Correspondence to Professor Zhen-Xiang Zhang; [email protected] ; Professor Chunhui Zhang; [email protected]
STRENGTHS AND LIMITATIONS OF THIS STUDY
This study is the first to explore the positive perceptions of self-advocacy of patients who had a stroke.
This study took into account the diversity of the study population, interviewing patients who had a stroke from different cities and with different numbers of stroke events.
The qualitative interviews used in this study are a well-suited method for exploring the perception of self-advocacy.
The participants were mildly or moderately dependent on others for daily activities, so these findings may not be generalised to people who had a more severe stroke.
We only investigated participants without communication problems to obtain information, thus limiting the transferability of study findings.
Introduction
Stroke is the third most common cause of disability and the second most common cause of mortality among individuals worldwide.1 Approximately 15 million cases of stroke occur each year, with one-third of patients suffering from lifelong disabilities. This burdens families and society greatly.2 As the primary caregivers for themselves, patients who had a stroke need to carry out effective health management, including monitoring the illness, using medication reasonably, participating in decision-making, changing their behaviours, fully exerting their active initiative and becoming informed and responsible participants in cooperation with healthcare providers.3 According to the International Center for Self-Care Research, it is crucial for patients with chronic diseases to actively participate in the self-care process.4 Self-advocacy is a concept formed in the medical industry that promotes active participation in healthcare interactions and nursing behaviours to enhance chronic disease patients’ health outcomes.
Self-advocacy arose from the civil rights movement in the 1950s and 1960s and was eventually applied to groups in need of healthcare and social assistance. Self-advocacy refers to a patient’s ability to represent their interests, which is a central issue in chronic disease management.5 Self-advocacy fully embodies the patient-centred nursing model since it highlights patients’ active engagement and concentrates on their needs and experiences, as well as their engagement with medical personnel and the surrounding community.6 7 Many studies have demonstrated the beneficial effects of self-advocacy instruction on patients with cancer,8 AIDS9 10 and mental health issues,11 12 and disabled students enrolled in special education programmes. In this way, patients’ illness burden has been reduced, as has treatment compliance, quality of life and nursing satisfaction.13 14 Individuals acquire the information and assistance they need to manage associated disorders through self-advocacy. Patients who actively practice self-advocacy can actively seek solutions to difficulties affecting their living conditions,15 which can significantly enhance their overall well-being regarding physical, mental, social and emotional functioning.
Stroke rehabilitation is a protracted procedure. Self-advocacy helps maximise the health benefits of these patients, further lowers illness burden and improves health outcomes. However, there have not been enough studies in clinical practice, and the concept and current status of self-advocacy in patients who had a stroke are still unclear. Therefore, this study uses a qualitative research methodology to provide insights into positive perceptions and stage experiences of patients who had a stroke. The results will provide a reference for the definition of the concept of self-advocacy in patients who had a stroke and the development of evaluation tools.
Methods
Aims
This study explores the perceptions and experiences of self-advocacy in patients who had a stroke from a developing country.
Design
A qualitative descriptive phenomenological study was designed to gain a deeper understanding of the perceptions and experiences of self-advocacy patients who had a stroke. This qualitative study was part of a multicentre, mixed-methods study investigating the perceptions and conceptual connotations of self-advocacy among patients who had a stroke . Semistructured interviews were used with patients who had a stroke admitted to two hospitals in two cities with different socioeconomic characteristics.
Participants
Purposive sampling was used to recruit participants with varying types of stroke, stroke event numbers, educational levels and demographic characteristics to enrich the diversity of the data.16 17 The participants were recruited from two city-level hospitals in Henan, China (Zhengzhou city and Luoyang city). Inclusion criteria were (1) survivors of various types of stroke18; (2) with different stroke event numbers; (3) with communication ability (Token test ≥17 points)19 and self‐care capability (activities of daily living ≥40)20 and (4) individuals without cognitive dysfunction (mini-mental state examination ≥17 points).21
Patient and public involvement
No patients and/or the public were involved in the study’s design or conduct.
Data collection
Using a brief questionnaire, the demographic data of the stroke survivors were gathered. Comprehensive literature reviews and exploratory interviews were the foundation for developing the initial interview guide. Following a group discussion, the study team identified and engaged three relevant specialists in the fields of nursing management, psychological care and stroke care research to formulate the interview guide. The interview guiding questions at this stage include: (1) What was your stroke experience when it happened to you?, (2) How has your lifestyle changed (or remained unchanged) before and after your illness?, (3) How do you understand the word ‘self-advocacy’? What does this mean to you?, (4) How do you think about the significance and value of self-advocacy? and (5) Could you share your views, feelings and experiences with self-advocacy? Please give us some specific examples.
This study employed a semi-structured face-to-face individual interview method. The Individual interviews were conducted between October 2023 and February 2024. Interviews were conducted when patients were admitted to the hospital and in a stable state. In addition, the interviews were set up in a relatively quiet consultation room or ward of a hospital. The first author who conducted the interviews is a nursing PhD student with practical internship experience working with patients who had a stroke. She is a communicative, passionate individual who can carry out qualitative research. Interviews and recordings should only be started with the patient’s consent. Observing and recording the patient’s non-verbal behaviours, such as tone, intonation, facial expressions and actions during the interview, was necessary. Techniques such as questioning, listening, responding, follow-up and repetition were employed to encourage the patients to express their accurate opinions and feelings, thus creating a relaxing interview atmosphere. If a participant was found to have an obvious emotional response to a particular topic, the topic was terminated or replaced, out of respect and protection for them. Interviews can be concluded when the participant is deemed inappropriate, the interview data become saturated or no new topic emerges.22 When no new topics emerged, a group discussion on data saturation was held to establish consistency.
Ethics
This study was approved. For formal interviews, the participants were explained the purpose and procedure of the research and invited to sign an informed consent form. To maintain their privacy and confidentiality during the study and for the publication of the study results, each participant was intentionally numbered sequentially from P1 to P19. Interviewees were free to withdraw from the study at any time and to seek clarification.
Data analysis
This study used Colaizzi’s seven-step method to analyse interview data.23 The steps include: (1) get familiar with the text materials; (2) extract effective statements; (3) summarise and code recurring and effective viewpoints; (4) collect encoded viewpoints; (5) write detailed supporting viewpoints; (6) summarise and sublimate thematic concepts and (7) return to the interviewed patients for verification. The precise analysis procedures are as follows. Two researchers finished the transcription in Nvivo V.11.0 software within 24 hours after the interview. They cross-checked and validated each other to ensure the accuracy of the transcribed content. The participants received the original transcript from the first author for validation. Two researchers analysed and coded the interview data independently, while a third researcher engaged in one-on-one comparison and discussion. The third researcher documented contentious codes or topics, and invited experts to partake in group discussions. The initial data and coding process were sent to the experts for assessment, and the final results were based on the experts’ viewpoints.
Rigour
This study used several strategies, such as credibility, dependability, confirmability and transferability, to ensure rigour.24 25 Credibility was established by interviewing participants of all genders, ages and residential locations; the researcher also built trust with participants and spent much time in the field looking for, collecting, and evaluating the data. Peer review of the transcripts and group discussion helped to establish dependability by ensuring that decisions were made consistently. Confirmability was attained by incorporating thorough explanations using data extracts from the findings. Finally, transferability was facilitated by comprehensive, clear and distinct explanations of the culture and environment, participant selection and characteristics, data collection and analysis method. Meanwhile, we report the results based on the Consolidated criteria for Reporting Qualitative research checklist (see online supplemental file 1).26
Results
A total of 19 patients who had a stroke were interviewed in this study. The mean age of participants was 56 years (33–71 years); nine (47.4%) were women; nine (47.4%) had an education of high school diploma or higher; ten (52.6%) were first-ever stroke survivors, nine (47.4%) were survivors with more than two recurrences. The interview duration ranged from 28 to 46 min, with an average of 32.6 min, and a total of 86 000 words were transcribed. The characteristics of the participants are shown in table 1. The study findings included two categories, six themes and ten subthemes, as depicted in table 2. In addition, based on the number of stroke events, the results of the interviews were further analysed, compared and correlated to derive a model of the relationship between the stroke event number and self-advocacy perception, as shown in figure 1.
Table 1The characteristics of participants (n=19)
Participants characteristics | n (%) |
Gender | |
| 10 (52.6) |
| 9 (47.4) |
Age | |
| 2 (10.5) |
| 4 (21.1) |
| 8 (42.1) |
| 5 (26.3) |
Ethnicity | |
| 17 (89.5) |
| 2 (10.5) |
Educational level | |
| 3 (15.8) |
| 7 (36.8) |
| 3 (15.8) |
| 5 (26.3) |
| 1 (5.3) |
Diagnosis | |
| 16 (84.2) |
| 3 (15.8) |
Stroke event number | |
| 10 (52.6) |
| 6 (31.6) |
| 3 (15.8) |
Duration of stroke (year) | |
| 10 (52.6) |
| 4 (21.1) |
| 5 (26.3) |
ADL | |
| 7 (36.8) |
| 3 (15.8) |
| 9 (47.4) |
Interview time length (min) | |
| 11 (57.9) |
| 5 (26.3) |
| 3 (15.8) |
ADL, activity of daily life, the maximal score of Barthel Index is 100 points, with scores of 80–100 representing independence, scores of 60–79 points representing minimal dependence, scores of 40–59 representing partial dependence and scores less than 40 denoting severe dependence.
Table 2Categories, main themes and subthemes of self-advocacy
Category | Themes | Subthemes | Meaningfully sentence |
Positive perceptions | Accept the facts of illness while maintaining inner integrity | Disease cognition | Life still goes on. It’s a fact that I’m sick, but I still have to live my life (P3). I will never complain, because it’s of no use. It’s better to think about the future (P14). |
Firm faith | |||
Positive attitude | |||
Clarify one’s own needs and strive for them | Self-care knowledge | I always love swiping my phone and can gain a lot of knowledge about disease, so I can manage myself (P12). I’ve seen other people work out before, so I know what to do. I work out based on what I have previously learnt (P2). | |
Effective communication | |||
Independent decision-making | |||
Power from relation | |||
Enhancing subjective initiative and maintaining healthy behaviours | Active participation in disease management | I no longer require supervision because I have quit smoking and drinking. Now I take medication correctly and take treatment as required (P10). Now I regularly take medication for hypertension every day and don’t quit taking it freely. Following the doctor’s advice, I try to form healthy habits and manage myself (P17). | |
Increased treatment compliance | |||
Increased initiative in rehabilitation exercises | |||
Stage experiences | Motivation stage | – | The notion came to me when I was first diagnosed with the disease (P1). |
Response stage | – | Whenever I have problems, I ask the doctor for help right away (P7). | |
Stabilisation stage | – | Despite having this disease, I know what I need and how to keep my body in good condition (P6). |
Figure 1. The relationship model of stroke event number and self-advocacy perception.
Category 1: positive perceptions of self-advocacy of patients who had a stroke
Theme 1: accept the facts of illness while maintaining inner integrity
Subtheme 1: disease cognition
Participants accept the fact of illness and adjust their mindset to accept illness as an aspect of life rather than a transient phase. They believe the most important thing is to live well in the moment. ‘I didn’t even think I’d get this disease before, but now I accept it’ (P1). ‘Life still goes on. It’s a fact that I’m sick, but I still have to live my life’ (P3). A patient explained, ‘I’ve got the disease, so what? I have got to be optimistic myself ’ (P19).
Subtheme 2: firm faith
Although suffering from the disease, some participants still maintained a firm will and faith. ‘I keep exercising every day. There are many people around me who have this disease, but now they are all fine, so will I’ (P5). ‘I believe in myself, and I’m still young. This disease is nothing to me’ (P6). ‘I don’t buy it. If I take medicine on time and keep exercising, why won’t I be the one to recover?’ (P13).
Subtheme 3: positive attitude
Most of the participants still had a positive attitude towards their illness and lives. ‘There is nothing you can do when you are sick. Then figure out how to improve your life’ (P1). ‘What can you do if you are sick? You still have to live your life and live it well (a determined look). Instead of worrying, be happy every day (smile)’ (P9). ‘I will never complain because it’s useless. It’s better to think about the future’ (P14).
Theme 2: clarify one’s own needs and strive for them
Subtheme 1: self-care knowledge
Some participants stated that to participate in disease management actively, they must have a certain level of self-care knowledge. ‘Since getting sick, I have been paying attention to relevant knowledge, and now I am not too anxious about what situations I encounter’ (P11). ‘I always love swiping my phone and can gain much knowledge about the disease to manage myself’ (P12). ‘I’m a couch potato (laughs) and can learn a lot about this disease. Now I’m not utterly ignorant about it’ (P15).
Subtheme 2: effective communication
Most patients who had a stroke can actively speak with medical staff according to their own needs, thus receiving the nursing care they need. ‘Since my condition wasn’t too bad this time, I asked the doctor if I might go home to rest after the infusion and shared some of my views with him. I was relieved when the doctor told me that he would need to evaluate my condition in a few days and that, should nothing go wrong, I might return home’ (P6). ‘I would like to tell the doctor about any uncomfortable feelings so I can address them sooner’ (P15). ‘My doctor also advised me to talk to him about anything I wanted, so I just did that (smile)’ (P18).
Subtheme 3: independent decision-making
Patients who had a stroke can decide to suit their treatment needs based on their knowledge and prior experience. ‘I’ve seen other people work out before, so I know what to do. I work out based on what I have previously learnt’ (P2). ‘The physical therapist would guide me to exercise, telling me that it was beneficial for my legs and that I would eventually be able to walk independently. However, I found it difficult to exercise this way, and I was in discomfort after each session. I requested that the intensity of the exercise be reduced so that I could gradually adapt’ (P4). ‘They told me to take this drug, which I’ve tried before. But it didn’t work well, so that I won’t take it. I will inquire if there’s anything else I can take’ (P8).
Subtheme 4: power from relation
By establishing relations with others and themselves, most patients who had a stroke can find strength and support. ‘There are moments when I ask myself, How can this disease bother me? I can do everything myself’ (P12). ‘I get much assistance from my friends and relatives who also have this disease if I have any questions (smile)’ (P16).
Theme 3: enhancing subjective initiative and maintaining healthy behaviours
Subtheme 1: active participation in disease management
Most patients who had a stroke now take an active role in disease management, showing enhanced subjective initiative. ‘Despite my lack of medical knowledge, I am aware of what’s happening to me, and I will discuss any thoughts I have with the doctor’ (P7). ‘I learnt much relevant knowledge about my disease, and I’m now able to make a judgement occasionally. In addition, the treatment compliance of the patients was improved’ (P16). ‘I no longer consume alcohol and smoke’ (P10). ‘Now I regularly take medication every day and don’t quit taking it freely. Following the doctor’s advice, I try to form healthy habits and manage myself’ (P17).
Subtheme 2: increased treatment compliance
Most patients who had a stroke reported improved treatment compliance and health behaviours. ‘I no longer require supervision because I have quit smoking and drinking. Now I take medication correctly, and take treatment as required’ (P10). ‘I just follow my doctor’s instructions and cooperate with any treatment’ (P19).
Subtheme 3: increased initiative in rehabilitation exercises
Most patients who had a stroke can improve their rehabilitation and thus their overall health results. ‘It’s really of great benefit to take an exercise whenever I’m free (laughs)’ (P7). ‘I believe I will recover faster if I work out more. It’s a matter of health, so I will not be sloppy’ (P18).
Category 2: stage experiences of self-advocacy of patients who had a stroke
Theme 1: motivation stage
The majority of patients who had a stroke were motivated to engage in self-advocacy by disease factors, specifically the intensity and symptoms of their condition. ‘The notion came to me when I was first diagnosed with the disease’ (P1). ‘It was the fact that I had the disease several times that I realised I had to take some actions. The patient’s own needs are also significant motivators’ (P7). ‘From my point of view, I have to let the doctor know if I need any help’ (P13). ‘As for exercising, everyone else does it in the same way, but I have to ask if there’s anything else that’s appropriate for me since I can’t hold on to it, and it hurts so much’ (P14).
Theme 2: response stage
The process via which patients cope and self-adjust when facing obstacles related to their disease. Most patients who had a stroke choose to accept the disease and use all available resources to directly confront the disease, such as seeking medical support, actively participating in disease management and maintaining good health behaviours. ‘Whenever I have problems, I ask the doctor for help right away’ (P7). ‘I no longer go out to socialise, nor do I smoke or drink’ (P8). ‘I now work out every day and try to walk as much as possible. There are also some struggling to adapt to their new role as a patient, tending to self-neglect and avoid the facts’ (P9). ‘I feel very well. I do no need to take medicine’ (P12). ‘I want to get better soon, but sometimes I think that my efforts are of no use, whether exercising or not (sighing)’ (P16).
Theme 3: stabilisation stage
In this phase, the patients accept their disease’s existence, focus on their own positive qualities and can assist in disease management based on their current needs. ‘Despite having this disease, I know what I need and how to keep my body in good condition’ (P6). ‘It is more vital than everything else to take medicine as required and manage myself well’ (P14).
Discussion
Analysis of positive perceptions of self-advocacy of patients who had a stroke
In this study, qualitative interviews revealed three themes in positive perceptions of self-advocacy of patients who had a stroke: accepting the disease while maintaining inner integrity; clarifying one’s needs and striving for them and enhancing subjective initiative and maintaining healthy behaviours. Through the analysis, self-advocacy is considered to be a process in which patients understand and articulate their own needs, continuously mobilise their initiative and work towards them. In this process, patients possess awareness of their disease, solid beliefs and positive attitudes, self-care knowledge and the ability to communicate effectively and make decisions independently. They can also gain the strength to actively participate in disease management and maintain healthy behaviours by connecting with themselves and others.
In this study, disease cognition refers to the fact that most patients who had a stroke comprehend they have the disease and adjust their mindset to accept illness as an aspect of life. This is similar to prior research, which found that the majority of patients considered the most essential thing to live their life in the present now. It has been discovered that self-advocates can prioritise their needs at different stages during illness experience, which is critical for appropriate disease management.27 Since the advent of positive psychology, it has been clear that positive psychological experiences—such as robust beliefs and upbeat attitudes—generate positive cognition in patients, facilitating disease regression and maintaining healthy behaviours. Related studies have demonstrated that positive psychological states such as self-efficacy, well-being and self-esteem influence patients’ self-advocacy.12 28 Self-advocacy is more common among people who have a strong sense of self, take responsibility for their actions and have favourable attitudes towards health information.29 Conversely, unfavourable feelings like sadness and worry might make it more difficult for a person to speak up for their needs.30 31
The majority of patients who had a stroke in this study were able to recognise and pursue their needs. Among these, understanding self-care is crucial for patients to take an active role in disease management and is a necessary quality for patients to practice self-advocacy. It was found that individuals with self-care knowledge could clearly understand their care needs, values and priorities.29 32 A cooperative dialogue with questioning, opinion sharing, personal experiences and frank communication of issues is what constitutes effective communication between patients and healthcare practitioners.31 33 Studies have indicated that proficient communication fosters trust, facilitates problem-solving and mutual support and allows patients and healthcare professionals to discuss treatment options.34 In this study, individuals gained support and strength in their relationships with others and with themselves. According to earlier studies, people who reevaluate their value and identity after becoming ill find strength in connecting with themselves.35 In addition, individuals with illness turn to their roles as partners, parents, children, friends and coworkers to help them adapt to their illness state, gaining strength by providing support to these individuals.36 Self-advocates can look after their health and well-being and care for their friends and family by striking a balance between offering and receiving help.
Consistent with earlier research, most patients who had a stroke in this study demonstrated greater subjectivity through self-advocacy, active participation in disease management, increased treatment compliance and increased initiative in rehabilitation exercises. It was discovered that people acquired the knowledge and assistance they required to control the related symptoms by engaging in self-advocacy. Self-advocacy is found to leverage patients’ quality of life. Patients who actively practice self-advocacy aggressively seek solutions to issues affecting their quality of life, significantly enhancing their overall well-being regarding their physical, mental, social and emotional functioning.
Analysis of stage experiences of self-advocacy of patients who had a stroke
According to the findings of this study, self-advocacy is a dynamic and progressive process. It is divided into three major stages: motivation, response and stabilisation. Patients who had a stroke with varying levels of self-advocacy had distinct expressions in these three phases, further illustrating the multidimensionality and complexity of self-advocacy.
In the motivation stage, patients’ personal needs and disease-related considerations have a significant role in inciting patients’ self-advocacy. Disease severity often affects patients’ physical, psychological and social functioning, and Hagan et al 37 discovered a positive association between disease severity and self-advocacy. The more serious the condition, the higher the patients’ degree of self-advocacy. Patients with serious medical problems often actively engage with their healthcare professionals and seek out information about their disease, which may raise their degree of self-advocacy. Furthermore, the degree to which a person is cognizant of their own needs also dictates their ability to be an effective self-advocate.29 32
In the response stage, patients learn to live with the problems posed by their disease. Relevant research indicates that patients’ symptom burden and level of satisfaction with care are both improved by self-advocacy.13 14 The majority of patients who had a stroke acknowledge that they have the disease, which completes the inner role shift from a healthy person to a patient. This helps the patient comply with participating in the treatment and management, which sets the groundwork for their eventual recovery. Nevertheless, some find it difficult to adjust to the role of a patient and opt not to respond. According to a study by Dhand et al,38 when patients who had a stroke have early symptoms, they frequently resort to unhealthy response mechanisms like denial, ignoring symptoms and depending on family members.
Patients who had a stroke eventually reach a stabilisation stage. In this phase, they learn to live in the present, accept their condition as it is, concentrate on their well-being, exercise regularly and exhibit better health behaviours. According to the study, self-advocates can make decisions based on their own needs and communicate with healthcare providers promptly and efficiently to address health issues. They can also make decisions based on their knowledge of available options for care.30
Limitations
There are some limitations to this study. First, participants were either fully independent, or minimally or partially dependent, indicating that only those with a disability score of at least 40 (out of 100) were included, so the findings may not be generalised to people with more severe stroke. Second, we recruited only participants without communication problems so that more information could be obtained faster and more conveniently in a limited time frame. However, a more extensive survey of the population’s perceptions and experiences of self-advocacy needs to be conducted to create customised interventions.
Conclusion
To summarise, self-advocacy is a dynamic and progressive process in which patients who had a stroke actively participate in their disease management. Self-advocates can accept the disease while maintaining their inner integrity, identify their own needs and strive for them and enhance subjective initiative while maintaining healthy behaviours. Self-advocacy fully embodies the idea that ‘everyone is the first person responsible for his or her health’. Based on this, targeted interventions are suggested to be taken in the future considering the current status of the self-advocacy perceptions and the experiences of patients who had a stroke of each stage to enhance the self-advocacy level further and improve patients’ overall health outcomes.
We would like to express our appreciation to all patients
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information.
Ethics statements
Patient consent for publication
Not applicable.
Ethics approval
This study involves human participants and was approved by the Ethics Committee of Zhengzhou University (ZZUIRB2023-277). Participants gave informed consent to participate in the study before taking part.
Contributors ZZX* is the qualitative research’s guarantor. ZZX and ZZX* contributed to conceptualisation. ZZX, WSS and ZCH* contributed to methodology. ZZX, WXX and LBL contributed to formal analysis. ZZX, WXX, LBL and JH contributed to investigation. ZZX contributed to writing—original draft preparation. ZZX, WSS, MYX and ZCH* contributed to writing—review and editing. LBL and ZZX* contributed to supervision. ZZX* contributed to project administration. All authors read and approved the final manuscript.
Funding This study was funded by the National Natural Science Foundation of China (72174184).
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.
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Abstract
Objectives
This study explored the perceptions and experiences of self-advocacy among patients who had a stroke in China.
Design
A descriptive phenomenological qualitative study was performed. Colaizzi’s seven-step method was used to analyse the data.
Setting
Two hospitals in Zhengzhou and Luoyang City, Henan Province, China.
Participants
19 patients who had a stroke were recruited and interviewed face-to-face between October 2023 and February 2024.
Results
The findings revealed two categories: positive perceptions and stage experiences. Three themes of positive perceptions were extracted: ‘accept the facts of illness while maintaining inner integrity’ with three subthemes (disease cognition, firm faith and positive attitude); ‘clarify one’s own needs and strive for them’ with four subthemes (self-care knowledge, effective communication, independent decision-making and power from relation); ‘enhancing subjective initiative and maintaining healthy behaviours’ with three subthemes (active participant in disease management, increased treatment compliance and increased initiative in rehabilitation exercises). Three stage experiences themes were motivation, response and stabilisation stage.
Conclusions
In this study, patients who had a stroke showed more positive perceptions of self-advocacy. Self-advocacy is a dynamic and progressive process of accepting their disease and actively participating in disease treatment. In addition, patients’ health behaviours are improved and maintained when they engage in self-advocacy.
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Details




1 School of Nursing and Health, Zhengzhou University, Zhengzhou, China; School of Nursing, Inner Mongolia Medical University, Hohhot, China
2 School of Nursing and Health, Zhengzhou University, Zhengzhou, China
3 School of Nursing, The Hong Kong Polytechnic University, Hong Kong, China