Social participation through the eyes of people with aphasia

Abstract

Social participation is a theoretical concept that people with aphasia do not use. Instead, people speak in terms of engagement, involvement, having a feeling of belonging. People with aphasia describe the degree of engagement in activities in social life domains (i.e. the quality of activities) as more important than the quantity of performing activities.

Aphasia blog talk: How does stroke and aphasia affect a person’s social relationships?

“…In terms of friendships and the wider network, the main trend was for people to be in less frequent contact with others, which mirrors previous work in this area (Dalemans et al, 2010;Davidson, Howe, Worrall, Hickson, & Togher, 2008;Hilari & Northcott, 2006). The type of contact also appeared to change: visits appeared more likely to take place at the blogger's home; making visits to others was less frequently described, a finding replicated by Davidson et al (2008).…”

“…In part, this reflected the difficulty some participants experienced in leaving the house on their own. For those who did meet their friends outdoors, a number of factors negatively affected the experience, including difficulty negotiating public transport, mobility issues, impaired fine motor skills, and environmental barriers, such as background noise, consistent with previous qualitative research (Dalemans et al, 2010;Haun, Rittman, & Sberna, 2008;Sumathipala, Radcliffe, Sadler, Wolfe, & McKevitt, 2012). The longitudinal nature of this qualitative data set meant it was possible to observe changes in friendships over time.…”

“…In particular, those with aphasia experienced the most hurtful negative responses from others, and were more likely to report feeling abandoned or rejected by pre-stroke friends. The consequence of this reduction in the social network is that many describe feelings of loneliness and exclusion (Dalemans et al, 2010;Parr, 2007).…”

“…Studies have found that following a stroke, people take part in fewer social activities, contact with friends and the wider network is vulnerable, and increased strain is placed on the family unit (Astrom, Adolfsson, Asplund, & Astrom, 1992;King, ShadeZeldow, Carlson, Feldman, & Philip, 2002;Northcott & Hilari, 2011). Those with aphasia may be particularly likely to experience negative social consequences (Dalemans, de Witte, Wade, & van den Heuvel, 2010;Vickers, 2010). Analysis of blog posts written by those with aphasia may provide an 'insider' perspective on how these social changes are perceived and the consequences for everyday life.…”

Enhanced patient involvement in Swedish aphasia intervention

“…Participation will here thus be viewed as a matter of patient involvement and engagement (Dalemans, de Witte, Wade and van den Heuvel, 2010), and discussed in terms of how the viewpoints of people with aphasia may be captured, despite difficulties associated with their condition since it affects the possibilities to get their views across. everyday situations.…”