Self-advocacy in stroke patients in China: a mixed-methods analysis

Abstract

Objective

Self-advocacy is associated with positive health outcomes, which is a central issue in chronic disease management. This study attempted to define self-advocacy operationally and conduct a mixed-methods analysis of self-advocacy among stroke patients in China.

Design

Schwartz-Barcott and Kim’s method was used to clarify the concept of self-advocacy.

Setting

Two hospitals in Zhengzhou and Luoyang City, Henan Province, China.

Participants

A total of 12 stroke patients were recruited and interviewed face to face from October 2023 to December 2023.

Outcomes

A three-phase method (theoretical phase, fieldwork phase and final analysis phase) was employed to conduct the mixed concept analysis. In the theoretical phase, a literature search was conducted using PubMed, Web of Science, EBSCO, Embase, PsycINFO, CNKI, Wanfang database, VIP database and CBMdisc. 38 articles in databases were evaluated without time limits up to August 2023. In the fieldwork phase, semistructured interviews were used to interview the 12 participants who were chosen using purposive sampling. In the final analysis phase, the results from both the initial and second phases were integrated.

Results

The review of literature in the theoretical phase determined the attributes of the concept, including ‘self-cognition’, ‘self-decision making’, ‘effective communication’, ‘social connection’. In the field study phase, attributes such as ‘self-awareness’, ‘self-care knowledge and abilities’ and ‘seeking support’ were added. In the final analysis phase, self-advocacy was finally defined as five attributes: ‘self-awareness’, ‘self-care level’, ‘self-decision-making’, ‘effective communication’ and ‘seeking support’.

Conclusions

Self-advocacy was defined as the capacity of stroke patients to comprehend and articulate their personal needs and care preferences, make proactive and meaningful decisions, engage in effective communication with healthcare providers and derive strength by seeking support from others.

Correspondence to Professor Zhen-xiang Zhang; [email protected]; Jing Chen; [email protected]

STRENGTHS AND LIMITATIONS OF THIS STUDY

• This study defines the conceptual connotations of self-advocacy in stroke patients using a mixed-methods analysis.

• The mixed concept analysis compares and integrates the findings of the literature with those of the field study, which helps to arrive at a clear and comprehensive conceptualisation of self-advocacy.

• A definition (and attributes of self-advocacy) related to stroke patients was developed.

• The literature study expanding the study population to patients with chronic diseases may have limited the understanding of the conceptualisation of self-advocacy in stroke.

• We only investigated stroke patients without stakeholders of stroke patients (eg, caregivers and healthcare providers) in the field study phase, which may have limited the expansion of the conceptualisation of self-advocacy in stroke.

Introduction

Across the globe, stroke has emerged as a severe chronic non-communicable disease, posing a significant threat to public health. According to the data from the WHO, a stroke occurs every 5 s worldwide, with an annual occurrence of approximately 15 million cases. Of these cases, one-third results in lifelong disability, imposing a colossal burden on both families and societies.¹ In China, stroke is the leading cause of death and disability among adults, and it is also the leading cause of disability-adjusted life-years.² Stroke patients, as their primary caregivers, require effective health management. The International Self-Care Research Centre emphasises that patients must actively engage in self-care, enhancing health and well-being, reducing incidence and mortality rates and mitigating medical expenses.³ Self-advocacy is an ideology developed in the health field that promotes active participation in healthcare interactions and care to improve the health outcomes for patients with chronic diseases. Patients’ active involvement in health behaviour management is the result of self-advocacy. However, not all patients can advocate for themselves, but they recognise that failure to do so will negatively impact their health.^{4 5} From the perspective of ‘advocacy’, health management is no longer a passive process of adaptation and compliance, but rather one of cultivating patients to continuously explore their own potential, actively participate in healthcare decision-making and continuously improve their self-esteem, confidence and decision-making. Individuals can promote health behaviours through self-advocacy, ultimately achieving health and well-being.

Self-advocacy is a critical skill that involves obtaining relevant information and effectively communicating one’s needs and personal preferences to healthcare providers.^{6 7} It can directly or indirectly encourage healthier behaviours in patients, thereby improving health outcomes. Numerous studies demonstrate the positive impacts of self-advocacy education on patients with cancers,⁸ AIDS,^{6 9} individuals coping with mental disorders^{10 11} and disabled students receiving special education services. As our exploration into managing chronic diseases deepens, the concept of self-advocacy and its application in the healthcare realm has begun to draw attention from researchers. However, both domestically and internationally, scholars currently lack a clear understanding of the concept and core elements of self-advocacy. Self-advocacy has different and relatively complex meanings in various environments and among different populations, which limits in-depth research into self-advocacy. Hence, it is imperative to research self-advocacy in stroke patients to elucidate and define this concept.

Stroke rehabilitation is a long-term process. Self-advocacy helps maximise the health benefits of stroke patients, thereby reducing the disease burden and improving health outcomes. Self-advocacy emphasises active patient participation, a focus on the patient’s experience and needs, and interaction with healthcare professionals and the environment, which exemplifies a patient-centred model of care.¹² It is evident that patients are key participants in managing their own diseases and promoting their health. Therefore, exploring the conceptual connotations of self-advocacy for stroke patients, focusing on self-advocacy, can help clarify the key role of health behaviours in stroke patients. However, the current conceptualisation and status of self-advocacy in stroke patients is unclear and underreported in clinical practice. Concept analysis has been widely applied in nursing research as an effective method for clarifying widely used but ambiguously defined concepts. The mixed concept analysis is a relatively popular research method in nursing abroad. This method combines literature reviews with field research methods such as interviews and observations, ultimately comparing and integrating the literature review results with the findings collected in clinical practice to derive a clear and comprehensive conceptual connotation.¹³ Currently, the method has developed and defined several concepts.^14–16 Hence, this study employs the mixed concept analysis method proposed by Schwartz-Barcott and Kim¹⁷ to analyse the conceptual content of self-advocacy among stroke patients, to provide insights into a more profound understanding of self-advocacy among stroke patients, develop relevant assessment tools and explore its influencing factors.

Methods

Study design

The concept of self-advocacy was investigated using a mixed method created by Schwartz-Barcott and Kim. This method includes three phases: theoretical, fieldwork and final analysis phases.¹⁷

The theoretical phase

In this phase, a review of the literature about self-advocacy was performed. The databases of PubMed, Web of Science, EBSCO, Embase, PsycINFO, CNKI, Wanfang database, VIP database and CBMdisc were searched with a combination of subject terms and free words (see ^{online supplemental file 1}). The search was conducted from when the database was created until August 2023. The details of the search strategy were presented in ^{table 1}. The full-text’s inclusion criteria were the keywords listed above; study subjects were adult chronic disease patients; texts should have discussed the concept’s definition, attributes, antecedent, consequence and measuring; texts both in English and Chinese language. Texts in other languages, book reviews, letters to the editor and abstracts only were excluded. In the theoretical research phase, the study subjects were expanded to include patients with chronic diseases due to the lack of current research related to self-advocacy in stroke patients. To guarantee rigorous methodology, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist was completely followed¹⁸ (see ^{online supplemental file 2}).

Table 1

Search strategy

Step	Search strategy
#1	Search: (self advocacy(Title/Abstract)) OR (advocacy(Title/Abstract))
#2	Search: (((((((((((chronic disease(MeSH Terms)) OR (chronic disease(Title/Abstract))) OR (chronic illness(Title/Abstract))) OR (chronic(Title/Abstract))) OR (coronary heart disease(Title/Abstract))) OR (cardiovascular disease(Title/Abstract))) OR (hypertension(Title/Abstract))) OR (stroke(Title/Abstract))) OR (oncology(Title/Abstract))) OR (cancer(Title/Abstract))) OR (diabetes(Title/Abstract))) OR (mental disease(Title/Abstract))
#3	#1 AND #2

The fieldwork phase

A qualitative study was carried out during this phase to investigate the participants’ first-hand experiences. At this stage, conducting qualitative interviews helped to strengthen and improve the concept developed during the theoretical phase.¹⁹ Field data were collected from October 2023 to December 2023. Twelve stroke patients were interviewed about self-advocacy, its antecedents and its consequences. The participants were chosen purposefully from two city-level hospitals in Henan (Zhengzhou city and Luoyang city). The diversity was considered when selecting the participants, considering factors like gender, age, marital status, employment status, education level, type of stroke and duration of stroke (years). The following were the inclusion criteria: stroke survivors of various types²⁰; with communication ability (Token test ≥17 points)²¹; with self-care competence (activities of daily living ≥40)²² and those with no cognitive impairment (Mini–Mental State Examination ≥17 points).²³

Semistructured in-person interviews were used to gather the data. Two main questions were posed to every participant, that is, ‘When you hear the term self-advocacy, what comes to mind?’ and ‘What does self-advocacy mean to you?’. To further investigate the concept attributes, further questions such as ‘Can you provide some specific examples?’, ‘What do you mean by that?’ and ‘Can you elaborate on that issue?’ were raised in response to the participants’ answers.

The interview location was chosen based on the preferences of the participants (a quiet ward or health education room). The first author who conducted the interviews is a nursing PhD student. During the interview, encourage the interviewee to express their feelings, while recording their facial expressions, actions and emotional changes, etc. Every interview was recorded digitally. Interviews and recordings should only be started with the patient’s consent. When new data analysis does not add anything to the existing theoretical categories and the categories are adequately described, theoretical saturation results.²⁴ Within 24 hours of the interview, the recording will be transcribed into a document and checked by another research team member. NVivo V.11.0 software was used to handle and organise the data. The Lincoln and Guba criteria, which include credibility, confirmability, dependability and transferability, were applied to guarantee the reliability of qualitative data. Following Graneheim and Lundman’s suggested procedure, traditional content analysis was employed for data analysis.²⁵ In addition, we report the results based on the Consolidated criteria for Reporting Qualitative research checklist²⁶ (see ^{online supplemental file 3}).

Final analysis phase

In this phase, the findings from the two preceding phases were integrated.¹⁹ A comprehensive definition of self-advocacy in stroke patients was developed by synthesising the concepts and definitions identified in the earlier stages. This involved comparing the codes derived from the theoretical stages with those obtained during fieldwork. This comparative analysis achieved a thorough definition of stroke patients’ self-advocacy.

Patient and public involvement

No patients and/or the public were involved in the study’s design or conduct.

Results

Theoretical phase results

In total, 3382 titles were obtained. ^{Figure 1} shows the 38 eligible papers included in the study after eliminating duplicate or irrelevant records. Data were analysed following data collection. Comprehensive definitions of self-advocacy, including its attributes, antecedents and consequences were extracted from the publications based on an analysis of the findings. The results are presented in ^{tables 2 and 3}.

Table 2

Definitions of self-advocacy from included literature

Author	Year	Concept	Definition
Brashers et al27	1999	Self-advocacy	Self-advocacy can be defined as patients taking an active stance in healthcare interactions and becoming ‘agents’ in managing their illnesses.
Hagan et al28	2013	Self-advocacy	Self-advocacy may be conceptualised as the ability of patients to meet their own needs and priorities when confronted with the challenges of illness.
Hawley et al30	2016	Self-advocacy	Self-advocacy can be defined as understanding and articulating one’s needs and desires, making wise decisions to meet those needs and considering it a crucial component of managing life after trauma.
Hagan et al4	2017	Self-advocacy	Healthcare providers regard self-advocacy as a means for patients to manage their symptoms and receive support from family and friends.
Thomas et al29	2021	Self-advocacy	Individuals practising self-advocacy can make proactive, personally meaningful decisions, communicate effectively with healthcare providers and derive strength through connections with others.

Table 3

Attributes, antecedents and consequences from included literature

Dimensions	Subdimensions	Findings from literature
Attributes	Self-cognition	Establish a new normal32
		Embrace and adapt to the state of illness32
		Prioritise their individual needs33
	Self-decision-making	Make informed choices34 35
		Deviate from healthcare providers’ recommendations36
	Effective communication	Posing questions and sharing preferences37
		Discussing personal experiences and openly addressing concerns38
		Assertively articulate their needs or express disagreement with suggestions39 40
	Social connection	Self-reassessment, finding strength in their internal connection41
		Seek support from partners, parents and friends41
Antecedents	Demographic factors	Age42 43
		Gender44–46
		Income43
		Education level43
		Place of residence47
	Disease-related elements	The severity of the illness5
	Health literacy	Individual capabilities4
		Information-seeking proficiency34
		Problem-solving ability28
		Awareness of personal needs28 48
	Psychological states	A sense of self-awareness, responsibility and a positive attitude28
		The perceived benefits of the illness4
		Negative emotions like anxiety and depression29 37
	Social support	Informal support from family and friends49 50
		Formal support encompasses established support groups and organisations49 50
Consequences	Impacts on patients	Alleviating patients’ symptom burden, improving treatment adherence and increasing satisfaction with care28 51
		Enhancing quality of life28 51 52
		Enhancing individuals’ self-concept, sense of control and autonomy53
	Impacts on healthcare systems	Reducing the utilisation of healthcare54 55
	Impacts on nursing models	Reinforcing patient-centred nursing models56 57

Figure 1. Literature search and selection process.

Evolution of the concept of self-advocacy

The term ‘advocacy’ derives from the Latin word ‘advocatus’, meaning ‘one called to aid’ or ‘one summoned to testify’. The Oxford English Dictionary defines it as ‘pleading for or supporting another’. Brashers et al²⁷ define self-advocacy as patients taking an active stance in healthcare interactions and becoming ‘agents’ in managing their illnesses. Hagan and Donovan²⁸ conceptualised self-advocacy as the ability of patients to meet their own needs and priorities when confronted with the challenges of illness. Individuals practising self-advocacy can make proactive, personally meaningful decisions, communicate effectively with healthcare providers and derive strength through connections with others.²⁹ Hawley et al³⁰ defined self-advocacy as understanding and articulating one’s needs and desires, making wise decisions to meet those needs, and considering it a crucial component of managing life after trauma. Healthcare providers recognise self-advocacy as a mechanism through which patients manage symptoms and mobilise support from family and friends.⁴ In summary, self-advocacy encompasses a reflective assessment of individual needs and proactive agency.

Conceptual attributes of self-advocacy

Conceptual attributes represent the defining characteristics inherent to a concept.³¹ These attributes are essential for deepening conceptual understanding, distinguishing it from related constructs and capturing its essence. The conceptual attributes of self-advocacy in the context primarily encompass the following key features:

Self-cognition

Self-advocates can establish a ‘new normal’. They embrace and adapt to illness as an integral aspect of life rather than viewing it as a temporary phase.³² The essence lies in effectively navigating and living well in the present. Self-advocates adeptly prioritise their individual needs at various stages of their journey through health challenges.³³

Self-decision-making

Self-advocates actively seek and critically evaluate reliable health information relevant to their personal context. They systematically assess risks and benefits of various options, allowing them to make decisions aligned with their prioritised concerns. Self-advocates typically demonstrate the ability to make informed choices after collecting and analysing information from diverse sources.^{34 35} Furthermore, they may deviate from healthcare providers’ recommendations based on their nuanced understanding of the issue and personal preferences.³⁶ For self-advocates, this is not a deviation from treatment; rather, it reflects a rational decision grounded in their preferences, beliefs and values.

Effective communication

Collaboration and communication with healthcare providers are central to self-advocacy. This involves asking questions, expressing preferences, sharing personal experiences and openly discussing concerns.^{37 38} When individuals experience persistent stress or complex interpersonal dynamics with healthcare providers, opportunities to address significant issues may be limited.⁴ Consequently, self-advocates must clearly articulate needs or voice disagreement with unsuitable recommendations.³⁹ Effective communication builds patient–provider trust, facilitates collaborative problem-solving, promotes mutual care and enables constructive discussion of treatment issues.⁴⁰

Social connection

Self-advocates cultivate resilience through social connections, both with themselves and others. At the individual level, they gain strength through self-reassessment and internal reflection.⁴¹ At the interpersonal level, individuals, assuming roles as partners, parents, children, friends and colleagues, seek support to navigate the challenges of illness. Simultaneously, they derive strength by providing support to these individuals.

Antecedents for self-advocacy

Antecedents are the underlying factors or contexts that contribute to the development of a concept. For self-advocacy, these encompass demographic factors, disease-related elements, health literacy, psychological states and social support. (1) Demographic factors: Primarily include age,^{42 43} gender,^44–46 income,⁴³ education level⁴³ and place of residence.⁴⁷ (2) Disease-related elements: Illness severity is a key factor influencing patients’ physiological, psychological and social functioning.⁵ (3) Health literacy: Encompasses attitudes, beliefs and personal traits enabling patients to assert themselves. Individual capabilities, such as communication skills,⁴ information-seeking proficiency,³⁴ problem-solving ability and awareness of personal needs, values and priorities, determine whether an individual can effectively engage in self-advocacy.^{28 48} (4) Psychological states: Psychological states are important in self-advocacy. Prior research has indicated that psychological factors such as self-efficacy, happiness and self-esteem impact a patient’s ability to advocate for themselves. Individuals with a heightened self-awareness, responsibility and a positive attitude towards health information are more likely to advocate for themselves²⁸ actively. Perceived illness benefits correlate positively with self-advocacy.⁴ In contrast, anxiety and depression may constrain advocacy capacity.^{29 37} (5) Social support: Social support manifests in two forms. Informal support involves emotional and informational backing from family and friends to address specific patient needs, forming the foundation of self-advocacy. Formal support encompasses established support groups and organisations that allow patients to connect with others, aiding them in ‘treading the same path (advocating for themselves)’. A study on community-dwelling older adults in Korea revealed that those with lower perceived social support reported higher decision conflicts.⁴⁹ However, individuals with a robust social support system can draw strength from it, approaching the challenges of illness with a more positive attitude and actively participating in caregiving and medical processes.⁵⁰

Consequences of self-advocacy

Consequences refer to the outcomes resulting from self-advocacy in practice. For chronic disease patients, self-advocacy significantly impacts three domains: patients, healthcare systems and nursing modes. (1) Impacts on patients: Self-advocacy reduces symptom burden, improves treatment adherence, enhances quality of life and increases care satisfaction.^{28 51} Self-advocates actively seek solutions to challenges affecting their quality of life,⁵² which substantially improves overall well-being, encompassing physical, mental, social and emotional dimensions. Beyond these direct influences, self-advocacy can also enhance individuals’ self-concept, sense of control and autonomy.⁵³ (2) Impacts on healthcare systems: Self-advocacy reduces healthcare utilisation. Individuals with knowledge of relevant care options make informed decisions and effectively communicate with healthcare providers to promptly address health issues. This proactive approach decreases emergency visits and hospitalisations, significantly lowering healthcare usage.^{54 55} (3) Impacts on nursing models: Self-advocacy reinforces patient-centred nursing modes. This model actively reflects patients’ needs, preferences and values.^{56 57}

Fieldwork phase results

The interviews ranged from 30 to 60 min, with an average of 40 min. After twelve participant interviews, the study’s data were saturated. The characteristics of the participants are shown in ^{table 4}. During this stage, the results were created and categorised into three primary groups: the dimensions, antecedents and consequences of stroke patients’ self-advocacy.

Table 4

Interview participant demographic (N=12)

Participants characteristics	N (%)
Gender
Male	7 (58.3)
Female	5 (41.7)
Age (years)
30–40	1 (8.3)
41–50	2 (16.7)
51–60	4 (33.3)
>60	5 (41.7)
Educational level
Primary school	3 (25.0)
Middle school	4 (33.3)
High school	2 (16.7)
College	2 (16.7)
Master’s degree	1 (8.3)
Diagnosis
Ischaemic stroke	10 (83.3)
Haemorrhagic stroke	2 (16.7)
Duration of stroke (years)
<1 year	7 (58.3)
1–3 years	2 (16.7)
>3 years	3 (25.0)

Conceptual attributes of self-advocacy

Self-awareness

Patients demonstrate a certain level of autonomy awareness, accepting the reality of their illness while maintaining resolute willpower and belief. They proactively share experiences, articulate care needs and engage in disease management. Participant 1: “I’m now paralyzed on one side and can’t move freely. What could I do? Despite this, I’ve taken the initiative to explore exercises and recovery methods. I believe that with dedicated effort, there is still hope.” Participant 3: “Even though I may not fully comprehend this illness if something doesn’t feel right, I make a point of contacting the doctors and nurses. I need to ask about anything I’m unsure of; it benefits my condition.” Participant 6: “I’m still young, and this minor illness is nothing. I firmly believe in my ability to regain my health.”

Self-care knowledge and abilities

Patients possess specific self-care knowledge and abilities. Most participants highlighted the importance of self-care as having the knowledge and abilities for effective self-management. Participant 2: “I’ve seen much information about this illness on television. I have a basic understanding (laughs).” Participant 5: “In my free time, I use my phone to research. I’ve learnt a great deal about my own illness.” Participant 7: “I can take care of myself. Even though my mobility is limited, I don’t need to depend on others. I have to handle my own affairs.” Participant 11: Since getting sick, I have been paying attention to relevant knowledge, and now I am not too anxious about what situations ie,ncounter. Participant 12: I always love swiping my phone and can learn much about disease.

Self-decision-making

Patients can independently make decisions when engaging in the disease management process. Participant 2: “I’ve previously learned about exercise techniques, and I know how to do it. I follow the methods I learned to exercise.” Participant 4: “The rehabilitation therapist guides me in exercises, claiming it benefits my legs and will eventually enable me to walk independently. However, I find these exercises very uncomfortable. ie,xperience significant pain after each session. So, I inquired if we could reduce the intensity to allow me to adapt gradually.” Participant 8: “They prescribed this medication for me, which I’ve taken before without much success. I don’t wish to continue it. I need to inquire about alternative options.”

Effective communication

Some participants actively communicate with healthcare professionals to address their needs and meet their own care requirements. Participant 6: “My illness wasn’t too severe this time. I discussed with the doctor whether receiving intravenous fluids and staying at home for rehabilitation could be beneficial. I shared some of my thoughts, and the doctor explained. After a few days of evaluation, if everything is fine, I can return for rehabilitation. I feel quite pleased about it.”

Seeking support

Stroke patients can gain strength by seeking support from themselves or others. Participant 3: “someone in our village experienced this illness. I’ve heard her discuss how to take medication and exercise, and I’ve gained valuable insights.” Participant 12: “Sometimes, I reflect on my capabilities—I can do anything and excel at everything. Can this illness truly pose a challenge to me? I don't believe it. I am confident that I can overcome it.”

Antecedents for self-advocacy

Antecedents for stroke patients’ self-advocacy manifest in several domains. From a demographic perspective, the majority of interviewees believe that the education and economic income of one’s family can influence an individual’s ability to advocate for themselves. Patients with health knowledge, self-management skills and proactive attitudes during disease management demonstrated stronger self-advocacy. Those with a higher level of enthusiasm for disease information are more likely to engage in self-advocacy. Additionally, family support emerged as foundational. Participant 6: “I used my phone to research this disease before, learning about some coping methods.” Participant 8: “I’ve attended college, and although I lack medical knowledge, I independently gather information about my illness.” Participant 9: “The support from my family is significant. Seeing them work hard, I also want to do more for myself.”

Consequences of self-advocacy

Through self-advocacy, patients recognise the value of accessing disease-related information and become more willing to discuss their condition. This facilitates deeper understanding of treatment and recovery processes. During disease management, patients demonstrate increased autonomy, improved compliance with treatment and rehabilitation, and the ability to maintain good health behaviours, significantly enhancing health outcomes.

Active participation in disease management

Most stroke patients actively engage in the disease management process, and their subjective initiative is enhanced. Participant 7: “I didn’t understand before, but now that I’m sick, I’ve started to learn and realize its importance. Besides the stroke, I also have hypertension. Now, I take hypertension medication every day, and I don't stop it randomly.” In addition, most of the patients were still very active and took the initiative to participate in disease management. Participant 9: “Ask more, listen more, and you gradually learn. For example, now, there are some things (smoking, drinking) I don't do anymore; I dare not.

Increased compliance

Most stroke patients reported increased adherence to treatment and improved health behaviours. Participant 10: I no longer consume alcohol and smoke. Now I take medication correctly, and take treatment as required. Participant 12: I listen to the doctor now and get good treatment.

Increased initiative in rehabilitation exercise

Most stroke patients could strengthen their rehabilitation exercise, improving health outcomes. Participant 2: It’s good to move more when you’re not doing anything (laughs). Participant 9: Exercise more so that I can get better faster, I can’t be sloppy at all.

Final analysis phase results

Through rigorous theoretical analysis and field investigation, this study established the conceptual attributes of self-advocacy in stroke patients. Self-advocacy was defined by five core attributes: self-awareness, self-care level, self-decision making, effective communication and seeking support. This study clearly illustrates the conceptual content of self-advocacy in stroke patients. ^{Table 5} illustrates data analysis in each of the three study phases.

Table 5

Attribute categories, subcategories and codes determined on analysis phase

The phase of the study	Subcategories	Codes
Theoretical phase	Self-cognition	The patient accepts and adjusts to the disease state as an aspect of life, not a transient phase and the most important thing is to live their life in the moment.
	Self-decision-making	Patients have access to relevant and reliable health information, weigh the risks and benefits of choices based on their individual circumstances and are able to make decisions based on priorities.
	Effective communication	Asking questions, sharing opinion preferences, discussing personal experiences and openly communicating issues.
	Social connection	Gain support and strength through social connection with self and others.
Field work phase	Self-awareness	Acceptance of disease, strong beliefs and positive attitudes.
	Self-care knowledge and abilities	Have some knowledge and ability to take care of themselves.
	Self-decision-making	Decision-making based on acquired information and past experience.
	Effective communication	Actively communicating with healthcare professionals to articulate their care needs.
	Seeking support	Self-assessment, affirmation of self-worth and gaining strength from the support of family, friends and group organisations.
The analytical phase	Self-advocacy refers to the ability of stroke patients to comprehend and articulate their personal needs and care preferences, make proactive and personally meaningful decisions, engage in effective communication with healthcare providers, and gain strength by seeking support from others. Self-advocacy consists of five conceptual attributes, including: self-awareness, self-care level (self-cognition/self-care knowledge and abilities), self-decision making, effective communication and seeking support.

In this study, self-advocacy refers to a stroke patients’ ability to comprehend and articulate personal needs and care preferences, make proactive and personally meaningful decisions, communicate effectively with healthcare providers, and gain strength through seeking support from others. The prerequisite for self-advocacy in stroke patients is illness, with conceptual attributes including self-awareness, self-care level, self-decision-making, effective communication and seeking support. The antecedents include demographic factors, disease-related elements, health literacy, psychological state and social support, while the consequences are improved and maintained health behaviours. The conceptual framework of self-advocacy for stroke patients is shown in ^{figure 2}.

Figure 2. Conceptual framework of self-advocacy in stroke patients.

Discussion

This study defines the conceptual connotation of self-advocacy for stroke patients through a mixed concept analysis. We establish that self-advocacy in stroke patients is a complex, multidimensional construct requiring holistic consideration. In the theoretical phase, literature review was employed to analyse the conceptual connotations of self-advocacy among chronic disease patients, summarising the conceptual attributes, antecedents and outcomes of self-advocacy among chronic disease patients. Self-advocacy among chronic disease patients refers to the ability to manage their own conditions in the face of disease challenges, including self-knowledge, self-decision-making, effective communication and the power of connection. This conceptual framework is grounded in patients’ authentic experiences, centring on their rights to participate in health management, embodying a person-centred, holistic nursing care perspective. As a type of chronic disease, the conceptual framework of self-advocacy among chronic disease patients provides a reference for further in-depth and multi-faceted exploration of the core attributes and conceptual framework of self-advocacy among stroke patients. During the fieldwork phase, the conceptual framework of self-advocacy for stroke patients was further clarified and enriched through the refinement, analysis and integration of interview data. Additionally, the refinement of factors influencing self-advocacy for stroke patients expanded the depth and breadth of understanding regarding the interaction pathways between this core variable and other potential influencing factors. Finally, the first two phases were analysed and integrated to form the conceptual framework of self-advocacy for stroke patients.

In fact, the definition of the concept of self-advocacy has been studied in other groups. In HIV/AIDS patients, Brashers et al²⁷ defined self-advocacy as patients taking a participatory stance in healthcare interactions, becoming proactive agents in managing their own diseases. It mainly includes three dimensions: increasing disease education, enhancing confidence in disease recovery and consciously avoiding blind adherence. Test et al⁵⁸ proposed a conceptual framework of self-advocacy through a literature review, which includes four main components: knowledge of self; knowledge of rights; communication; and leadership. Thomas et al²⁹ constructed a conceptual framework of self-advocacy for cancer patients through a systematic literature review.

Self-advocacy consists of three main components: informed decision-making; effective communication; and social support. Numerous studies have shown that self-advocacy is critical in individual health management. Self-advocacy reduces the burden of disease on patients, improves treatment compliance, enhances quality of life and increases satisfaction with care.^{7 51} The study showed that individuals obtain the information and support necessary for managing their respective diseases through self-advocacy. Self-advocates actively seek solutions to issues impacting their lives,⁵² significantly enhancing overall well-being in terms of physical, mental, social and emotional functioning. Beyond these immediate impacts, the study reveals that self-advocacy can also improve one’s self-concept, control and autonomy,⁵³ empowering patients with a sense of authority, fostering disease control and strengthening autonomy awareness. The ability of self-advocacy significantly impacts one’s health and overall quality of life.^{12 59} In the literature on health education and promotion, self-advocacy is closely associated with one’s intrinsic confidence in health, a sense of disease control, personal decision-making and the ability to solve problems independently. This includes autonomy, self-efficacy, self-confidence, effective communication and behavioural decision-making skills. Thus, through self-advocacy, stroke patients can help themselves with effective health management in a multichannel way, thereby enhancing their sense of control and satisfaction in maintaining their own health.

This study primarily summarises the conceptual attributes and primary antecedents and consequences of self-advocacy in stroke patients, providing a scientific reference basis for a deeper understanding of self-advocacy in stroke patients, the development of related assessment tools and the exploration of its influencing factors. Stroke rehabilitation is a long-term process, and health management can help maximise the health benefits of stroke patients, thereby reducing the burden of disease and improving health outcomes. Therefore, taking ‘self-advocacy’ as a breakthrough point and defining the conceptual connotation of self-advocacy for stroke patients can help further investigate its current research status and underlying mechanisms, clarify the key role of health management for stroke patients, and potentially provide new perspectives for addressing health management challenges and enriching related theories.

Limitation

There are some limitations to this study. First, in the literature phase, the lack of current research on self-advocacy in stroke patients led to the expansion of the study population to chronically ill patients, which may have limited the understanding of the concept of self-advocacy in stroke patients. Second, we included only stroke patients and not stakeholders for stroke patients (eg., caregivers and healthcare providers) in the field study phase, a limitation that may restrict the expansion of the conceptual connotations of self-advocacy.

Conclusions

This study employed Schwartz-Barcott and Kim’s mixed concept analysis method to analyse the concept of self-advocacy. The definition of the conceptual connotation of self-advocacy among stroke patients, clarifying the conceptual structural dimensions and developing inter-conceptual relationships, has laid a solid foundation for subsequent research. On the one hand, this provides a strong basis for developing assessment tools in the future; on the other hand, it aids in exploring the potential mechanisms underlying self-advocacy among stroke patients. Self-advocacy applies to all stages of stroke patient health management. Qualitative and quantitative research methods can be employed in future research, focusing on patients' genuine experiences and centring on patients to grant them the right to participate in disease management, embodying a patient-centred, holistic nursing service philosophy.

Footnote

Contributors Z-xZ is the research’s guarantor. Conceptualisation, ZZ and Z-xZ; methodology, ZZ, JC, SW and CZ; formal analysis, ZZ, XW and BL; investigation, ZZ, XW, BL and HJ; writing—original draft preparation, ZZ; writing—review and editing, ZZ, JC, SW, Y-XM and CZ; supervision, JC, BL and Z-xZ; project administration, Z-xZ. 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 not involved in the design, or conduct, or reporting, or dissemination plans of this research.

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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