Table 4.

Symptoms as impede patients in engaging with self-care

Construct	Themes with exemplar quotes
Workload	Preforming tasks of CHF self-care (N=31): Activities of daily living (n=20): ‘I can be just sitting, watching TV. And all of a sudden I get to breathing hard, you know.’36 pg. 1632 Specific illness management tasks (n=23): ‘I tried to walk up the health centre Monday before last…it must have taken an hour and 15 minutes to get back home…it’s only a 10 minute walk. It’s uphill and every couple of minutes I was sitting like a poor wino, with my feet in the road, sitting on the footpath to get my breath back and rested. (patient 18, male, aged 69)’53 pg. 275 Lifestyle changes (n=7): ‘Although the patients were aware of the need to modify their life-style, they believed that stress was worse and that it would be better to reduce stress by eating what they liked.’46 pg. 4 Gaining knowledge around CHF; baseline understanding, and evaluating outcomes (n=21) ‘I thought the signs were related to my prostate or lung problem, I never thought it was my heart.’38 pg. 3602 In asking for help from social support networks or healthcare professional (n=15) ‘The informants sometimes felt that other people did not understand or believe them when they said they were seriously ill. As signs of disease often are invisible in conditions of CHF.’52 pg. 7
Capacity	To utilize individual abilities (n=29): Physical (n=27): ‘I liked my garden and I used to come out and potter. I can’t do that now…’ (P7)’34 pg. 266 Emotional (n=25): ‘some very dark days over the years’’ and that much of the depression was caused by physical limitations.’32 pg. 99 Mental (n=13): ‘About a quarter of the participants were experiencing cognitive impairments such as memory loss and concentration impairment. A 41year-old woman said: ‘I need to read something several times to comprehend the material’ (p13, higher education).’40 pg. 826 Spiritual (n=7): ‘I went down to Mass then in the car and I—my wife said to me ‘You shouldn't go down because you're not able to walk all that far’ and I really couldn't walk from the car park—I attempted and failed…and I'd only gone a few yards and I said ‘Look I can't—you're right I can't go any further—I'll have to stop’—so I had to come back and get into the car and go home’ (PI, p4) (Field Notes: Eyes filled with tears and voice became shaky)’45 pg. 227 To utilize external resources (n=24) Support networks (n=20): ‘Due to my illness, there are so many things I can’t be a part of anymore. I can’t do so many things at a time, and I need plenty of time to do everything. (P14, NYHA III)’50 pg. 1787 Healthcare system (n=9): ‘To see a doctor, you have to wait for an hour. This is very tiring.’28 pg. 588 Financial resources (n=9): ‘a 68-year-old male patient in NYHA class II reported ‘I had to stop my job and I feel this has impacted negatively on me and my family life because I feel useless and now we have to live with only one salary.’’42 pg. 266 Physical environment (n=9): ‘As she spoke, she pointed to her environment—a three – levelled townhouse. She describe how she sometimes needed to sit on the stairs on the way up to her bedroom, she couldn’t get downstairs to do her laundry and she couldn’t go for walks because of snow on the sidewalks as she feared falling and not being able to get up. She talked about her shortness of breath, and how she ‘slept’ fearfully on the stairway.’41 pg. 10
Impact	Disruption to self-ability: change of what a patient could do (n=25) Participants described the need to ‘‘plan activities around how [they] feel,’’ though they yearn ‘‘to be able to do things that [they] used to be able to do.’’32 pg. 98 Disruption to role: change of a patient identity (n=24) ‘Limitations in physical activity were sometimes associated with changes to home and family life. Another participant reflected that ‘…as far as being physically able to exercise …run, jump, play, play with my grandkids or roughing it up a little bit … overall, you just don’t have the ability anymore. You are limited.’’59 pg. 159 Disruption to adherence: changes in self due to treatments or self-care regimens making adherence more difficult (n=14) ‘Consequences on life and daily routine (70%) were primarily related to medications. Many (57%) described how diuretics, which caused frequent urination, controlled their lives and made it difficult to leave the house or get enough sleep (‘I'm up all night. I mean, right now it’s killing me. I'm getting up four or five times a night,’74/M/Wh).’37 pg. 142

Exemplar quotes illustrate how symptoms hindered patients’ engagement with various elements of self-care connected to the bot framework. ‘N’ is number of articles coded to this theme in the bot framework and had an interaction with a symptom of CHF.

CHF, chronic heart failure.