---
title: "Pain experiences of Tibetan children with hematologic malignancies in China"
id: "plos-one-11-pain-experiences-of-tibetan-children-with-hematologic-malignancies-in-china-a"
canonical_url: "https://medichelpline.com/clinical-feed/plos-one-11-pain-experiences-of-tibetan-children-with-hematologic-malignancies-in-china-a"
content_type: "clinical_feed_article"
specialty: "Pediatrics"
source_name: "PLOS ONE (Medicine)"
source_url: "https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0360911"
published_at: "2026-10-16T14:00:00.000Z"
evidence_level: "Journal Feed"
license: "CC-BY-NC-4.0 / Informational Use"
---
# Pain experiences of Tibetan children with hematologic malignancies in China
## Provenance & Clinical Metadata
- **Canonical URL:** https://medichelpline.com/clinical-feed/plos-one-11-pain-experiences-of-tibetan-children-with-hematologic-malignancies-in-china-a
- **Specialty:** [Pediatrics](https://medichelpline.com/clinical-feed/pediatrics.md)
- **Primary Source:** PLOS ONE (Medicine)
- **Source URL:** [Original Journal Publication](https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0360911)
- **Published At:** 2026-10-16T14:00:00.000Z
- **Evidence Rating:** Journal Feed
## Executive GIST (TL;DR)
- Study purpose: explore how **Tibetan children** with **hematologic malignancies** perceive, express, and cope with pain during hospitalization to inform culturally and linguistically responsive nursing care. - Design and setting: descriptive phenomenological study using play-based, semi-structured face-to-face interviews conducted in a pediatric hematology–oncology ward in Sichuan Provincial People’s Hospital. - Sample: purposive recruitment of 15 Tibetan children aged 4–12 years who were hospitalized and had experienced pain related to disease, treatment, or procedures. - Data collection: play materials, drawings, sand-tray tools, and conversational prompts; interviews lasted 15–45 minutes and were audio-recorded; five interviews were entirely in Mandarin and 10 included Tibetan with a trained interpreter. - Analysis: adapted Colaizzi phenomenological method; Mandarin transcripts were primary analytic source; two investigators independently coded, discussed disagreements, and consulted the interpreter for cultural-linguistic clarification. - Primary themes: cultural/spiritual interpretations of pain (silent endurance, religious/traditional coping); linguistic/communicative constraints (limited Mandarin vocabulary, indirect expression); family-centered dimensions (emotional security from family presence, family-based comfort practices); hospitalization-related disruptions (schooling interruption, peer contact loss, concerns about disclosure and isolation). - Communication implications: investigators reported that child-centered approaches, attention to indirect and nonverbal signals, and family involvement may improve pain assessment accuracy for Tibetan children less comfortable in Mandarin. - Methodological notes: participant validation was not performed owing to participants’ age and treatment burden; de-identified data may be available on request subject to ethics approval; NVivo 12 supported data management. - Limitations reported: single-site recruitment, small purposive sample, reliance on Mandarin transcripts for analysis, and absence of caregiver interviews or formal back-translation of English quotes.
## Clinical Analysis & Structured Key Points
Pain experiences of Tibetan children with hematologic malignancies in China: A descriptive phenomenological study | PLOS One Browse Subject Areas ? Click through the PLOS taxonomy to find articles in your field. For more information about PLOS Subject Areas, click here . Article Authors Metrics Comments Media Coverage Reader Comments Figures Figures Abstract Background Pain is common in children with hematologic malignancies. It can be highly distressing and can shape how children feel and function during hospitalization. Children’s pain experiences are influenced not only by disease and treatment but also by developmental level, family context, language, and culture. However, little is known about how Tibetan children with hematologic malignancies experience and communicate pain in clinical settings. Aim We aimed to explore the pain experiences of Tibetan children with hematologic malignancies and to inform culturally responsive pain assessment and nursing care. Methods We used a descriptive phenomenological design. From February to March 2026, we purposively recruited 15 Tibetan children with hematologic malignancies from a pediatric hematology-oncology ward in Sichuan, China. Data were collected through play-based, semi-structured face-to-face interviews with children and analyzed using an adapted version of Colaizzi’s phenomenological method. Results Four themes were identified: (1) cultural and spiritual interpretations of pain, including silent endurance and religious or traditional coping; (2) linguistic and communicative constraints in pain expression, including limited Mandarin vocabulary and indirect expression of discomfort; (3) family-centered dimensions of pain experience, including emotional security through family presence, relational continuity through family accompaniment, and familiar family-based comfort practices; and (4) hospitalization-related disruptions to everyday social life, including disrupted schooling and peer contact and concerns about illness disclosure and social isolation. Conclusions The findings suggest that culturally responsive pain assessment may benefit from child-centered communication, attention to indirect and nonverbal expressions of pain, and recognition of the supportive role of family relationships and familiar comfort practices. Citation: Chen Y, Liu Y, Zhou J, Pu H, Zhang J (2026) Pain experiences of Tibetan children with hematologic malignancies in China: A descriptive phenomenological study. PLoS One 21(10): e0360911. https://doi.org/10.1371/journal.pone.0360911 Editor: JONATHAN BAYUO, The Hong Kong Polytechnic University, HONG KONG Received: April 30, 2026; Accepted: October 2, 2026; Published: October 16, 2026 Copyright: © 2026 Chen et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data Availability: The qualitative data underlying the findings of this study are not publicly available because they contain potentially identifying and sensitive information from child participants, and the informed consent obtained from their legal guardians did not include permission for the public sharing of interview transcripts. De-identified data may be made available to qualified researchers upon reasonable request and following approval by the Ethics Committee of Sichuan Provincial People’s Hospital. Data access requests should be submitted to the Ethics Committee at clinicalresearchcenter@med.uestc.edu.cn . Access will be considered on a case-by-case basis and will be subject to ethical review and applicable data-protection requirements. Funding: This work was supported by the Chengdu Municipal Health Commission (Grant No. 2023JDR0307; https://cdwjw.chengdu.gov.cn/ ) and the Sichuan Rehabilitation Medicine Association (Grant No. SCKFKY20250218; https://www.scarm.org.cn/ ), both awarded to Jinglan Zhang (JZ). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Competing interests: The authors have declared that no competing interests exist. 1. Introduction Hematologic malignancies, particularly leukemia and lymphoma, account for a substantial proportion of childhood cancers worldwide [ 1 ]. Pain is frequently experienced during cancer treatment and may arise from the disease itself, treatment-related complications, surgery, or repeated diagnostic and therapeutic procedures [ 2 , 3 ]. Pediatric cancer pain is multidimensional; it may coexist with anxiety and sleep disturbance and can interfere with daily functioning and quality of life [ 4 – 6 ]. Accordingly, contemporary pediatric pain guidance emphasizes developmentally appropriate and systematic assessment, together with timely multimodal management and the prevention of procedure-related pain and distress [ 7 , 8 ]. In pediatric oncology, child-centered communication is particularly important because children’s communication needs and participation preferences vary according to age, developmental level, emotional state, and clinical context [ 9 , 10 ]. Children may communicate pain verbally, nonverbally, symbolically, or through subtle behavioral changes; failure to recognize these different forms of expression may compromise pain assessment [ 11 ]. Child-centered communication should therefore support symptom reporting, emotional needs, and meaningful participation in care. In China, strengthening pediatric healthcare has become a national priority, and a national expert consensus published in 2024 specifically addressed pain management in children with hematologic diseases and tumors [ 12 , 13 ]. Nevertheless, children with hematologic malignancies remain exposed to pain associated with repeated procedures and treatment during hospitalization [ 7 , 14 ], and challenges in pediatric pain assessment and management persist [ 5 , 15 , 16 ]. These challenges may be particularly relevant to children from ethnolinguistic minority backgrounds, as language discordance can affect how children communicate pain and how healthcare professionals assess and respond to it [ 17 , 18 ]. Healthcare capacity in Tibet has expanded, including the ability to diagnose and treat childhood leukemia within the region [ 19 ]; however, linguistic accessibility remains important when children receive care in predominantly Mandarin-speaking settings. For Tibetan children who are less comfortable communicating in Mandarin, reliance on Mandarin verbal self-report alone may not fully capture their pain experiences, particularly when pain is communicated through verbal, behavioral, symbolic, or nonverbal forms [ 11 , 20 ]. Beyond linguistic communication, pain is a personal and lived experience shaped by biological, psychological, social, and relational contexts [ 21 ]. Religious or spiritual frameworks may also provide ways for some children and families to make sense of serious illness and suffering and to cope with distress [ 22 , 23 ]. However, the meaning and importance of such beliefs and practices vary among individuals and should not be inferred from Tibetan identity alone. Hospitalization and treatment may further disrupt schooling, peer relationships, and everyday routines [ 24 ], while unfamiliar clinical environments and repeated procedures may increase fear and distress. Parents and other family members may provide emotional security, companionship, and practical support during treatment [ 25 , 26 ]. These intersecting experiences highlight the importance of culturally responsive care that explores each child’s personal, relational, cultural, and spiritual context rather than presuming needs or responses on the basis of ethnicity. Despite growing attention to pediatric cancer pain, evidence concerning how Tibetan children with hematologic malignancies perceive, communicate, and cope with pain within their particular sociocultural and linguistic contexts remains limited. Qualitative inquiry is well suited to addressing this gap because it enables in-depth exploration of children’s perspectives and lived experiences. Play-based interviewing may be particularly appropriate for eliciting children’s perspectives because it provides a developmentally sensitive and child-centered approach through which children can communicate experiences that may be difficult to articulate through conventional interviews alone [ 27 , 28 ]. Therefore, this descriptive phenomenological study used play-based interviews to explore the lived pain experiences of Tibetan children with hematologic malignancies and the sociocultural, linguistic, and relational contexts that may shape how pain is experienced, expressed, and managed. The findings are intended to inform linguistically accessible, culturally responsive, and child-centered pain assessment and nursing care. 2. Methods 2.1. Study design This study employed a descriptive phenomenological design guided by Husserlian phenomenology. Descriptive phenomenology seeks to explore lived experiences as perceived and described by participants while minimizing the influence of researchers’ prior assumptions. Consistent with Husserl’s concept of epoché, the researchers used bracketing throughout data collection and analysis [ 29 , 30 ]. Before the interviews, the research team discussed and documented their prior clinical assumptions concerning children’s pain expression, coping behaviors, and Tibetan cultural practices in reflexive notes. During data collection and analysis, the researchers began with open-ended questions, used the prespecified topic prompts flexibly without suggesting preferred responses, and repeatedly returned to the children’s original accounts to minimize the imposition of external interpretations. Phenomenological reduction was applied to identify the meanings embedded in the children’s descriptions of their pain experiences. Data were collected through play-based, semi-structured, face-to-face interviews conducted from 4 February to 28 March 2026 in the pediatric hematology–oncology ward of Sichuan Provincial People’s Hospital, Sichuan Province, China. The study was reported in accordance with the Standards for Reporting Qualitative Research (SRQR) [ 31 ]. 2.2. Participant recruitment Purposive sampling was used to recruit Tibetan children with hematologic malignancies from the pediatric hematology–oncology ward of Sichuan Provincial People’s Hospital. This sampling strategy enabled the recruitment of participants who had directly experienced the phenomenon under investigation and could provide relevant experiential information. The inclusion criteria were as follows: participants (1) were aged 4–12 years; (2) had a confirmed diagnosis of a hematologic malignancy; (3) were hospitalized for treatment at the time of recruitment; (4) had experienced pain related to the disease, treatment, or medical procedures; (5) were conscious and able to communicate at a basic level; and (6) spoke Tibetan as their first language or used Tibetan in daily communication, with or without Mandarin. Written informed consent was obtained from the parents or legal guardians, and verbal or written assent was obtained from the children when developmentally appropriate. Tibetan ethnicity was determined from the ethnicity recorded in the child’s medical record and confirmed by a parent or legal guardian; it was not inferred solely from language use. Two researchers contacted the ward’s head nurse to introduce the study aims and procedures, after which ward staff assisted in identifying potentially eligible participants. The study was explained to the children and their caregivers using age-appropriate and culturally sensitive language. Children who met the eligibility criteria and agreed to participate were enrolled. Recruitment proceeded alongside preliminary analysis until saturation was reached and confirmed. Saturation was operationally defined as the point at which consecutive interviews generated no new codes or substantively new meanings and did not require modification of the preliminary thematic structure. No new codes or meanings were identified after the 13th interview. Yi Chen and Yu Liu jointly made this saturation judgment and documented their discussion. Two additional interviews were conducted to confirm the stability of the thematic structure, resulting in a final sample of 15 children. Participant demographic and clinical characteristics are presented in Table 1 . Download: PNG larger image TIFF original image Table 1. Demographic and Clinical Characteristics of Participants (N = 15). https://doi.org/10.1371/journal.pone.0360911.t001 2.3. Data collection Data were collected from the children through play-based, semi-structured, face-to-face interviews. No separate or formal interviews were conducted with caregivers. When present, caregivers provided reassurance or necessary linguistic clarification only and were instructed not to answer on the child’s behalf. Caregivers were not treated as research participants or analytic data sources, and their statements were not coded, included in the thematic analysis, or used as supporting quotations. All themes and supporting quotations were derived from the children’s interview data. The interview guide was used flexibly rather than as a fixed questionnaire. Interviews began with broad questions about the children’s pain and hospitalization experiences. The guide also included prespecified topic-specific prompts concerning emotional responses, spiritual or traditional coping practices, pain communication in Mandarin, and changes in school and peer relationships. These prompts were used as appropriate according to each child’s age, responses, and interview context. Follow-up probes were used to clarify or deepen the children’s accounts. The interview guide is presented in Table 2 . Download: PNG larger image TIFF original image Table 2. Semi-structured interview guide. https://doi.org/10.1371/journal.pone.0360911.t002 Play-based interviewing followed a structured yet flexible procedure. At the beginning of each interview, the interviewer established rapport through brief informal interaction and introduced age-appropriate play materials, including drawing materials, toys, and sand-tray tools, to reduce anxiety and create a child-friendly environment. Children were invited to select materials according to their preferences, physical condition, language ability, and responsiveness. Play activities were used as supportive communication aids rather than as therapeutic interventions. Children could indicate the location and nature of their pain through drawing, gestures, or by pointing to body parts on toys. Sand-tray materials were used to facilitate symbolic expression of pain experiences, emotions, and hospital-related situations. Examples of open-ended prompts were “Can you show me how it feels?” and “What is happening here?” The interview process was adapted to the children’s developmental needs. Younger children were encouraged to communicate through play, gestures, drawings, and brief verbal responses, whereas older children were invited to provide more detailed narratives with flexible prompts. Interviews lasted approximately 15–45 minutes and were conducted in the ward playroom. All interviews were audio-recorded with consent. Field notes documented verbal responses, nonverbal expressions, emotional responses, interactions with play materials, and relevant contextual information. Play-based expressions were interpreted together with the interview transcripts and field notes rather than analyzed as independent therapeutic or diagnostic data. Five interviews were conducted entirely in Mandarin, whereas the remaining 10 involved Tibetan or a combination of Tibetan and Mandarin. During interviews involving Tibetan, real-time interpretation into Mandarin was provided by a hospital-based volunteer Tibetan–Mandarin interpreter who was a native Tibetan speaker, had received formal interpreter training, and had approximately three years of experience providing interpretation in clinical settings. The interpreter signed a study-specific confidentiality agreement before participating in the study. The initial Mandarin-language transcripts were jointly prepared by Yi Chen and the interpreter within 24 hours of each interview. For recordings containing Tibetan speech, the interpreter replayed the recordings and checked the Tibetan utterances against the corresponding Mandarin transcripts. Yi Chen and the interpreter discussed and resolved discrepancies and clarified culturally specific expressions before the transcripts were used for analysis. The illustrative quotations selected for manuscript reporting were subsequently translated from Mandarin into English by Yi Chen, who had experience in reading and writing English-language nursing research. Yu Liu and Jinglan Zhang, both of whom had experience in reading and writing English-language nursing research, reviewed the translated quotations against the Mandarin transcripts, and any discrepancies were resolved through discussion. Because the English translations were prepared only for manuscript reporting and were not used for coding or thematic analysis, formal English-to-Mandarin back-translation was not performed. 2.4. Data analysis Data collection and preliminary analysis were conducted concurrently. An adapted version of Colaizzi’s phenomenological method was used because it is consistent with descriptive phenomenology and emphasizes remaining close to participants’ descriptions when identifying the meanings of lived experiences [ 32 ]. The verified Mandarin transcripts of all 15 interviews served as the primary data for coding and thematic analysis. Yi Chen and Yu Liu independently read each transcript repeatedly to gain an overall understanding of the children’s pain experiences. They then identified significant statements and formulated meanings while remaining close to the children’s original accounts. The formulated meanings were compared across transcripts and organized into clusters of themes and subthemes reflecting shared experiential patterns. During theme development, linguistic and cultural influences were distinguished according to the experiential meaning and context of the children’s accounts but were recognized as potentially overlapping; relationships across themes were examined during interpretation rather than forcing the data into mutually exclusive categories. The researchers compared their coding and interpretations at each stage, and disagreements were resolved through discussion until consensus was reached. When linguistic or culturally specific meanings remained uncertain during coding and theme development, the analysts consulted the interpreter for clarification. The interpreter did not independently code transcripts or decide on the themes. An integrated description and fundamental structure of the children’s pain experiences were subsequently developed and checked against the verified Mandarin transcripts and field notes to ensure that the findings remained grounded in the data. Participant validation, the final step of Colaizzi’s original method, was not conducted because the participants were young children undergoing treatment and additional follow-up was considered potentially burdensome. Therefore, the present study used an adapted rather than the complete seven-step Colaizzi method. NVivo 12 was used to organize and manage the data. 2.5. Trustworthiness Trustworthiness was addressed through credibility, dependability, confirmability, and transferability. Credibility was supported through investigator triangulation, iterative research-team debriefing, comparison of the thematic findings with the interview accounts and field notes, and linguistic verification. For interviews involving Tibetan, the interpreter checked the Tibetan c
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