This study adopted a longitudinal qualitative design grounded in the interpretivist paradigm, using the journey mapping method combined with conventional content analysis (14). This approach was selected to capture caregivers’ evolving experiences and to interpret the contextual meanings of caregiving practices over time. The design was further informed by SRQR (Standards for Reporting Qualitative Research) and COREQ (Consolidated Criteria for Reporting Qualitative Research) guidelines, to enhance transparency and methodological rigor (15).

Participants were the primary caregivers of patients who underwent TKA at Henan Provincial Third People's Hospital. A purposive sampling method, guided by the principle of maximum variation, was used to ensure diversity in age, gender, educational background, and socio-economic status. Inclusion criteria for patients were: (1) first-time recipients of unilateral TKA; (2) a Tampa Scale of Kinesiophobia (TSK) score >37, indicating moderate to severe kinesiophobia; (3) clear consciousness, normal cognitive and hearing function, and the ability to communicate verbally or in writing; (4) provision of informed consent and willingness to participate in longitudinal follow-up. Exclusion criteria included: (1) severe dysfunction of vital organs such as the heart, liver, lungs, or kidneys; (2) diagnosed anxiety, depression, or current use of psychiatric medications; (3) mental illness or cognitive impairments impairing communication; (4) simultaneous participation in other similar studies.

Inclusion criteria for caregivers were: (1) the primary caregiver providing ≥4 h of daily care; (2) unpaid caregiving role; (3) adequate communication and comprehension ability. Exclusion criteria included: (1) caregivers with a professional healthcare background; (2) patients’ death or caregiver withdrawal during the study. Sample size was determined according to the principle of data saturation, defined as the point at which no new codes or themes emerged during successive interviews (16). Saturation was reached after 16 caregivers were recruited, resulting in 43 interviews across three time points. The mean age of caregivers was 47.3 years (SD = 8.6). Ethical approval was granted by the Ethics Committee of Henan Provincial Third People's Hospital (Approval No. 2025-126).

To reduce recall bias and ensure the authenticity of data, interviews were conducted at three key time points identified through literature review and clinical practice, and aligned with the structure of the caregiver journey map:

T1 (Preoperative phase): Within the first 2 days of hospitalization

A semi-structured interview guide was used consistently, refined iteratively during data collection to accommodate emerging themes. Sample questions included: “What is your biggest current difficulty as a caregiver?” and “How has this experience affected your own life and health?” A pilot interview with two caregivers was conducted to refine question wording and flow.

All interviews were conducted by two researchers trained in qualitative methods. One served as interviewer and reflexive facilitator, while the second took observational notes on non-verbal cues. The researchers positioned themselves as clinical nurses with prior experience in perioperative care, which facilitated rapport but also necessitated reflexive journaling to manage potential bias.

T1 and T2 interviews were face-to-face in a private hospital room, while T3 interviews were conducted in person or by telephone, depending on caregiver preference. All interviews were audio-recorded and transcribed verbatim within 24 h. Participants were anonymized using codes (N1–N16).

All interviews were transcribed verbatim within 24 h and independently verified by two researchers. Data were analyzed using conventional content analysis (17), supported by NVivo 12 software for coding and data management. The analysis proceeded iteratively: transcripts were read repeatedly for immersion, and open coding was conducted to generate initial codes. Codes with similar meanings were then grouped into subthemes and further synthesized into broader themes. These themes were subsequently mapped onto a temporal framework corresponding to the caregiving journey (T1–T3), enabling both synchronic and longitudinal interpretation. To ensure credibility, coding decisions and theme development were discussed in regular peer debriefing sessions, and an audit trail was maintained throughout. The interview guide was refined iteratively to incorporate emerging insights, and data collection continued until thematic saturation, defined as the absence of new codes in successive interviews, was achieved.

To ensure methodological rigor, multiple strategies were implemented throughout the study. First, trust was established between researchers and participants through long-term engagement in inpatient nursing care, fostering an environment conducive to open and honest dialogue. Second, reflexive journaling was used by all researchers to document potential biases, emotional reactions, and decision-making during data collection and analysis. This practice helped minimize the influence of subjectivity and maintained analytical transparency. Third, member checking was employed by revisiting selected participants to verify the accuracy of thematic interpretations and confirm that the findings reflected their lived experiences. Lastly, to ensure technical integrity, dual-device recording was used during telephone interviews—one for communication and the other for audio capture—to prevent data loss and maintain recording quality. These quality assurance measures collectively contributed to the credibility, dependability, and confirmability of the study findings.

A total of 16 dyads of TKA patients and their primary caregivers participated in this study. Caregivers ranged in age from 29 to 63 years, with a mean age of 47.3 years (SD = 8.6). The majority were female (68.8%), and most were either spouses (43.8%) or adult children (31.3%), with smaller proportions of in-laws (12.5%), siblings (12.5%), and parents of patients (6.3%). Educational attainment varied considerably, from illiteracy (12.5%) to postgraduate training (6.3%), though most caregivers had completed at least junior middle school (62.5%). Marital status was predominantly married (81.3%), with a minority unmarried (12.5%) or divorced (6.3%). Caregivers occupations were grouped into broader categories, including agriculture, healthcare and education, public service, technical or professional work, service and manual labor, and unemployed/retired, reflecting broad socio-economic heterogeneity.

Patients ranged in age from 52 to 74 years, with a mean age of 63.1 years (SD = 5.9), and an equal distribution of men and women. Educational attainment was generally lower than that of caregivers: nearly half (43.8%) had only primary schooling or were illiterate, while a minority reached junior middle school (37.5%) or higher education (18.7%). The majority were married (87.5%), and most were retiredd, agricultures, or manual workers. The primary causes of injury were falls from heights (31.3%), traffic accidents (25.0%), and slips (18.7%), with disease durations concentrated between one and three months (68.8%). Injury severity was most often classified as Grade B (31.3%) or Grade D (25.0%), while the remainder were Grade F as shown in Table 3.

Caregiving tasks expanded over time from logistical coordination to complex, quasi-clinical responsibilities. In the diagnosis stage, caregivers focused on obtaining medical information, organizing hospital admission, and negotiating treatment decisions. During discharge transition, tasks shifted toward facilitating functional training, modifying the home environment, and acquiring practical caregiving skills. In rehabilitation, responsibilities included preventing complications, managing long-term functional recovery, and sustaining patients’ psychological adaptation. Differences between subgroups emerged: spouses more often engaged in continuous physical assistance, whereas adult children were more likely to coordinate external resources and financial support. This transition illustrates a trajectory of increasing technical and psychosocial complexity (Table 2).

Emotional states varied across phases, with acute anxiety and helplessness dominating the diagnosis stage. During discharge transition, caregivers reported fatigue, tension, and insecurity regarding recovery. By the rehabilitation phase, emotions became ambivalent, combining hope with frustration at slow progress, and in some cases, role-related self-sacrifice. Female caregivers more frequently expressed emotional exhaustion and feelings of isolation, whereas male caregivers emphasized financial pressure and role strain. This heterogeneity underscores how caregiver identity shapes psychological vulnerability and coping strategies (Table 4).

Three categories of barriers were identified: (1) knowledge barriers, such as limited understanding of perioperative information; (2) skill barriers, including difficulties with mobility support, wound care, and complication prevention; and (3) systemic barriers, encompassing financial stress, fragmented care coordination, and insufficient community resources. These barriers intensified in rehabilitation, when institutional support diminished while care demands persisted. The findings reflect the uniqueness of the post-TKA context in China, where the family remains the primary care provider in the absence of structured community-based rehabilitation pathways (Table 5).

Support sources shifted from hospital-based professionals (orthopedics, anesthesiology, inpatient nurses) during the diagnosis and hospitalization phases to rehabilitation therapists and discharge planners in the transition phase, and finally to community services, counselors, and family networks in the rehabilitation phase. However, this transition also revealed fragmentation between hospital and community care, leaving caregivers without continuous professional guidance (Table 1).

This study used longitudinal qualitative interviews to systematically depict how caregiving tasks for TKA patients evolved across the diagnosis, discharge transition, and rehabilitation stages. The findings confirm that caregiving is not static but develops in a staged and accumulative manner. Caregivers began as logistical coordinators—responsible for admission, paperwork, and information gathering—and then shifted toward performing quasi-clinical duties, such as monitoring rehabilitation training, preventing complications, and supporting psychological recovery. By the rehabilitation phase, their roles increasingly resembled those of paraprofessionals, combining physical, technical, and emotional responsibilities.

This trajectory can be interpreted through role adaptation theory, which posits that individuals gradually reconstruct their roles in response to prolonged exposure to stressors and expectations. The evidence from this study enriches existing cross-sectional findings (18, 19) by demonstrating how caregivers actively adapt their roles over time. In particular, spousal caregivers were more consistently engaged in hands-on tasks, whereas adult children often took on resource coordination and financial responsibilities, illustrating how family role structures influence caregiving dynamics.

Caregivers’ emotional responses shifted significantly across the three phases, reflecting the appraisal and coping processes described in Lazarus and Folkman's stress–coping model. In the diagnosis stage, anxiety and helplessness reflected primary appraisal of uncertain events, while the discharge transition period was characterized by secondary appraisal under conditions of insufficient coping resources, leading to fatigue and diminished confidence. By the rehabilitation stage, caregivers reported ambivalent emotions: hope and optimism about patient recovery, but also frustration with slow progress, psychological suppression, and even self-sacrifice.

The gender differences observed add cultural nuance. Female caregivers frequently emphasized emotional exhaustion and loneliness, while male caregivers reported financial pressure and role strain. Such differences are consistent with gendered expectations in Chinese families, where women are often expected to engage in emotional labor and men in financial support. Compared with Western studies (20, 21), our participants reported more emotional suppression and acceptance of sacrifice, suggesting the influence of filial piety and spousal duty in shaping emotional coping strategies in the Chinese context.

Beyond descriptive findings, the analysis benefits from a theoretical integration of the caregiver burden framework. This framework conceptualizes stress across informational, physical, and systemic domains, and our data highlight how these burdens accumulate longitudinally. Early deficits in medical information limited caregivers’ ability to make informed decisions. Skill-related challenges in patient transfer and complication prevention became most salient during discharge and early rehabilitation, when institutional guidance diminished. Systemic barriers—financial strain, lack of community rehabilitation services, and fragmented continuity of care—were most pronounced during long-term recovery.

These findings extend prior work (22, 23) by showing that caregiver burden is not simply a static condition but an escalating process tied to the temporal trajectory of recovery. Importantly, the theoretical framing underscores the need for stage-specific interventions. Structured preoperative education could address informational gaps, while community-based rehabilitation services and caregiver training programs could alleviate long-term skill deficits.

Support networks shifted from professional, hospital-based providers during admission and hospitalization to family and community resources during rehabilitation. This transition revealed fragmentation in the healthcare–community–home continuum, with caregivers often left unsupported after discharge. While similar patterns of fragmentation have been described internationally (24), the findings in this study reflect the particular reliance on family caregiving in China, where community rehabilitation and formal long-term care systems remain underdeveloped.

This cultural specificity is crucial: in China, caregiving remains deeply embedded in family structures, guided by norms of filial piety and collective responsibility. Unlike in some Western contexts where professional caregivers supplement family roles, Chinese families are often the sole source of support. This reliance underscores the importance of building multidisciplinary and community-integrated support systems that can bridge hospital discharge with ongoing rehabilitation.

An important contribution of this study lies in its methodological design. Previous research on TKA caregiving has been largely cross-sectional, providing valuable but static insights into caregiver burden, emotional distress, or support needs. By adopting a longitudinal design, this study captured temporal trajectories of caregiving tasks, emotional states, and barriers, revealing not only what caregivers experience but also when these challenges emerge and how they evolve.

For example, anxiety peaked during the diagnosis and discharge phases, while frustration and fatigue accumulated during rehabilitation. Similarly, systemic barriers were less visible during hospitalization but became acute once institutional support receded. Such insights are possible only with longitudinal observation, highlighting the added value of this approach for developing time-sensitive interventions.

This study has several limitations. First, participants were recruited from a single hospital, limiting generalizability to other regions. Second, although purposive sampling with maximum variation was employed, selection bias cannot be excluded; caregivers under extreme burden may have declined participation. Third, data were self-reported, and despite triangulation with non-verbal observations, recall and desirability bias may still have influenced findings. Fourth, the positionality of the researchers as clinical nurses may have affected interview dynamics, despite the use of reflexive journaling and peer debriefing to mitigate this risk. Fifth, the interview duration was relatively short (15–20 min) due to time constraints in clinical environments, which may have limited narrative depth.

Future studies should expand to multiple sites and diverse cultural settings, adopt mixed-methods approaches to triangulate qualitative findings with quantitative measures of caregiver burden, and extend follow-up periods to capture long-term trajectories beyond the first month of rehabilitation.