Barriers and Facilitators in oral hygiene maintenance in children undergoing chemotherapy for Acute Lymphoblastic Leukaemia: A qualitative investigation

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Despite clinical recommendations, adherence to oral hygiene practices remains inconsistent. This qualitative study explored the perceived barriers and facilitators of oral hygiene maintenance from the perspectives of caregivers and healthcare professionals involved in paediatric oncology care. Methods A qualitative descriptive design was employed in a tertiary care cancer centre in India. Four focus group discussions were conducted with caregivers (n = 44), and in-depth interviews were carried out with healthcare providers (n = 15), including paediatric oncologists, nurses, and dental professionals. Data were thematically analysed using a constant comparative approach. Trustworthiness was ensured through triangulation, reflexive journaling, and respondent validation. Results Thematic analysis revealed key barriers including chemotherapy-induced oral mucosal changes, caregiver emotional stress, limited awareness of oral infections, and resource constraints. From the provider perspective, inconsistent oral hygiene guidance during thrombocytopenia, outpatient time constraints, and caregiver disengagement were notable challenges. Facilitators included caregiver adaptation, peer and staff support, hospital-provided materials, and provider-led motivation and interdisciplinary collaboration. Conclusions This study highlights the multifaceted barriers to oral care adherence in children with ALL and identifies practical strategies for improving caregiver engagement and system-level support. Findings may inform the development of targeted oral health interventions in paediatric oncology settings. Figures Figure 1 Figure 2 Introduction Chemotherapeutic agents target rapidly dividing cells and thereby, inadvertently affect the oral mucosa and salivary glands. (Konings et al. 2005, Jasmer et al, 2020) This leads to compromised salivary immunological capacity, hence increasing the risk of local infections and oral complications. During periods of immunosuppression, inadequate oral hygiene may further predispose children to acute infections and accelerate the development of dental caries. (Ritwik et al., 2020, Li et al., 2000) These issues compound the physical, psychological, and functional burden already experienced by children undergoing cancer treatment and their families. Acute Lymphoblastic Leukemia (ALL) is the most common childhood cancer, representing nearly 30% of all paediatric malignancies. (Nigro et al. 2013) In India, leukemia accounts for 25–40% of childhood cancers, with ALL comprising 60–85% of these cases. (Jha et al., 2021, Devilli et al., 2021). Given the encouraging survival rates exceeding 85%, long-term oral health becomes increasingly relevant, as early oversight may contribute to a significant burden of dental disease in survivors. Despite the known benefits of maintaining oral hygiene, integrating consistent oral care into the standard treatment protocol of paediatric oncology patients remains a challenge. (Devilli et al. 2021, Cools et al. 2012, Pajari et al. 1995). A better understanding of challenges in oral care of these children, along with the identification of facilitators, can inform strategies to improve oral care practices during chemotherapy, thereby exerting overall systemic benefits. This study was therefore undertaken to explore the barriers and facilitators of oral hygiene maintenance among children with ALL, from the perspectives of both primary caregivers and healthcare providers in a tertiary care setting serving a culturally and socioeconomically diverse population. Methodology The present study consisted of Focus Group Discussions (FGDs) with primary caregivers and In-Depth Interviews (IDIs) of health care providers of children undergoing chemotherapy for ALL. The study was carried out in a period spanning from April through July, 2024. Sampling and Recruitment A non-probabilistic, purposive sampling method was used to recruit subjects for the present study. This method aimed to obtain a sample representative of primary caregivers of children with ALL, ranging from 0–18 years of age, who were currently undergoing either consolidation, delayed intensification, or maintenance phases of chemotherapy under the ICiCLe ALL-14 (Indian Collaborative Childhood Leukemia Group) protocol for FGDs and Oncologists, nurses and relevant support staff with minimum experience of one year in providing healthcare to children with ALL (Das et al. 2022). All the participants who were approached accepted to participate. The study was conducted after approval from the Institutional Ethical Council, (Ref no. AIIMSA00673/02.02.2024, RP-22/2024). Informed consent was obtained from all the participant. Conduct of Focus Group Discussion In-Depth Interviews Interview guides were created for both FGDs and IDIs, by a thorough literature review and input from Medical Oncologists, Paediatric Dentists, and caregivers (Annexure I). These guides were finalised after two pilot FGDs and IDIs, each. Subsequent FGDs, with groups of 6–8 participants, continued until thematic saturation was achieved, followed by two additional FGDs to confirm results. Similarly, IDIs were carried out until thematic saturation was reached, followed by three additional interviews, leading to a total of 15 interviews. Data Transcription and Translation Audiotapes and field notes were transcribed verbatim to ensure anonymity. FGDs in Hindi and other Indian dialects were first translated line by line into English by bilingual moderators, then independently translated by a second person. Field notes provided demographic details and recorded non-verbal communication. Two investigators (MR and SN) handled transcription and translation, with a third (HP) resolving any discrepancies. Data were securely managed and destroyed post-analysis. Data Analysis An iterative process involving several readings of verbatim transcripts and field notes, along with listening the audio recording was carried out for thematic content analysis. Independent transcription and translation of the recordings by two interviewers/ moderators (MR and SN). Thorough reading of the transcribed data and line by line coding was done. Initially, proto-themes that emerged from the transcripts were identified and coded, by marking them on the margins of the transcripts, to ease the sorting process. Using ‘MS Word’ software, further refinement of the themes was achieved by placing segments of similarly coded text next to each other to explore deeper meaning and context. Final themes were developed and reported with a description and related quotations to highlight their meaning. Respondent validity was maintained through feedback of adequate coverage of their feelings and thoughts, while reflexivity was maintained through peer debriefing. IDIs were conducted by a Paediatric dentist in the same hospital and this facilitated rapport building and contextual understanding; reflexive journaling was used to encounter posed potential of bias. Triangulation refers to the use of multiple methods or data sources in qualitative research to develop a comprehensive understanding of phenomena. ( 12 ) Repeat interviews were carried out with a total of six participants and transcripts were returned to five participants from the participants of FGDs in order to achieve data triangulation. Results The participating caregivers had a mean age of 34.3 years (SD = 9.15), with the majority being males (69.7%). Educational levels varied, with 27.9% of caregivers being uneducated and 23.3% having completed graduation or higher. The children receiving chemotherapy had a mean age of 7.5 years (SD = 4.7), and females comprised 62.7% of the total sample. Most children were in the consolidation phase of treatment (46.5%), and 53.5% of caregivers were primary guardians (parents). Oral hygiene practices revealed that 72.1% of children brushed once daily, though none reported brushing twice. Use of mouthwash was minimal prior to chemotherapy and increased marginally following treatment, with 39.5% reporting once-daily use and 41.7% using it infrequently. The barriers and facilitators identified were as follows. A. Barriers to Oral Hygiene Maintenance The identified barrier themes and subthemes have been listed out alongwith representative quotes in Table 1. Table 1 Barriers (themes, subthemes and supporting quotes) to maintenance of oral hygiene in patients undergoing chemotherapy for Acute Lymphoblastic Leukemia, as identified through focus group discussions with caregivers and in-depth interviews with healthcare providers. Themes Subthemes Quotes Caregivers’ Perspectives Chemotherapy-Induced Oral Mucosal Changes Mucositis and Oral Pain “She couldn’t eat because of ulcers; we are avoiding brushing since over a month because we were asked not to brush when platelets are low” (E.2) “My child used to brush regularly before disease but now denies to brush.” (B.4) “There is no family member with me and it was difficult to find accommodation Because of these stressful things, brushing was usually missed. Also, I often miss her brushing on appointment days in a hurry.” (C.5) “Doctor had asked not to do toothbrushing when his platelets are low, we were scared in starting again so he hasn’t brushed for 2 months now.” (D.5) “We have noticed black marks on teeth with night time pain sometimes, but have not visited any dentist”. (B.1) “We were referred to three hospitals before this and child has been sick for three months before coming here and oral cleaning has been compromised since then.” (A.6) “We had received a bag from one organization containing tooth brush and mouthwash, it provided relief in ulcers. But we did not have the money to buy it again.” (F.4) Taste alteration Emotional Stress of Caregivers Caregiver Challenges in Managing Oral Hygiene Immunosuppression and Increased Infection Risk Limited information on oral hygiene during immunosuppression Lack of Resources and Access Limited Access to Oral Health Care Information Several referrals before reaching a diagnosis Financial Constraints Healthcare Providers’ Perspectives Chemotherapy-Induced Oral Health Challenges Oral Conditions at Baseline "Premorbid conditions like dental caries become complicated during periods of neutropenia and sometimes lead to periapical infections and abscesses; and we cannot act upon them since the patient is thrombocytopenic as well." (IDI2) "Due to their immunosuppressive condition, these patients might have caries or mucositis. Once they are started on chemotherapy, mucositis is usually a problem." (IDI3) “Brushing is stopped during thrombocytopenia. However, it is usually not advised when to start brushing and caregivers themselves are usually not literate.” (IDI7) Difficulty in Maintaining Oral Hygiene during treatment Episodes of Thrombocytopenia Healthcare System Constraints Time Constraints in Outpatient Department "We are not able to provide awareness on oral hygiene on OPD basis due to time constraints. We give more time when any oral complication arises." (IDI7) "For explaining oral hygiene, we usually get less than 2 minutes, as the time devoted is very less (was smiling in a shy manner, removing eye contact, indicating some feeling of guilt over inability to devote time)." (IDI4) "We are only 2 nurses catering to more than 200 patients on an outpatient basis in a day, so oral hygiene instructions are often missed." (IDI8) Limited Healthcare Staff Obtaining Caregiver Engagement Parental Interest and Motivation despite providing information “Some uneducated parents are sometimes not interested in diet and oral hygiene instructions.” IDI 6 Table 2 Facilitators (themes, subthemes and supporting quotes) to maintenance of oral hygiene in patients undergoing chemotherapy for acute lymphoblastic leukemia, as identified through focus group discussions with caregivers and in-depth interviews with healthcare providers. Themes Subthemes Quotes Caregivers’ Perspectives Caregiver-Initiated Support and Adaptation Role of Caregiver Awareness in Sustained Hygiene Practices “I used to clean her gum pads after every feed. Brushing was a habit early on.” “I got information on mouthwash usage because it was once provided in the hygiene kit provided by the hospital.” (B.1) We live in a community centre where many such parents of children undergoing cancer treatment talk to each other, it gives us strength and also information on solving many disease-related problems. (C.1) “During episodes of sickness, hospital staff helps me in doing mouth wash thrice for my child, by his bedside.” (A.1) Adaptive Practices During Sickness and Debilitation Health Literacy and Peer-Shared Awareness Impact of Hospital-Based Health Promotion Community Learning and Peer Discussions Institutional Support and Healthcare Worker Involvement Structured Oral Hygiene Support from Hospital Staff Healthcare Providers’ Perspectives Provider-Led Education and Motivation Targeted Counselling to Caregivers “Caregivers are not aware to ask us themselves, but they are interested if we tell them about prevention of secondary infections” (IDI15) We advise chlorhexidine mouthwash and medicated gargles. Oral hygiene is important. Mucositis severity depends on how intense the chemotherapy is. The complications might decrease if oral hygiene is maintained. (IDI3) “These patients have severe thrombocytopenia during entire induction phase. So, we do not actively ask for stopping toothbrushing altogether. I have usually found gum bleeds to be less common” (IDI9) Importance of Early Dental Involvement in Oncology Protocols Oral care advice tailored to needs of patients Oral Care During Critical Interventions Bone marrow transplants “All children undergo a dental referral and thorough oral evaluation before bone marrow transplant surgery.” (IDI 1) Thrush and mucositis increase in severity during neutropenia. In admitted patients, we do oral hygiene for every patient and educate the caregivers about importance of the same. (IDI5) Episodes of hospitalization Interdisciplinary Collaboration and Preventive Approach Willingness for Integrated Paediatric Oncology and Dental Care “If dental care is incorporated from the very beginning, it would be beneficial for these patients. Moreover, if we are trained in identification of certain common oral conditions, they would be diagnosed early and intervention measures may be taken.” (IDI9) I) Caregivers’ perspectives 1. Chemotherapy-Induced Oral Mucosal Changes : Caregivers reported that mucositis and other oral mucosal changes (e.g., ulcerations, dry mouth) caused significant discomfort to the child. Burning sensation due to the mucositis made regular brushing and the use of mouthwashes painful, particularly for children undergoing high-intensity chemotherapy protocols. Increased sensitivity and pain in pre-morbid dental caries made the situation worse. This led to difficulty in brushing and increased reluctance from the child to comply with oral hygiene practices. 2. Emotional Stress among Caregivers : The emotional toll on caregivers, stressed by the child’s health condition, was a significant barrier to consistent oral hygiene. Caregivers struggled to prioritize oral care when managing multiple aspects of the child’s treatment regimen, mostly owing to time pressures due to the rigorous chemotherapy schedules, while dealing with other problems of limited family support, dwelling and commute. The emotional distress and exhaustion of caregivers, especially during intensive chemotherapy phases, made it difficult for them to adhere to or prioritize oral care practices, particularly for nighttime brushing. 3. Immunosuppression and Increased Infection Risk : Caregivers expressed that they were informed about children being vulnerable to infections during periods of immunosuppression. However, they were seldom informed about children being more vulnerable to oral infections, specifically and hence didn’t realise the importance of oral hygiene maintenance. Caregivers were sometimes unsure of which oral hygiene products (e.g., mouthwashes) to use and how to use them. 4. Lack of Resources and Access A recurring barrier was the lack of access to professional dental care when they first noticed oral problems before the onset of cancer. Multiple referrals before reaching a diagnosis also led to lack of attention towards oral hygiene. It is worthwhile to mention that due to competing priorities of systemic health, consistent oral health monitoring and treatment was often overlooked. The financial burden on already socio economically strained caregivers made it difficult for them to afford oral hygiene products like fluoridated toothpaste or chlorhexidine mouthwash, which are essential for children undergoing chemotherapy. II. Healthcare Providers’ Perspectives Oral adverse effects of chemotherapy and factors pertaining to healthcare systems are discussed below. 1. Chemotherapy-Induced Oral Health Challenges: The immunosuppressive effects of chemotherapy, including mucositis and increased risk of caries, make it challenging for children to maintain regular oral hygiene, especially during episodes of hospitalization or thrombocytopenia. Exacerbations of pre-existing dental conditions such as caries and infections during periods of neutropenia and thrombocytopenia were also often encountered. There was a lack of consensus and clear instructions regarding oral hygiene maintenance during thrombocytopenia. "That have severe thrombocytopenia during the entire induction phase. But we do not actively ask for stopping tooth brushing. I have usually found gum bleeds to be less common." (IDI9) "Brushing is stopped during thrombocytopenia. However, it is usually not advised when to start brushing and caregivers themselves are usually uneducated." (IDI7) 2. Healthcare System Constraints Time Constraints in Outpatient Department and understaffing were discussed. Limited time allocated to each patient in busy outpatient clinics hampers the ability to provide detailed oral care education. 3. Obtaining Caregiver Engagement Obtaining cooperation for oral hygiene from caregivers was difficult either on account of general lack of motivation among them or their emotionally frailty and exhaustion. "Many parents are not dedicated to oral care, only mothers are sometimes interested." (IDI13) "We have a morning hygiene routine for patients, but not for night. We teach the parents. If they are willing, they carry out. But these parents are very emotionally distressed and barely can carry on these practices. Some of them just sit in despair and look at their kids." (IDI6) B. Facilitators of Oral Hygiene Maintenance I) Caregivers’ perspectives 1. Caregiver-Initiated Support and Adaptation Caregiver awareness and implementation of oral hygiene measures from the early age of child usually continued over the chemotherapeutic regime. Often, with support and information from the hospital, caregivers would adjust these regimens to suit the needs of the child during periods of systemic compromise such as episodes of hospitalization and occurrence of oral adverse effects of therapy. 2. Health Literacy and Peer-Shared Awareness Providing oral health related material such as mouthwashes from the hospital not only helped the caregivers to use these during episodes of mucositis but also provided them awareness on usage and incorporation into regular practice. Similarly, discussions with other caregivers in the hospital or other community dwelling sites also facilitated exchange of oral health related information. 3. Institutional Support and Healthcare Worker Involvement Structured oral hygiene support from hospital staff for in patients, especially the ones who were bed ridden helped combat several oral adverse effects of treatment. This support included assistance to caregivers in carrying out brushing and rinsing bed side and providing mouthwashes to the patients and teaching the caregivers the importance of oral health and prevention of infection. II. Healthcare Providers’ Perspectives 1. Provider-Led Education and Motivation Healthcare providers regularly provided guidance to caregivers during episodes of mucositis in children on outpatient basis as well. Many caregivers also provided guidance for usage of soft bristled toothpastes and mouthwashes, especially to patients with thrombocytopenia. 2. Oral Care During Critical Interventions The patient requiring bone marrow transplant always underwent a through dental examination by Paediatric Dentists and any treatment required was undertaken. Oral hygiene maintenance was carried out by assigned healthcare professionals for patients in the intensive care units. 3. Interdisciplinary Collaboration and Preventive Approach All healthcare providers realised the importance of oral and dental care in children with Leukemia and many Oncology residents expressed the willingness for an integrated Paediatric-Oncology-Dental care for these children. Poor oral health in children with ALL often stems from insufficient public awareness about oral hygiene. Educating caregivers and emphasizing on oral health at primary healthcare centre level and enhancing local diagnostic services could improve management of oral health Increasing staff involvement in preventing oral complications, enhancing collaboration, providing training for early detection, and using audio-visual educational aids are crucial. Establishing guidelines for chemotherapy patients and supporting caregivers are essential. A detailed actionable Responses and Implementation strategies tabulation of has been provided (Table 3). Discussion This qualitative study explored the multifactorial challenges and supportive factors influencing oral hygiene maintenance in children undergoing chemotherapy for Acute Lymphoblastic Leukemia (ALL), drawing from the perspectives of both caregivers and healthcare providers. The findings reveal a complex interplay between chemotherapy-induced oral side effects, emotional and logistical burdens on caregivers, and systemic healthcare limitations, while also identifying practical avenues to improve oral care practices in this vulnerable population. Using grounded theory principles, the study inductively developed themes that aligned well with the constructs of the Health Belief Model, particularly emphasizing perceived barriers, perceived benefits, and cues to action that shape caregiver behaviour. (Charmaz et al. 2006, Glanz & Bishop, 2010) Chemotherapy-induced oral changes, including pain and thrombocytopenia, often led to cessation of brushing due to fear of bleeding. These ulcerations, termed mucosal barrier injury (MBI), are common in hematological malignancies and affect up to 100% of transplant recipients. MBI, marked by pain, erythema, edema, pseudomembranes, and reduced saliva, significantly hinders oral hygiene. (Corrozzo et al. 2019, Bijlivens et al. 2000) Its severity correlates with neutropenic nadirs and fever (Velden et al. 2014). Moreover, children with ALL are more prone to gingivitis and dental caries, further complicating oral care (Wong et al. 2014, Angst et al. 2020). Chemotherapy-related oral changes such as mucositis, pain, and thrombocytopenia were identified as major deterrents to maintaining oral hygiene. In many cases, these challenges led caregivers to discontinue toothbrushing due to the child’s discomfort or fear of triggering bleeding. Emotional stress, competing demands, and a lack of sufficient support further contributed to deprioritizing oral care routines. Additionally, limited oral health literacy and structural barriers such as time constraints during hospital visits often resulted in missed opportunities for preventive oral health counselling. Despite these challenges, several enablers emerged. Many caregivers showed adaptability and initiative in maintaining oral hygiene, especially when equipped with support from peers, resources provided by the hospital, and direct counselling from healthcare providers. Interestingly, a deeper analysis of caregiver narratives revealed that while formal education contributed positively to oral hygiene efforts, intrinsic motivation played a more decisive role. For instance, one mother with a graduate-level education described her detailed oral hygiene practices from infancy, while another caregiver with a PhD admitted to neglecting brushing during illness. In contrast, an uneducated mother emphasized the importance of cleanliness and ensured her child brushed regularly, stating simply, “Cleanliness is as important as medicines.” These findings suggest that with adequate motivational guidance, equitable oral care practices can be fostered regardless of educational background. However, caregivers with no reading or writing ability faced particular challenges in interpreting instructions. This is evident from one caregiver’s response during a discussion on mouthwashes provided by the hospital: “I am not sure if I have received such thing. There is a black kind of liquid in a plastic bottle, I do not know if it is some oil for putting on hair. I have kept it with her mother; she also didn’t understand. So, it is kept unopened.” Such narratives highlight the importance of clear, pictorial or verbal communication adapted to literacy levels. Adolescents’ oral care was often assumed to be self-managed, leading to oversight. A father admitted, “I do not see if he brushes every day, but he mostly takes care of it himself. We brought him here 1 month after sickness, and might not have brushed then,” with a shrug suggesting minimal awareness of its importance. This underlines the need for active supervision and reinforcement even in older children. A major barrier that emerged from interactions with both caregivers and healthcare providers was the lack of consistent information during episodes of thrombocytopenia. Many caregivers stopped brushing out of concern for bleeding but received no clear guidance on when to resume, resulting in poor oral hygiene for prolonged periods. As these children frequently experienced recurrent thrombocytopenia, the absence of coordinated advice—often stemming from unclear division of responsibilities among providers—left caregivers uncertain and hesitant. In summary, the findings emphasize the need for integrated oral health support within paediatric oncology care, combining clear communication, motivational counselling, and contextual sensitivity to both caregiver capabilities and the child’s treatment trajectory. Strengths and Limitations: A major strength of this study is the inclusion of both caregiver and provider perspectives, offering a comprehensive view of barriers and facilitators. Triangulation methods were incorporated at every step. Respondent validation reinforced the credibility of the findings. However, the study was conducted at a single tertiary care centre, potentially limiting generalizability. Future research could expand to multiple centres and explore interventions designed based on the identified facilitators. Conclusion Oral hygiene maintenance in children undergoing chemotherapy for ALL is a complex issue influenced by treatment side effects, caregiver challenges, healthcare system limitations and resource constraints. However, targeted education, peer support, structured institutional assistance, and interdisciplinary care integration are key for improving oral health outcomes in these children. Systematic efforts to embed oral hygiene promotion within paediatric oncology care pathways are crucial to enhance both immediate and long-term quality of life for childhood cancer survivors. Declarations Conflict of Interest: None References Konings AW, Coppes RP, Vissink A. On the mechanism of salivary gland radiosensitivity. Int J Radiat Oncol Biol Phys. 2005 Jul 15;62(4):1187-94. Erratum in: Int J Radiat Oncol Biol Phys. 2006 Jan 1;64(1):330. Jasmer KJ, Gilman KE, Muñoz Forti K, Weisman GA, Limesand KH. Radiation-Induced Salivary Gland Dysfunction: Mechanisms, Therapeutics and Future Directions. J Clin Med. 2020 Dec 18;9(12):4095. Ritwik P, Chrisentery-Singleton TE. Oral and dental considerations in pediatric cancers. Cancer Metastasis Rev. 2020 Mar;39(1):43-53. Li X, Kolltveit KM, Tronstad L, Olsen I. Systemic diseases caused by oral infection. Clin Microbiol Rev. 2000 Oct;13(4):547-58. Lo Nigro L. Biology of childhood acute lymphoblastic leukemia. J Pediatr Hematol Oncol. 2013 May;35(4):245-52. Jha, Shweta; Kumar, Dinesh. Acute Lymphoblastic Leukemia in Indian Children at a Tertiary Care Center: A Multiparametric Study with Prognostic Implications. National Journal of Clinical Anatomy 10(4):p 214-219, Oct–Dec 2021 Devilli L, Garonzi C, Balter R, Bonetti E, Chinello M, Zaccaron A, Vitale V, De Bortoli M, Caddeo G, Baretta V, Tridello G, Cesaro S. Long-term and quality of survival in patients treated for acute lymphoblastic leukemia during the pediatric age. Hematol Rep. 2021 Mar 5;13(1):8847. Cools J. Improvements in the survival of children and adolescents with acute lymphoblastic leukemia. Haematologica. 2012 May;97(5):635. doi: 10.3324/haematol.2012.068361. Pajari U, Ollila P, Lanning M. Incidence of dental caries in children with acute lymphoblastic leukemia is related to the therapy used. ASDC J Dent Child. 1995 Sep-Oct;62(5):349-52. Das N, et al. Protocol for ICiCLe-ALL-14 (InPOG-ALL-15-01): a prospective, risk stratified, randomised, multicentre, open label, controlled therapeutic trial for newly diagnosed childhood acute lymphoblastic leukaemia in India. Trials. 2022 Jan 31;23(1):102. doi: 10.1186/s13063-022-06033-1. Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. Thousand Oaks, CA: SAGE, 2006. Glanz K, Bishop DB. The role of behavioral science theory in development and implementation of public health interventions. Annu Rev Public Health. 2010;31:399-418. doi: 10.1146/annurev.publhealth.012809.103604. PMID: 20070207 Carrozzo M, Eriksen JG, Bensadoun RJ, Boers-Doets CB, Lalla RV, Peterson DE. Oral Mucosal Injury Caused by Targeted Cancer Therapies. J Natl Cancer Inst Monogr. 2019 Aug 1;2019(53):lgz012. Blijlevens NM, Donnelly JP, De Pauw BE. Mucosal barrier injury: biology, pathology, clinical counterparts and consequences of intensive treatment for haematological malignancy: an overview. Bone Marrow Transplant. 2000 Jun;25(12):1269-78. Anirudhan D, et al. Etiology and outcome of oral mucosal lesions in children on chemotherapy for acute lymphoblastic leukemia. Indian Pediatr. 2008 Jan;45(1):47-51. van der Velden WJ, Herbers AH, Netea MG, Blijlevens NM. Mucosal barrier injury, fever and infection in neutropenic patients with cancer: introducing the paradigm febrile mucositis. Br J Haematol. 2014 Nov;167(4):441-52. Wong HM. Oral complications and management strategies for patients undergoing cancer therapy. ScientificWorldJournal. 2014 Jan 8;2014:581795. Angst PDM, Maier J, Dos Santos Nogueira R, Manso IS, Tedesco TK. Oral health status of patients with leukemia: a systematic review with meta-analysis. Arch Oral Biol. 2020 Dec;120:104948. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 03 Aug, 2025 Reviews received at journal 14 Jul, 2025 Reviews received at journal 08 Jul, 2025 Reviewers agreed at journal 08 Jul, 2025 Reviewers agreed at journal 23 Jun, 2025 Reviewers invited by journal 12 Jun, 2025 Editor assigned by journal 12 Jun, 2025 Submission checks completed at journal 12 Jun, 2025 First submitted to journal 10 Jun, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Mathur","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA+ElEQVRIiWNgGAWjYDACZoYEMG3AwMD+4wOQwcZOpBYJoBYGyRkgLcxEWgbWIs0DMQQ/MDjO8PAzb45dnblE7gNjm1/b5PmYGRg/fMzBo+UwQ7I077ZkCcsZ6QbJuX23DduYGZglZ27DrUWymSEBqIVZwuBGGsPh3J7bjEAtbMy8+LUk/+bdVg/Swths2XPbnqAWfmaGNKAth0FamJkZftxOJEqL5dxtxyU3nHnGxtjbcDu5jZmxGa9f2PjPJN94u62a3+B4GhvDjz+3bee3Nx/88BGPFgYGngQmHhibsQ1MNuBTDwTsBxh/wDl/CCgeBaNgFIyCEQkAnBJKEXUlAjEAAAAASUVORK5CYII=","orcid":"","institution":"All India Institute of Medical Sciences","correspondingAuthor":true,"prefix":"","firstName":"Vijay","middleName":"Prakash","lastName":"Mathur","suffix":""},{"id":470420191,"identity":"3e150e91-72eb-4c87-8aca-87309288e0f4","order_by":2,"name":"Sameer Bakshi","email":"","orcid":"","institution":"All India Institute of Medical 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Sciences","correspondingAuthor":false,"prefix":"","firstName":"Kalpana","middleName":"","lastName":"Bansal","suffix":""},{"id":470420195,"identity":"3e89e604-f243-4f11-b6b7-525fefb2e668","order_by":6,"name":"Morankar Rahul","email":"","orcid":"","institution":"All India Institute of Medical Sciences","correspondingAuthor":false,"prefix":"","firstName":"Morankar","middleName":"","lastName":"Rahul","suffix":""},{"id":470420196,"identity":"c212e910-aa03-44a5-9757-c4f36b69610a","order_by":7,"name":"Nitesh Tewari","email":"","orcid":"","institution":"All India Institute of Medical Sciences","correspondingAuthor":false,"prefix":"","firstName":"Nitesh","middleName":"","lastName":"Tewari","suffix":""},{"id":470420197,"identity":"97c1b3af-7e1c-4235-8221-457323892ca9","order_by":8,"name":"Nidhi Sharawat","email":"","orcid":"","institution":"All India Institute of Medical Sciences","correspondingAuthor":false,"prefix":"","firstName":"Nidhi","middleName":"","lastName":"Sharawat","suffix":""}],"badges":[],"createdAt":"2025-06-10 17:08:15","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6865282/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6865282/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":84781192,"identity":"8726135a-0545-46ac-865b-32ca07ec504f","added_by":"auto","created_at":"2025-06-17 09:32:53","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":182715,"visible":true,"origin":"","legend":"\u003cp\u003eA composite matrix on barriers in maintenance of oral hygiene in children undergoing chemotherapy for ALL, depicting the perspectives of caregivers and healthcare providers and their common themes.\u003c/p\u003e","description":"","filename":"floatimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-6865282/v1/ce0c77c8ccdd9a23723064f4.png"},{"id":84778479,"identity":"e803e75f-8446-4c46-871f-34e6b3d658dd","added_by":"auto","created_at":"2025-06-17 09:16:53","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":177215,"visible":true,"origin":"","legend":"\u003cp\u003eA composite matrix on facilitators in maintenance of oral hygiene in children undergoing chemotherapy for ALL, depicting the perspectives of caregivers and healthcare providers and their common themes.\u003c/p\u003e","description":"","filename":"floatimage2.png","url":"https://assets-eu.researchsquare.com/files/rs-6865282/v1/bd636ff0b2d68a8a61e09c41.png"},{"id":84782125,"identity":"d3e929d2-3c1a-4095-8c3c-8d1b661627f9","added_by":"auto","created_at":"2025-06-17 09:40:58","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1060012,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6865282/v1/80d838a8-370b-4b67-98ad-19c75693f288.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003eBarriers and Facilitators in oral hygiene maintenance in children undergoing chemotherapy for Acute Lymphoblastic Leukaemia: A qualitative investigation\u003c/p\u003e","fulltext":[{"header":"Introduction","content":"\u003cp\u003eChemotherapeutic agents target rapidly dividing cells and thereby, inadvertently affect the oral mucosa and salivary glands. (Konings et al. 2005, Jasmer et al, 2020) This leads to compromised salivary immunological capacity, hence increasing the risk of local infections and oral complications. During periods of immunosuppression, inadequate oral hygiene may further predispose children to acute infections and accelerate the development of dental caries. (Ritwik et al., 2020, Li et al., 2000) These issues compound the physical, psychological, and functional burden already experienced by children undergoing cancer treatment and their families.\u003c/p\u003e \u003cp\u003eAcute Lymphoblastic Leukemia (ALL) is the most common childhood cancer, representing nearly 30% of all paediatric malignancies. (Nigro et al. 2013) In India, leukemia accounts for 25\u0026ndash;40% of childhood cancers, with ALL comprising 60\u0026ndash;85% of these cases. (Jha et al., 2021, Devilli et al., 2021). Given the encouraging survival rates exceeding 85%, long-term oral health becomes increasingly relevant, as early oversight may contribute to a significant burden of dental disease in survivors. Despite the known benefits of maintaining oral hygiene, integrating consistent oral care into the standard treatment protocol of paediatric oncology patients remains a challenge. (Devilli et al. 2021, Cools et al. 2012, Pajari et al. 1995). A better understanding of challenges in oral care of these children, along with the identification of facilitators, can inform strategies to improve oral care practices during chemotherapy, thereby exerting overall systemic benefits.\u003c/p\u003e \u003cp\u003eThis study was therefore undertaken to explore the barriers and facilitators of oral hygiene maintenance among children with ALL, from the perspectives of both primary caregivers and healthcare providers in a tertiary care setting serving a culturally and socioeconomically diverse population.\u003c/p\u003e"},{"header":"Methodology","content":"\u003cp\u003eThe present study consisted of Focus Group Discussions (FGDs) with primary caregivers and In-Depth Interviews (IDIs) of health care providers of children undergoing chemotherapy for ALL. The study was carried out in a period spanning from April through July, 2024.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eSampling and Recruitment\u003c/h2\u003e \u003cp\u003eA non-probabilistic, purposive sampling method was used to recruit subjects for the present study. This method aimed to obtain a sample representative of primary caregivers of children with ALL, ranging from 0\u0026ndash;18 years of age, who were currently undergoing either consolidation, delayed intensification, or maintenance phases of chemotherapy under the ICiCLe ALL-14 (Indian Collaborative Childhood Leukemia Group) protocol for FGDs and Oncologists, nurses and relevant support staff with minimum experience of one year in providing healthcare to children with ALL (Das et al. 2022). All the participants who were approached accepted to participate. The study was conducted after approval from the Institutional Ethical Council, (Ref no. AIIMSA00673/02.02.2024, RP-22/2024). Informed consent was obtained from all the participant.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eConduct of Focus Group Discussion In-Depth Interviews\u003c/h3\u003e\n\u003cp\u003eInterview guides were created for both FGDs and IDIs, by a thorough literature review and input from Medical Oncologists, Paediatric Dentists, and caregivers (Annexure I). These guides were finalised after two pilot FGDs and IDIs, each. Subsequent FGDs, with groups of 6\u0026ndash;8 participants, continued until thematic saturation was achieved, followed by two additional FGDs to confirm results. Similarly, IDIs were carried out until thematic saturation was reached, followed by three additional interviews, leading to a total of 15 interviews.\u003c/p\u003e\n\u003ch3\u003eData Transcription and Translation\u003c/h3\u003e\n\u003cp\u003eAudiotapes and field notes were transcribed verbatim to ensure anonymity. FGDs in Hindi and other Indian dialects were first translated line by line into English by bilingual moderators, then independently translated by a second person. Field notes provided demographic details and recorded non-verbal communication. Two investigators (MR and SN) handled transcription and translation, with a third (HP) resolving any discrepancies. Data were securely managed and destroyed post-analysis.\u003c/p\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eAn iterative process involving several readings of verbatim transcripts and field notes, along with listening the audio recording was carried out for thematic content analysis. Independent transcription and translation of the recordings by two interviewers/ moderators (MR and SN). Thorough reading of the transcribed data and line by line coding was done. Initially, proto-themes that emerged from the transcripts were identified and coded, by marking them on the margins of the transcripts, to ease the sorting process. Using \u0026lsquo;MS Word\u0026rsquo; software, further refinement of the themes was achieved by placing segments of similarly coded text next to each other to explore deeper meaning and context. Final themes were developed and reported with a description and related quotations to highlight their meaning.\u003c/p\u003e \u003cp\u003eRespondent validity was maintained through feedback of adequate coverage of their feelings and thoughts, while reflexivity was maintained through peer debriefing. IDIs were conducted by a Paediatric dentist in the same hospital and this facilitated rapport building and contextual understanding; reflexive journaling was used to encounter posed potential of bias. Triangulation refers to the use of multiple methods or data sources in qualitative research to develop a comprehensive understanding of phenomena. \u003csup\u003e(\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e)\u003c/sup\u003e Repeat interviews were carried out with a total of six participants and transcripts were returned to five participants from the participants of FGDs in order to achieve data triangulation.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eThe participating caregivers had a mean age of 34.3 years (SD = 9.15), with the majority being males (69.7%). Educational levels varied, with 27.9% of caregivers being uneducated and 23.3% having completed graduation or higher. The children receiving chemotherapy had a mean age of 7.5 years (SD = 4.7), and females comprised 62.7% of the total sample. Most children were in the consolidation phase of treatment (46.5%), and 53.5% of caregivers were primary guardians (parents). Oral hygiene practices revealed that 72.1% of children brushed once daily, though none reported brushing twice. Use of mouthwash was minimal prior to chemotherapy and increased marginally following treatment, with 39.5% reporting once-daily use and 41.7% using it infrequently. The barriers and facilitators identified were as follows.\u003c/p\u003e\n\u003cdiv id=\"Sec8\"\u003e\n \u003ch2\u003eA. Barriers to Oral Hygiene Maintenance\u003c/h2\u003e\n \u003cdiv\u003e\n \u003cp\u003eThe identified barrier themes and subthemes have been listed out alongwith representative quotes in Table 1.\u003c/p\u003e\n \u003c/div\u003e\n \u003cdiv\u003e\n \u003ctable id=\"Tab1\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv\u003eTable 1\u003c/div\u003e\n \u003cdiv\u003e\n \u003cp\u003eBarriers (themes, subthemes and supporting quotes) to maintenance of oral hygiene in patients undergoing chemotherapy for Acute Lymphoblastic Leukemia, as identified through focus group discussions with caregivers and in-depth interviews with healthcare providers.\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eThemes\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eSubthemes\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eQuotes\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003cth align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003eCaregivers’ Perspectives\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" rowspan=\"2\"\u003e\n \u003cp\u003eChemotherapy-Induced Oral Mucosal Changes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eMucositis and Oral Pain\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" rowspan=\"7\"\u003e\n \u003cp\u003e\u003cem\u003e“She couldn’t eat because of ulcers; we are avoiding brushing since over a month because we were asked not to brush when platelets are low” (E.2)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e“My child used to brush regularly before disease but now denies to brush.” (B.4)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e“There is no family member with me and it was difficult to find accommodation Because of these stressful things, brushing was usually missed. Also, I often miss her brushing on appointment days in a hurry.” (C.5)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e“Doctor had asked not to do toothbrushing when his platelets are low, we were scared in starting again so he hasn’t brushed for 2 months now.” (D.5)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e“We have noticed black marks on teeth with night time pain sometimes, but have not visited any dentist”. (B.1)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e“We were referred to three hospitals before this and child has been sick for three months before coming here and oral cleaning has been compromised since then.” (A.6)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e“We had received a bag from one organization containing tooth brush and mouthwash, it provided relief in ulcers. But we did not have the money to buy it again.” (F.4)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eTaste alteration\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eEmotional Stress of Caregivers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eCaregiver Challenges in Managing Oral Hygiene\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eImmunosuppression and Increased Infection Risk\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eLimited information on oral hygiene during immunosuppression\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" rowspan=\"3\"\u003e\n \u003cp\u003eLack of Resources and Access\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eLimited Access to Oral Health Care Information\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eSeveral referrals before reaching a diagnosis\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eFinancial Constraints\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003e\u003cstrong\u003eHealthcare Providers’ Perspectives\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\" rowspan=\"3\"\u003e\n \u003cp\u003eChemotherapy-Induced Oral Health Challenges\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOral Conditions at Baseline\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" rowspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e\"Premorbid conditions like dental caries become complicated during periods of neutropenia and sometimes lead to periapical infections and abscesses; and we cannot act upon them since the patient is thrombocytopenic as well.\" (IDI2)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\"Due to their immunosuppressive condition, these patients might have caries or mucositis. Once they are started on chemotherapy, mucositis is usually a problem.\" (IDI3)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e“Brushing is stopped during thrombocytopenia. However, it is usually not advised when to start brushing and caregivers themselves are usually not literate.” (IDI7)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eDifficulty in Maintaining Oral Hygiene during treatment\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eEpisodes of Thrombocytopenia\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\" rowspan=\"2\"\u003e\n \u003cp\u003eHealthcare System Constraints\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eTime Constraints in Outpatient Department\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" rowspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e\"We are not able to provide awareness on oral hygiene on OPD basis due to time constraints. We give more time when any oral complication arises.\" (IDI7)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\"For explaining oral hygiene, we usually get less than 2 minutes, as the time devoted is very less (was smiling in a shy manner, removing eye contact, indicating some feeling of guilt over inability to devote time).\" (IDI4)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\"We are only 2 nurses catering to more than 200 patients on an outpatient basis in a day, so oral hygiene instructions are often missed.\" (IDI8)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eLimited Healthcare Staff\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eObtaining Caregiver Engagement\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eParental Interest and Motivation despite providing information\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e“Some uneducated parents are sometimes not interested in diet and oral hygiene instructions.”\u003c/em\u003e IDI 6\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003c/div\u003e\n \u003cdiv\u003e\n \u003ctable id=\"Tab2\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv\u003eTable 2\u003c/div\u003e\n \u003cdiv\u003e\n \u003cp\u003eFacilitators (themes, subthemes and supporting quotes) to maintenance of oral hygiene in patients undergoing chemotherapy for acute lymphoblastic leukemia, as identified through focus group discussions with caregivers and in-depth interviews with healthcare providers.\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eThemes\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eSubthemes\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eQuotes\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003cth align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003eCaregivers’ Perspectives\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" rowspan=\"2\"\u003e\n \u003cp\u003eCaregiver-Initiated Support and Adaptation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eRole of Caregiver Awareness in Sustained Hygiene Practices\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" rowspan=\"5\"\u003e\n \u003cp\u003e\u003cem\u003e“I used to clean her gum pads after every feed. Brushing was a habit early on.”\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e“I got information on mouthwash usage because it was once provided in the hygiene kit provided by the hospital.” (B.1)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eWe live in a community centre where many such parents of children undergoing cancer treatment talk to each other, it gives us strength and also information on solving many disease-related problems. (C.1)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e“During episodes of sickness, hospital staff helps me in doing mouth wash thrice for my child, by his bedside.” (A.1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eAdaptive Practices During Sickness and Debilitation\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" rowspan=\"2\"\u003e\n \u003cp\u003eHealth Literacy and Peer-Shared Awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eImpact of Hospital-Based Health Promotion\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eCommunity Learning and Peer Discussions\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eInstitutional Support and Healthcare Worker Involvement\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eStructured Oral Hygiene Support from Hospital Staff\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003e\u003cstrong\u003eHealthcare Providers’ Perspectives\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\" rowspan=\"3\"\u003e\n \u003cp\u003eProvider-Led Education and Motivation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eTargeted Counselling to Caregivers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" rowspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e“Caregivers are not aware to ask us themselves, but they are interested if we tell them about prevention of secondary infections” (IDI15)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eWe advise chlorhexidine mouthwash and medicated gargles. Oral hygiene is important. Mucositis severity depends on how intense the chemotherapy is. The complications might decrease if oral hygiene is maintained. (IDI3)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e“These patients have severe thrombocytopenia during entire induction phase. So, we do not actively ask for stopping toothbrushing altogether. I have usually found gum bleeds to be less common” (IDI9)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eImportance of Early Dental Involvement in Oncology Protocols\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOral care advice tailored to needs of patients\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\" rowspan=\"2\"\u003e\n \u003cp\u003eOral Care During Critical Interventions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eBone marrow transplants\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" rowspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e“All children undergo a dental referral and thorough oral evaluation before bone marrow transplant surgery.” (IDI 1)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eThrush and mucositis increase in severity during neutropenia. In admitted patients, we do oral hygiene for every patient and educate the caregivers about importance of the same. (IDI5)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eEpisodes of hospitalization\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eInterdisciplinary Collaboration and Preventive Approach\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWillingness for Integrated Paediatric Oncology and Dental Care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e“If dental care is incorporated from the very beginning, it would be beneficial for these patients. Moreover, if we are trained in identification of certain common oral conditions, they would be diagnosed early and intervention measures may be taken.” (IDI9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eI) Caregivers’ perspectives\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e1. \u003cem\u003eChemotherapy-Induced Oral Mucosal Changes\u003c/em\u003e: Caregivers reported that mucositis and other oral mucosal changes (e.g., ulcerations, dry mouth) caused significant discomfort to the child. Burning sensation due to the mucositis made regular brushing and the use of mouthwashes painful, particularly for children undergoing high-intensity chemotherapy protocols. Increased sensitivity and pain in pre-morbid dental caries made the situation worse. This led to difficulty in brushing and increased reluctance from the child to comply with oral hygiene practices.\u003c/p\u003e\n \u003cp\u003e2. \u003cem\u003eEmotional Stress among Caregivers\u003c/em\u003e: The emotional toll on caregivers, stressed by the child’s health condition, was a significant barrier to consistent oral hygiene. Caregivers struggled to prioritize oral care when managing multiple aspects of the child’s treatment regimen, mostly owing to time pressures due to the rigorous chemotherapy schedules, while dealing with other problems of limited family support, dwelling and commute. The emotional distress and exhaustion of caregivers, especially during intensive chemotherapy phases, made it difficult for them to adhere to or prioritize oral care practices, particularly for nighttime brushing.\u003c/p\u003e\n \u003cp\u003e3. \u003cem\u003eImmunosuppression and Increased Infection Risk\u003c/em\u003e: Caregivers expressed that they were informed about children being vulnerable to infections during periods of immunosuppression. However, they were seldom informed about children being more vulnerable to oral infections, specifically and hence didn’t realise the importance of oral hygiene maintenance. Caregivers were sometimes unsure of which oral hygiene products (e.g., mouthwashes) to use and how to use them.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e4. Lack of Resources and Access\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eA recurring barrier was the lack of access to professional dental care when they first noticed oral problems before the onset of cancer. Multiple referrals before reaching a diagnosis also led to lack of attention towards oral hygiene. It is worthwhile to mention that due to competing priorities of systemic health, consistent oral health monitoring and treatment was often overlooked. The financial burden on already socio economically strained caregivers made it difficult for them to afford oral hygiene products like fluoridated toothpaste or chlorhexidine mouthwash, which are essential for children undergoing chemotherapy.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eII.\u0026nbsp;\u003c/strong\u003e\u003cstrong\u003eHealthcare Providers’ Perspectives\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eOral adverse effects of chemotherapy and factors pertaining to healthcare systems are discussed below.\u003c/p\u003e\n \u003cp\u003e1. \u003cem\u003eChemotherapy-Induced Oral Health Challenges:\u0026nbsp;\u003c/em\u003eThe immunosuppressive effects of chemotherapy, including mucositis and increased risk of caries, make it challenging for children to maintain regular oral hygiene, especially during episodes of hospitalization or thrombocytopenia. Exacerbations of pre-existing dental conditions such as caries and infections during periods of neutropenia and thrombocytopenia were also often encountered. There was a lack of consensus and clear instructions regarding oral hygiene maintenance during thrombocytopenia.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\"That have severe thrombocytopenia during the entire induction phase. But we do not actively ask for stopping tooth brushing. I have usually found gum bleeds to be less common.\"\u003c/em\u003e (IDI9)\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\"Brushing is stopped during thrombocytopenia. However, it is usually not advised when to start brushing and caregivers themselves are usually uneducated.\"\u003c/em\u003e (IDI7)\u003c/p\u003e\n \u003cp\u003e2. Healthcare System Constraints\u003c/p\u003e\n \u003cp\u003eTime Constraints in Outpatient Department and understaffing were discussed. Limited time allocated to each patient in busy outpatient clinics hampers the ability to provide detailed oral care education.\u003c/p\u003e\n \u003cp\u003e3. Obtaining Caregiver Engagement\u003c/p\u003e\n \u003cp\u003eObtaining cooperation for oral hygiene from caregivers was difficult either on account of general lack of motivation among them or their emotionally frailty and exhaustion.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\"Many parents are not dedicated to oral care, only mothers are sometimes interested.\"\u003c/em\u003e (IDI13)\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\"We have a morning hygiene routine for patients, but not for night. We teach the parents. If they are willing, they carry out. But these parents are very emotionally distressed and barely can carry on these practices. Some of them just sit in despair and look at their kids.\"\u003c/em\u003e (IDI6)\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eB. Facilitators of Oral Hygiene Maintenance\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eI) Caregivers’ perspectives\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e1. Caregiver-Initiated Support and Adaptation\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eCaregiver awareness and implementation of oral hygiene measures from the early age of child usually continued over the chemotherapeutic regime. Often, with support and information from the hospital, caregivers would adjust these regimens to suit the needs of the child during periods of systemic compromise such as episodes of hospitalization and occurrence of oral adverse effects of therapy.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e2. Health Literacy and Peer-Shared Awareness\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eProviding oral health related material such as mouthwashes from the hospital not only helped the caregivers to use these during episodes of mucositis but also provided them awareness on usage and incorporation into regular practice. Similarly, discussions with other caregivers in the hospital or other community dwelling sites also facilitated exchange of oral health related information.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e3. Institutional Support and Healthcare Worker Involvement\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eStructured oral hygiene support from hospital staff for in patients, especially the ones who were bed ridden helped combat several oral adverse effects of treatment. This support included assistance to caregivers in carrying out brushing and rinsing bed side and providing mouthwashes to the patients and teaching the caregivers the importance of oral health and prevention of infection.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eII.\u0026nbsp;\u003c/strong\u003e\u003cstrong\u003eHealthcare Providers’ Perspectives\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e1. Provider-Led Education and Motivation\u003c/p\u003e\n \u003cp\u003eHealthcare providers regularly provided guidance to caregivers during episodes of mucositis in children on outpatient basis as well. Many caregivers also provided guidance for usage of soft bristled toothpastes and mouthwashes, especially to patients with thrombocytopenia.\u003c/p\u003e\n \u003cp\u003e2. Oral Care During Critical Interventions\u003c/p\u003e\n \u003cp\u003eThe patient requiring bone marrow transplant always underwent a through dental examination by Paediatric Dentists and any treatment required was undertaken. Oral hygiene maintenance was carried out by assigned healthcare professionals for patients in the intensive care units.\u003c/p\u003e\n \u003cp\u003e3. Interdisciplinary Collaboration and Preventive Approach\u003c/p\u003e\n \u003cp\u003eAll healthcare providers realised the importance of oral and dental care in children with Leukemia and many Oncology residents expressed the willingness for an integrated Paediatric-Oncology-Dental care for these children.\u003c/p\u003e\n \u003cp\u003ePoor oral health in children with ALL often stems from insufficient public awareness about oral hygiene. Educating caregivers and emphasizing on oral health at primary healthcare centre level and enhancing local diagnostic services could improve management of oral health Increasing staff involvement in preventing oral complications, enhancing collaboration, providing training for early detection, and using audio-visual educational aids are crucial. Establishing guidelines for chemotherapy patients and supporting caregivers are essential. A detailed actionable Responses and Implementation strategies tabulation of has been provided (Table 3).\u003c/p\u003e\n\u003c/div\u003e\n"},{"header":"Discussion","content":"\u003cp\u003eThis qualitative study explored the multifactorial challenges and supportive factors influencing oral hygiene maintenance in children undergoing chemotherapy for Acute Lymphoblastic Leukemia (ALL), drawing from the perspectives of both caregivers and healthcare providers. The findings reveal a complex interplay between chemotherapy-induced oral side effects, emotional and logistical burdens on caregivers, and systemic healthcare limitations, while also identifying practical avenues to improve oral care practices in this vulnerable population.\u003c/p\u003e \u003cp\u003eUsing grounded theory principles, the study inductively developed themes that aligned well with the constructs of the Health Belief Model, particularly emphasizing perceived barriers, perceived benefits, and cues to action that shape caregiver behaviour. (Charmaz et al. 2006, Glanz \u0026amp; Bishop, 2010)\u003c/p\u003e \u003cp\u003eChemotherapy-induced oral changes, including pain and thrombocytopenia, often led to cessation of brushing due to fear of bleeding. These ulcerations, termed mucosal barrier injury (MBI), are common in hematological malignancies and affect up to 100% of transplant recipients. MBI, marked by pain, erythema, edema, pseudomembranes, and reduced saliva, significantly hinders oral hygiene. (Corrozzo et al. 2019, Bijlivens et al. 2000) Its severity correlates with neutropenic nadirs and fever (Velden et al. 2014). Moreover, children with ALL are more prone to gingivitis and dental caries, further complicating oral care (Wong et al. 2014, Angst et al. 2020).\u003c/p\u003e \u003cp\u003e Chemotherapy-related oral changes such as mucositis, pain, and thrombocytopenia were identified as major deterrents to maintaining oral hygiene. In many cases, these challenges led caregivers to discontinue toothbrushing due to the child\u0026rsquo;s discomfort or fear of triggering bleeding. Emotional stress, competing demands, and a lack of sufficient support further contributed to deprioritizing oral care routines. Additionally, limited oral health literacy and structural barriers such as time constraints during hospital visits often resulted in missed opportunities for preventive oral health counselling.\u003c/p\u003e \u003cp\u003eDespite these challenges, several enablers emerged. Many caregivers showed adaptability and initiative in maintaining oral hygiene, especially when equipped with support from peers, resources provided by the hospital, and direct counselling from healthcare providers. Interestingly, a deeper analysis of caregiver narratives revealed that while formal education contributed positively to oral hygiene efforts, intrinsic motivation played a more decisive role. For instance, one mother with a graduate-level education described her detailed oral hygiene practices from infancy, while another caregiver with a PhD admitted to neglecting brushing during illness. In contrast, an uneducated mother emphasized the importance of cleanliness and ensured her child brushed regularly, stating simply, \u0026ldquo;Cleanliness is as important as medicines.\u0026rdquo; These findings suggest that with adequate motivational guidance, equitable oral care practices can be fostered regardless of educational background.\u003c/p\u003e \u003cp\u003eHowever, caregivers with no reading or writing ability faced particular challenges in interpreting instructions. This is evident from one caregiver\u0026rsquo;s response during a discussion on mouthwashes provided by the hospital: \u0026ldquo;I am not sure if I have received such thing. There is a black kind of liquid in a plastic bottle, I do not know if it is some oil for putting on hair. I have kept it with her mother; she also didn\u0026rsquo;t understand. So, it is kept unopened.\u0026rdquo; Such narratives highlight the importance of clear, pictorial or verbal communication adapted to literacy levels.\u003c/p\u003e \u003cp\u003eAdolescents\u0026rsquo; oral care was often assumed to be self-managed, leading to oversight. A father admitted, \u0026ldquo;I do not see if he brushes every day, but he mostly takes care of it himself. We brought him here 1 month after sickness, and might not have brushed then,\u0026rdquo; with a shrug suggesting minimal awareness of its importance. This underlines the need for active supervision and reinforcement even in older children.\u003c/p\u003e \u003cp\u003eA major barrier that emerged from interactions with both caregivers and healthcare providers was the lack of consistent information during episodes of thrombocytopenia. Many caregivers stopped brushing out of concern for bleeding but received no clear guidance on when to resume, resulting in poor oral hygiene for prolonged periods. As these children frequently experienced recurrent thrombocytopenia, the absence of coordinated advice\u0026mdash;often stemming from unclear division of responsibilities among providers\u0026mdash;left caregivers uncertain and hesitant.\u003c/p\u003e \u003cp\u003eIn summary, the findings emphasize the need for integrated oral health support within paediatric oncology care, combining clear communication, motivational counselling, and contextual sensitivity to both caregiver capabilities and the child\u0026rsquo;s treatment trajectory.\u003c/p\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and Limitations:\u003c/h2\u003e \u003cp\u003eA major strength of this study is the inclusion of both caregiver and provider perspectives, offering a comprehensive view of barriers and facilitators. Triangulation methods were incorporated at every step. Respondent validation reinforced the credibility of the findings. However, the study was conducted at a single tertiary care centre, potentially limiting generalizability. Future research could expand to multiple centres and explore interventions designed based on the identified facilitators.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eOral hygiene maintenance in children undergoing chemotherapy for ALL is a complex issue influenced by treatment side effects, caregiver challenges, healthcare system limitations and resource constraints. However, targeted education, peer support, structured institutional assistance, and interdisciplinary care integration are key for improving oral health outcomes in these children. Systematic efforts to embed oral hygiene promotion within paediatric oncology care pathways are crucial to enhance both immediate and long-term quality of life for childhood cancer survivors.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eConflict of Interest: None\u003c/p\u003e\n"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eKonings AW, Coppes RP, Vissink A. On the mechanism of salivary gland radiosensitivity. Int J Radiat Oncol Biol Phys. 2005 Jul 15;62(4):1187-94. Erratum in: Int J Radiat Oncol Biol Phys. 2006 Jan 1;64(1):330.\u003c/li\u003e\n\u003cli\u003eJasmer KJ, Gilman KE, Mu\u0026ntilde;oz Forti K, Weisman GA, Limesand KH. Radiation-Induced Salivary Gland Dysfunction: Mechanisms, Therapeutics and Future Directions. J Clin Med. 2020 Dec 18;9(12):4095.\u003c/li\u003e\n\u003cli\u003eRitwik P, Chrisentery-Singleton TE. Oral and dental considerations in pediatric cancers. Cancer Metastasis Rev. 2020 Mar;39(1):43-53.\u003c/li\u003e\n\u003cli\u003eLi X, Kolltveit KM, Tronstad L, Olsen I. Systemic diseases caused by oral infection. Clin Microbiol Rev. 2000 Oct;13(4):547-58.\u003c/li\u003e\n\u003cli\u003eLo Nigro L. Biology of childhood acute lymphoblastic leukemia. J Pediatr Hematol Oncol. 2013 May;35(4):245-52.\u003c/li\u003e\n\u003cli\u003eJha, Shweta; Kumar, Dinesh. Acute Lymphoblastic Leukemia in Indian Children at a Tertiary Care Center: A Multiparametric Study with Prognostic Implications. National Journal of Clinical Anatomy 10(4):p 214-219, Oct\u0026ndash;Dec 2021\u003c/li\u003e\n\u003cli\u003eDevilli L, Garonzi C, Balter R, Bonetti E, Chinello M, Zaccaron A, Vitale V, De Bortoli M, Caddeo G, Baretta V, Tridello G, Cesaro S. Long-term and quality of survival in patients treated for acute lymphoblastic leukemia during the pediatric age. Hematol Rep. 2021 Mar 5;13(1):8847.\u003c/li\u003e\n\u003cli\u003eCools J. Improvements in the survival of children and adolescents with acute lymphoblastic leukemia. Haematologica. 2012 May;97(5):635. doi: 10.3324/haematol.2012.068361.\u003c/li\u003e\n\u003cli\u003ePajari U, Ollila P, Lanning M. Incidence of dental caries in children with acute lymphoblastic leukemia is related to the therapy used. ASDC J Dent Child. 1995 Sep-Oct;62(5):349-52. \u003c/li\u003e\n\u003cli\u003eDas N, et al. Protocol for ICiCLe-ALL-14 (InPOG-ALL-15-01): a prospective, risk stratified, randomised, multicentre, open label, controlled therapeutic trial for newly diagnosed childhood acute lymphoblastic leukaemia in India. Trials. 2022 Jan 31;23(1):102. doi: 10.1186/s13063-022-06033-1.\u003c/li\u003e\n\u003cli\u003eCharmaz K. Constructing grounded theory: a practical guide through qualitative analysis. Thousand Oaks, CA: SAGE, 2006.\u003c/li\u003e\n\u003cli\u003eGlanz K, Bishop DB. The role of behavioral science theory in development and implementation of public health interventions. Annu Rev Public Health. 2010;31:399-418. doi: 10.1146/annurev.publhealth.012809.103604. PMID: 20070207\u003c/li\u003e\n\u003cli\u003eCarrozzo M, Eriksen JG, Bensadoun RJ, Boers-Doets CB, Lalla RV, Peterson DE. Oral Mucosal Injury Caused by Targeted Cancer Therapies. J Natl Cancer Inst Monogr. 2019 Aug 1;2019(53):lgz012.\u003c/li\u003e\n\u003cli\u003eBlijlevens NM, Donnelly JP, De Pauw BE. Mucosal barrier injury: biology, pathology, clinical counterparts and consequences of intensive treatment for haematological malignancy: an overview. Bone Marrow Transplant. 2000 Jun;25(12):1269-78.\u003c/li\u003e\n\u003cli\u003eAnirudhan D, et al. Etiology and outcome of oral mucosal lesions in children on chemotherapy for acute lymphoblastic leukemia. Indian Pediatr. 2008 Jan;45(1):47-51.\u003c/li\u003e\n\u003cli\u003evan der Velden WJ, Herbers AH, Netea MG, Blijlevens NM. Mucosal barrier injury, fever and infection in neutropenic patients with cancer: introducing the paradigm febrile mucositis. Br J Haematol. 2014 Nov;167(4):441-52.\u003c/li\u003e\n\u003cli\u003eWong HM. Oral complications and management strategies for patients undergoing cancer therapy. ScientificWorldJournal. 2014 Jan 8;2014:581795. \u003c/li\u003e\n\u003cli\u003eAngst PDM, Maier J, Dos Santos Nogueira R, Manso IS, Tedesco TK. Oral health status of patients with leukemia: a systematic review with meta-analysis. Arch Oral Biol. 2020 Dec;120:104948. \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"european-archives-of-paediatric-dentistry","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"EAPD","sideBox":"Learn more about [European Archives of Paediatric Dentistry](https://link.springer.com/journal/40368)","snPcode":"40368","submissionUrl":"https://submission.springernature.com/new-submission/40368/3","title":"European Archives of Paediatric Dentistry","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"","lastPublishedDoi":"10.21203/rs.3.rs-6865282/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6865282/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eChildren undergoing chemotherapy for acute lymphoblastic leukemia (ALL) are at heightened risk for oral complications. Despite clinical recommendations, adherence to oral hygiene practices remains inconsistent. This qualitative study explored the perceived barriers and facilitators of oral hygiene maintenance from the perspectives of caregivers and healthcare professionals involved in paediatric oncology care.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA qualitative descriptive design was employed in a tertiary care cancer centre in India. Four focus group discussions were conducted with caregivers (n\u0026thinsp;=\u0026thinsp;44), and in-depth interviews were carried out with healthcare providers (n\u0026thinsp;=\u0026thinsp;15), including paediatric oncologists, nurses, and dental professionals. Data were thematically analysed using a constant comparative approach. Trustworthiness was ensured through triangulation, reflexive journaling, and respondent validation.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003e Thematic analysis revealed key barriers including chemotherapy-induced oral mucosal changes, caregiver emotional stress, limited awareness of oral infections, and resource constraints. From the provider perspective, inconsistent oral hygiene guidance during thrombocytopenia, outpatient time constraints, and caregiver disengagement were notable challenges. Facilitators included caregiver adaptation, peer and staff support, hospital-provided materials, and provider-led motivation and interdisciplinary collaboration.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eThis study highlights the multifaceted barriers to oral care adherence in children with ALL and identifies practical strategies for improving caregiver engagement and system-level support. Findings may inform the development of targeted oral health interventions in paediatric oncology settings.\u003c/p\u003e","manuscriptTitle":"Barriers and Facilitators in oral hygiene maintenance in children undergoing chemotherapy for Acute Lymphoblastic Leukaemia: A qualitative investigation","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-17 09:16:49","doi":"10.21203/rs.3.rs-6865282/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-08-04T00:29:50+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-07-14T06:29:11+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-07-08T08:31:39+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"182593383188345248588382844315393214405","date":"2025-07-08T06:00:31+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"73606971315153779426233517121451094112","date":"2025-06-23T06:56:52+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-06-12T13:42:14+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-06-12T13:24:11+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-06-12T13:19:39+00:00","index":"","fulltext":""},{"type":"submitted","content":"European Archives of Paediatric Dentistry","date":"2025-06-10T16:56:03+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"european-archives-of-paediatric-dentistry","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"EAPD","sideBox":"Learn more about [European Archives of Paediatric Dentistry](https://link.springer.com/journal/40368)","snPcode":"40368","submissionUrl":"https://submission.springernature.com/new-submission/40368/3","title":"European Archives of Paediatric Dentistry","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"6003b0e6-a879-4dff-9a3d-fd3eb6d4e28b","owner":[],"postedDate":"June 17th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-10-20T10:08:50+00:00","versionOfRecord":[],"versionCreatedAt":"2025-06-17 09:16:49","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6865282","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6865282","identity":"rs-6865282","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}