Rehabilitation Experiences and Support Needs of Patients With Hemiplegic Shoulder Pain Based on the ICF Framework: A Qualitative Study

ABSTRACT

Background

Hemiplegic shoulder pain (HSP) multi‐dimensionally affects the rehabilitation process of stroke survivors. Although previous literature has explored post‐stroke functional recovery, empirical qualitative investigations into the authentic rehabilitation experiences and deep care needs of this specific population during hospitalisation remain to be further elucidated.

Objective

Guided by the International Classification of Functioning, Disability and Health (ICF) framework, this study aimed to explore the rehabilitation experiences and multidimensional needs of hospitalised stroke patients with HSP, with a view to informing the development of comprehensive, evidence‐based clinical rehabilitation support pathways.

Methods

A descriptive phenomenological qualitative research approach was employed. Purposive sampling was used to select 12 stroke inpatients with HSP for semi‐structured in‐depth interviews to systematically investigate their lived experiences and care demands during the rehabilitation cycle. The interview data were analyzed and thematic structures were extracted using Colaizzi's seven‐step phenomenological analysis method.

Results

The qualitative analysis revealed that HSP exerted multi‐dimensional negative impacts on stroke patients, including physical function limitations, a lack of rehabilitation knowledge, negative emotional distress, restricted social participation, and heavy economic pressure. Consequently, four core domains of rehabilitation needs during hospitalisation were identified: symptom management and psychological support, rehabilitation training and functional reshaping support, comprehensive environmental and social resource support, and patient‐oriented health empowerment.

Conclusion

Confirming the bio‐psycho‐social model of chronic pain, this study highlights that the negative consequences of HSP extend far beyond physical motor restrictions. To address these urgent needs, it is imperative to establish a patient‐centred, nurse‐coordinated multidisciplinary team (MDT) collaborative intervention model, in which targeted health empowerment and multidisciplinary symptom management serve as critical entry points to break the rehabilitation deadlock during hospitalisation.

1. Introduction

Hemiplegic shoulder pain (HSP) represents one of the most prevalent complications among stroke survivors and is clinically characterised by restricted shoulder joint mobility, localised pain, and potential swelling. Owing to its intricate and multifactorial pathogenesis—which involves shoulder subluxation, abnormal muscle tone, complex regional pain syndrome, and central pain pathways (Hao et al. 2022; Noten et al. 2017)—its clinical incidence remains high, with literature reporting rates ranging from 60% to 84% (Anwer et al. 2020). HSP not only limits patients' activities of daily living and physical mobility but also compounds their overall burden across physiological, psychological, and social dimensions, leading to a profound decline in their quality of life (Khatooni et al. 2025). In clinical reality, the persistent pain induced by HSP frequently becomes the core bottleneck impeding upper limb functional recovery; if pain issues are not adequately managed, patients may develop resistance or even aversion to subsequent rehabilitation training. Although conventional therapeutic interventions can temporarily alleviate pain, many lack long‐term efficacy mechanisms, which inadvertently trap patients in a prolonged ‘rehabilitation plateau’ or stagnation period (Mukherjee et al. 2020).

This distinction is important. While numerous qualitative studies have investigated chronic pain syndromes (CPS) in general populations, HSP presents a unique clinical profile that differs from typical CPS in several key respects. Unlike primary chronic pain conditions, HSP arises secondary to a major neurological insult (stroke), compounding the burden of pain with profound motor control loss, sensory deficits, and often cognitive impairment. This dual burden of ‘pain’ and ‘paralysis’ creates a distinctive rehabilitation challenge where pain management cannot be separated from motor relearning and functional restoration. The present study was therefore designed as an exploratory, hypothesis‐generating investigation aimed at identifying HSP‐specific rehabilitation experiences and unmet needs that may differ from those observed in CPS populations more generally. By focussing specifically on the inpatient rehabilitation period—when patients are simultaneously receiving intensive rehabilitation while battling significant pain—this study sought to capture a critical yet under‐researched window of the recovery trajectory.

To break this rehabilitation deadlock, the collaborative effort and tight synergy of a multidisciplinary team (MDT) are essential, within which specialised nursing plays a pivotal role as the core coordinator and liaison. As the most constant companions and care navigators throughout the rehabilitation cycle, nursing professionals act as a vital bridge connecting patients with physicians, rehabilitation therapists, and psychologists. They not only assist in mitigating HSP‐related pain through early correct limb positioning and physical interventions (Singh et al. 2026; Xiong et al. 2025) but must also leverage the collective strength of the multidisciplinary team to simultaneously advance patients' pain management, functional rehabilitation, and psychosocial adaptation. However, current clinical practices predominantly favor standardized, fragmented routing, which may occasionally overlook a systematic assessment of patients' individualized pain experiences (Borsook et al. 2018; Nogueira Carrer et al. 2023) and deep needs from a holistic perspective. To assist the multidisciplinary team in formulating truly individualized rehabilitation strategies that align with patient needs, the prerequisite is to adopt the patients' subjective perspective and deeply comprehend their authentic demands during this painful journey—an area where current clinical exploration could be further complemented and deepened.

Although recent clinical guidelines and consensuses increasingly emphasise patient‐centred and multidisciplinary approaches to pain management, empirical qualitative evidence that deeply describes this specific subjective pain journey remains relatively scarce. Previous qualitative studies on stroke patients have predominantly focused on overall post‐stroke functional recovery trajectories, motor relearning barriers, or general psychological coping strategies (Lindgren et al. 2018; White et al. 2012). While these macro‐perspective studies offer foundational guidance, the unique compounded obstructive effect of HSP as a dual burden of ‘pain’ and ‘paralysis’ warrants a more focused, in‐depth micro‐analysis. A lack of deep understanding regarding this specific subjective pain experience could inadvertently restrict patient engagement and activity compliance in clinical practice, thereby hindering overall functional recovery (De Baets et al. 2023). Therefore, there is an urgent need to deeply explore the authentic experiences and individualised needs of HSP patients within the current multidisciplinary service system, and to identify the psychosocial factors affecting treatment outcomes (Paanalahti et al. 2014), thereby providing practical evidence for building a more comprehensive and collaborative rehabilitation support system.

The International Classification of Functioning, Disability and Health (ICF) proposed by the World Health Organisation provides a mature and authoritative bio‐psycho‐social theoretical framework to address these complex clinical challenges (Stucki et al. 2002). In stroke rehabilitation research, scholars have successfully adopted the ICF as a conceptual framework for qualitative inquiries, using semi‐structured interviews to systematically explore patients' lived experiences and multidimensional functional barriers across various recovery stages (Glässel et al. 2012; Hoyle et al. 2023). These pioneering studies have well demonstrated the applicability and structural advantages of utilising the ICF as a qualitative methodological framework. Compared with traditional qualitative research interviews, introducing the ICF framework as a methodological tool in this study offers the primary advantage of providing systematic and multi‐dimensional ‘follow‐up entry points’ for semi‐structured interviews. It can effectively uncover implicit information easily missed in open interviews and guide researchers to accurately capture HSP patients' deep care needs across the following dimensions: Body Functions and Structures (such as physical function limitations and emotional distress as psychological function impairments), Activity and Participation (such as social participation restrictions), Environmental Factors (such as insufficient support from hospital and social environments, including ward facilities and financial pressures), and Personal Factors (such as lack of rehabilitation knowledge reflecting limitations in disease cognition and coping capacity).

Based on this, the present study adopted a descriptive phenomenological qualitative approach, conducting in‐depth interviews with hospitalised HSP patients under the guidance of the ICF framework. It aimed to systematically explore their inpatient rehabilitation experiences and actual support needs, thereby providing realistic targets and evidence‐based foundations for developing HSP specialised rehabilitation nursing pathways. This exclusive focus on inpatients in the recovery or sequelae phase is intentional. This period often represents a critical bottleneck in motor function recovery. Compared with outpatients, hospitalised individuals in this phase undergo more intensive structured rehabilitation regimens while concurrently battling significant pain interference. Their ongoing reliance on specialised clinical care and multidisciplinary support makes their real‐time insights foundational for optimising synergistic, humanistic nursing pathways.

2. Methods

2.1. Study Design

This study employed a descriptive phenomenological qualitative research approach based on Abraham and Padmakumari's methodological framework (Abraham and Padmakumari 2025). This method emphasises ‘returning to the things themselves’, aiming to suspend researchers' preconceptions and deeply explore HSP patients' subjective rehabilitation experiences and their intrinsic care needs. The implementation, data collection, and reporting process of this study strictly followed the 32‐item checklist guidelines of the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al. 2007).

2.2. Research Team and Reflexivity

To enhance research credibility and control potential subjective bias, this study highly valued the researchers' reflexivity processes.

Interviewer background and training: Interviews were conducted by two female nursing researchers with rich clinical experience and formal qualitative research training. To prevent potential bias from overlapping data collection and early analysis, they strictly followed the semi‐structured interview guide. Additionally, preliminary findings were continuously reviewed by a third senior researcher not involved in the interviews. This oversight ensured that follow‐up questions remained purely exploratory, actively preventing any tendency to lead patients towards unsaturated themes.

Doctor‐patient relationship and power balance: Before the study commenced, no direct clinical care relationship existed between interviewers and patient participants. This setup effectively avoided ‘familiarity effects’ or ‘social desirability bias’ caused by unequal doctor‐patient power, ensuring that patients could freely express themselves in a safe, non‐judgemental environment.

2.3. Participants and Sampling

This study was conducted from February to March 2025 at a tertiary hospital in Shenzhen, Guangdong Province. Purposive sampling was used to recruit participants (Palinkas et al. 2015).

Targeted sampling implementation: Researchers initially screened eligible patients by reviewing the rehabilitation department's electronic medical records and closely communicating with attending physicians. The sampling process strictly followed the ‘maximum variation principle’, Patients with explicit variations in age, gender, education level, marital status, paretic side, HSP severity (NRS score), paralysis stage (Brunnstrom stage), sensory impairment, analgesic treatment, and durations of both hospitalisation and rehabilitation were consciously included to ensure the sample could comprehensively and authentically reflect the heterogeneous characteristics of this clinical population.

Inclusion criteria: (1) Diagnosed with stroke through clinical manifestations and neuroimaging, with a disease duration of ≥ 2 weeks (in the recovery or sequelae stage) and residual unilateral upper limb motor dysfunction; (2) Age 18–80 years; (3) Confirmed presence of affected shoulder pain through a resting Numeric Rating Scale (NRS) score of ≥ 1; (4) Stable condition with adequate verbal communication skills; (5) Agreed to participate in this interview.

Exclusion criteria: (1) Pre‐stroke history of shoulder joint trauma, surgery, or chronic shoulder pain; (2) Non‐stroke‐related shoulder pain (such as scapulohumeral periarthritis, rotator cuff injury, rheumatoid arthritis, etc.); (3) Combined severe respiratory or cardiovascular system diseases; (4) Mental illness or cognitive impairment rendering the patient unable to cooperate; and (5) Received shoulder joint local block treatment within 3 months.

Sample size and thematic saturation: Sample size was not predetermined but determined by the principle of ‘data saturation’. Data collection and preliminary analysis proceeded iteratively. ‘Thematic saturation’ was defined as: recruitment stopped when no new substantive codes or themes emerged after continuous coding of at least 3 new interview transcripts (Fusch and Ness 2015; Yang et al. 2022).

2.4. Data Collection and Interview Guide

Interviews were mainly conducted in quiet, disturbance‐free single patient rooms or doctors' duty rooms to maximise patient privacy protection.

Interview guide development and structure: The semi‐structured interview guide was formulated based on the ICF theoretical framework and literature review (Atkins et al. 2017; Sumathipala et al. 2012), adopting a design framework of a ‘logical main axis coupled with multi‐dimensional extensions’. The interview guide was finalised prior to data collection and remained unchanged throughout the entire study period. In presenting the interview questions in Table 1, the authors have organised them using terminology that explicitly reflects the four core dimensions of the ICF (body functions and structures, activities, participation, and environmental factors) to enhance conceptual clarity for readers. However, these ICF labels represent a post hoc analytical organisation of the original inquiry structure rather than a modification of the interview questions themselves. The substantive questions asked during all interviews remained constant and precisely targeted the multi‐level impacts of HSP on patients, their coping strategies, and their perceived support needs.

TABLE 1.

Semi‐structured interview guide.

(1) Could you describe your shoulder pain? Under what specific circumstances or times does it typically occur?

(2) Since the onset of shoulder pain, how have your daily self‐care activities, emotional well‐being, and social interactions been affected?

(3) What specific medical, physical, or psychological strategies have you utilised to alleviate these issues?

(4) How effective do you perceive these strategies to be, and what barriers or difficulties have you encountered during their implementation?

(5) If improvements could be made, what types of support (e.g., from nursing staff, family, or the healthcare environment) and specific resources would you most hope to receive?

Theory‐driven in‐depth inquiry: During interviews, the ICF theory was closely integrated into follow‐up questions. Researchers systematically used ‘body function, social activities, psychological changes, and rehabilitation environment’ as entry points for inquiry. This design both followed patients' natural expression logic and ensured precise implementation of the theoretical framework. The interview guide was refined through pilot interviews with 2 patients before formal use.

Collection process: Each semi‐structured interview lasted 20–40 minutes. After obtaining authorisation, high‐definition audio recording was conducted throughout. Interviewers simultaneously recorded field notes, documenting patients' non‐verbal information (such as furrowed brows, sighs, limb stiffness) and environmental context in detail, providing critical contextual information for subsequent accurate interpretation of emotional states.

2.5. Data Analysis

Within 24 hours after interviews, recordings were transcribed verbatim and cross‐checked with field notes to correct listening errors. Text analysis strictly followed Colaizzi's seven‐step phenomenological analysis method (Jiang et al. 2024): (1) repeatedly reading all transcribed texts to grasp the overall content; (2) extracting significant statements; (3) refining and coding recurrent meaningful viewpoints; (4) organising logical connections to form thematic clusters; (5) defining the connotations of each theme through detailed and exhaustive descriptions; (6) integrating overlapping content to distil essential thematic concepts; and (7) returning the final findings to participants for validation of authenticity.

2.6. Trustworthiness and Rigour

Following reviewer recommendations, this study referred to Lincoln and Guba's evaluation criteria to ensure qualitative research rigour through four dimensions (Sandelowski 2000).

Credibility: Member checking was conducted with a purposive subset of participants (n = 3), strategically selected to represent a diverse spectrum of pain severities and functional impairments. This approach effectively validated the thematic accuracy without imposing undue cognitive or physical fatigue on the entire recovering patient cohort. To ensure the credibility of the remaining data, investigator and data triangulation were rigorously applied: an independent dual‐coding team systematically cross‐verified all verbatim transcripts alongside the corresponding non‐verbal field notes, guaranteeing the objective and accurate interpretation of every participant's intended meaning.

Transferability: The maximum variation principle in purposive sampling was adopted, and a ‘thick description’ of participants' demographic and clinical characteristics (such as hemiplegia severity, sensory impairment, etc.) and research context was provided so readers and clinical practitioners could assess the applicability of these results in other similar clinical environments.

Dependability: A strict ‘inter‐coder consensus mechanism’ was implemented. Transcribed texts were independently coded sentence by sentence by two researchers. For disagreements, face‐to‐face discussion was used to seek consensus; if consensus could not be reached, a third senior qualitative research expert was introduced for arbitration. All coding decisions and theme evolution trajectories were documented in detail in an audit trail log.

Confirmability: The research team strictly applied the ‘bracketing’ strategy in phenomenology throughout the process. Interviewers continuously wrote reflexive journals, critically examining their own preconceptions as medical staff. Value neutrality was maintained during interviews, avoiding leading questions, ensuring that all themes naturally emerged from patients' original narratives rather than researchers' subjective inferences.

2.7. Ethical Considerations

This study received formal approval from the hospital ethics committee (Ethics Approval Number: KY‐2025‐020801). The research process strictly followed the ethical guidelines of the Declaration of Helsinki. Before study initiation, researchers provided detailed oral and written explanations to all participants regarding the research purposes, interview formats, and privacy protection measures. Throughout the interview process, researchers actively monitored the participants' physical comfort and fatigue levels associated with HSP. Participants were explicitly reminded of their right to pause or unconditionally withdraw from the interview at any time should they experience any distress or discomfort. Written informed consent was obtained from patients before initiating recording and interviews. All participants' personal information was replaced with pseudonym codes (P1–P12), and recordings and transcribed files were encrypted and stored, accessible only to the core research team. Patients were clearly informed that their participation was entirely voluntary and they had the right to unconditionally withdraw from the study or request data withdrawal at any stage, which would not adversely affect their routine medical care.

3. Results

3.1. Participant Characteristics

After completing the above interviews, researchers determined that thematic saturation had been reached. To further verify saturation, 3 additional interviews were conducted, but no new themes emerged. A total of 12 interviews were completed, with patients numbered P1–P12 for data analysis and result presentation. Sample clinical characteristics showed a higher proportion of right‐sided hemiplegia (n = 8, 66.7%). Additionally, most participants were in severe motor dysfunction stages (Brunnstrom stages I–III, n = 8, 66.7%) with sensory impairment (n = 8, 66.7%), and half of the participants (n = 6, 50.0%) relied on only one analgesic medication for pain management. Their general demographic and clinical characteristics are shown in Table 2.

TABLE 2.

Participant characteristics (N = 12).

Patient id	Gender	Age	Education	Marital status	Paretic side	NRS pain score	Brunnstrom stage	Sensory impairment	Analgesic treatment	Duration of hospitalisation (days)	Duration of rehabilitation (weeks)
P1	Female	51	Junior high	Married	Right	3	I–III (flaccid)	No	None	10	2
P2	Female	71	Junior high	Widowed	Right	6	I–III (flaccid)	Yes	Single	12	1.5
P3	Female	74	Junior high	Widowed	Right	7	I–III (flaccid)	Yes	Combined	14	2
P4	Female	43	Senior high	Married	Left	3	IV–VI (recovery)	No	None	9	4
P5	Female	46	College	Married	Right	6	I–III (flaccid)	Yes	Single	11	1
P6	Female	53	Senior high	Married	Right	5	I–III (flaccid)	Yes	Single	10	2.5
P7	Male	47	Primary	Married	Right	5	IV–VI (recovery)	No	Single	10	3.5
P8	Male	52	Primary	Married	Right	4	I–III (flaccid)	No	None	8	2
P9	Male	54	Senior high	Other	Right	7	I–III (flaccid)	Yes	Combined	13	3
P10	Male	68	College	Married	Left	3	IV–VI (recovery)	Yes	None	14	5
P11	Male	57	Junior high	Married	Left	6	I–III (flaccid)	Yes	Single	10	1.5
P12	Male	48	Junior high	Married	Left	5	IV–VI (recovery)	Yes	Single	12	4

Note: ‘Total length of hospital stay’ refers to the duration of the current hospitalisation episode during which participants were recruited for this study. ‘Duration of in‐hospital rehabilitation’ represents the cumulative rehabilitation time across all hospitalizations, including previous rehabilitation stays at other hospitals plus the current hospitalisation period.

3.2. Multi‐Dimensional Challenges

In HSP rehabilitation, patients often face issues such as impaired motor function, mental health problems, decreased social participation, and reduced self‐management ability. Every patient had similar experiences—HSP brought tremendous impact to their lives, severely hindering their recovery of normal function and improvement of quality of life. Based on the ICF framework, this study categorised patients' multi‐dimensional experiences and difficulties during rehabilitation into four core themes (see Table 3).

TABLE 3.

Patients' rehabilitation experiences and multi‐dimensional challenges based on the ICF framework.

ICF core dimension	Theme	Sub‐theme
Body functions and structures	1. Physical symptoms and psychological function impairment	1.1. Physical function limitation
		1.2. Emotional distress
Activity and participation	2. Social and daily activity restriction	2.1. Social participation restriction
Environmental factors	3. Weak external comprehensive support system	3.1. Economic pressure
Personal factors	4. Disease cognition and coping ability limitations	4.1. Lack of rehabilitation knowledge

3.2.1. Body Functions and Structures: Physical Symptoms and Psychological Function Impairment

3.2.1.1. Physical Function Limitation

Limb weakness, limited mobility, local edema, and muscle spasms caused by HSP directly interfered with rehabilitation training implementation. Some patients actively reduced limb activity due to fear of pain, leading to a vicious cycle of functional degradation and symptom aggravation over time. As patients described:

My arm can't be lifted at all; it hurts unbearably with slight movement.

(P12)

My hand is very stiff and can't move.

(P6)

3.2.1.2. Emotional Distress

Persistent HSP and slow recovery progress led to emotional distress in many patients, including anxiety, helplessness, and loss of motivation. This physical pain directly transformed into negative psychological coping:

I feel like there's no progress at all; my mood is terrible, and I don't want to practice anymore.

(P12)

3.2.2. Activity and Participation: Daily Activity and Social Restriction

3.2.2.1. Social Participation Restriction

The physical confinement of the hospital and the functional impairments from hemiplegia create a dual barrier to social participation. While the hospital environment inherently separates patients from their usual communities and friends, the bodily limitations and shoulder pain further confine them to their hospital beds or wards. This double restriction drastically reduces their social opportunities and fosters a profound sense of isolation:

I used to gather with friends often, but now I can only stay indoors and feel very lonely.

(P3)

3.2.3. Environmental Factors: Weak External Comprehensive Support System

3.2.3.1. Economic Pressure

Beyond physical discomfort, the economic pressure brought by rehabilitation treatment became a practical difficulty for patients to face. Continuous rehabilitation expenses, combined with income interruption due to inability to work, aggravated the economic burden on patients and families. This sense of financial distress often forced patients to cut necessary rehabilitation expenses, adversely affecting overall rehabilitation outcomes:

Hospitalization and rehabilitation cost a lot; the family can hardly sustain it.

(P10)

3.2.4. Personal Factors: Disease Cognition and Coping Ability Limitations

3.2.4.1. Lack of Rehabilitation Knowledge

Interview results showed that patients and their caregivers generally had knowledge gaps regarding specific rehabilitation techniques such as shoulder orthosis wearing and body positioning. It was precisely these cognitive blind spots that led to assistive devices not being fully utilised and even hindering the rehabilitation process to some extent:

The doctor asked me to buy a shoulder orthosis, but I don't know why to use it or how to choose.

(P8)

3.3. Care Needs

In this study, ‘care needs’ are defined as the comprehensive physical, psychological, environmental, and informational support that patients expect to receive from both their multidisciplinary healthcare team and social networks. Guided by this conceptual framework, patients' care needs were ultimately synthesised into 4 themes and 9 sub‐themes through layered coding and categorical induction (see Table 4).

TABLE 4.

Patients' care needs based on the ICF framework.

ICF dimension	Theme	Sub‐theme
Body functions and structures	1. Symptom management and psychological support	1.1. Targeted shoulder pain relief and symptom management
		1.2. Alleviating negative emotions and enhancing rehabilitation confidence
Activity and participation	2. Rehabilitation training and functional reshaping support	2.1. Developing individualised, progressive rehabilitation plans
		2.2. Professional training supervision and daily activity guidance
Environmental factors	3. Comprehensive environmental and social resource support	3.1. Improving sleep and creating positive ward rehabilitation atmosphere
		3.2. Promoting peer mutual aid and strengthening family care participation
		3.3. Providing multi‐channel medical expenses and economic support
Personal factors	4. Patient‐oriented health empowerment	4.1. Providing clear rehabilitation guidance and technical support
		4.2. Empowering patients to actively participate in rehabilitation goal setting

3.3.1. Body Functions and Structures Dimension: Symptom Management and Psychological Support

3.3.1.1. Targeted HSP Relief and Symptom Management

Effectively controlling HSP, swelling, and muscle spasms is the physiological basis for patients to carry out subsequent rehabilitation training. Respondents generally indicated that persistent physical discomfort severely hindered their willingness to be active. Only when pain and abnormal muscle tone were effectively managed did they have sufficient physical strength and willingness to practice movements. As patients stated:

First cure the shoulder pain, then I have strength to practice other movements.

(P8)

When my hand is not so stiff, I can exercise.

(P9)

3.3.1.2. Alleviating Negative Emotions and Enhancing Rehabilitation Confidence

Due to HSP's characteristics of being difficult to cure quickly and having a long recovery cycle, patients easily developed helplessness, frustration, and other negative emotions during rehabilitation. This mental function impairment directly led to patients' resistance and thoughts of giving up on rehabilitation exercise and urgently needing professional psychological counselling and emotional support.

No progress at all, very depressed; family has lost confidence too, and doesn't want to practice anymore.

(P6)

3.3.2. Activity and Participation Dimension: Rehabilitation Training and Functional Reshaping Support

3.3.2.1. Developing Individualised, Progressive Rehabilitation Plans

Clear and staged rehabilitation plans can significantly improve patients' exercise enthusiasm. Respondents hoped to have specific task goals at each rehabilitation stage to clearly perceive their functional progress trajectory, thereby improving treatment compliance:

If doctors could tell me how much to practice each day, I would be more motivated.

(P7)

3.3.2.2. Professional Training Supervision and Daily Activity Guidance

Most patients lacked sufficient self‐discipline when independently conducting daily exercises and were worried about secondary injuries caused by non‐standard movements. Therefore, they strongly needed medical staff to provide external supervision and professional guidance in daily activities to compensate for their own execution deficiencies:

If doctors often reminded me to do exercises, I might be more active.

(P10)

3.3.3. Environmental Factors Dimension: Comprehensive Environmental and Social Resource Support

3.3.3.1. Improving Sleep and Creating Positive Ward Rehabilitation Atmosphere

Notably, the rehabilitation needs identified in this study span multiple professional domains beyond the capacity of any single discipline. Patients' requests for ‘doctors to tell me how much to practice each day’ (P7) and for ‘doctors often reminded me to do exercises’ (P10) reflect needs for physician and rehabilitation therapist involvement. Their desire for psychological support when ‘very depressed’ and wanting to give up (P6), for peer support groups to combat loneliness (P3, P5), and for clear guidance on assistive device use (P8, P9) illustrate the essential roles of psychologists, social workers, and specialised nurses. Furthermore, the call for multi‐channel economic support (P1, P11) highlights the necessity of social work and case management resources. This convergence of needs—spanning medical, rehabilitative, psychological, social, and educational domains—demonstrates that patients' own narratives implicitly call for a collaborative care model. These findings align with established evidence that multidisciplinary team (MDT) approaches produce superior outcomes for chronic pain populations by addressing the interplay of biological, psychological, and social factors. The diversity of unmet needs identified across all four ICF dimensions provides empirical justification for moving beyond siloed, discipline‐specific interventions towards integrated, patient‐centred MDT care pathways in which nursing professionals serve as essential care coordinators.

Physical environment and humanistic atmosphere in the ward directly affect patients' rehabilitation efficiency. Noisy ward environments lead to sleep deprivation, while negative remarks spread among patients severely undermine confidence. Patients urgently need a quiet and positively motivating external rehabilitation environment. Respondents candidly stated:

The ward is too noisy; can't sleep well, feel recovery is slower.

(P2)

Hearing other patients say they can't get better, I lost some confidence; hope for a positive rehabilitation environment in the hospital.

(P12)

3.3.3.2. Promoting Peer Mutual Aid and Strengthening Family Care Participation

Family members' companionship and experience exchange among patients constitute crucial social micro‐environments for patients. Close care from family members brings a great sense of security, while peer mutual aid with similar experiences can effectively reduce loneliness and anxiety caused by illness:

After I got sick, my spouse has been by my side helping me train; I feel very reassured and confident about getting better.

(P5)

Exchanging experiences with other patients, I don't think it's that difficult.

(P3)

3.3.3.3. Providing Multi‐Channel Medical Expenses and Economic Support

Economic burden is the core external obstacle leading patients to forced interruption of systematic rehabilitation treatment. High long‐term rehabilitation costs exceed the affordability of many ordinary families, leading patients to only choose intermittent treatment or abandon treatment, urgently needing multi‐channel medical assistance and financial support:

Rehabilitation training costs are too high; ordinary families can't afford it, can only have intermittent treatment.

(P11)

Decades of hard‐earned wealth, almost all spent on medical care when sick; current family living conditions are very difficult.

(P1)

3.3.4. Personal Factors Dimension: Patient‐Oriented Health Empowerment

3.3.4.1. Providing Clear Rehabilitation Guidance and Technical Support

Respondents generally lacked HSP‐related health literacy and often felt confused when faced with complex medical terminology. To improve self‐management ability, they urgently hoped to obtain clear guidance that was easy to understand and could be immediately transformed into home care actions to answer doubts about disease recurrence:

I don't understand why my shoulder pain can't be cured; I want doctors to tell me what to do next.

(P4)

I don't understand what doctors say; can you just tell me how to position my arm so it doesn't hurt.

(P9)

3.3.4.2. Empowering Patients to Actively Participate in Rehabilitation Goal Setting

Patients are no longer satisfied with passively receiving treatment but desire to know the concrete benefits of specific rehabilitation movements and functional prognosis. By participating in their own rehabilitation goal setting and condition communication, patients can gain a higher internal sense of control, thereby stimulating active treatment willingness:

Every time during training, I hope to know to what extent my arm can reach after doing this movement.

(P11)

4. Discussion

This study explored the multi‐dimensional experiences and support needs of stroke patients with hemiplegic shoulder pain (HSP) during rehabilitation through the ICF framework (see Figure 1). The model depicts three core interactive mechanisms: first, the deep integration of physiological symptoms (shoulder pain, limited mobility) with psychological functions (fear‐avoidance, anxiety), revealing the somatic‐psychological vicious cycle; second, bidirectional arrows demonstrating how impaired body functions directly lead to activity limitations and reduced social participation; and third, the dynamic moderating effects of environmental factors (external support systems) and personal factors (illness cognition and coping) at the model's base, jointly influencing the patient's overall rehabilitation trajectory. Consistent with recent qualitative studies conducted in the musculoskeletal care field (Maxwell et al. 2021), this study found that HSP extends far beyond biomechanical motor impairment, profoundly penetrating and disrupting patients' psychological and social adaptation abilities. The core pain point observed in this study—acute pain triggering deep anxiety, leading to patients refusing activity—can be profoundly explained through the ‘Fear‐Avoidance Model’ (Leeuw et al. 2007; Martinez‐Calderon et al. 2018). Post‐stroke loss of motor control ability and central nervous system changes make patients more sensitive to HSP perception; out of instinct to protect the affected limb, patients develop strong ‘pain‐avoidance psychology’, directly leading to limb ‘learned non‐use’ (Kumar et al. 2022), and unconsciously aggravating joint adhesion and muscle spasms. This vicious cycle of dual physiological and psychological damage corroborates recent epidemiological findings that long‐term HSP delays upper limb functional recovery and exacerbates depressive symptoms (Ateş Sari et al. 2024). For rehabilitation professionals, this finding has extremely important clinical significance: simple passive analgesia or mechanical training can no longer meet complex rehabilitation demands. Patient‐centred nursing strategies must transform towards ‘bio‐psycho‐social’ comprehensive intervention, introducing multi‐modal analgesia at the very early stage of rehabilitation while simultaneously conducting cognitive reshaping—educating patients to distinguish between ‘beneficial rehabilitation discomfort’ and ‘injurious pain’, thereby breaking the fear‐avoidance cycle (Jones et al. 2016), laying physiological and psychological foundations for patients' active participation.

FIGURE 1.

Conceptual Model of Multidimensional Rehabilitation Experiences and Needs for HSP Patients based on the ICF Framework.

Beyond the dual barriers of physical and psychological factors, this study revealed a huge knowledge gap in patients' use of assistive devices and self‐care in the personal factors dimension. Deep analysis of the reasons for this theme's emergence shows that it lies not only in the generally limited educational background of the sample population but also reflects the serious disconnect between traditional clinical education models and stroke survivors' actual ‘health literacy’ (Perrin et al. 2022). Stroke is often accompanied by increased cognitive load and decreased information processing ability. When patients, as repeatedly mentioned in interviews, ‘don't know why to use or how to choose shoulder orthoses’, assistive devices lose their meaning, and the rehabilitation process is consequently hindered. This is highly consistent with recent qualitative research emphasising that failure to ‘customise information’ for stroke patients' cognitive abilities significantly reduces their engagement (Hu et al. 2023). To implement truly patient‐centred health empowerment, rehabilitation nursing professionals must abandon ‘One‐way didactic approach’ education full of medical jargon. Clinical practice should widely integrate structured communication strategies such as the ‘Teach‐back method’, forming closed‐loop communication to verify and reinforce understanding by having patients repeat guidance content in their own words (Brown et al. 2025). Additionally, utilising multimedia decision aids such as graphics or short videos that overcome language barriers can effectively lower cognitive thresholds (Bhattacharjya et al. 2023; Wang and Kassavou 2023), transforming patients and their families from passive information recipients into active managers of home rehabilitation.

Environmental factors, especially the micro‐social ecology of the ward, play an irreplaceable role in regulating HSP patients' rehabilitation trajectories. Patients' complaints about noisy ward environments and rapid contagion of negative emotions among patients highlight the direct interference of physical and social environments on rehabilitation intrinsic motivation. Because of the long course of HSP, patients easily fall into social isolation, which essentially represents the loss of their role as ‘social beings’. If rehabilitation interventions are limited only to the bedside while neglecting the construction of support networks for peer and family environments, patients easily fall into depression due to loneliness, thereby weakening overall rehabilitation outcomes. This finding echoes the core concept proposed in recent qualitative research—healthcare must see ‘the person behind the patient label’ (Dörfler and Kulnik 2020; Hall et al. 2024). Therefore, routine intervention pathways in medical institutions urgently need organisational adaptive adjustments. In clinical terms, this means that rehabilitation professionals should actively transform spontaneous scattered patient exchanges into structured ‘peer support groups’, allowing patients with similar rehabilitation experiences to share coping strategies and combat illness‐induced loneliness with empathy (Wan et al. 2021). Simultaneously, extending health education audiences to family members and conducting family empowerment training including body positioning and transfer techniques can not only prevent secondary shoulder injuries caused by improper care but also build solid psychosocial defenses for patients both inside and outside the hospital.

This study further clarifies that patients' support needs in the ‘activity and participation’ dimension are not static but present dynamic ladder‐like characteristics as their condition evolves. In the flaccid or severe spastic stage, patients with severe HSP have demands highly concentrated on passive symptom relief and sense of security acquisition; as pain decreases and partial function recovers, their desires rapidly shift towards strengthening complex daily activity abilities and returning to social roles. This dynamic evolution vividly reflects patients' psychological role transformation from passive ‘passengers’ receiving treatment to active ‘drivers’ eager to control their own health during their rehabilitation journey (Larsson et al. 2009). This phenomenon strongly suggests that standardized, ‘one‐size‐fits‐all’ training plans run counter to patient‐centred concepts. Rehabilitation nursing teams must establish ‘dynamic assessment and adjustment’ mechanisms based on timelines. In early rehabilitation, medical staff need to assume more guidance, protection, and external supervision responsibilities; when patients enter the recovery stage, clinical strategies should decisively shift towards ‘shared decision‐making’. By inviting patients to personally participate in setting daily activity goals with personal life significance (such as relearning to dress and eat independently), aligning medical goals with patients' life goals, thereby adapting their psychological role transformation, continuously enhancing self‐efficacy through achievement of small goals, ultimately promoting patients from basic physical activity towards comprehensive social participation.

This study has multiple strengths. First, this study systematically integrated the ICF framework throughout the entire interview guide design and data analysis, not only broadening the horizons of qualitative exploration but also providing a solid theoretical foundation for structured presentation of research results. Second, researchers conducted keen observation and recording of patients' facial expressions and body movements during interviews, effectively cross‐validating the authenticity of patients' verbal expressions; meanwhile, using easy‐to‐understand language and empathetic, respectful communication methods (such as listening and smiling) successfully eliminated barriers between doctors and patients, encouraging patients to open up and share deep experiences. Third, this study's sample showed good heterogeneity in gender, age, education level, and hemiplegia severity, truly reflecting the diversity of patient populations in clinical practice, thereby enhancing the richness and clinical generalisability of research results.

We acknowledge that our sample (N = 12) presents an imbalanced distribution regarding the paretic side, with right‐sided hemiplegia being more prevalent (66.7% vs. 33.3%). While this imbalance limits the generalisability of our findings to left‐hemiplegic patients, it offers rich qualitative insights into the lived experiences of individuals with dominant‐hand paralysis. In our sample, the majority of right‐sided hemiplegia patients were right‐hand dominant, meaning this “paralysed and painful dominant hand” condition caused significant interference for patients. Recent qualitative research has demonstrated that when the dominant upper limb is impaired, young and middle‐aged stroke survivors with hemiplegia experience profound challenges in daily activities and social participation, with perceived upper limb function being a crucial determinant of social engagement and emotional well‐being (Qin et al. 2025). Specifically, paralysis of the dominant hand significantly interferes with self‐care activities and social roles, as patients struggle to perform complex daily tasks such as dressing, eating, and grooming that require fine motor coordination (Si et al. 2025).

Furthermore, our sample exhibited a higher proportion of severe paralysis (Brunnstrom stages I‐III, 66.7%) and sensory impairment (66.7%). This distribution reflects the epidemiological reality of HSP, as severe motor dysfunction and sensory loss are established independent predictors of HSP development (Kalichman and Ratmansky 2011). Importantly, while this sample composition limits transferability to milder cases, it does not undermine our qualitative themes; rather, it highlights the urgent support needs of patients with dominant‐side motor and sensory dysfunction who face compounded barriers to rehabilitation engagement and social participation. Future research should purposefully sample left‐hemiplegic patients to achieve balanced representation and further validate our findings across different hemiplegic presentations.

However, this study has several limitations. First, it was conducted at a single tertiary hospital in Shenzhen with a relatively small sample size, and most participants were in specific stroke rehabilitation stages. This may limit the transferability of the findings to other clinical settings, such as community rehabilitation centres or different geographical regions. Second, the purposive sampling strategy may have introduced selection bias, as the enroled participants might represent a subgroup with a stronger willingness to articulate their feelings or a higher proactive focus on their rehabilitation. Finally, the experiences and needs of patients with HSP evolve dynamically over time. Because this study relied solely on cross‐sectional interview data, it could not capture these temporal changes. Future longitudinal qualitative or mixed‐methods studies are needed to further track the evolution of patients' needs throughout the entire rehabilitation cycle.

5. Conclusion

Based on the ICF framework, this study confirms that the biopsychosocial and fear‐avoidance models, well‐established in the chronic pain literature, apply strictly to the complex rehabilitation trajectory of patients with hemiplegic shoulder pain (HSP). HSP is not merely local biomechanical damage but a comprehensive health burden deeply intertwined with psychological distress, environmental barriers, and social isolation.

Crucially, this study extends previous findings by highlighting the specific unmet needs of patients in the inpatient setting, particularly regarding significant deficits in health literacy concerning assistive devices and the dynamic nature of their care needs. Given that patients in this study expressed needs spanning medical, rehabilitative, psychological, social, and educational domains (as illustrated by their own statements in the Results section)—needs that appear to exceed the scope of any single clinical discipline—our findings suggest that integrated care models, such as patient‐centred multidisciplinary team (MDT) approaches, warrant serious consideration as a strategy to address the rehabilitation stagnation caused by the somatic‐psychological vicious cycle.

Within this MDT model—involving physicians, physical therapists, psychologists, and nurses—clinical practice should early integrate multi‐modal symptom management and customised health education that overcomes cognitive barriers. Furthermore, healthcare teams should strive to establish ‘shared decision‐making’ mechanisms, empowering patients to actively transition from passive ‘recipients’ to active ‘managers’ of their health, ultimately achieving comprehensive functional reshaping and successful social reintegration.

Author Contributions

Xingyu Li: Writing – original draft, writing – review and editing, data curation. Hualu Yang: conceptualization, methodology, supervision, funding acquisition. Minghong Sui: conceptualization. Jiaqing Liu: investigation. Xin Wang: methodology. Xiaotian Liu: data curation. Guangfa Xiang: data curation. Rui Luo: data curation. Yanhong Chen: formal analysis. Beirong Mo: project administration, supervision.

Funding

The authors have nothing to report.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.