Experiences and needs of older patients with stroke in China involved in rehabilitation decision-making: a qualitative study

Abstract

Background

Shared decision-making is recommended for stroke rehabilitation. However, the complexity of the rehabilitation modalities exposes patients to decision-making conflicts, exacerbates their disabilities, and diminishes their quality of life. This study aimed to explore the experiences and needs of older patients with stroke in China during rehabilitation decision-making, providing a reference for developing decision-support strategies.

Methods

A qualitative phenomenological design was used to explore the experiences and needs of older patients with stroke in China. Purposive sampling was used to recruit 31 older Chinese patients with stroke. The participants participated in face-to-face, semi-structured, and in-depth interviews. Data were analyzed using inductive thematic analysis.

Results

The key themes identified include (1) mixed feelings in shared decision-making, (2) multiple barriers hinder the possibility of participating in shared decision-making, (3) Delegating rehabilitation decisions to surrogates, (4) gaps between reality and expectation, and (5) decision fatigue from lack of continuity in the rehabilitation health care system.

Conclusions

Older patients with stroke in China have complex rehabilitation decision-making experiences and needs and face multiple obstacles when participating in shared decision-making. They lack an effective shared decision-making support system to assist them. Providing patients with comprehensive support (such as emotional and informational), strengthening the construction of a continuous rehabilitation system, alleviating economic pressure, and promoting patient participation in rehabilitation decision-making are necessary.

Background

Stroke is a global health issue that poses a serious threat to human well-being. China has the highest number of patients with stroke, with an incidence rate of 505.2 per 100,000 and more than 28 million patients [1]. Among these patients, 50.81% are over 60 years old, and 75% have functional disorders such as speech, swallowing, and limb disabilities [2]. Various rehabilitation treatments and intervention measures have been developed to reduce the healthcare burden, decrease disability, and improve the quality of life of older patients with stroke [3]. Rehabilitation medicine differs from preventive and clinical medicine in its targets, methods, and goals. It emphasizes the active participation of patients, and the therapeutic effect varies based on the degree of patient involvement, earning it the designation of a third medicine [4]. Differences in rehabilitation goals, level of disabilities, and other factors lead to varying levels of patient participation in rehabilitation exercises, resulting in greater uncertainty in the outcome of rehabilitation [5]. Additionally, patients tend to adopt a paternalistic approach to decision-making in the early stages and rarely take the initiative in rehabilitation decisions [6].

As patients’ health literacy improves, this traditional paternalistic decision-making model is increasingly challenged, leading to the emergence of shared decision-making (SDM). SDM is a patient-centered model based on doctor-patient collaboration and integrates the best evidence, patient preferences, and values to help patients make informed health decisions [7]. Charles et al. [8] first proposed the concept of SDM, highlighting four characteristics: involvement of at least two parties, the doctor and the patient, in every decision-making process step, both parties fully sharing information, and reaching a consensus on decision-making. With the continuous development of the SDM, many scholars have proposed various models and theories to promote its application in clinical practice. Common models include the Ottawa Decision Support Framework (ODSF) [9], Shared Treatment Decision-Making Model [10] and Three-Step SDM Model [11]. The ODSF is the most widely used, serving as a universal decision-support model and a guiding framework for constructing decision-making support tools and health education. Currently, SDM has been applied globally to cancer, cardiovascular diseases, and other fields, and has achieved significant clinical practice results [12]. It enhances patients’ understanding of disease-related issues, improves treatment compliance, and leads to better rehabilitation outcomes [13]. Studies have shown that SDM greatly helps patients with stroke improve their knowledge of their condition and participation in decision-making, which enhances medical compliance, reshapes the doctor-patient relationship, and boosts patient satisfaction [14].

However, SDM has encountered difficulties in rehabilitation in recent years. Patients with stroke have more options for their rehabilitation journey as advancements in rehabilitation medicine have introduced Chinese physiotherapy, virtual reality technology, botulinum toxin type A, brain-computer interfaces, and robot-assisted training. Providing personalized and optimal rehabilitation plans and adjusting them promptly according to the patient’s rehabilitation progress and changes in needs [15]. The uncertainty of the prognosis and associated rehabilitation costs may cause decision-making conflicts for patients. These challenges delay the initiation of rehabilitation treatment, potentially missing the optimal intervention time and exacerbating patients’ disabilities, consequently significantly impacting their long-term quality of life [14]. A qualitative study showed that although most clinicians believed that all patients with stroke could benefit from rehabilitation, they acknowledged that this was not always the case. They noted challenges in effectively participating in the rehabilitation decision-making process and suggested addressing gaps in support for this process [16].

Currently, research mainly focuses on rehabilitation medication decision-making in patients with stroke, with limited research on the rehabilitation decision-making experience and reasons for older patients with stroke in China [14]. Unlike Western culture, Chinese Confucian culture emphasizes harmony, obedience, and respect. Additionally, China has a large population base, the social language is relatively implicit and indirect, and medical staff are extremely busy, making the promotion of SDM in China challenging [17]. Therefore, this study aimed to gain in-depth insight into the decision-making experiences of older patients with stroke participating in rehabilitation from a Chinese perspective, providing important insights into the limited evidence on this topic. The knowledge gained from this study will help clinicians and other multidisciplinary team professionals better support older patients with stroke in mainland China when making rehabilitation treatment decisions. This understanding may also apply to patients with stroke living in Western countries and those in countries with the same socioeconomic background as mainland China.

The research question in this study was as follows: What are the specific experiences and needs of older Chinese patients with stroke in the rehabilitation decision-making process?

Methods

Study design

Qualitative thematic analysis based on Phenomenology [18] is a method that observes specific phenomena, analyzes their internal and external components, extracts key elements, and explores the relationship between the elements and the relationship between the elements and the surrounding context. It is often used to focus on subjective experiences and understand life experiences, making it suitable for answering many questions related to the research topic. We used it to reveal the experiences and needs of older patients with stroke in rehabilitation treatment selection and to provide a basis for promoting patient involvement in decision-making.

Participants selection

A purposive sampling method was chosen to recruit participants to improve sample representativeness following the principle of diversity by considering age, occupation, marital status, monthly income, and disease type. The inclusion criteria were as follows: (1) diagnosis of stroke confirmed by computed tomography scan or clinical symptoms, (2) age ≥ 60 years, and (3) informed consent and voluntary enrollment in the study. The exclusion criteria were as follows: (1) inability to communicate normally; (2) comorbidities with severe organic pathologies such as heart, liver, and kidney; and (3) presence of severe psychiatric or cognitive disorders.

Data collection

Semi-structured interviews were conducted by five researchers (K L, S C, T Y, H L, X Y, and L X) between July and November 2023 at a tertiary care hospital located in Shanghai. The initial interview outline was based on a literature review and pre-interviews. The interview used in this study was developed specifically for this research and has not been published elsewhere. Refer to the Appendix for the detailed interview guideline and topics (Additional file 1). Each interview was conducted in a quiet, spacious, and bright room to avoid interruptions. Family members could accompany the patients if necessary. They were informed before the interview that they would assist and accompany the interviewees rather than answer on their behalf to minimize bias. Before conducting the interviews, all the researchers received systematic qualitative interview training. During the interviews, the researchers encouraged the interviewees to express their subjective feelings actively, and attention was paid to their voice tones, body movements, and other non-verbal information. Each interview lasted approximately 20–40 min, and data were collected until saturation and no new themes emerged. The entire process was audio recorded, notes were taken, and all recordings were transcribed within 24 h.

Data analysis

The study was presented according to the Comprehensive Guidelines for Reporting of Qualitative Research (COREQ) [19]. The transcribed interviews were analyzed using inductive thematic analysis [20]. Initially, the transcripts were read multiple times to gain insight. The themes were generalized during the coding process. Before coding, the transcripts were collected into a single file and reviewed multiple times. A consensus-based framework for text interpretation was created, and themes and subthemes were coded. The findings are organized into recurring themes, each with multiple subthemes generated from the data analysis. The transcribed texts were independently read by two researchers, who discussed the content to reach a consensus. When a disagreement occurred, the researchers returned to the participants’ initial interview data and consulted with the research team. A qualitative analysis software package (NVivo, version 11) was used to facilitate data coding and retrieval. All interviews were conducted in Chinese. Professional translators handled the initial translation, which was then back-translated by bilingual experts. We also focused on the cultural context of the interview content, employing culturally adapted translation strategies to reduce cultural bias. Additionally, we conducted member checks by discussing the findings with participants to validate data accuracy and ensure consistent interpretations.

Ethics approval

The researcher obtained consent from the hospital before the interviews and provided the project and ethical approval documents. The ethics approval number for this project is 2020-KN82-01. Before conducting the study, the researchers explained the study’s objectives, methods, and other relevant information to all participants. The participants were informed that the interviews would be recorded and that they would be free to withdraw at any time. Informed consent was obtained before each interview. All data were used solely for this study, and numerical identifiers (e.g., N1 and N2) were used instead of the patients’ real names. Written informed consent was obtained from eligible older patients with stroke who contacted the researchers and expressed an interest in the study.

Results

This qualitative study recruited 31 participants (17 men and 14 women). Although 13 patients had mild speech disorders, all completed the interviews. The included patients were all over 60 years old, which we call older patients. The characteristics of older patients who survived stroke included in this study are shown in Table 1.

Table 1 Participant demographics of (n = 31)

Mixed feelings in SDM

Most participants had experienced a stroke for the first time and could not manage its aftermath and rehabilitation. Even those who have experienced multiple strokes experience mixed emotions when working with healthcare providers.

Feel at a loss

A stroke initially leaves patients with a feeling as if their brain is in chaos, and they may not know how to make decisions about rehabilitation.

When the doctors discussed rehabilitation with me and expressed their intention to involve me in shared decision-making, I felt disoriented and bewildered. (N17)

To be honest, I’m not sure what I need. When doctors asked about my preferences, I felt at a loss. Expressing my feelings is challenging for me. (N8)

Recently, it’s been very confusing for me. I don’t know how to choose. And I don’t want to seek help because I know that its ineffectiveness. (N29)

Feeling nervous, depressed, and anxious

The participants felt nervous, depressed, and anxious after the stroke and were uncertain about how to engage in decision-making with their doctors. These emotions hindered their ability to participate in SDM.

I feel so nervous and anxious when I’m talking with my doctor, let alone when participating in rehabilitation decision-making. (N25)

I feel really down, and my physical function is deteriorating. This puts me in no mood to consider participating in decision-making (N24).

Multiple barriers hinder the possibility of participating in SDM

Patients with stroke do not readily participate in SDM with healthcare workers. Barriers may stem from healthcare providers, including doctors or nurses, as well as from the survivors themselves. These barriers span issues related to information, knowledge, and communication.

Challenges in identifying rehabilitation information

Media platforms offer a plethora of information, including advertisements to attract the public to browse and generate revenue. Unfortunately, this information often conveys inaccurate or exaggerated claims.

Overwhelmed by the abundance of rehabilitation information online. I am confused about which one is right. (N2)

I can’t believe the information I see in the media. Does anyone know if it’s an advertisement? (N1)

Limited understanding of SDM

Most participants were previously unfamiliar with SDM, as they were accustomed to following healthcare workers’ advice without much skepticism.

I don’t know what shared decision-making is, I never knew about it and never participated in it. (N16)

The doctor asked me to participate in the decision-making, but I don’t understand the meaning of shared decision-making at all. Because I listened to the doctor before. (N8)

Insufficient communication with healthcare workers

Patients often face communication challenges with healthcare workers because of differences in education levels or specialized knowledge.

Sometimes, the doctor would tell me about my recovery, but I was semi-illiterate and rarely spoke much. (N23)

They often mention terms that seem opaque to me, such as virtual reality, brain computer interface, creotoxin, and transcranial electrical stimulation. They didn’t communicate with me in detail. (N19)

Delegating rehabilitation decisions to surrogates

In this study, the participants often opted to involve healthcare workers or their relatives in making rehabilitation decisions instead of making these decisions independently.

Dependent on families

As a result of the traditional Chinese culture, female patients with stroke often regard their husbands as central figures in their families, valuing their advice highly. Conversely, older patients with stroke tend to believe that their adult children possess greater knowledge of various aspects and prefer entrusting decision-making to them. Patients with stroke tend to adhere to their families’ decisions regarding rehabilitation.

I listen my husband to make decisions for my rehabilitation. At home, we rely on his advice for major issues, and he plays a central role in our household. (N14)

I frequently seek advice from my daughter, and every time I visit the doctor, she accompanies me and communicates on my behalf. I am confident that she wants what is best for me. (N9)

Dependent on authority

Most participants regarded doctors and nurses as healthcare authorities, highly trusting their expertise. Patients with stroke may rely heavily on the advice and recommendations of their healthcare team, viewing them as essential partners in their journey toward recovery.

I believe in doctors every time they make decisions for me. My thoughts are not important. (N29)

I am willing to follow their guidance and instructions. I have faith in their expertise, and we have collaboratively discussed my rehabilitation, crafting a plan together. (N14)

Gaps between reality and expectation

Participants expressed various demands and expectations, such as a multiform of rehabilitation information to enhance their knowledge and involvement in rehabilitation decision-making. Additionally, the respondents hoped the medical staff would pay more attention to them when formulating rehabilitation plans. Moreover, they considered financial support or comprehensive medical insurance crucial to enhance their rehabilitation and aid recovery. However, they did not receive the assistance they desired.

Anticipating multiple forms of knowledge transmission

Different patients with stroke have varying health information needs, and how information is communicated is crucial. Providing information in multiple forms is important to facilitate their participation in SDM.

Could you recommend various channels, such as handbooks accompanied by videos, and other resources to help me become more familiar with these concepts? (N23)

You could leverage the WeChat Mini Program to share health information and guide us on participating in shared decision-making. I frequently use it to gain knowledge. (N15)

Anticipating increased attention from healthcare workers

Whether in hospitals or community clinics, medical staff are always too busy to focus on patient details. Although patients want doctors and nurses to pay more attention to them, this is often challenging.

Shared decision-making is a good idea, but it is undeniable that doctors and nurses are busy and it is normal that they cannot pay attention to my decision-making process. (N31)

They didn’t have time to pay attention to me. Whenever I raised a problem, they didn’t take it seriously. (N27)

Desire for financial support and expansion of insurance coverage

Stroke rehabilitation must be maintained for a long period. The high costs incurred during rehabilitation put patients under greater financial pressure. Economic factors limit patient participation in rehabilitation decision-making.

Rehabilitation is a bottomless pit, and I don’t have health insurance, so I can’t afford it. so I will consider the financial factor when choosing the type of rehabilitation. (N18)

Some of the programs are so advanced that I can’t afford. I’d like to get another health insurance and (when making decisions) see which one will reimburse me and share some of the cost. (N21)

Decision fatigue from lack of continuity in the rehabilitation health care system

Participants who experienced SDM expressed that the decision-making process was overwhelmingly burdensome. The absence of a continuous rehabilitation system forces patients to make constant decisions in three scenarios: hospitals, communities, and homes. They highlighted the numerous decisions that must be made, noting that most were intricate and prolonged. Many participants conveyed a sense of exhaustion from the repetitive nature of decision-making, emphasizing the mental fatigue associated with repeated navigation through complex choices.

Too much decision-making

Sometimes, rehabilitation decisions exhibit similarities between community healthcare centers and hospitals. Patients with stroke may find it difficult to make repeat decisions. The incomplete rehabilitation system requires patients to make decisions many times in hospital, community, and home situations, which leads to decision-making fatigue and reduces their adherence to rehabilitation exercises.

For larger rehabilitation projects, I am accustomed to going to the hospital. For smaller ones, I prefer to undergo rehabilitation at the community healthcare center near my home. However, I have to make the same decision again and again, because they do have not any system connection. I feel kind of tired. (N30)

Too complex for decision-making

Many participants expressed concerns regarding the insufficient availability of rehabilitation equipment in the community. When opting for community-based rehabilitation, they found it less feasible, often requiring them to visit a hospital for rehabilitation, which was perceived as overly complex and difficult to understand. This situation causes the patients to experience decision-making fatigue.

Sometimes, I find that I have to go to the hospital for rehabilitation because the community is not well equipped. However, the decision-making process for hospital rehabilitation is quite complicated and involves many questions and examinations. (N23)

Discussion

This study explored the experiences and needs of older Chinese patients with stroke during the SDM process for rehabilitation. The findings revealed that patients often experienced mixed feelings, such as loss, depression, and anxiety. They encounter multiple barriers to participating in decision-making and often rely on healthcare workers or relatives. Discrepancies exist between reality and expectations, and the lack of continuity in the rehabilitation healthcare system contributes to decision-making fatigue.

SDM in rehabilitation can promote functional recovery in patients with stroke, improve their health behaviors, and strengthen the doctor-patient relationship [21, 22]. However, this study found that older Chinese patients with stroke had negative experiences such as loss, tension, depression, and anxiety during the decision-making process, similar to the findings of a study in Sweden [23]. The unexpected onset of stroke, the cognitive deficiencies of older patients, and the influence of disability contribute to increased feelings of uncertainty and negative emotions during the decision-making process [24]. Additionally, healthcare workers may sometimes prioritize survival over rehabilitation and fail to inform older patients with stroke about rehabilitation options in time [25]. These negative experiences may lead to avoidance behaviors in patients with stroke, greatly reducing their quality of life during rehabilitation [26]. Therefore, clinicians should increase communication with patients, provide them with continuous psychological support through interventions such as music therapy, and promptly refer them to mental health services.

This study found that surrogate decision-makers substantially impacted the participation of older patients with stroke in the decision-making process. Research [27] has shown that most patients with stroke have the ability and willingness to make decisions; however, direct participation in decision-making by surrogate decision-makers may impair their self-esteem and autonomy. In mainland China, Confucian philosophy influences societal norms, emphasizing principles such as “father is kind and son is filial” and “husband is righteous and wife is obedient” as core family ethics [28]. Consequently, patients often respect the advice of their families and hope to maintain harmonious relationships. Surrogate decision-making may be attributed to the family structure and concepts prevalent in Eastern countries. These structures tend to foster excessive dependence of older patients on their spouses or children, substantially limiting the direct involvement of patients in decision-making [29]. Family members should be guided to understand the appropriate level of support for patients and minimize negative during the rehabilitation decision-making process.

Additionally, some healthcare professionals communicate directly with the patients’ families, neglecting the needs and feelings of older patients [29]. Confucian culture in China emphasizes obedience and respect. This cultural tradition contains more paternalistic and asymmetric doctor-patient relationships, violating the principle of equal information sharing between doctors and patients in SDM. Older patients unconditionally recognize the authority of doctors, which limits their participation in decision-making and reduces the quality of decision-making and the expected effects of rehabilitation [30, 31]. Therefore, medical staff should pay attention to patients’ willingness to participate in decision-making, give them ample opportunities to express themselves, and avoid concealing their true willingness to participate.

This study found that patients faced multiple barriers in making decisions regarding rehabilitation. Multifaceted decision-making expectations were also unmet, such as anticipating multiple forms of knowledge transmission and increasing attention from healthcare workers. The uncertainty surrounding disease recurrence and expected rehabilitation outcomes means patients with stroke urgently require relevant information as the basis for their final decisions during rehabilitation [32]. However, few patients receive adequate information when discussing rehabilitation with healthcare professionals [33]. Patient decision aids (PDAs) [34] are evidence-based, effective tools that provide rehabilitation information, digitize professional guidance from healthcare professionals to patients, and help them weigh the pros and cons of their decisions. PDAs exist in various forms, including decision aid manuals, video collections, decision applets, and questionnaires. They help patients clarify their values, increase their knowledge, facilitate doctor-patient communication, assist patients in making prudent decisions, and reduce decision conflicts [35, 36]. Given China’s traditional cultural background and medical environment, PDAs for various diseases in Chinese patients are mostly designed based on the demographic and psychological characteristics of Chinese society. They use easy-to-understand language to introduce decision-making information and emphasize patient participation, bridging the information gap between patients and alleviating decision-making dilemmas. As the Chinese population ages, PDAs for rehabilitation decision-making in older patients with stroke are urgently required. Future studies should consider the social situation in China and lower health literacy levels of older patients to fill this research gap [37].

This study found that the continuous rehabilitation system was flawed, resulting in patients making repeated decisions in multiple settings, such as hospitals, communities, and homes. Repeated decision-making behaviors increase patients’ cognitive load, weaken their ability to allocate cognitive resources, lead to decision fatigue, and reduce compliance with rehabilitation exercises. Technical, security, and interest reasons prevent access to medical records and treatment modalities across organizations, leading to “information silos.” This limitation could hinder the development of decision-support systems for patients with stroke [38]. In China’s developed cities, the continuous rehabilitation system integrates rehabilitation resources from institutions at different levels and shares resources through inter-institutional referrals. Simultaneously, it divides rehabilitation resources into three levels to achieve phased rehabilitation from hospital to home and introduces Internet + technology for support [39]. Although a macro-framework provides support for the system, existing problems are obvious. Three-level rehabilitation resources are in short supply, especially in rural China, where the level of rehabilitation is very limited, making it difficult to achieve a sustainable rehabilitation system. Therefore, rehabilitation decisions must be made on multiple fronts. Advocating for implementing a continuous rehabilitation system to reduce patients’ decision fatigue and improve rehabilitation experience is crucial.

Financial pressure is a major factor influencing patient decision-making regarding rehabilitation [14]. Most patients reported that new and effective rehabilitation methods were too expensive. For example, home rehabilitation exercise robots can cost up to $ 100,000, far exceeding the affordability of the average family [40]. Currently, the medical insurance coverage for stroke rehabilitation programs is not comprehensive, and emerging smart rehabilitation technologies have not yet been included in medical insurance [41]. Research has shown that financial pressure may prevent patients from choosing an ideal rehabilitation plan, thus affecting their decision-making enthusiasm and participation [42]. Older patients expressed that the financial burden limited their ability to choose the best rehabilitation plan [43]. These findings indicate that patients’ choices are no longer based solely on personal preferences but are forced to consider economic factors. Financial pressure has become an important barrier to SDM, affecting patients’ recovery experiences and potentially leading to adverse impacts on long-term health outcomes. Attention should be paid to the impact of financial factors on the decision-making process, and efforts should be made to reduce the economic burden on patients through policy measures, such as strengthening medical insurance for patients with stroke to enhance their sense of participation and decision-making ability.

However, this study has limitations, as only patients from a tertiary hospital were included. Future research should expand the region and sample size to provide a reference for localized rehabilitation decision support strategies. Additionally, efforts should focus on developing and gradually building rehabilitation decision-making assistance tools suitable for older patients with stroke in China to promote the in-depth practice of SDM in rehabilitation.

Conclusion

This study provides new insights into the experiences and needs of older Chinese patients with stroke in participating in shared rehabilitation decision-making through a qualitative research approach. In SDM, medical staff must provide patients with psychological support, actively communicate with patients, understand their willingness to participate in decision-making, and provide various forms of information support. Simultaneously, the government needs to strengthen the construction of a continuous rehabilitation system, expand the scope of medical insurance reimbursement in rehabilitation, reduce economic pressure, and improve patient decision-making satisfaction and healthcare service quality.