2.1. Design

This study used a phenomenological qualitative design to understand the experience of the family caregivers of stroke patients with disabilities and explore their care needs at different phases.

2.2. Participants and sampling

Family caregivers of stroke incapacitated patients who were hospitalized and discharged from the Department of Neurology of a tertiary hospital in Xiangtan City from February 2024 to November 2024 were selected. Potential participants were identified by the research team through daily screenings of patient admission records and consultations with attending neurologists. Eligible patients were then approached by a member of the research team, who provided them with a detailed explanation of the study objectives, procedures, and potential risks and benefits. Purpose sampling and maximum variation sampling were used. Recruitment continued until thematic saturation was achieved, defined as the point where no novel themes emerged from consecutive interviews. Each case corresponded to only one caregiver, and both patients and caregivers were required to meet the inclusion and exclusion criteria. The sample included caregivers from both rural and urban settings, with diverse educational backgrounds and caregiving roles. This diversity enhanced the potential applicability of findings to caregivers in similar socioeconomic and cultural contexts within China.

Inclusion criteria of patient: (1) patients with first-ever stroke confirmed by cranial CT or MRI in accordance with updated American Heart Association and American Stroke Association criteria [12]; (2) age ≥ 18 years; (3) daily living scale score (Barthel’s index)≤60 during hospitalization, and stabilized vital signs; and (4) home or community-based rehabilitation after discharge from the hospital. Patient exclusion criteria: (1) patients with severe cardiac, pulmonary, hepatic, and renal diseases; (2) patients whose conditions worsened during treatment and who could not continue treatment.

Inclusion criteria for family caregivers: (1) family members of the patient, including spouse, parents, children, daughter-in-law (son-in-law), siblings, etc.; (2) taking primary care of the patient during and after hospitalization (≥4 h per day; if there are more than one caregiver, the one who takes care of the patient for the longest phase of time will be selected); (3) aged ≥18 years old; (4) conscious, with good reading comprehension and communication and expression skills; and (6) voluntary participation. Exclusion criteria for family caregivers: (1) people who have participated in training related to stroke patient care; (2) paid caregivers such as domestic helper.

A total of 48 cases were interviewed across five phase. Since the start of this study, no shedding phenomenon has occurred. Interviews were conducted at the diagnosis phase (diagnosis was clear and started in general 3–7 d), the stabilization phase (the condition was stable, there was no new cerebral hemorrhage or cerebral infarction, and there was no obvious enlargement of the foci), the discharge preparation phase (from the time when the patient was about to finish the main treatment in the hospital to the time when he/she was discharged), the adjustment phase (3 months after discharge and going home), and the adaptation phase (3–6 months after discharge and going home). Each phase was denoted by the letters A, B, C, D, and E.The number of formal interviews was 10, 9, 9, 10 and 10 respectively.

2.3. Data collection

This study used a semi-structured interview to interview family caregivers face-to-face.The patient’s medical record was reviewed before the interview to understand the patient’s current medical history, past history, examination results, treatment and care. With the assistance of a expert who had done qualitative research, the interviewer explained the purpose, significance, and privacy protection of the interview to the respondent, and obtained informed consent. And we were committed to protecting privacy and using data only for scientific research.

Each interviewees had a scheduled appointment in advance to ensure that the interviews were conducted without interruptions or distractions. Before the interview began, each interviewees provided informed consent, and demographic data were collected. The interview guide was developed based on the research objectives, the theoretical framework of Timing It Right theory, and a thorough review of relevant literature. The guide was designed to address key themes related to the caregivers’ experiences and needs, while simultaneously allowing for the exploration of emergent topics not initially anticipated by the researchers. Prior to the formal interviews, three pilot interviews were conducted to test the feasibility and reliability of the interview guide, ensuring that the research process was well-prepared and refined before full implementation.

The research team consisted of nursing managers, health managers, and clinical nurses, one of whom had experience in caring for family members. The researcher was responsible for the interview communication with the study subjects; one stroke health manager was responsible for recruiting the patients, recording the patients’ expressions and movements during the interviews, and transcribing the interviews into text. The interview time was 30–60 min. Face-to-face interviews were mainly conducted in the study room and office of the department. Each interview was conducted in a quiet environment without the presence of irrelevant persons. All interviewees were interviewed only once, and no repeated interviews occurred. The interview guide o was shown in Table 1.

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Table 1. The Interview Guide for Participants in the Five Various Phases.

https://doi.org/10.1371/journal.pone.0325671.t001

2.4. Ethics consideration

This study was approved by the Ethics Committee of Xiangtan Central Hospital (register NO.2023-09-013). All methods were performed in accordance with the consolidated criteria for reporting qualitative research (COREQ) [13]. The study complied with the Declaration of Helsinki; all participants signed informed consent forms and participated anonymously.

2.5. Rigor and reflexivity

The researchers were guided by Morse’s strategies to ensure the rigor and credibility of the findings. For example, each interview followed a consistent process, using the same opening questions and using similar prompts to ask participants for more information. The interviews were conducted by the researcher (Miaozhen Wang) and supported by a neurology clinical nurse (Ke Wang). They all had received training in qualitative interview methods and knowledge of psychological care before the interviews. The principal investigator (Fangqun Cheng) was a nursing administrator trained in public healthand, having the training and experience to conduct qualitative research. Ke Wang was an experienced qualitative researcher who trained others in qualitative methods and software. All researchers had no previous relationship with the participants.

The research team acknowledged potential biases related to their professional roles. Nursing administrators might prioritize systemic interventions, while clinical nurses could focus on practical caregiving challenges. To address this, regular reflective discussions and peer debriefing were conducted during data analysis. Emerging themes were cross-validated through member checking with participants, ensuring interpretations remained grounded in their perspectives.

During the interview, the interviewers remained neutral and avoided leading questions whilst observing and recording the participant’s voice, mood changes, and body movements. Researchers only made appropriate follow-up questions and did not express their own views. Then tentative questions (e.g., ‘Can you expound?’) were added where necessary to fully understand the participants’ needs. After each interview, the interviewer recorded the gains and losses of the interview in a reflective diary for improvement. Theresearch team was supervised throughout by a senior researcher (Fangqun Cheng).

2.6. Data analysis

To ensure the completeness and accuracy of the data, within 24 hours of each interview, the audio recordings were transcribed verbatim into text and organized. The data was imported into the NVivo 12 software subsequently. A triangulation approach was employed to enhance rigor: two researchers independently coded the data using Braun and Clarke’s thematic analysis method [14], with discrepancies resolved through iterative discussions. If consensus was not reached, a third senior researcher with expertise in qualitative methods was consulted to review the data and finalize coding decisions. The analytical process included six phases: (1) Immersive reading of all transcripts to gain a holistic understanding of caregivers’ experiences; (2) Extracting significant statements related to caregiving needs and challenges; (3) Open coding of recurring ideas to generate initial codes, followed by grouping codes into initial categories;(4) Assembling coded categories into preliminary themes; (5) Refining themes through constant comparison across transcripts to ensure coherence and distinctiveness; (6) Validating themes through peer debriefing with independent qualitative researchers and member checking. The initial coding was independently carried out by two authors, with a third author regularly monitoring and intervening in case of differing opinions. Encoding attempts to identify and describe aspects and their outcomes were considered to constitute contextual or mechanistic features. Then, the fourth author reviewed all coding results. In the process of inductive coding and deductive classification, if there was any inconsistency, the research team engaged in discussions to achieve consensus, thereby ensuring the precision and accuracy of the study’s outcomes. Finally, the research group discussed and reviewed all the identified themes and categories. We removed the participant identification and assigned each text an identification code to maintain the confidentiality of the participants.

3.1. General information of participants

A total of 48 family caregivers of stroke with disabilities were selected to participate in the study. Among the caregivers, 12 were male and 36 were female, with a median age of 52. General information of all the participants is shown in Table 2.

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Table 2. General information of all the participants.

https://doi.org/10.1371/journal.pone.0325671.t002

3.2. Thematic analysis

The findings of this study were synthesized into a thematic framework (Fig 1) spanning the caregiving journey across five distinct phases: Diagnosis, Stabilization, Discharge Preparation, Adjustment, and Adaptation. This framework highlights how caregivers’ roles evolve in response to both patient recovery trajectories and systemic constraints. Each phase is associated with specific themes that reflect the evolving needs and experiences of family caregivers of stroke patients with disabilities. Critically, themes transition from acute crisis management (diagnostic phase) to chronic adaptation (adaptation phase), with each phase’s outcomes directly informing subsequent priorities.

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Fig 1. Thematic framework of family caregivers’ needs across different care phases for stroke patients with disabilities.

https://doi.org/10.1371/journal.pone.0325671.g001

4.1. Diagnosis phase: Introducting the hospital environment and the matters of examination, helping caregivers overcome their lack of knowledge dilemma

Confronted with the sudden onset of stroke in patients, family caregivers are often unprepared yet must rapidly adapt to the hospital’s physical environment, comprehend complex examination protocols, and acquire substantial stroke-related knowledge within limited timeframes. Unlike Western contexts where hospital staff often manage patient logistics [9], Chinese caregivers assume dual roles as emotional supporters and logistical coordinators due to underdeveloped medical caregiver systems. This systemic gap, less emphasized in Western studies with established professional support frameworks, elucidates caregivers’ prioritization of hospital adaptation, a need scarcely documented in high-resource settings that further reveals culturally embedded caregiving disparities [4].

Hospitals can deploy additional support staff, such as health care workers and volunteers, to assist caregivers in adapting to the ward and hospital environment and provide help with accompanying patients for examinations. Augmented reality-based indoor navigation systems can also be developed to help provide instructions on the correct location of the patient while caring for them in the hospital [15]. So hospitals should be mandated to assign transition navigators for families with elderly caregivers, to reduce logistical stress during the diagnosis phase.

This study also shows that caregivers in this phase exhibit a lack of theoretical knowledge, which is consistent with prior research [4]. It may be attributed to systemic gaps in caregiver education and the prioritization of immediate practical tasks over long-term knowledge acquisition in high-stress caregiving environments. Appropriate caregiving knowledge education [16] can be given according to the patient’s symptoms and signs, including knowledge of the disease, medication, diet, exercise, psychological guidance, precautions and rehabilitation techniques. Additionally, study have suggested that offering caregivers video tutorials can significantly and safely improve their self-efficacy and awareness of the causes of stroke, enhance their caregiving skills [17]. Nurses can use all kinds of diversified means to meet the needs of their lack of knowledge, help them adapt to caring for patients hospitalized in the state of caregiving, such as creating instructional videos, using public science platforms, and distributing paper education sheets to caregivers.

4.2. Stabilization phase: Training in caregiving and rehabilitation skills, combining with support for caregivers

During this phase, caregivers are often uncertain about how to assist in the rehabilitation process, especially when the patient’s condition has stabilized but rehabilitation continues, which is consistent with prior studies [8,18]. This uncertainty, rooted in fragmented support systems, drives their desire to collaborate with multidisciplinary rehabilitation teams to ensure the safety of the patient and promote functional recovery. Relevant studies have shown that structured training for caregivers can reduce their caregiving burden, improve quality of life, and reduce the length of hospitalization of patients [18]. According to previous research [19], nurse-mediated exercise programme has the potential to improve outcomes in terms of body function, activities, and participation in people with stroke. In addition to focusing on patient treatment, medical staff should do a good job of multidisciplinary teamwork to provide structured training for different caregivers on caregiving knowledge and rehabilitation cooperation, such as the use of printed manuals, hands-on demonstrations, instructional videos, or training sessions with rehabilitation professionals, etc.

This study reveals that caregivers’ burden remained heavy and significant negative impacts on their personal well-being, particularly in relation to physical health, due to the increasing rehabilitation and caregiving demands. Many caregivers experienced fatigue, sleep disturbances, and physical strain, such as back pain and eye issues. While prior study [18] emphasize skill training, our findings uniquely highlight caregivers’ physical strain during this phase. These findings align with previous research by Zarit [20]. To alleviate the physical and emotional toll on caregivers, it is essential that interventions be designed to both enhance caregivers’ skills in caregiving and reduce the negative effects of caregiving on their own health. For instance, offering caregivers respite care services or support groups to address physical strain [21]. Additionally, providing regular respite opportunities or physical health services would help caregivers recover and manage the physical burdens of caregiving. Moreover, caregiver skills training programs should incorporate structured ergonomic modules that educate energy-saving techniques through biomechanical principles, including maintaining a widened stance with legs positioned shoulder-width apart to enhance stability during patient transfers, lowering the center of gravity through controlled hip and knee flexion instead of spinal bending, and utilizing assistive devices such as slide sheets or transfer belts to reduce musculoskeletal strain during repositioning tasks. Furthermore, municipal health bureaus could establish hospital-based respite centers through dedicated caregiver support grants, offering supervised care services to alleviate caregiver burden. Certified volunteer programs could integrate retired professionals into basic patient assistance roles under clinical oversight, as demonstrated by Japan’s Silver Human Resource Centers model where retirees contribute to healthcare support while enhancing their own well-being [22].

4.3. Discharge preparation phase: Customized home care plans for caregivers and guidance on health behaviors

The preparation phase for hospital discharge is a critical time for patients to return to their families. Due to the limitations of medical resources and economic level, about 80% of stroke patients choose home rehabilitation after their condition is stabilized [3]. However, at this phase, stroke transitional care is often inefficient, leading to unmet needs of family caregivers of stroke in China, post-discharge complications and avoidable readmission rates of patients [1]. Our findings align with global evidence [23] that caregivers prioritize home care readiness and health behavior guidance during this phase. Yet, what distinguishes the Chinese context is the intersection of Confucian filial piety norms and systemic gaps in community rehabilitation infrastructure, which intensify caregivers’ reliance on hospital-based support.

Multiple studies [24, 25] have shown that nurse-led models of transitional care can reduce readmission rates. During this phase, the implementation of a nurse-led discharge preparation plan and the development of a home care program can develop the caregiver’s ability to navigate the health and social care system and activate self-management skills [23]. Discharge care planns should be based not only on an assessment of the patient’s or care recipient’s needs, but also on the needs and readiness gaps of family caregivers. Relevant departments should require medical institutions to make discharge care plans for families of stroke patients with disabilities before they are discharged from the hospital, in order to address the problems of insufficient discharge preparation and uneven distribution of community resources.

Nurses can provide a personalized discharge plan for improving discharge readiness. Specifically, they can provide a reliable guarantee for patients’ smooth transition from the hospital to the home, including working with the rehabilitator to develop a home rehabilitation plan, enhancing caregivers’ education on relevant health knowledge, and identifying available social support. Meanwhile, for patients with high risk of falling or falling out of bed, caregivers should be instructed to eliminate potential safety hazards and avoid risky events caused by environmental factors. In addition, study [26] has confirmed that behavioral instruction involving healthy lifestyles and medication management prior to discharge reduce readmission rates for stroke patients. Nurses can provide guidance on healthy behaviors prior to discharge using health education sessions, stroke information brochures, and personalized medication information sheets to help manage patients’ hypertension, lower blood glucose, control lipids, stay safe in physical activity, make lifestyle changes, and prevent stroke-related complications.

4.4. Adjustment phase: Providing continuity of care and rehabilitation guidance

As stroke patients are left with varying degrees of sequelae such as hemiparesis and dysphagias [1,2], they may still have varying degrees of functional impairment after discharge from the hospital. Studies have shown that approximately 25%−50% of chronic stroke patients require caregiver assistance in performing daily activitiess [2]. During this phase, stroke family caregivers need arise around the sequelae of stroke patients and need to provide continuity of care and rehabilitation guidance to facilitate functional recovery [27]. Our findings highlight caregivers’ truggles with inadequate rehabilitation knowledge and limited social support, exacerbating burnout and suboptimal recovery outcomes.

Unlike contexts with well-established community rehabilitation resources, Chinese urban-rural healthcare disparity exacerbates challenges for rural caregivers, who often lack access to specialized rehabilitation services. The lack of professional guidance and a sound rehabilitation plan often leads to poor caregiver knowledge, beliefs, and behaviors, resulting in poor home rehabilitation for stroke survivors [28].

Existing research predominantly emphasizes the implementation of structured rehabilitation programs to optimize post-stroke recovery outcomes. However, our findings reveal a distinct phenomenon in the Chinese context. Caregivers frequently rely on informal methods to address rehabilitation gaps, such as traditional massage and experience sharing. Nurses can help caregivers identify potential support sources that are valuable in the caregiving role, including other family members and friends, caregiver support groups, and community organizations. Nurses also can provide regular home follow-up visits, and assist caregivers with the patient’s home rehabilitation and care.

However, for caregivers with inadequate social support, nurses can use telemedicine technology to assist in the patient’s home rehabilitation and continuation of services, given the uneven distribution of existing community healthcare resources. A recent randomized controlled trial [29] demonstrated comparable efficacy between home-based telerehabilitation and conventional rehabilitation for stroke survivors, achieving equivalent improvements in activities of daily living (ADLs) and balance function, while attaining similar reductions in caregiver burden. This evidence underscores telerehabilitation’s viability as a cost-effective alternative in resource-constrained healthcare systems. Multiple systematic evaluations have shown that telemedicine meets caregivers’ home care needs, reduces rehabilitation costs, breaks down geographic constraints, and it is effective in enhancing patients’ motor function, general quality of life [11,30,31]. Caregivers can use the technology to retrieve relevant health vocabulary to obtain appropriate health knowledge, they can also conveniently contact medical staff to solve some of the problems encountered in home care [11]. Furthermore, hospitals also can collaborate with primary healthcare institutions and village health workers to implement a hybrid rehabilitation model for stroke families in rural areas, integrating app-guided protocols with community-based demonstrations.

4.5. Adaptation phase: Providing long-term follow-up services to assist in safety management

The results of this study confirm that Chinese caregivers at this phase lack resources for long-term stroke follow-up and proper safety management. Caregivers still need information about ensuring patient safety, including fall prevention, medications, proper prescriptions, adequate nutritionmanagement of healthy. Both the European Stroke Action Plan and the Swedish National Stroke Care Guidelines recommend follow-up 3–6 months after stroke. However hospital follow-up systems in China prioritize acute care over chronic management due to funding constraints. Urban hospitals often lack incentives to extend services beyond 1 month, while rural clinics lack capacity altogether. These systemic limitations directly explain our findings: providing long-term follow-up services to assist in safety management is both a critical need and a feasible intervention to address gaps in post-acute care continuity.

Hospitals and community nurses at all levels should provide long-term follow-up resources for stroke families, provide caregivers with ongoing information on home care, and help caregivers manage the patient’s safety properly. On the one hand, the follow-up time for stroke patients should be extended, the number of follow-up visits should be increased, phone calls and home visits should be made, and regular hospital follow-up visits should be conducted when necessary. During the follow-up visits, caregivers should be taught about prevention of recurrence and informed about the symptoms and treatment in case of recurrence. In conjunction with the patient’s existing symptoms and medication use, the patient also should be informed of the time and method of the next outpatient follow-up visit. In addition, community and healthcare organizations can conduct safety assessments based on the patient’s existing dysfunctions, help caregivers better identify the patient’s remaining safety risks, urge them to take preventive measures, and evaluate their implementation [32]. Policymakers should incentivize hospitals to standardize follow-up protocols, ensuring continuity of care for stroke survivors and other chronic disease patients for 6–12 months post-discharge. Concurrently, primary healthcare workers should be trained to support home care management and conduct safety audits.While prior research emphasized caregiver education, our findings stress the need for systemic reforms. For example, safety management requires not just caregiver training but also environmental modifications (e.g., subsidized home safety audits). This aligns with the WHO’s call for systemic integration of rehabilitation into health systems through leadership, governance, and multidisciplinary collaboration, as outlined in the ‘Rehabilitation 2030’ framework [33]. However, most interventions remain siloed, underscoring the gap between policy advocacy and fragmented implementation in low-resource settings.