Perspectives of working-age adults with aphasia regarding social participation

Abstract

Background Working-age adults with aphasia experience difficulties in social participation, specifically fulfilling social roles and reintegrating into communities. Literature regarding social participation of people with aphasia (PWA) is predominantly based on studies conducted in high-income countries (HIC), limiting generalisability of findings. Perspectives of social participation are influenced by person, place and cultural background warranting investigation in heterogeneous low- and middle-income countries (LMICs), like South Africa. Objectives Describe perspectives of working-age adults with aphasia regarding social participation within the first 2 years post-incident. Method Semi-structured interviews gained perspectives of 10 working-age adults (with mild to moderate aphasia) using principles of supported conversation for adults with aphasia. Data were thematically analysed to describe participants’ perspectives of social participation. Results Seven themes were identified pertaining to participants’ perspectives of social participation. Participants considered rehabilitation services, faith-related activities and returning to work as valued areas of social participation. Previous interests, presence of support and characteristics of communication partners determined their preference and willingness to participate with others. Finally, personal attitudes and feelings continued to influence their perspectives of social participation, as well as their motivation to participate. Conclusion Successful social participation was dependent on the PWA’s perceived value of social activities and presence of support from significant others. Speech-language therapists are in the ideal position to facilitate PWA’s communication abilities and their experience of successful participation through the implementation of person-centered care and community-led intervention. This study provided a preliminary investigation of social participation in South Africa and further investigation is warranted.

Experiences of acquired brain injury one-month post-discharge from acute hospitalisation

“…In addition to health education, participants appear to rely on their faith during challenging times. Corroborated by other studies, individuals with ABI also mentioned their belief being an important aspect of the recovery process (Karpa et al 2020;Masuku & Khoza-Shangase 2018;Souchon et al 2020). Faith and spirituality were the centre of most of participants' motivation and recovery.…”

“…Although this study consisted of a small sample of 12 individuals, it yielded clinically relevant findings that could be useful for HCP during the acute stage of recovery. Livedexperiences post-discharge have been widely explored, but there is limited research focusing on personal experiences onemonth post-discharge from acute hospitalisation in settings such as South Africa (Souchon et al 2020;van Zyl et al 2019).…”

“…This may result in complete dependence on family members (Ntsiea 2019). Research of this nature, conducted qualitatively, has proven the importance of examining experiences post-ABI (Abrahamson et al 2017;Masuku, Mophosho & Tshabalala 2018;Souchon et al 2020).…”

The views of people living with chronic stroke and aphasia on their potential involvement as research partners: a thematic analysis

“…Since all participants with aphasia were actively engaged in aphasia communication support groups, they could anticipate the value of communication partners as part of the research team. The recruitment of communication partners and facilitators such as healthcare students and trained volunteers [42][43][44] is warranted to avoid the risk of being tokenistic within the team. It is suggested that potential patient partners with aphasia be recruited from aphasia communication groups, as they are familiar with communication partner practices, are acquainted with group interactions and are more likely to express their individual needs and views during the research process.…”

The Views of People Living with Chronic Stroke and Aphasia on Their Potential Involvement as Research Partners: A Thematic Analysis

“…Since all participants with aphasia were actively engaged in aphasia communication support groups, they could anticipate the value of communication partners as part of the research team. The recruitment of communication partners and facilitators such as healthcare students and trained volunteers[42,43,44] is warranted to avoid the risk of being tokenistic within the team. It is suggested that potential patient partners with aphasia be recruited from aphasia communication groups, as they are familiar with communication partner practices, are acquainted with group interactions and are more likely to express their individual needs and views during the research process.People with aphasia also advocated for various communication facilitators under technological support to enhance the conventional methods of engagement such as speech recognition software, technological aids etc.…”