Table 3.

Descriptive themes

Descriptive theme		Illustrative quote(s)
Coming to terms with the loss of communication	The extent to which stroke survivors reported being able to come to terms with a communication impairment varied.52 54 55 60 61 64 71 73 For some, the struggle to communicate was an ongoing source of emotional distress, triggering feelings of grief, loss and sadness. However, others had successfully come to terms with their communication impairments. These participants recognised the changes that had taken place in their lives but had been able to adjust to these and find contentment.	"What if you only could! Could talk! That’s what I… Everything" (p. 149)67 "And I know it’ll never be the same as what I was before I had the stroke … And as I say I hate to accept it, but I’ve got to accept it". (p. 1283)52
Loss of communication and the loss of self-identity	Communication was often linked to participants sense of self. Being able to communicate as before was regarded as being ‘normal’50 59 and since stroke some participants described feeling as though a piece of themselves was missing. Stroke survivors were conscious of the deficiencies in their speech. The constant monitoring and evaluation of speech was also linked to negative self-evaluation when stroke survivors fell short of their own expectations.	"at least 50 percent of me vanished when speech vanished that that’s how I think about it" (p. 1831)73 "… I hate myself because I can’t speak right…" (p. 143)59
Isolation and exclusion from social situations	Participants felt left out of social situations or ignored or excluded specifically due to their communication problems.48–50 56 57 59–61 65–73 75 The discomfort others felt in talking to stroke survivors with communication difficulties was apparent to the stroke survivor themselves and led to feelings of social isolation. Participants expressed particular difficulty in taking part in group situations.56 61 68–70 As a consequence, people with poststroke communication difficulties described either withdrawing from or avoiding communication or social situations altogether.48–50 59–61 68 70 71 Feelings of embarrassment and a lack of confidence in communication contributed to participant’s avoidance of social events.50 One participant also suggests that fear of stigmatising reactions contributed to avoidance of social situations.50	"It’s my wife who says I’m antisocial because, even when I visit my in-laws, I’m sick of going to their parties, sit in a corner, and at the end of the party, I get up and leave. I haven’t said a damn word in there, and no one was interested, talked to me". (p. 431)70 "Instead, they would ‘go into the background and retreat’…. and ‘do the bare amount of talking’…" (p. 275)48
A support network of family and friends	Family members were discussed as an ongoing support on a practical and emotional level.62 70 Although some survivors did rely more on family members for support since having their stroke, reliance on others was not desired by stroke survivors or their carers.56 60 61 63 67 70 73 79 The importance of friendship and social support outside the family was also expressed by stroke survivors with communication impairments.51–55 57 61 63 64 72 76 However, also prominent was the difficulty maintaining friendships and the loss of friendship poststroke.52 56 61 69–72 75 76	"The informants mentioned that being dependent on their partners was frustrating. Having their partner always nearby brought security but it also made them feel that they were being a burden". (p. 150)67 "…Friends stayed away because they didn’t know how to handle the new situation. When time passed by, making contact became even more difficult…" (p. 543)56
Strategies to facilitate successful communication	Some stroke survivors with communication difficulties used their own strategies to help facilitate conversation.48 49 52 56 60 65 67 69 78 A wide range of strategies were identified including communication aids,49 52 56 60 drawing or writing information down49 52 67 and signalling by raising a hand that they have something to add when in a group situation.48 49 69 However, some studies identified a stigma attached to using communication aids.56 67 Strategies used by communication partners of people with poststroke communication difficulties were also recognised as a facilitator to successful communication.49 52 56–58 63 65 67 68 73 74 77 78	"Interviewer: do you use a communication book? Liv: no, people look strange". (p. 544)56 "Equally important were the degree to which the CPs were able to adapt their speaking behaviour and whether they used supportive conversation strategies. ’Then she wrote! Keywords like this. – – – She wrote for me, you see. – – – That was damn good, and then I understood at once!'…" (p. 1287)52
Activity and meaningful participation in life	A distinction can be made between stroke survivors who took part in activities they enjoyed or which were meaningful to them and those who no longer took part and remained largely inactive. Where stroke survivors engaged in activities they valued, a sense of achievement, purpose, pleasure and confidence was expressed.49 52 53 55 56 62 63 76 Establishing a routine was important to stroke survivors with aphasia. Again this gave stroke survivors a sense of purpose and achievement, which was not evident in the experiences of those participants where activity had decreased poststroke.54 60 61 69 71–73 75	"’Be involved with everything'. ’Have a hobby'. ’Live as much as you can; do as much as you can'". (p. 1277)52 "When able to establish a routine and engage in activities around the home, participants often obtained a sense of ability, competency and independence: ‘I can do everything for myself’ and ‘I can do it myself. Pretty well'". (p. 1415)62