Table 3 Four central themes of Creating Sustainable Engagement and its subthemes. All subthemes are illustrated by relevant participant quotes

Right Tool at The Right Time

Is This Tool For Me

“It doesn’t matter to me where I improve [my communication skills] or not. I don’t need it at my age.” Participant Cory

Coping with Early Stages

“At the time [of his stroke], he was very frustrated with not being able to do things himself but he also would blame mum for a whole lot of things” Family Member Rose

Chronic Changes to Abilities

“I did get diagnosed with chronic fatigue last year…I kind of get to about 11 o’clock, 12 o’clock and I just hit a brick wall and I just can’t function.” Participant Linda

Perceived Effort

Willingness to Work for Others

“[The activity] is for somebody else. So I’m prepared to get up at silly o’clock and get myself organised.” Participant Charles

Resisting Passivity

“I might meet somebody, and then it’ll become nothing after that. I will not follow it through and I might even not keep in touch with some friends with whom I should have. And then friendships would die. And I know I need to make an effort but that effort to maintain is hard.” Participant Alice

Success Sustains Effort

“I think [completing an activity] kind of gives you a spur – you know that you’ve achieved something and therefore you can go forward and do it again.” Participant David

Increased Prioritising and Planning

“I do need to sleep in the afternoon, so therefore I would go from one to five, which [activity] is more important?” Participant Sophia

Activities as a Habit

“Well, you have your routine and it has to be done. He’s very strict with the routine.” Family Member Sandy

Emotional Impact

Managing Self-Criticism

“Occasionally [I’m] self-critical that I think things have not worked out the way I want them to. Sometimes I think that things will work out better than they do, and you know sometimes they just don’t. And I do think then that it’s usually, I think I must have done something wrong, to have done that, but really it should have worked but it didn’t” Participant Kelly

Recognising How Activities Affect Me

“[Enjoyable activities] lift my heart. Life, for everybody regardless of your circumstances is full of challenges, and some of those are difficult and wear you down. So I need, I need those sort of therapeutic uplifts.” Participant Bella

Gaining Confidence

“I’m always very wary [about trying new things]. I just don’t know enough about it, it worries me.” Participant James

Coping with Failed Activities

“If [an activity] doesn’t work out we can find something else. I’m very much a ‘Let’s not worry about it’ person.” Participant Sophia

Aversion to Confronting Emotions

“For [communication skills], I don’t like arguments and everything and I get upset easily” Participant Bonnie

Changes in Social Circle

“I said to the members of my family, I said ‘look, you’ve got to appreciate that someone in my position, it’s too much expecting me to do everything’…think about things that I might want doing.” Participant Merlin

External Praise

“You have to encourage him all the time…’you’ve made a lovely job with that, well done!’ That kind of thing.” Family Member Sandy

Relation to Values

I Do What I Value

“If it’s anything to do with family, that comes first.” Participant Roy

New Perspective on Life

“Since I had my brain tumour…nothing really bothers me that much. I just take every day as it comes…you know people would understand what I’m saying, who’s actually been through the same thing, they would know exactly 100 percent” Participant Cory

Closeness to Others

“Everybody when you get older have got their own jobs on their own with their own family their own way. When we were single we had loads of time to say hello to people. We didn’t have [time] so much anymore and so it has be certain people, you know. And so there is the little key nucleus.” Participant Sophia