Post-Stroke Experiences and Rehabilitation Needs of Community-Dwelling Chinese Stroke Survivors: A Qualitative Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design
2.2. Participants
2.3. Data Collection and Analysis
2.4. Trustworthiness of Data
2.5. Ethical Consideration
3. Results
- Theme 1. Shifts in Social Life
- Sub-Theme 1.1 Reversal of Family Role
“It was a major shock when I couldn’t speak clearly. On top of that, I couldn’t move and needed my family to take care of me…it was a big blow.”(P10, 56 years, male)
“I used to earn and buy things for my wife and kids, but now I don’t have a source of income so I can’t do that anymore.”(P49, 50 years, male)
“My husband says he feels tied down by me since he can’t go out to do what he wants.”(P2, 49 years, female)
- Sub-Theme 1.2 Reduced Community and Social Contact
“I used to go out and do activities with other people but now I just sit alone… I can’t walk so I have to stay [at home] by myself.”(P1, 75 years, female)
“There’s a vegetable market downstairs and I liked to go down and buy things… These were my hobbies but now I can’t do them anymore, I’ve started to feel lonely…”(P21, 77 years, female)
“I feel very bored by myself at home. I wish people would come and hang out with me.”(P2, 49 years, female)
“I don’t want to socialise with anyone anymore because I can’t speak [properly] now. I used to be very talkative but now I don’t want to speak to anyone.”(P46, 65 years, male)
“I feel like I sound a bit strange so I prefer not talk to others.”(P1, 75 years, female)
- Theme 2. Shaken Sense of Self and Perceived Helplessness
“I felt really sad because I still have two little children… I felt very sorry towards them that I’ve got this illness and whenever I saw them I’d cry…I couldn’t accept the situation… me being jobless and not earning and my wife taking a year off to take care of me. When I looked at this situation, it’s really upsetting.”(P50, 41 years, male)
“There weren’t many patients [in the ward] and it felt like everyone else was alive and kicking…when I was discharged, I cried because I felt alone and wondered why it had to happen to me.”(P3, 57, female)
“[Before stroke] I used to wake up at 5 a.m. to go hiking. On the way home, I would buy a bun and return after eating. But now, I don’t go anymore and will only go out to walk if I’m urged.”(P30, 63 years, male)
“It felt like being locked up in prison… can’t go out, can’t do anything [you want].”(P7, 52 years, male)
“I was suicidal… almost jumped off the building. It felt like my life was over and I wondered, why does it have to be like this? How am I going to live my life with stroke?”(P49, 50 years, male)
- Theme 3. Complex Rehabilitation Needs
- Sub-Theme 3.1 Physical and Psychosocial Recovery
“I want to recover quickly and take care of my family. I want to recover by myself and at least be able to move my hands… make some dumplings.”(P15, 72 years, female)
“I’m just waiting for the day when I can prepare my meals by myself without needing help from others.”(P1, 75 years, female)
“We need more help in terms of our physical and emotional health… I still have some anxiety and whenever an issue arises, I will become anxious because I can’t act immediately like I used to before.”(P12, 45 years, male)
“Door-to-door rehab services would be beneficial as it would be good to have someone to accompany us… I feel bored at home by myself.”(P48, 51 years, male)
“We need family affection… Older people need to get encouragement and warmth from their families.”(P21, 77 years, female)
“Hope to have someone to talk to and share our experiences… if [other survivors] are recovering well then I could learn from them and improve my recovery. If I just stay at home, I definitely won’t recover well and I won’t have a lot of information.”(P25, 76 years, male)
“After getting to understand this disease, I started to meet more peers on Douyin, WeChat and other survivors in the community. I’d talk to them about stroke-related things…”(P50, 41 years, male)
- Sub-Theme 3.2 Home Guidance from Professionals and Volunteers
“We want [healthcare] volunteers to teach us about rehabilitation since we don’t understand it very well. They’re professional and could teach us how to recover.”(P41, 68 years, female)
“Guidance and advice provided by rehabilitation experts is important. We will pay attention to them…after hospital discharge, it’d be good if professional rehabilitation workers could help us do home rehabilitation instead of us trying to do it by ourselves. It would save us a lot of time and effort.”(P11, 55 years, male)
“I hope that more doctors can visit [the elders] in our community regularly… There should be more on-site services.”(P38, 59 years, female)
- Sub-Theme 3.3 Physically Accessible Rehabilitation Spaces
“It just feels like I’m always going back and forth between the hospital and home.”(P17, 55 years, female)
“I want to see how [other survivors’] rehabilitation exercises are working for them. If they are exercising well and it’s benefitting them, I would want to learn from them.”(P2, 49 years, female)
- Sub-theme 3.4 Institutional Support
“Last time we went to the Disabled Persons’ Federation, they were quite good as they asked us if we wanted to install any handrails in the shower… They also asked if we needed any assistive devices such as wheelchairs or anything else.”(P35, 44 years, male)
“The door-to-door volunteer service provided by Disabled Persons’ Federation is quite good. I felt supported by their measures and I feel like their support can reduce pressure on me.”(P24, 85 years, female)
“My family members and I tried to look for [a caregiver] in the start but we couldn’t find anyone…”(P28, 55 years, female)
“Since both my kids need to work and earn money, I needed someone to accompany me [after I was discharged].”(P25, 76 years, male)
- Theme 4. Perceptions and Patterns of Physical Activity
- Sub-Theme 4.1 Perceived Benefits of Physical Activity
“Cycling helps. I think it has helped my arms and legs to recover gradually.”(P8, 44 years, female)
“[After exercise] now I can lift this hand up. In the beginning, I couldn’t lift it no matter how hard I tried.”(P1, 75 years, female)
“When I was at the hospital, I couldn’t walk a single step but after doing two or three different types of rehab exercises, I could finally start to walk.”(P2, 49 years, female)
“I think that at this old age, it is already enough if I can eat well, live well, and not starve.”(P1, 75 years, female)
- Sub-Theme 4.2 Walking and Home Exercise as the Main Form of Physical Activity
“I’ll wake up at 6:30 in the morning and go out for a walk and some exercise before breakfast. I’ll exercise in the public square.”(P17, 55 years, female)
“I just do some little exercise at home… If I go out, I’ll just walk a bit in a straight line, stretch my neck and twist my hands.”(P20, 73 years, female)
- Sub-Theme 4.3 Barriers to Use of Public Exercise Equipment
“I don’t use the community equipment because I feel like they aren’t very suitable for my body type. They don’t seem very safe.”(P20, 73 years, female)
“When I was healthy, I would always go downstairs to stretch, do waist twists, exercise… but now I can’t walk anymore and we live on the 7th floor with no elevator…”(P35, 44 years, male)
- Sub-theme 4.4 Physical Activity Participation Affected by Self-Efficacy
“I don’t leave home… I’m scared even to go to the backyard… I’m afraid if I squat down and my leg goes numb, what will I do if I can’t get back up?”(P15, 72 years, female)
“I’m quite scared, especially when [my caregiver] is not with me since I’m afraid of injuring myself.”(P44, 65 years, female)
“If my caregiver takes me for longer walks, then I can walk more. I’ve always felt that this is the most important thing because from the beginning to the present, whenever I couldn’t walk, they insisted on helping me.”(P4, 52 years, male)
“I went to Chongqing and Guang’an a while ago, met my friends there and went hiking together. We didn’t go on steep roads and mainly stayed on flat paths. It was quite amazing. It’s the first time I’ve gone so far since I got sick.”(P50, 41 years, male)
4. Discussion
5. Limitations
6. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Mean (SD)/n (%) | |
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Sociodemographic characteristics | |
Age (years) † | 61.58 (13.2) |
Sex | |
Male | 34 (68%) |
Female | 16 (32%) |
Educational level | |
No formal education/primary | 21 (42%) |
Secondary | 20 (40%) |
Post-secondary or above | 9 (18%) |
Marital status | |
Married | 49 (98%) |
Divorced/widowed | 1 (2%) |
Employment pre-stroke | |
Employed | 39 (78%) |
Unemployed | 7 (14%) |
Retired | 4 (8%) |
Employment post-stroke | |
Employed | 0 (0%) |
Unemployed | 50 (100%) |
Living Situation | |
Living alone | 4 (8%) |
Living with caregiver | 2 (4%) |
Living with family | 44 (88%) |
Financial Assistance | |
No | 39 (78%) |
Yes | 11 (22%) |
Elevator in residence | |
No | 46 (92%) |
Yes | 4 (8%) |
Clinical characteristics | |
Average time since most recent stroke (years) † | 5.08 (5.90) |
History of hypertension | |
No | 26 (52%) |
Yes | 24 (48%) |
History of diabetes | |
No | 43 (86%) |
Yes | 7 (14%) |
History of heart disease | |
No | 47 (94%) |
Yes | 3 (6%) |
Assistive aids used | |
None | 27 (54%) |
Walking cane and/or Wheelchair | 23 (46%) |
Type of stroke | |
Ischaemic stroke | 30 (60%) |
Haemorrhagic stroke | 20 (40%) |
Affected side | |
Left | 27 (54%) |
Right | 21 (42%) |
Both | 2 (4%) |
Affected limbs | |
Upper | 8 (16%) |
Lower | 1 (2%) |
Both | 41 (82%) |
Stroke frequency | |
One | 40 (80%) |
Two or more | 10 (20%) |
Main Themes | Sub-Themes |
---|---|
| 1.1 Reversal of family role |
1.2 Reduced community and social contact | |
| / |
| 3.1 Physical and psychosocial recovery |
3.2 Home guidance from professionals and volunteers | |
3.3 Physically accessible rehabilitation spaces and solutions | |
3.4 Institutional support | |
| 4.1 Perceived benefits of physical activity |
4.2 Walking and home exercise as the main form of physical activity | |
4.3 Barriers to use of public exercise equipment | |
4.4 Physical activity participation affected by self-efficacy |
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Share and Cite
Chau, J.P.C.; Lo, S.H.S.; Butt, L.; Liang, S. Post-Stroke Experiences and Rehabilitation Needs of Community-Dwelling Chinese Stroke Survivors: A Qualitative Study. Int. J. Environ. Res. Public Health 2022, 19, 16345. https://doi.org/10.3390/ijerph192316345
Chau JPC, Lo SHS, Butt L, Liang S. Post-Stroke Experiences and Rehabilitation Needs of Community-Dwelling Chinese Stroke Survivors: A Qualitative Study. International Journal of Environmental Research and Public Health. 2022; 19(23):16345. https://doi.org/10.3390/ijerph192316345
Chicago/Turabian StyleChau, Janita Pak Chun, Suzanne Hoi Shan Lo, Laveeza Butt, and Surui Liang. 2022. "Post-Stroke Experiences and Rehabilitation Needs of Community-Dwelling Chinese Stroke Survivors: A Qualitative Study" International Journal of Environmental Research and Public Health 19, no. 23: 16345. https://doi.org/10.3390/ijerph192316345