakas et al., 2006; Croteau et al., 2020; Grawburg et al., 2013; Hallé et al., 2011; McGurk & Kneebone, 2013). For instance, conversations can be perceived by significant others as less elaborated or enjoyable (Blom Johansson et al., 2012), may generate negative emotions including stress or irritation (Grawburg et al., 2013; Le Dorze & Brassard, 1995), and have significant negative impacts on relationships including intimate relationships (Ford et al., 2021; McGrath et al., 2019). To adjust to these changes, significant others sometimes adopt behaviours (e.g., ‘speaking for’) which are intended to be helpful, but are nonetheless correlated with decreased participation of the person with aphasia (Croteau & Le Dorze, 2006).…”

‘What’s next?’ The journey from hospital to community engagement from the perspectives of adults following severe acquired brain injury: a scoping review protocol

“…Return to previous community activities, including leisure and recreational pursuits, and social relationships are frequently disrupted. [17][18][19][20][21][22][23] When exploring this topic, it is important to recognise the additional complexities associated with the physical, attitudinal, communication and societal barriers which can further constrain the ability of people with disability to access and engage in the community around them. 11 24 As people navigate the consequences of their brain injury, it is important to explore the challenges faced.…”

“…Rehabilitation efforts are often focused towards reducing the need for support; however for many, despite these efforts, lifelong support will be required. Return to previous community activities, including leisure and recreational pursuits, and social relationships are frequently disrupted 17–23…”

Developing a Digital Health Intervention for Conversation Skills After Brain Injury (convers-ABI-lity) Using a Collaborative Approach: Mixed Methods Study

“…Cognitive-communication disorders following acquired brain injury (ABI) [ 1 , 2 ] can substantially disrupt a person’s ability to communicate and form and maintain relationships with others [ 3 ] across their life trajectory [ 4 ]. Disruptions in high-level cognitive-linguistic function [ 1 ] lead to conversation difficulties in the domains of topic generation, conversation initiation, inappropriate comments, verbosity, reading and using nonverbal cues, and the complexity of managing simultaneous cognitive and communication demands [ 5 ].…”