The Joanna Briggs Institute’s (JBI) PICo framework, an Australian evidence-based model (9), informed the development of our inclusion and exclusion criteria, using “P” for the study population; “I” for the research focus, the phenomenon of interest; and “Co” for the research context. The study’s reporting was informed by the principles of the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) framework (10) (Supplementary material). The thematic analysis approach was employed to synthesize the findings (11).

Zhang Kai and Teng Zeng searched PubMed, Embase, The Cochrane Library, Web of Science, CINAHL, CNKI, CBM, Wanfang, and VIP databases. The search integrated subject terms and free terms, customized for each database’s unique characteristics. Search terms included “hemodialysis,” “MHD,” “hemodialysis,” “renal dialysis,” “young people,” “young*,” “adult*,” “middle-aged adult,” “experience*,” “feel*,” “opinion,” “need*,” “demand*,” “perception*,” “attitude*,” “qualitative research,” “qualitative study,” “grounded theory,” “phenomenological analysis,” “interview*,” “focus group,” and “ethnography.” We conducted a manual search using the literature tracing method to comprehensively supplement the literature. Our search encompassed the period from the establishment of each database to November 4, 2024. The study is registered in Prospero: CRD42024577165. Table 1 illustrates the Search strategy.

① Participants (P): Hemodialysis patients aged 18–65 were classified as young and middle-aged. ② Interest of Phenomena (I): Psychological states, needs, experiences, and emotions of hemodialysis patients aged 18–65. ③ Context (Co): Interviews with hemodialysis patients during hospital or home. ④ Study types (S): Qualitative studies using phenomenology, grounded theory, and ethnography, encompassing interviews and thematic analysis.

① Exclude conference papers, policy documents, review articles, and case reports. ② Exclude articles that are published more than once or lack accessible full texts. ③ Exclude studies with a methodological quality rating of C. ④ Exclude literature that is not written in Chinese or English.

Two researchers independently evaluated the included studies based on the 2016 Joanna Briggs Institute’s quality assessment criteria for qualitative research (12). They rated 10 criteria, responding “yes,” “no,” or “unclear” for each. When all 10 items are answered “yes,” the likelihood of bias is minimal and rated as A. If some of the quality criteria are met but not all, the possibility of bias is considered moderate, designated as B. If all items are answered “no,” the possibility of bias is deemed high and classified as C. Discrepancies in evaluations were resolved through discussion; a third party arbitrated if consensus was not reached. Studies graded A and B were included in the final analysis.

Two researchers, both postgraduate students who have completed a course in evidence-based nursing and are familiar with qualitative methods, independently screened the literature, extracted data, and cross-verified their findings. A third researcher (NCP) mediated evaluations in cases of disagreement. The screening process included importing documents into NoteExpress for de-duplicating, removing, reviewing titles and abstracts based on established criteria, and conducting a full-text review for secondary screening. Data extraction focused on author, country, methodology, study object, the phenomenon of interest, contextual factors, and key findings.

The information from the included studies were integrated utilizing the three-stage thematic analysis framework proposed by Thomas and Harden (11). This process encompassed three distinct phases. Initially, a dual-review methodology was applied by ZK and NCP, who meticulously scrutinized the primary literature, engaging in repeat readings to assign codes based on the semantic and contextual nuances of the text. Proceeding to the second phase, ZK and NCP conducted a comparative analysis of the emergent codes, identifying commonalities and disparities, which facilitated the formation of descriptive themes. In the third phase, the reviewers ZK and NCP conducted a thorough review of these descriptive themes, discerning novel insights, interpretations, or presuppositions that enriched the thematic landscape.

Initially, our search strategy identified 1,854 relevant articles, which was reduced to 1,272 after the removal of duplicates. Following the review of titles and abstracts, the articles were narrowed down to 85 according to the selection. The full-text review led to the exclusion of an additional 63 articles. A total of 22 articles were included after quality evaluation. The process of literature screening is depicted in Figure 1.

The research methods include: 16 phenomenological studies, 2 grounded theory studies, 2 descriptive qualitative studies, 1 exploratory qualitative study and 1 narrative qualitative study. Age range from 18 to 65 years old. The study involving the authentic experience of hemodialysis in young and middle-aged adults in 14 countries. Studies were conducted in the United States (n = 1), China (n = 5), Ghana (n = 1), Ethiopia (n = 2), Iran (n = 2), South Africa (n = 1), Norway (n = 1), The United Kingdom (n = 1), New Zealand (n = 1), Pakistan (n = 1), Ireland (n = 1), Thailand (n = 1), Brazil (n = 3), Singapore (n = 1). More than 50% of the articles in this paper were published less than 5 years ago, and only 2 articles were published more than 15 years ago. The basic characteristics of the included literatures are shown in Table 2.

Twenty-one studies were rated as “B” and 1 was rated as “A,” and thus none was deleted after quality appraisal. Twenty-one studies rated “no” on item 6 “introducing researchers from a cultural or theoretical background.” 19 studies were rated “no” in item 7 “study describes the researchers’ influence on the study and vice versa.” On the other items, all 22 studies were rated as “yes.” The results of literature quality evaluation is shown in Table 3.

We extracted 83 themes from 22 studies, grouped similar findings into 9 subthemes, and synthesized these into 4 overarching themes. The results of integration are shown in Figure 2.

Young and middle-aged individuals, who shoulder the highest work responsibilities and family/societal obligations, endure substantial physical and psychological trauma from kidney disease and hemodialysis. This leads to physiological decline, increased complications, symptom burden, and social dysfunction. Patients often experience a variety of negative emotions, including self-blame, regret, fear, anxiety, pain, irritability, disgust, loneliness, depression, despair, and suicidal thoughts. Some may even refuse treatment. However, they also attempt to cope with negative emotions. For customized nursing interventions, medical staff should maintain consistent communication, promptly assess the psychological states of patients and identify early signs of negative emotions. For patients who already have severe emotional distress, it is essential to facilitate the expression of feelings, offer effective psychological counseling, support self-adjustment, and encourage a positive outlook. Psychological interventions, such as humor therapy (31), mindfulness-based stress reduction (32), and cognitive-behavioral therapy (33) help individuals to change maladaptive cognitions and behaviors, alleviate negative emotions, and develop coping mechanisms. More deeply, the results of this study showed that most patients had negative emotions due to symptom burden, decreased physical function, and disease management strategies, such as multidisciplinary nursing care, which promotes collaboration among healthcare professionals, ensuring optimal treatment, maximal symptom relief, and the reduction of negative emotions (34).

The study showed that hemodialysis patients face significant financial strain from treatment costs, symptom management, unemployment, and healthcare policies. To alleviate their burden, the following actions are recommended. While systemic reforms require governmental action, medical staff could implement immediate interventions to mitigate economic burdens. Clinicians could proactively identify patients’ financial distress and establish confidential counseling channels for those opting to disclose economic concerns. This could help in identifying potential financial resources and family support systems available to patients for long-term hemodialysis. Tailoring dialysis regimens to individual clinical profiles and residual renal function may yield both medical and socioeconomic benefits. Incremental hemodialysis, offering sessions of 3–4 h ≤2 times per week or <3 h ≥3 times, adapts to personal situations and allows flexible treatments adjustments, which can slow the renal function decline, reduce dialysis frequency, lower medical costs and ease patients’ financial strain (35, 36). Introducing nocturnal dialysis services and implementing flexible scheduling options, such as home hemodialysis, support patients’ employment needs and increase their income. Through the implementation of these clinically grounded, patient-oriented strategies, to alleviate the economic burdens inherent in mostly long-term hemodialysis management.

The prolonged hemodialysis process, with its specialized treatment and symptom burden, disrupts patients’ lives. Hemodialysis patients often experience reduced family function due to dialysis complications and disease treatment needs. Healthcare providers should take a family-centered approach, wherein interventions engage both patients and their family members as collaborative partners in treatment. This approach involves structured family education programs detailing renal pathophysiology, dialysis frequency protocols, evidence-based dietary modifications, and pharmacological management, etc. (37). By strengthening familial health literacy and caregiving capacity, such interventions may reduce treatment-related complications while enhancing psychosocial support systems to facilitate successful household reintegration (37). Medical staff could communicate more with patients and guide them through interventions such as hand-foot massage (38), aerobic exercise (39), and self-acupressure (40) to alleviate symptom cluster, enhance their quality of life, and facilitate return to normal life. For patients pursuing vocational or educational reintegration, care teams should develop tailored transition plans featuring flexible dialysis scheduling coordinated with occupational rehabilitation specialists. This multidimensional care framework aims to optimize both clinical outcomes and psychosocial adaptation throughout the disease trajectory. Hemodialysis patients require dietary restriction due to their severely impaired kidney function, which prevents them from properly excreting metabolic waste and regulating electrolyte and water balance (41, 42). However, the results of this study indicate that dietary restrictions in young and middle-aged hemodialysis patients often lead to decreased appetite, loss of social function, and reduced quality of life. Healthcare teams should collaborate with patients to co-develop individualized dietary plans, integrating clinical parameters and psychosocial needs. This evidence-based approach aims to reduce unnecessary dietary constraints while supporting social reintegration through nutrition autonomy.

The results of this study show that many patients are uninformed about their disease’s origins and self-management, highlighting the need for better health education. To empower patients, medical staff could develop a series of educational materials, including brochures, posters, videos, and science communication via digital platforms. These resources would disseminate knowledge on kidney disease self-management and dialysis, ultimately improving patients’ health literacy and self-care capabilities (43, 44). The results of this study suggest that hemodialysis patients often need to seek peer and social support to help them better face the disease and the challenges of dialysis treatment. Therefore, medical staff could help patients to establish peer support network to achieve the purpose of returning to society and promoting patients’ trust (45). The community could organize recreational activities for dialysis patients to participate in (such as painting, calligraphy classes, and light exercise classes) to enhance their sense of social integration.