Emotional adjustment post-stroke: A qualitative study of an online stroke community

Abstract

Understanding of emotional adjustment after stroke is limited. Under one-third of stroke survivors reporting emotional problems receive support. The aim of this study was to explore the process of emotional adjustment post-stroke and investigate the role played by participation in an online stroke community. We applied thematic analysis to 124 relevant posts within 114 discussion threads, written by 39 survivors and 29 carers. The contribution of online community engagement to emotional adjustment was explored using the Social Support Behaviour Code.Stroke survivors share common experiences of emotional adjustment and may not necessarily reach complete acceptance. Positive and negative trajectories of emotional adjustment were identified.Survivors progressed along, or moved between, positive and negative pathways not in a time-dependent manner but in response to 'trigger events', such as physical setbacks or anti-depressant treatment, which may occur at any chronological time. An adapted version of Suhr's 1990 Social Support Behaviour Code showed that support provided through the online community took many forms, including advice, teaching, empathy and normalisation of concerns. Participation in the stroke community was itself deemed to be a positive 'trigger event'.

Complexity of Participation Post-Stroke: Longitudinal Assessment of Community Participation, Positive Affect, Social Support and Functional Independence

“…participating in a hobby at home by oneself ). For example, highly socialized activities provide a larger, welcoming community of social support that shares understanding of and provides aid to the stroke survivor beyond a caregiver or family unit ( 47 ).…”

What are the available online resources targeting psychosocial burden among stroke survivors and their informal caregivers: A scoping review

“… 43 One study evaluated an online moderated discussion forum open to stroke patients and informal caregivers aimed to facilitate communication between these, and to share information about any aspects of stroke; the forum was hosted by a stroke survivors association and not moderated by professionals. 44 …”

“… 36 , 40 , 41 Another study found that increased mastery and social support gained using a website were significantly correlated with reduced depression of stroke survivors (respectively r = −0.49: P < 0.005, and r = −0.37; P < 0.05) at one month. 42 In addition, the qualitative study reported by Smith et al 44 characterized the process of emotional adjustment after stroke and the role of the online forum in this process. The authors found that participating in an online stroke community as a stroke survivor could be beneficial for the progression of positive emotional adjustment.…”

“…Adherence to a structured program reported by Smith et al 42 seems high with only 3/32 survivor/caregiver dyads (9.4%) who completed fewer than 10 sessions of the 11 weekly sessions planned in the intervention. Smith et al 44 reported that there were 69 participants on the online forum; among these, 39 were stroke survivors, 29 were informal caregivers, and one was a healthcare professional, who published a total of 124 posts.…”

Shared social identity and perceived social support among stroke groups during the COVID‐19 pandemic: Relationship with psychosocial health

“…This qualitative research with a virtual choir run for stroke survivors highlighted how these groups can provide a sense of belonging, but also the yearning of members to meet face‐to‐face and the limitations for those who are not able to use online technologies (Seckam & Hallingberg, 2021 ). Other research outside of the COVID‐19 pandemic shows how remote forms of contact between stroke survivors, such as online forums, can provide valuable emotional support post‐stroke (Smith et al, 2021 ). However, the current study was designed to extend this research to more broadly understand stroke survivors' experiences of perceived social support and shared social identity within stroke groups that would normally see and meet each other face‐to‐face (unlike online forums) but for a time are unable to do so.…”