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Current status and influencing factors of social participation in patients undergoing maintenance haemodialysis: a Cross-sectional study following the international classification of functioning, disability, and health framework

BMC Nephrology volume 26, Article number: 116 (2025) Cite this article

Abstract

Background

Maintenance haemodialysis (MHD) has emerged as a primary treatment modality in individuals with end-stage kidney disease. However, haemodialysis not only affects physiological well-being but also significantly influences patients’ social engagement and quality of life. Consequently, investigating the present status and repercussions on social participation among individuals undergoing MHD has evolved as a crucial area of research. This study aimed to investigate the current status of social participation among patients undergoing MHD and analyse the influencing factors, providing a theoretical basis for clinical intervention.

Methods

This cross-sectional study utilised a convenience sampling method to select 441 patients undergoing maintenance haemodialysis (MHD) at seven tertiary hospitals in Lianyungang between January and May 2024 as survey participants. The study employed a general information questionnaire along with several assessment tools, including the Chinese version of the Impact on Participation and Autonomy; Social Support Rating Scale; Hospital Anxiety and Depression Scale; Pittsburgh Sleep Quality Index; Chinese version of the Functional Assessment of Chronic Illness Therapy-Fatigue; and Medical Outcomes Study Health Status Short Form. Patients with end-stage renal disease aged ≥ 18 years and undergoing MHD for ≥ 3 months were included. Those with other severe illnesses, psychiatric disorders, personality disorders, or inability to cooperate with the study were excluded. Multivariate linear regression analysis was used to identify factors influencing social participation in MHD patients.

Results

The total score of social participation among patients on MHD was 54. Multiple linear regression analysis indicated that, based on the International Classification of Functioning, Disability, and Health framework, total scores of depression, total scores of social support, age, total scores of the fatigue scale, smoking history, and employment status were the main influencing factors of social participation in patients on MHD (P < 0.05).

Conclusions

The level of social participation among patients on MHD was moderate and in need of enhancement. Healthcare providers should prioritise older, unemployed patients and improve their social participation and quality of life by addressing issues such as fatigue, depression, and enhancing social support.

Peer Review reports

Introduction

Maintenance haemodialysis (MHD) is a cornerstone treatment for end-stage kidney disease [1]. Despite significant advancements in dialysis technology and improved patient access to treatment, the quality of life is compromised; patients continue to experience high incidences of symptoms, morbidity, and mortality. Individuals undergoing MHD often bear a substantial symptom burden and encounter significant financial pressures. The poor prognosis in patients with MHD remains a pressing public health challenge [2,3,4]. In 2001, the World Health Organization released the “International Classification of Functioning, Disability and Health (ICF)” and defined “social participation” as “the extent to which an individual is able to engage in life situations.” Since then, it has emphasised that promoting participation in society is the ultimate goal of rehabilitation for individuals with chronic diseases [5]. The ICF framework [6] offers a standardised language for comprehensively delineating various health functions, structured hierarchically into health conditions. These conditions encompass body functions and structures, activities, participation, personal factors, and environmental influences. Since its inception, social participation has evolved into a critical metric for evaluating rehabilitation outcomes [7]. Most research has focused on social participation among individuals with conditions such as stroke [8] and patients undergoing leg surgery [9]. To enhance the quality of life and well-being of patients undergoing MHD, this study investigates the current status of social participation and identifies influencing factors within the framework of the International Classification of Functioning, Disability, and Health (ICF).

Methods

Study participants

This cross-sectional study involved 441 patients receiving MHD at the blood purification centres of seven tertiary hospitals in Lianyungang, conducted from January to May 2024. The participating hospitals included Xuzhou Medical University Affiliated Lianyungang Hospital, Lianyungang Traditional Chinese Medicine Hospital, Lianyungang Oriental Hospital, Ganyu District People’s Hospital, Donghai County People’s Hospital, Guanyun County People’s Hospital, and Guannan County First People’s Hospital. Approval for the study was obtained from the respective hospitals prior to its initiation.

The inclusion criteria were as follows: a clinical diagnosis of end-stage kidney disease; an age of 18 years or older; and MHD treatment for a duration of at least 3 months. The exclusion criteria included: severe dysfunction of the heart, liver, or lungs; respiratory failure or malignant neoplasms; mental illnesses or personality disorders; as well as other serious medical conditions that would preclude participation in the study.

To ensure consistency, the entire survey process was personally overseen by the researcher. Acknowledging the potential challenges patients may encounter in completing the questionnaires independently, informed consent was secured. The researcher, without introducing any subjective bias, read each question aloud and meticulously recorded the patients’ responses. A total of 463 questionnaires were distributed, resulting in 441 valid responses after excluding those with identical answers and completion times of less than 2 min, thereby achieving a response rate of 95.25%. Patients’ blood indicators and anthropometric data were extracted from the medical record system.

Research tools

A general information questionnaire was designed by the researchers and included socio-demographic information on age, sex, education level, marital status, caregiver (e.g. spouse, parents, and children), work status (whether employed, type of work, and work intensity), average monthly household income, and medical expense payment method; clinical information on dialysis initiation time, vintage, and frequency and medication status, primary disease, comorbidities, vascular access type, smoking history, alcohol history, and history of falls (past year); anthropometric data on height, weight, body mass index, blood pressure changes, and weight changes; and blood biochemical indicators of creatinine, serum albumin, haemoglobin, potassium, and sodium levels.

The Chinese version of the Impact on Participation and Autonomy (IPA) questionnaire [10] being translated into Chinese by Professor Zhou LS’s team, Cronbach’s α was 0.937, used to evaluate individuals’ self-perception of their level of social participation. It includes four dimensions: indoor autonomous participation, outdoor autonomous participation, family role autonomous participation, and social life and social relationship, with 25 items. Using a 5-point Likert scale, the total score ranges from 0 to 100 points. The score is inversely proportional to social participation ability.

The Social Support Rating Scale (SSRS), developed by Xiao [11], used to measure the ability of individuals or groups to access and utilize social resources. It includes three dimensions, 10 items, and uses a 4-point Likert scale. The total score is 66 points, with scores below 45 indicating low social support and scores above 45 indicating high social support. Cronbach’s α is 0.77.

The Hospital Anxiety and Depression Scale (HADS) includes 14 items and is used to assess depression and anxiety in comprehensive hospital patients [12]. The scale is divided into two parts: the Depression Subscale (HADS-D) and Anxiety Subscale (HADS-A), each with 7 items, using a 4-point Likert scale (0–3 points). The total score for each subscale ranges from 0 to 21 points, with 8 points as the threshold. A higher score indicates a more severe level of depression or anxiety. In the Chinese context, HADS has shown good internal consistency [13].

The Pittsburgh Sleep Quality Index (PSQI) is used to evaluate sleep status in participants in the past month [14] and consists of 7 components with a total of 19 items for self-assessment. Each component is rated on a 3-point scale (0–3 points); the scores of each component are summed to obtain the total score of PSQI (0–21 points). A higher score indicates poorer sleep quality. A PSQI score greater than 5 indicates sleep disturbances in the past month, while a score greater than 10 indicates severe sleep disturbances. In the Chinese context, PSQI has shown acceptable reliability (Cronbach’s alpha = 0.71) [15].

Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue), initially validated by researchers including Cella et al. [16] in patients with cancer with anaemia, is used to assess the level of fatigue in patients over the past seven days. This scale consists of one dimension with 13 items, using a 5-point Likert scale (0–4 points). The total score ranges from 0 to 52 points, with higher scores indicating lower levels of fatigue and higher quality of life. According to validation studies [17], the FACIT-Fatigue scale demonstrates strong internal consistency (Cronbach’s alpha = 0.90 ~ 0.98).

The Medical Outcomes Study Health Status Short Form (SF-36) is a standard tool used globally to assess quality of life [18]. Covering 8 dimensions with 36 assessment items, the raw scores of each dimension can be converted to standardized scores using specific formulas, ranging from 0 to 100 points. An increase in scores indicates an improved quality of life for patients. The SF-36 scale has demonstrated good reliability and validity.

Data collection methods

The study obtained approval from the hospital’s Scientific Review and Ethics Committee (Approval No: KY-20240108002-01) and was publicly registered in the National Medical Research Registration and Filing System. To ensure standardisation, the entire survey process was personally supervised by the researchers.

Statistical methods

SPSS 27.0 was used for data analysis. Metric variables following a normal distribution are presented as means; independent sample t-tests and one-way analysis of variance were used for intergroup comparisons, while Pearson correlation analysis was used for correlation analysis of bivariate variables. Continuous variables not following a normal distribution are presented as median (lower quartile, upper quartile), with intergroup comparisons analysed using the independent samples Mann-Whitney U test and correlation analysis conducted using Spearman bivariate correlation analysis. The best subset method was used to select statistically significant independent variables based on importance scores. The variance inflation factor was used to assess collinearity among indicators. Multiple linear regression analysis was conducted to identify independent factors influencing patient IPA scores. Differences were considered significant at P < 0.05.

Results

General information and social participation status

The median total score for social participation of patients on MHD was 54 (range, 43–67). The median scores for the dimensions of indoor autonomous participation; family role autonomous participation; social life and social relationship autonomous participation; and outdoor autonomous participation were 1, 2.29, 2.5, and 3, respectively (Table 1).

Table 1 Scores of social participation scale
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Univariate analysis of general information, count data, and correlation analysis

This study included 441 patients on MHD aged 18–80 years, with a median age of 54 years, and dialysis vintage ranging between 3 and 309 months, with a median of 43 months. There were 279 male (63.3%) and 162 female (36.7%) patients. Regarding education level, 148 patients had primary school education or below (33.6%), 168 had junior high school education (38.1%), 82 had high school or technical school education (18.6%), and 43 had college education or above (9.8%) (Tables 2 and 3).

The univariate analysis showed that differences in IPA total scores were significant (P < 0.05) among patients with different education levels, marital status, caregivers being parents or children, work status, occupation, work intensity, income level, residence, medication types, number of primary diseases, vascular access types, and smoking status (Table 2).

Correlation analysis indicated that patient age, total anxiety score, total depression score, total HADS score, and PSQI score were positively correlated with the total IPA score (P < 0.05), whereas patient SSRS value, total fatigue score, total SF-36 score, creatinine, albumin, haemoglobin, and sodium were negatively correlated with the total IPA score (P < 0.05). The details on the IPA total score correlation analysis are presented in Table 3; Fig. 1.

Table 2 Single-factor analysis results of social participation in patients on MHD (n = 441)
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Table 3 Results of the correlation analysis of social participation in patients on MHD (n = 441)
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Fig. 1
figure 1

Correlation analysis between total score on the IPA scale and relevant indicators in patients on MHD

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Multivariate linear regression analysis of factors influencing social participation

Using the best subset method, significant and correlated independent variables with importance scores were selected, including total anxiety score, total depression score, SSRS value, age, total fatigue score, smoking history, work status, residence, marital status, and education level to be fitted into the multivariate linear regression analysis, with the IPA total score as the dependent variable. The results showed that the independent factors influencing the IPA score of patients were the total depression score, SSRS value, age, total fatigue score, smoking history, and work status (P < 0.05). Specifically, as patient age and total depression score increased, the IPA total score increased. As the SSRS value and total fatigue score increased, the IPA total score decreased. The IPA total score decreased in smoking patients compared with non-smoking patients and in working patients compared with non-working patients (Table 4).

Table 4 Results of multiple linear regression analysis on the influencing factors of social participation in patients on MHD (n = 441)
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Discussion

Our results revealed that the median score for social participation in patients on MHD was 54 (range, 43–67), indicating a moderate level, consistent with previous findings [19], suggesting that the social participation level of patients on MHD needs further improvement. Scores in various dimensions showed that patients on MHD had lower average scores in indoor autonomous participation items but higher participation levels, whereas they had higher average scores in outdoor autonomous participation items but lower participation levels. The analysis suggests that symptoms such as fatigue and itching caused by the disease and treatment burden [20], as well as psychological disturbances like social avoidance, distress, and disease-related shame, significantly disrupt the daily lives of patients. This leads to feelings of social isolation and reduced outdoor participation levels due to a sense of inferiority in outdoor activities, while the indoor environment is more familiar and safer, providing physical and psychological comfort to patients, making it easier for them to accept. This indicates that nursing staff should comprehensively assess the outdoor participation levels and influencing factors in patients on MHD and provide personalised patient-centred holistic care.

Impact of individual factors on social participation

Age was an independent factor influencing the social participation of patients on MHD. As age increased, the social participation level of patients gradually declined, social isolation and loneliness are increasing gradually, consistent with previous findings in people of different age groups [21]. With advancing age, patients experience a gradual decline in physical function and an increase in underlying diseases and complications, affecting their ability and willingness to participate in social activities. This highlights the importance of nursing staff focusing on screening and assessing older patients on MHD, providing effective interventions in high-risk patients to enhance their social participation level, improve their quality of life, and increase their sense of well-being.

Patients who were employed had significantly higher levels of social participation than did those who were unemployed. In this study, 410 patients (93.0%) were unemployed, possibly limited by the disease and treatment itself, as well as the patients’ level of education and work capacity, making them unable to meet work demands. Only 23 patients (5.2%) were employed, and most of these jobs involved light-to-moderate labour intensity. This may be due to the current social environment not providing suitable types of work and work intensity, as reported by van der Mei et al. [22]. Therefore, healthcare professionals should encourage patients to actively participate in work while considering the patients’ health status and treatment needs, finding a balance to ensure that patients can engage in social activities and work as much as possible while maintaining their health.

Smokers had higher levels of social participation than did non-smokers. We found that economic status, health issues, and education level could influence smoking rates [23,24,25]. Most patients on MHD were unemployed and had lower average household incomes, lower levels of education, restricted quality of life, and challenges in mental health. These factors collectively contributed to the higher smoking rates among patients on MHD. Gao et al. [26] reported a significant association between social participation and continued smoking in the chronic disease patient population. Conversely, Su et al. [27] found that smoking, as a predictive factor for social participation in this population, was associated with poorer social participation. This discrepancy may be related to the selection of activity participation indicators. However, in traditional Chinese culture, smoking is not just a personal behaviour but also carries important social and cultural significance, closely linked to social interactions, cultural customs, and social status. Similarly, Perski et al. [28] found that smoking is widely accepted for coping with stress. Given limitations in the comprehensive collection of smoking-related factors, this study did not deeply explore smoking and its impact on different social activities. Moreover, the diversity of the study population led to varying research outcomes. Considering the negative health effects of smoking, this study does not advocate increasing social participation by promoting smoking behaviour.

Environmental factors impacting social participation

Enhancing social support could significantly improve social participation in patients on MHD, as discussed previously [29, 30]. As patients with long-term chronic disease, individuals on MHD bear the burden of the disease, treatment, and complications and must regularly travel to the hospital for dialysis treatment. They particularly require support from family members, with interactions among family members, friends, and relatives becoming an important part of the patient’s social participation. Quality social support [31] provides patients with psychological support and economic material resources, reducing negative emotions and life stress, as well as the adverse effects of the disease. Support also enhances the patients’ confidence and willingness to participate, motivating them to engage more actively in social interactions. Therefore, the emotional and material support provided by family, friends, and relatives is crucial for promoting patients’ active participation in social life; establishing and maintaining social relationships; and enhancing their level of social participation.

Impact of health condition on social participation

The occurrence of depression had a significant negative predictive effect on social participation, with the level of social participation decreasing as the severity of depression worsened, consistent with previous findings by Kuzu et al. [32]. As a negative emotion, depression not only affects the psychological health of patients but may also weakens their social drive and quality of life. With the progression of the disease and duration of dialysis, patients and their families gradually overcome the initial feelings of panic, anxiety, and fear during early stages of illness. Meanwhile, given economic, family, and work reasons, family members gradually return to their original social roles, potentially reducing their companionship and understanding of the patients’ needs. Self-sufficient patients may not be accompanied by family members during dialysis treatment, potentially leading to deep feelings of loneliness in these patients. Additionally, the anticipation of the disease progression and uncertainty of death may cause patients to worry about their future life when being alone. Nataatmadja et al. [33] reported on the psychological health of patients on dialysis, showing that these patients may experience weakened self-management motivation due to the ongoing threat of dialysis burden, lifestyle restrictions, death, and symptom burden, thereby exacerbating the severity of depression. Therefore, in medical practice, healthcare providers should pay attention to the psychological status in patients on MHD; provide necessary psychological support and interventions to alleviate depressive emotions; and enhance the social participation level and quality of life of patients. Encouraging family members to provide companionship and communication and continue participating in patients’ treatment process can offer emotional and psychological support to help patients better cope with the challenges brought on by the disease.

Fatigue is the most prevalent symptom among patients on MHD. In our study, fatigue was significantly and commonly present in patients on MHD. Multivariate linear regression analysis indicated that the lower the level of fatigue in patients, the higher their level of social participation, consistent with previous findings [34]. Each dialysis treatment may impose a certain burden on the patients’ physical and psychological well-being, increasing feelings of fatigue. Additionally, fatigue may be closely related to lifestyle and self-management abilities. Most patients on MHD experience long-term symptoms of anxiety, depression, and sleep disorders, which may contribute to the exacerbation of fatigue. A multicentre cross-sectional study conducted by Alshammari et al. [35] showed that dialysis-related factors, including the duration of hospital stay, number of comorbidities, duration of dialysis, satisfaction with dialysis time, and personnel selecting dialysis time, significantly impact the level of fatigue. These factors collectively explain the fatigue status of the study participants. Therefore, healthcare professionals need to address disease treatment, prevention of complications, dietary adjustments, and alleviation of sleep disorders to reduce the level of fatigue in patients and subsequently enhance their social participation level.

Conclusions

The social participation of patients on MHD was at a moderate level and needed further improvement, particularly in terms of outdoor autonomous participation. Healthcare professionals should pay more attention to older and unemployed patients on haemodialysis and take proactive measures to reduce fatigue and depression and enhance social support for improving their social participation.

This study presents several methodological limitations. First, the cross-sectional design restricts causal inferences, allowing only the identification of associations between variables. Second, the exclusive recruitment of participants from tertiary public hospitals in Lianyungang introduces potential selection bias, thereby limiting the generalisability of findings across diverse healthcare settings and geographical regions. Future investigations should employ longitudinal designs with randomised multi-regional sampling strategies and increased sample sizes, ultimately producing more robust, population-specific evidence to guide targeted clinical interventions.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

FACIT-Fatigue:

Functional Assessment of Chronic Illness Therapy-Fatigue

HADS:

Hospital Anxiety and Depression Scale

IPA:

Impact on Participation and Autonomy

SF-36:

Medical Outcomes Study Health Status Short Form

MHD:

Maintenance hemodialysis

PSQI:

Pittsburgh Sleep Quality Index

SSRS:

Social Support Rating Scale

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Acknowledgements

We are very grateful for the financial support provided by the Human Resources and Social Security Bureau of Lianyungang City for this study. Our sincere thanks go to Professor Zhang Hailin for his insightful guidance and valuable suggestions throughout the research process. We also appreciate the assistance provided by colleagues at the Blood Purification Center in data collection and analysis. Special thanks are due to Teacher Liu Ping for the technical support provided during the research process, and we also thank Nurse Manager Yin Lixia for her administrative assistance. We are grateful to the participants who voluntarily joined our study; without them, this research would not have been possible. We appreciate the valuable feedback provided by the reviewers, which greatly improved the quality of this manuscript. Finally, we thank the Affiliated Lianyungang Hospital of Xuzhou Medical University for their unwavering support and encouragement throughout the entire project process.

Funding

The research was funded by the Lianyungang Sixth Phase “521 Project” Scientific Research Project (LYG06521202123).

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Authors and Affiliations

  1. Department of Nursing, The Affiliated Lianyungang Hospital of Xuzhou Medical University, The First People’s Hospital of Lianyungang, No. 6 Zhenhua East Road, Lianyungang, Jiangsu, 222061, China

    W. W. Ge & H. L. Zhang

  2. Office of Quality and Safety, The Affiliated Lianyungang Hospital of Xuzhou Medical University, The First People’s Hospital of Lianyungang, Lianyungang, Jiangsu, 222061, China

    P. Liu

  3. Hemodialysis Center, The Affiliated Lianyungang Hospital of Xuzhou Medical University, The First People’s Hospital of Lianyungang, Lianyungang, Jiangsu, 222061, China

    L. X. Yin

Authors
  1. W. W. Ge
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  2. H. L. Zhang
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  3. P. Liu
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  4. L. X. Yin
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Contributions

Ge Wenwen: Topic and thesis design, collection and organization of materials and data, article writing; Zhang Hailin: Guidance on research topics, thesis review; Liu Ping: Data organization and analysis; Yin Lixia: Thesis guidance, data verification.

Corresponding author

Correspondence to H. L. Zhang.

Ethics declarations

Ethics approval and consent to participate

This study complies with the Declaration of Helsinki and was approved by the Xuzhou Medical University Affiliated Lianyungang Hospital’s scientific Review and Ethics Committee (Approval Number: KY-20240108002-01) and registered with the National Medical Research Registration and Filing System for public records. All participants provided informed consent.

Consent for publication

All participants in this study provided informed consent for the publication of the results. The study was approved by the Scientific Review and Ethics Committee of Xuzhou Medical University Affiliated Lianyungang Hospital (Approval Number: KY-20240108002-01). Informed consent was obtained from all participants after a detailed explanation about the study’s purpose, methods, potential risks, and benefits. All participants were assured of the confidentiality of their data and the anonymity of their results. All authors have read and approved the final version of the manuscript and agree to its submission to BMC Nephrology.

Competing interests

The authors declare no competing interests.

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Ge, W.W., Zhang, H.L., Liu, P. et al. Current status and influencing factors of social participation in patients undergoing maintenance haemodialysis: a Cross-sectional study following the international classification of functioning, disability, and health framework. BMC Nephrol 26, 116 (2025). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12882-025-04044-z

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BMC Nephrology

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