Treatment seeking behavior pathways of Cancer patients in public and private sector facilities: A Qualitative inquiry

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However, in the context of hematological malignancies, the diagnostic process is crucial and has a significant impact on patient outcomes. This study examines TSB in patients with leukemia and lymphoma, emphasizing the period from symptom onset to diagnosis. Employing narrative inquiry and in-depth interviews with 25 patients, the study thematically analyzes using AtlasTi.8 the challenges faced during diagnosis. The findings reveal the critical role of public sector facilities in referrals and the dominance of private sector pathways, highlighting the need for improved diagnostic access and referral systems to enhance cancer care. Haematological Malignancies Treatment-Seeking Behavior Public Sector Referrals Continuum of Care Figures Figure 1 Figure 2 Figure 3 Figure 4 Figure 5 Figure 6 Figure 7 1. Introduction Blood cancers, or haematological malignancies, rank as the third most common cancer type in India, with over 100,000 new cases each year (Mathur et al., 2020 ). These diseases, including leukemia, lymphoma, and myeloma, are aggressive and require timely diagnosis and treatment. Delays in this process are a global health issue, with evidence suggesting that each four-week increase in treatment delay correlates with worse survival outcomes (Hanna et al., 2020 ). Understanding these delays from the patient's perspective is crucial, especially since factors such as age, sex, and socioeconomic status significantly influence diagnosis timing (Winestone et al., 2019 ). Research has revealed that help-seeking for cancer care is shaped by personal beliefs, social norms, and available resources (Oshiro et al., 2022 ). However, these findings offer a limited view, necessitating qualitative research to delve deeper into the patient experience. Weiss's cultural epidemiology framework suggests that treatment behavior is part of a broader "help seeking behavior," which is influenced by cultural factors and extends beyond just seeking medical treatment(Weiss, 2001 ). Dobson et al. ( 2020 ) emphasize the need to clarify the help-seeking path for cancer treatment to develop effective interventions. This study aimed to explore treatment-seeking pathways for haematological malignancies within the "continuum of care," an integrated system tracking patients through various health services(Evashwick, 1989),while considering the sociocultural context of the disease. Recognizing that cancer is not just a biological condition but also a social and psychological experience influenced by culture (Surawy-Stepney & Caduff, 2020 ), we aimed to understand the contextual factors contributing to diagnostic and treatment delays. This understanding could improve how models, such as the Pathways to Treatment Model, are applied in clinical practice (Parsonage et al., 2017 ). Given the significant association between treatment delays and increased mortality (Morrill et al., 2022 ), our research question was: How do the treatment-seeking behavioral pathways of patients with haematological malignancies in India influence their access to care and interactions with the healthcare system from symptom onset to diagnosis and treatment initiation? By examining the experiences of patients and their families, this study sought to inform the development of interventions that enhance the continuum of care and improve cancer outcomes in India. 2. Methodology The research methodology employed in this study was an explanatory case study method of the process of treatment-seeking behavior in patients with hematology malignancy. The study was conducted in a public sector cancer hospital, which was chosen because of its accessibility to the researcher and availability of large number of patients with haematological malignancies. This study involved 25 participants selected from the patient records at one of the Regional Cancer Centers in Cuttack, which is a specialized tertiary cancer treatment facility in Odisha, India. These participants were undergoing treatment during the study period. For patients under 20 years old, additional information was obtained from their parents. Out of a preliminary group of 25 patients with hematological malignancies, 20 were chosen for detailed study. This selection focused on patients with leukemia and lymphoma who had been receiving treatment for over six months at the center. An in-depth narrative inquiry into the experiences of patients collected using a semi-structured interview guide. Information pertaining to patients' demographic characteristics, nature (types of disease), duration of disease, dietary habits, and family history. Subsequently, patients’ experiences were explored from their perspectives through in-depth interviews. The interview guide was designed to elicit information on participants' treatment-seeking behaviors, challenges faced during the treatment journey, and their experiences with the healthcare system. Interviews were conducted in the respondents' native language (Odia). The interviews commenced with open-ended questions, allowing the respondents to express themselves without interference from the researcher. Following a reflective pause, the researcher introduced a second set of questions to mitigate respondents' recollection bias The interviews were conducted at a specified time of day, as the patients were otherwise occupied with their treatment procedures. The interview was held in the Medical Oncology Hospital ward after lunch (between 2 and 6 p.m.). All the respondents were informed about the study and consent was obtained by assuring that the participants have the freedom to withdraw from the study anytime. The anonymity and confidentiality of the data collected was maintained throughout the process of the research and the study has undergone necessary approval of the hospital review board and the University (TISS) ethical approval was also obtained. 3. Data Analysis The interviews were transcribed, translated into English, and analyzed using thematic analysis. Atlas.ti version 8 was used to analyze the data. Open coding and in vivo coding were used to analyze the in-depth interview data. In this program, manual codes were grouped together as code families. The code families were then thematically analyzed to determine the theme patterns. These themes were then used to develop a narrative of participants' experiences. Treatment Seeking Behaviour (TSB) Pathways of Patients with Haematological Malignancies (HM) We closely examined the treatment-seeking behavior (TSB) pathways of patients with hematological malignancies (HM), focusing on the patient's perspective within their socio-cultural context. TSB is not merely a series of actions taken to address health problems; it is deeply intertwined with the identity of individuals, families, and communities, reflecting their value in healthcare on a daily basis (Liyew et al., 2022 ) Contrary to traditional views that consider TSB as the culmination of several decisions into a final choice of a health facility, it has been argued for its recognition as a process (Mackian, 2002 ) This is pertinent in cancer care, where treatment is of prolonged duration, and specialized diagnostic and treatment centers are scarce. This behavior spans a spectrum of activities from familial consultations till it finally reaches professional medical treatment. Applying this framework, we sought to understand the TSB of patients with hematological malignancies (HM) at two distinct levels. Initially, we investigated TSB by examining the personal illness experiences of patients and the meanings they attributed to these experiences, including their emotional distress and the causes they perceived. Subsequently, we considered how these personal experiences and meanings interact with the health system across the care continuum, considering the time elapsed from symptom onset to arrival at a cancer treatment facility. This included the pre-diagnosis phase, marked by the emergence of symptoms and the steps taken to identify their cause, and the cancer phase, which began with the diagnosis of HM and culminated in engagement with a cancer care facility. Three types of patterns of treatment-seeking behavior emerged in patients with HM. First, treatment seeking (TS) pathways that chose government tertiary facility and was referred to a Cancer hospitlal. Second, treatment-seeking pathways that initially followed the primary level public sector hospitals and after reaching the district hospital got referred to Cancer hospital; and Third, too much of Diversions and disruptions in the initial phase with the experience of mostly the private sector both at the primary and the secondary level after several strides finally reach the Cancer hospital as a final resort. To elucidate these pathways, we follow a schematic symbol system to represent the type of health facility and the journey of patients at each level and across stages is defined and explained in the Table 1 below. 4.1 Cardinal Role of Public Sector Tertiary Facility in Timely Referral The first category of patients are those who sought medical attention at tertiary specialty public facilities after symptom onset, showcasing trust and reliance on such institutions. We observed that certain patients directly approach the government tertiary specialty (pediatric) hospital for medical attention as soon as symptoms manifest. This facility is specifically focused on delivering advanced medical care to children offering specialized treatments and services tailored to their unique health needs. This preference is typically driven by the widespread awareness about these facilities and the expectation of receiving advanced, specialized care for their ailments. Moreover, the absence of rigorous treatment cost further encourages individuals to opt for tertiary public care. Subsequently, upon visiting these government tertiary facilities, patients are usually referred to specialized cancer hospitals, thereby facilitating the initiation of their treatment in a timely manner. The journey of patients with hematological malignancies (HM) unveils a direct approach towards tertiary facilities after symptom manifestation. For instance, upon experiencing symptomatic episodes, 8years old Sumit and 16 years old Arjun proceeded directly to a tertiary facility/ district hospital where a prompt diagnosis of cancer was made, followed by an appropriate referral, thereby reducing the overall delay in treatment initiation. Sumit's Journey Through Government Tertiary Pediatric and Cancer Care Facility: The experiences of Sumit, an 8-year-old patient with Non-Hodgkin Lymphoma (NHL) based on his father’s narrative testifies it. His Father recalled the difficult time one year ago, when the severity of his child's symptoms necessitated seeking medical attention. They approached the nearest tertiary referral level, resulting in NHL diagnosis and subsequent referral to a cancer facility. The total duration from symptom onset to reaching the cancer hospital was 12 days, which was considerably less in comparison to other patient narratives. Father stated: “One year before means when he was the age of 7yrs old, he didn’t take food. He felt breathlessness. We became very worried after 2 days we took him to SISHUBHAVAN government tertiary (Paediatric)hospital, as it was near to our district and good for the children. There we came to know he has a lot of water in his chest. Then Doctor removed this water and prescribed BIOPSY. After the result came in 7 days it was mentioned my son had NHL. Doctors at SISHUBHAVAN further recommended to Cancer Hospital. We went back home and came after 3 days to the cancer hospital.” From the above patient case, it has found that the total time taken from the onsets of first symptoms to the cancer hospital was12 days. The father's account provides insight into a relatively expedited medical journey, spanning just 12 days from the onset of symptoms to the referral to a cancer hospital, following a diagnosis of Non-Hodgkin Lymphoma (NHL) in a 7-year-old child. This case is marked by an immediate concern over severe symptoms, including loss of appetite and breathlessness, which prompted the parents to seek urgent medical attention at SISHUBHAVAN, a government tertiary pediatric hospital known for its specialized care for children. The prompt action led to the discovery of fluid accumulation in the child's chest, necessitating immediate intervention and further investigation through a biopsy. The biopsy's findings resulted in a swift referral to a specialized cancer hospital. This narrative underscores the crucial role of specialized pediatric facilities in the early detection and diagnosis of serious conditions, reflecting an effective linkage between initial care provision and specialized treatment centers. The relatively short delay in this case highlights the benefits of proximity to and the availability of specialized pediatric healthcare services, demonstrating how targeted referrals and immediate follow-up actions can significantly reduce the time to diagnosis and treatment initiation for critical conditions. Arjun's Journey Through Tertiary Care(General) to Cancer (Speciality) Hospital : Another instance involved the aunt of a Arjun16-year-old NHL patient, who recounted the treatment-seeking trajectory and her decision to proceed directly to a tertiary care facility upon the onset of symptoms. This process was completed more expeditiously than that of other patients. The Aunt stated: "When he was 12 years old, his fever began. Swelling was observed on the left side of the neck. When he ate non-vegetarian food (chicken, eggs), the swelling increased and the fever returned. The swelling persisted for two months. One day later, he developed high fever. The following day, I took him to the nearest tertiary government hospital. They conducted a biopsy, and after seven days, the result returned to HL. They recommended to this cancer hospital.” From this patient case, it was found that the total time taken from the onset of the first symptoms to the arrival at the cancer hospital was 72 days. The delay was combination of factors, including lack of awareness about the severity of the symptoms, perceived normalcy of fever and swelling as common, non-threatening symptoms, and potential financial or logistical constraints in accessing healthcare services promptly. Additionally, cultural beliefs and practices surrounding health and illness, such as the reliance on home remedies or the consumption of specific foods believed to influence health conditions, have played a role in the decision to delay seeking professional medical advice. 4.2 Traditional Public Sector Referral Delays Cancer Treatment In this scenario, patients who adhered to a public sector referral system after symptom onset were considered. A referral embodies a dynamic process in which a healthcare professional, lacking certain resources, such as drugs, equipment, or skills to manage a clinical condition, seeks assistance from a better-equipped facility at the same or higher level (Bashar et al., 2019). This system is designed to prompt patients to initiate care at the primary level, progressing to higher care levels based on their needs, thereby reducing costs for caregivers and patients. Consequently, a referral system is pivotal for effective disease management in any healthcare setting. This system is generally pyramidal, with a broad base of primary healthcare centers (PHC), fewer secondary care centers in the middle, and even fewer tertiary care centers at the apex (Bhattacharya, 2017). Bhattacharya argues that the ideal public sector progresses through sub-centers (SC), PHCs, Community Health Centers (CHC), sub-districts (SD), District Hospitals (DH), tertiary facilities in medical college hospitals (MC), and super-specialty hospitals (SH). Thus, appropriate referrals at each stage are imperative for patients to reach cancer facilities. It was observed that certain patients opted to use the public sector referral system, which is an appropriate pathway for individuals seeking healthcare services for all other illnesses. This option is particularly attractive to HM patients because of its availability and accessibility, as well as the assurance of minimal treatment costs despite multiple consultations. However, the extended waiting time for appointments stems from inadequate disease detection at primary and secondary health care facilities. A Father’s journey of from Local Care to Government tertiary specialty (Cancer) Hospital : HM Patient Sneha demonstrated compliance with the designated referral system by reaching the nearest Primary Healthcare (PHC) facility following the onset of symptoms. Subsequently, the patient was directed to a Government Teriarry (District Hospital)and then to a government tertiary (general) hospital, where the diagnosis of HM was confirmed. A referral to a cancer hospital was followed, resulting in a total delay of 67 days from the patient's perspective, as shown in the subsequent HMTSB diagram (Fig. 1.5). In the mean time the patient visited 6 health facilities and only got a diagnosis at the 6th facility. A case involving the father (key informant) of a 4-year-old XXX(name) sneha patient with Acute Lymphoblastic Leukemia (ALL) elucidated the treatment-seeking (TS) pathways. Father stated; When she was around 2.5 years old, I noticed some spots on her face and nose accompanied by a high fever. The spots were white. We consulted a local practitioner in the village. Although not medically certified, he was a go-to person for all of our villagers because of proximity. He advised us to visit the nearest primary healthcare center. However, her condition did not improve, and the fever persisted. Consequently, we sought help at a district hospital where the fever was initially managed. However, 22 days later, fever resurfaced. Upon revisiting the district hospital, the patient was informed of a reduced blood count. Although the fever subsided after the consultation, it returned after 20 days. Distance to the hospital impeded timely medical attention. Gradually, her abdomen swelled and her complexion turned pale. Opting for closer medical aid, we decided to visit a neighboring district hospital. Arranging transportation, we reached the facility where she received a blood transfusion and recommended a bone marrow test. However, the necessary facilities for the test were unavailable, prompting referral to a tertiary government hospital. After a seven-day hiatus, we managed to visit the hospital where a bone marrow test was conducted, revealing Acute Lymphoblastic Leukemia (ALL). A further referral to a cancer hospital was made. Financial constraints forced us to delay visits until funds were arranged. Fifteen days later, we reached the cancer hospital. From the narrative, it is discerned that the total duration from symptom onset to reaching the cancer hospital spans 67 days. The journey to the cancer hospital, spanning 67 days, reflects a series of delays influenced by cultural trust in local practitioners, systemic healthcare barriers, and financial constraints. Initially, the family sought advice from a village-based, non-certified practitioner due to proximity and trust, a common practice in rural settings. As the child's condition worsened, they moved through a primary healthcare center and two district hospitals, facing challenges like the absence of specialized testing facilities and long distances that hindered prompt care. Economic difficulties further delayed their ability to quickly access the required specialized treatment. In total, the family visited four different healthcare facilities before reaching the cancer hospital, where the diagnosis of Acute Lymphoblastic Leukemia (ALL) was finally made, illustrating the multifaceted obstacles faced in securing timely medical intervention. 4.3 Private Sector Treatment not only Delays Cancer Diagnosis but also can be Catastrophic The third categories of patients are those who initially sought care at a private facility after symptom onset. It was found that HM patients often turned to private facilities due to the unavailability or inaccessibility of public facilities at the pre-diagnosis stage. Even when public care was an option, their perception of superior treatment drove them to private facilities. It has emerged that private sector providers at the secondary level continue treating patients without offering a correct diagnosis or referral for a longer period. Patients transitioned from one private facility to another to seek better care, consequently extending the total delay in accessing treatment at cancer facilities for several months. This delay was notably extended for Vivek with a total duration of 425 days before reaching the cancer facility, as elaborated below. A Mother's Journey of hope shifting from Private to Public facility : A case recounted by the mother (key informant) of a 12-year-old vivek with Acute Lymphoblastic Leukemia (ALL) shed light on treatment-seeking behavior (TSB) pathways. Her decision to initially rely on private sector care exacerbated the disease conditions, ultimately leading them to seek treatment at a public cancer facility. Motherstated : When he was ten years old, his left elbow pain started. Then, I took her to the private clinic near our area, as it was good compared to the PHC in terms of treatment of the patient. He advised him to undergo radiography. We followed this along with some medications. Then after 4–5 months, right elbow pain started. This time, I used homely treatment for his pain. I used “Kantamorris pants and raw rice” in his pain area. However, the pain did not resolve. After a certain amount of time, his right leg started. He didn’t walk properly. He had fever with vomiting at that time. This time, I took him to another doctor (private clinic), as the previous one’s medication did not work. He received X-rays and painkiller injections for pain relief and some medicine for fever. The doctor suggested administering painkiller injections for six months. My son followed it. During this time, his elbow pain persisted. Although he followed the advice, the pain did not stop. His blood count was also decreased. I took him to another private clinic, as advised by the villagers, and he gave me some units of blood, which resulted in the improvement of my son’s blood count. He recommended treatment at another large private hospital. It was costly for us. They were charging 25k/month. We stayed for nearly one month for his treatment. Bone marrow tests revealed acute lymphoblastic leukemia. Then we came back home and arranged some money after around 7 days came to cancer hospital. From this narrative, it is evident that the total duration from symptom onset to reaching the cancer hospital spans 425 days with more than five hospitals visited before reaching a cancer hospital. The narrative reveals a 425-day delay from the initial symptoms to the diagnosis at a cancer hospital, involving visits to over five medical facilities. The journey began with a visit to a local private clinic, favored for its perceived superiority over the nearest Primary Health Center (PHC), where radiography and medications were first prescribed. As pain progressed to the right elbow and then the leg, combined with fever and vomiting, home remedies were initially attempted, followed by consultations at two additional private clinics for X-rays, pain relief injections, and medications. Despite these efforts, persistent elbow pain and declining blood counts led to another clinic visit, where a blood transfusion temporarily improved the condition. Ultimately, a referral from a large private hospital—after a costly stay and a bone marrow test—confirmed acute lymphoblastic leukemia, prompting the final move to a cancer hospital after a week of financial preparation. This protracted timeline underscores the complex interplay of financial constraints, reliance on local medical advice, and the iterative search for effective treatment across multiple healthcare providers. The private sector's disruptions and diversions significantly delayed treatment for patients, as observed in the treatment-seeking pathways of patients 9 and 17, owing to the ineffective referral system within the public health sector. Consequently, by the time these patients reached the cancer facility, their condition had significantly deteriorated. Examining the treatment-seeking pathways of patients 9 and 17 revealed total delay durations of 92 and 2370 days, respectively, as further discussed from the patients' perspective below. A father’s quest for diagnosis through public to private care and back again : In the first illustration, the father of Rohan an 8-year-old NHL patient recounts the treatment-seeking pathways: Father) stated : "At the age of 4 years, he developed swelling on the left side of his neck. Within 2 months, the swelling enlarged significantly, making breathing very painful. Fever also ensued, and he struggled with food intake. I took him to a government tertiary hospital a few days after the onset of fever. They were unable to detect the issue and were merely prescribed medications. The medications had no effect; therefore, some villagers suggested a private facility, citing better treatment. Fifteen days later, when the fever returned, I took him to the private facility. They charged a hefty fee for the treatment which yielded no improvement. He received treatment there for two months. As the expenses escalated, they referred us to a Tertiary Government hospital. This hospital then referred us to Sishubhavan (Government Pediatric Hospital), which we visited seven days later due to its distance from home. They conducted a biopsy but couldn’t confirm the diagnosis in the initial report. They further referred us to a government cancer hospital. We arrived there 10 days later, where another biopsy was conducted, confirming the diagnosis as NHL." From this case, it was found that the total time taken from the onset of the first symptoms to the cancer hospital was 92 days. Analyzing the narrative provided, the progression to a confirmed diagnosis of Non-Hodgkin's Lymphoma (NHL) reveals critical insights into the reasons for delay and the multiple healthcare facilities visited. Initially, the child was taken to a government tertiary hospital, but when no diagnosis was made, local advice led the family to seek care at a private facility, indicating a common belief in the superior quality of private healthcare. Despite this, the treatment received at the private facility was ineffective and financially burdensome, prompting a referral back to the public healthcare system, specifically to a government pediatric hospital (Sishubhavan), noted for its specialization in child health. The delay in visiting Sishubhavan, attributed to its distance, and the subsequent need for further referral to a government cancer hospital highlight systemic barriers in healthcare accessibility and the complexities of navigating between public and private healthcare sectors. The entire journey from symptom onset to reaching the cancer hospital spanned 92 days, encompassing visits to four distinct healthcare facilities. This case underscores the challenges faced by families in accessing timely and effective diagnosis and treatment, exacerbated by economic constraints and systemic inefficiencies within the healthcare landscape. A Father's Battle; misdiagnosis from Private care to government tertiary specialty (cancer) care : In another illustration, the father of a 10-year-old Bibhu HL patient detailed the treatment-seeking pathways and how they disrupted and exacerbated his son's health conditions: The father explained the TSB. “At age three, he began crying excessively, and there appeared to be some swelling on the right side of his neck, accompanied by pain and fever. I took him to the nearest doctor's office (a private clinic). The symptoms didn’t last long, and the fever subsided. At age 9, the node on his neck and underarm region enlarged, resembling 'patchouli". I admitted him to a government tertiary hospital. The doctor dismissed it as typical. No effective treatment was provided; therefore, we returned home. The swelling persisted. The fever recurred along with severe weakness. At that time, I had taken him to a private clinic. They provided medication but did not change it. When fever recurred after 7 days, I took him to another private clinic where the doctor prescribed medication and returned home. Nodal swelling and fever re-emerged after 2 months, prompting another visit to a private clinic. It took approximately six months to move from one doctor to another until one doctor (private clinic) referred us to the cancer hospital. Upon our arrival, a biopsy was suggested by the doctor, which confirmed the diagnosis as Hogdgkin Lymphoma" From this case, it was found that the total time taken from the onset of the first symptoms to the cancer hospital was 2370 days. The father's narrative underscores a prolonged journey over approximately 6.5 years from the initial emergence of symptoms to the diagnosis of Hodgkin Lymphoma at a cancer hospital. Key factors contributing to this extended timeline include initial misinterpretation of symptoms by healthcare providers, which led to underestimation and inadequate responses to early warning signs. The journey involved transitions between various healthcare settings, starting from a local private clinic to a government tertiary hospital and back to several private clinics, before a referral to a specialized cancer hospital was made. This iterative process of seeking care from multiple providers reflects challenges in obtaining an accurate diagnosis and effective treatment, exacerbated by the healthcare system's fragmentation. The eventual diagnosis followed a specific referral to a cancer hospital, suggesting a significant delay in recognizing the need for specialized evaluation. This case highlights critical gaps in the initial healthcare response to cancer symptoms, the impact of healthcare system navigation difficulties on timely diagnosis, and the importance of streamlining referral pathways to specialized care for serious conditions. 4. Discussion: Treatment seeking Behaviour Pathways of Cancer patients The treatment seeking behavior pathways of haemetological malignancies as a category of cancer patients reveal the contextual nature of factors that are relevant in Cancer treatment. Further, the fact that the process of treatment seeking and the various factors that contributed through the stages of treatment seeking reveal that there is a need to examine the treatment seeking behavior of cancer patients into three different stages: viz. the prediagnosis phase, the diagnosis and treatment phase in cancer hospital and third and finally is the follow up and continuous treatment phase. Here, using the cultural epidemiology framework by Weiss which attribute experience and meaning of cancer patients, it is important to understand how the perception about symptoms and the pattern of distress itself triggers the type of treatment sought. A conceptual framework that emerges from the experience of patients depicts the complex nature of TSB of cancer patients as shown in the fig (fig). We closely examined the treatment-seeking behavior (TSB) pathways of patients with hematological malignancies (HM), focusing on the patient's perspective within their socio-cultural context. TSB is not merely a series of actions taken to address health problems; it is deeply intertwined with the identity of individuals, families, and communities, reflecting their value in healthcare on a daily basis (Liyew et al., 2022 ) Contrary to traditional views that consider TSB as the culmination of several decisions into a final choice of a health facility, it has been argued for its recognition as a process (Mackian, 2002 ) This is pertinent in cancer care, where treatment is of prolonged duration, and specialized diagnostic and treatment centers are scarce. This behavior spans a spectrum of activities from familial consultations till it finally reaches professional medical treatment. Applying this framework, we sought to understand the TSB of patients with hematological malignancies (HM) at two distinct levels. Initially, we investigated TSB by examining the personal illness experiences of patients and the meanings they attributed to these experiences, including their emotional distress and the causes they perceived. Subsequently, we considered how these personal experiences and meanings interact with the health system across the care continuum, considering the time elapsed from symptom onset to arrival at a cancer treatment facility. This included the pre-diagnosis phase, marked by the emergence of symptoms and the steps taken to identify their cause, and the cancer phase, which began with the diagnosis of HM and culminated in engagement with a cancer care facility. Further examining the treatment seeking behavior pattern of HM patients, three specific patterns were found, first is that those patients getting ready referral from public sector pediatric hospital which is the best of the existing scenarios, wherein the tiemly referral and public consultation has reduced the burden of patients significantly. Second is that of those followed the traditional government referral system, that has delayed the prompt diagnosis but has not created financial hardships for the patient. The important question here is that how can cancer treatment related referral be streamlined in the public sector health care delivery at the level of primary and secondary level facilities. The third and most distressing experience emerge from those who sought treatment in the private facility and that too for a very long period than the rest, which not only delayed the valuable time for cancer treatment but also drained all the resources of the families due to higher cost and unaffordable private sector. The examination of treatment-seeking behavior in patients diagnosed with hematological malignancies (HMs) underscores the importance of an effective referral system within the public health sector. The findings reveal a trend toward the private sector due to the inadequacies and deficiencies of the envisioned referral chain (comprising Primary Health Care Centers (PHCs), Community Health Centers (CHCs), District Hospitals (DHs), tertiary public hospitals, and designated cancer hospitals) within the public health domain. This trend is further exacerbated by the allure of supposedly superior medical counseling offered by private entities. Despite strict adherence to recommended guidelines, patients did not experience any improvement in their health states; in fact, they were further burdened by the financial demands of exorbitant private healthcare costs. As a result, the detours created by private sector interactions not only complicate the treatment-seeking trajectory but also exacerbate the temporal and financial burdens of cancer care Upon retrospection of respondents' treatment and care decisions, a common sentiment was observed. The narratives of the respondents centered around a hypothetical scenario wherein prior knowledge of the existing public cancer hospital and a comprehensive understanding of the disease would have led them directly to the appropriate cancer facility, instead of the circuitous and burdensome journeys they underwent. This agreement highlights the adverse impact of information asymmetry and the resulting missteps in treatment seeking. The necessity for a robust referral system for cancer care within the public health framework is evident in these patient narratives. The primary objective of establishing such a referral infrastructure is to expedite the initiation of cancer treatment, enhance trust and reliance on the public health system, and strengthen the capacity of the public health system to provide comprehensive cancer care. This aligns with the broader discourse in health systems strengthening, where timely access to diagnosis and treatment significantly impacts the trajectory and outcomes of chronic diseases such as cancer (World Health Organization, 2017 ). The creation of an informed treatment-seeking climate, supported by a well-coordinated referral network, is crucial for overcoming existing barriers to cancer care and fostering a more responsive and patient-centric healthcare system. 5. Conclusion The TSB for cancer reveals that Cancer care implies a complex of events that start from the first onset of symptoms related to that which go unnoticed. There is a need to acknowledge and recognize the unnoticeable and unknown stages of cancer treatment. This gets severe in a context of poor access to health care facilities and failure to offer specialist care at appropriate levels. The complexity of treatment seeking behavior for Cancers will be revealed only when the concept of treatment seeking behavior is conceptualized and studied as a process. The study reveals the need to use various phases of cancer related studies on treatment seeking behavior, As the disease care for cancer is long term and the diagnosis of the disease requires critical and high-end technology, it is unique to only cancer hospitals and centers. This implies that a final confirmation of cancer diagnosis is not readily and easily available to common patients, especially in the rural and urban poor. It is a characteristic feature that most cancer hospitals are in the public sector and those affordable to the poor are rendered by the public sector. There is a need to understand the TSB for cancers in its entire complexity. What the current study reveals is that the doctors in the public sector facility with a pediatric specialty were able to suspect those patients with cancer much earlier and quicker and hence always refer for a confirmed diagnosis to a cancer hospital. This is true from the experiences of patients who initially took treatment from primary level PHC as well as those taking treatment from a government tertiary level facility (district hospital). In both situations, the duration of reaching the specialist tertiary facility and thus obtaining a final diagnosis of cancer was shorter than that of patients who initially sought treatment from private sector facilities. Those chosen private sector facilities as the first choice of treatment were subjected to treatment for a longer period. Additionally, the lack of accessibility to public sector and affordability of private sector health care for people in general and more so in cancer context is revealing. However, patients still face challenges such as barriers to access, lack of information and support, and cultural and linguistic barriers. More research is needed to fully understand the possibilities of developing SOPs for referral of cancer care and identify best practices for implementing and maintaining them. This research can also identify areas for improvement, such as addressing barriers to access and improving communication between primary care providers and specialized cancer care centers. 6. Limitations of The study Since the researcher relied on information reported by patients, there may be recall bias. However, efforts were made to minimize the effects of recall bias by putting multiple and leading questions. Declarations Conflict of interest The authors declare that they have no conflicts of interest related to the content of this manuscript. Source of Funding This research received no external funding. Acknowledgement The authors would like to express their sincere gratitude to the patients with cancer who participated in this study. Their contributions and willingness to share their experiences are invaluable to this research. We extend our sincere gratitude to the AHPGIC Cancer Hospital Authority for granting us the necessary permission to conduct this study and for their unwavering support throughout the research process. Without cooperation, this study would not have been possible. We would also like to express our appreciation to the staff of the hospital for their help and support throughout the research process. Author Contributions KG and MG contributed to the design and implementation of the research. KG analyzed the results, and wrote the manuscript with the guidance of MG. The original idea was conceived by KG and MG. The final review of the manuscripts done by MG. Data Access Statement The raw data that support the findings of this study cannot be shared publicly due to privacy concerns and the lack of participant consent for such sharing. However, the data are available from the corresponding author, [KG], upon reasonable request. Any data sharing will be subject to strict conditions to ensure the privacy and confidentiality of the participants, in accordance with the ethical guidelines approved by the hospital authority. References Dobson, C., Rubin, G., Murchie, P., Macdonald, S., & Sharp, L. (2020). Reconceptualising Rural Cancer Inequalities: Time for a New Research Agenda. International Journal of Environmental Research and Public Health , 17 (4), Article 4. https://doi.org/10.3390/ijerph17041455 Evashwick, C. (198). Creating the continuum of care. Health Matrix , 7 (1), 30–39. Hanna, T. P., King, W. D., Thibodeau, S., Jalink, M., Paulin, G. A., Harvey-Jones, E., O’Sullivan, D. E., Booth, C. M., Sullivan, R., & Aggarwal, A. (2020). Mortality due to cancer treatment delay: Systematic review and meta-analysis. BMJ , m4087. https://doi.org/10.1136/bmj.m4087 Liyew, B., Tarekegn, G. E., Kassew, T., Tsegaye, N., Asfaw, M. G., Tilahun, A. D., Tadesse, A. Z., & Alamneh, T. S. (2022). Individual and community-level factors of treatment-seeking behaviour among caregivers with febrile children in Ethiopia: A multilevel analysis. PLOS ONE , 17 (3), e0264707. https://doi.org/10.1371/journal.pone.0264707 Mackian, S. (2002). A Review of Health Seeking Behaviour: Problems and Prospects. Health Systems Development. University of Manchester, Manchester, UK. Mathur, P., Sathishkumar, K., Chaturvedi, M., Das, P., Sudarshan, K. L., Santhappan, S., Nallasamy, V., John, A., Narasimhan, S., & Roselind, F. S. (2020). Cancer Statistics, 2020: Report From National Cancer Registry Programme, India. JCO Global Oncology , 6 , GO.20.00122. https://doi.org/10.1200/GO.20.00122 Morrill, K. E., Robles-Morales, R., Lopez-Pentecost, M., Martínez Portilla, R. J., Saleh, A. A., Skiba, M. B., Riall, T. S., Austin, J. D., Hirschey, R., Jacobs, E. T., Spotleson, L., & Hanna, T. P. (2022). Factors associated with cancer treatment delay: A protocol for a systematic review and meta-analysis. BMJ Open , 12 (6), e061121. https://doi.org/10.1136/bmjopen-2022-061121 Oshiro, M., Kamizato, M., & Jahana, S. (2022). Factors related to help-seeking for cancer medical care among people living in rural areas: A scoping review. BMC Health Services Research , 22 (1), 836. https://doi.org/10.1186/s12913-022-08205-w Parsonage, R. K., Hiscock, J., Law, R.-J., & Neal, R. D. (2017). Patient perspectives on delays in diagnosis and treatment of cancer: A qualitative analysis of free-text data. The British Journal of General Practice , 67 (654), e49–e56. https://doi.org/10.3399/bjgp16X688357 Surawy-Stepney, N., & Caduff, C. (2020). Anthropologies of Cancer. In Oxford Research Encyclopedia of Anthropology . https://doi.org/10.1093/acrefore/9780190854584.013.127 Weiss, M. G. (2001). Cultural epidemiology: An introduction and overview. Anthropology & Medicine , 8 (1), 5–29. https://doi.org/10.1080/13648470120070980 Winestone, L., McPheeters, J., Puccetti, D., Wilkes, J. J., Muffly, L. S., Kahn, J., Henk, H. J., Ginsberg, J. P., Keegan, T., Pollock, B. H., & Alvarez, E. M. (2019). Delays in diagnosis in young patients with leukemia and lymphoma. Journal of Clinical Oncology , 37 (15_suppl), e18138–e18138. https://doi.org/10.1200/JCO.2019.37.15_suppl.e18138 World Health Organization. (2017). Early cancer diagnosis saves lives, cuts treatment costs . https://www.who.int/news/item/03-02-2017-early-cancer-diagnosis-saves-lives-cuts-treatment-costs Additional Declarations No competing interests reported. Supplementary Files Tables.docx Cite Share Download PDF Status: Posted Version 1 posted 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. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6878371","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":470587988,"identity":"4b650d62-025f-4908-b602-ab58700795ae","order_by":0,"name":"Kamalakanta 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07:30:54","extension":"jpeg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":65464,"visible":true,"origin":"","legend":"\u003cp\u003eHM patient 16 (Arjun) schematic diagram representations of pathways of TSB\u003c/p\u003e","description":"","filename":"image2.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-6878371/v1/a5ebdd8d96ae83bc68c5cb3c.jpeg"},{"id":84767870,"identity":"b6bde082-6ed7-43ba-ba1c-450bd832a24e","added_by":"auto","created_at":"2025-06-17 07:30:55","extension":"jpeg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":184352,"visible":true,"origin":"","legend":"\u003cp\u003eHM patient 1(Sneha) schematic diagram representations of pathways of TSB\u003c/p\u003e","description":"","filename":"image3.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-6878371/v1/c5d2f60f44d4072fcde9e09d.jpeg"},{"id":84768635,"identity":"cf6e36a9-08c8-4c53-a7f6-8d84cccc130a","added_by":"auto","created_at":"2025-06-17 07:38:55","extension":"jpeg","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":191832,"visible":true,"origin":"","legend":"\u003cp\u003eHM patient 5 (Vivek) schematic diagram representations of pathways of TSB\u003c/p\u003e","description":"","filename":"image4.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-6878371/v1/3c22868ee22b1f4d3bb15b9c.jpeg"},{"id":84767872,"identity":"6d01da35-c630-4d1d-a75f-ec5375de58e3","added_by":"auto","created_at":"2025-06-17 07:30:55","extension":"jpeg","order_by":5,"title":"Figure 5","display":"","copyAsset":false,"role":"figure","size":158901,"visible":true,"origin":"","legend":"\u003cp\u003eHM patient 9 (Rohan)schematic diagram representations of pathways of TSB\u003c/p\u003e","description":"","filename":"image5.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-6878371/v1/f17520330906677d38eaab9b.jpeg"},{"id":84767875,"identity":"03df74e0-07cb-4bb1-b0c5-bbda79a9b5aa","added_by":"auto","created_at":"2025-06-17 07:30:55","extension":"jpeg","order_by":6,"title":"Figure 6","display":"","copyAsset":false,"role":"figure","size":254854,"visible":true,"origin":"","legend":"\u003cp\u003eHM patient 9 (Bibhu) schematic diagram representations of pathways of TSB\u003c/p\u003e","description":"","filename":"image6.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-6878371/v1/2e1ed1fefd60a620eb5ed727.jpeg"},{"id":84767882,"identity":"751df02d-37c7-486a-920c-46f6692c0da8","added_by":"auto","created_at":"2025-06-17 07:30:55","extension":"png","order_by":7,"title":"Figure 7","display":"","copyAsset":false,"role":"figure","size":70781,"visible":true,"origin":"","legend":"\u003cp\u003eApplied Conceptual Framework\u003c/p\u003e","description":"","filename":"image7.png","url":"https://assets-eu.researchsquare.com/files/rs-6878371/v1/efe811a3550653a0cd6db052.png"},{"id":84770992,"identity":"9b4743f1-96b3-4de5-9fe7-67f962a7dbe6","added_by":"auto","created_at":"2025-06-17 08:02:55","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1735313,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6878371/v1/34a75368-e710-4e06-97b0-7176b97074fc.pdf"},{"id":84767868,"identity":"c33e8b7e-83e1-4376-ac88-d0b40926f48c","added_by":"auto","created_at":"2025-06-17 07:30:55","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":24924,"visible":true,"origin":"","legend":"","description":"","filename":"Tables.docx","url":"https://assets-eu.researchsquare.com/files/rs-6878371/v1/bd9ff4dbbbd00b887323f930.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Treatment seeking behavior pathways of Cancer patients in public and private sector facilities: A Qualitative inquiry","fulltext":[{"header":"1. Introduction","content":"\u003cp\u003eBlood cancers, or haematological malignancies, rank as the third most common cancer type in India, with over 100,000 new cases each year (Mathur et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). These diseases, including leukemia, lymphoma, and myeloma, are aggressive and require timely diagnosis and treatment. Delays in this process are a global health issue, with evidence suggesting that each four-week increase in treatment delay correlates with worse survival outcomes (Hanna et al., \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). Understanding these delays from the patient's perspective is crucial, especially since factors such as age, sex, and socioeconomic status significantly influence diagnosis timing (Winestone et al., \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2019\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eResearch has revealed that help-seeking for cancer care is shaped by personal beliefs, social norms, and available resources (Oshiro et al., \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). However, these findings offer a limited view, necessitating qualitative research to delve deeper into the patient experience. Weiss's cultural epidemiology framework suggests that treatment behavior is part of a broader \"help seeking behavior,\" which is influenced by cultural factors and extends beyond just seeking medical treatment(Weiss, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e2001\u003c/span\u003e). Dobson et al. (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e2020\u003c/span\u003e) emphasize the need to clarify the help-seeking path for cancer treatment to develop effective interventions.\u003c/p\u003e \u003cp\u003eThis study aimed to explore treatment-seeking pathways for haematological malignancies within the \"continuum of care,\" an integrated system tracking patients through various health services(Evashwick, 1989),while considering the sociocultural context of the disease. Recognizing that cancer is not just a biological condition but also a social and psychological experience influenced by culture (Surawy-Stepney \u0026amp; Caduff, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2020\u003c/span\u003e), we aimed to understand the contextual factors contributing to diagnostic and treatment delays. This understanding could improve how models, such as the Pathways to Treatment Model, are applied in clinical practice (Parsonage et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2017\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eGiven the significant association between treatment delays and increased mortality (Morrill et al., \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e2022\u003c/span\u003e), our research question was: How do the treatment-seeking behavioral pathways of patients with haematological malignancies in India influence their access to care and interactions with the healthcare system from symptom onset to diagnosis and treatment initiation?\u003c/p\u003e \u003cp\u003eBy examining the experiences of patients and their families, this study sought to inform the development of interventions that enhance the continuum of care and improve cancer outcomes in India.\u003c/p\u003e"},{"header":"2. Methodology","content":"\u003cp\u003eThe research methodology employed in this study was an explanatory case study method of the process of treatment-seeking behavior in patients with hematology malignancy.\u003c/p\u003e \u003cp\u003eThe study was conducted in a public sector cancer hospital, which was chosen because of its accessibility to the researcher and availability of large number of patients with haematological malignancies. This study involved 25 participants selected from the patient records at one of the Regional Cancer Centers in Cuttack, which is a specialized tertiary cancer treatment facility in Odisha, India. These participants were undergoing treatment during the study period. For patients under 20 years old, additional information was obtained from their parents. Out of a preliminary group of 25 patients with hematological malignancies, 20 were chosen for detailed study. This selection focused on patients with leukemia and lymphoma who had been receiving treatment for over six months at the center.\u003c/p\u003e \u003cp\u003eAn in-depth narrative inquiry into the experiences of patients collected using a semi-structured interview guide. Information pertaining to patients' demographic characteristics, nature (types of disease), duration of disease, dietary habits, and family history. Subsequently, patients\u0026rsquo; experiences were explored from their perspectives through in-depth interviews. The interview guide was designed to elicit information on participants' treatment-seeking behaviors, challenges faced during the treatment journey, and their experiences with the healthcare system. Interviews were conducted in the respondents' native language (Odia).\u003c/p\u003e \u003cp\u003eThe interviews commenced with open-ended questions, allowing the respondents to express themselves without interference from the researcher. Following a reflective pause, the researcher introduced a second set of questions to mitigate respondents' recollection bias The interviews were conducted at a specified time of day, as the patients were otherwise occupied with their treatment procedures. The interview was held in the Medical Oncology Hospital ward after lunch (between 2 and 6 p.m.).\u003c/p\u003e \u003cp\u003eAll the respondents were informed about the study and consent was obtained by assuring that the participants have the freedom to withdraw from the study anytime. The anonymity and confidentiality of the data collected was maintained throughout the process of the research and the study has undergone necessary approval of the hospital review board and the University (TISS) ethical approval was also obtained.\u003c/p\u003e"},{"header":"3. Data Analysis","content":"\u003cp\u003eThe interviews were transcribed, translated into English, and analyzed using thematic analysis. Atlas.ti version 8 was used to analyze the data. Open coding and in vivo coding were used to analyze the in-depth interview data. In this program, manual codes were grouped together as code families. The code families were then thematically analyzed to determine the theme patterns. These themes were then used to develop a narrative of participants\u0026apos; experiences.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTreatment Seeking Behaviour (TSB) Pathways of Patients with Haematological Malignancies (HM)\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe closely examined the treatment-seeking behavior (TSB) pathways of patients with hematological malignancies (HM), focusing on the patient\u0026apos;s perspective within their socio-cultural context. TSB is not merely a series of actions taken to address health problems; it is deeply intertwined with the identity of individuals, families, and communities, reflecting their value in healthcare on a daily basis (Liyew et al., \u003cspan class=\"CitationRef\"\u003e2022\u003c/span\u003e)\u003c/p\u003e\n\u003cp\u003eContrary to traditional views that consider TSB as the culmination of several decisions into a final choice of a health facility, it has been argued for its recognition as a process (Mackian, \u003cspan class=\"CitationRef\"\u003e2002\u003c/span\u003e) This is pertinent in cancer care, where treatment is of prolonged duration, and specialized diagnostic and treatment centers are scarce. This behavior spans a spectrum of activities from familial consultations till it finally reaches professional medical treatment. Applying this framework, we sought to understand the TSB of patients with hematological malignancies (HM) at two distinct levels. Initially, we investigated TSB by examining the personal illness experiences of patients and the meanings they attributed to these experiences, including their emotional distress and the causes they perceived. Subsequently, we considered how these personal experiences and meanings interact with the health system across the care continuum, considering the time elapsed from symptom onset to arrival at a cancer treatment facility. This included the pre-diagnosis phase, marked by the emergence of symptoms and the steps taken to identify their cause, and the cancer phase, which began with the diagnosis of HM and culminated in engagement with a cancer care facility.\u003c/p\u003e\n\u003cp\u003eThree types of patterns of treatment-seeking behavior emerged in patients with HM. First, treatment seeking (TS) pathways that chose government tertiary facility and was referred to a Cancer hospitlal. Second, treatment-seeking pathways that initially followed the primary level public sector hospitals and after reaching the district hospital got referred to Cancer hospital; and Third, too much of Diversions and disruptions in the initial phase with the experience of mostly the private sector both at the primary and the secondary level after several strides finally reach the Cancer hospital as a final resort.\u003c/p\u003e\n\u003cp\u003eTo elucidate these pathways, we follow a schematic symbol system to represent the type of health facility and the journey of patients at each level and across stages is defined and explained in the Table \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e below.\u003c/p\u003e\n\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e\n \u003ch2\u003e4.1 Cardinal Role of Public Sector Tertiary Facility in Timely Referral\u003c/h2\u003e\n \u003cp\u003eThe first category of patients are those who sought medical attention at tertiary specialty public facilities after symptom onset, showcasing trust and reliance on such institutions.\u003c/p\u003e\n \u003cp\u003eWe observed that certain patients directly approach the government tertiary specialty (pediatric) hospital for medical attention as soon as symptoms manifest. This facility is specifically focused on delivering advanced medical care to children offering specialized treatments and services tailored to their unique health needs. This preference is typically driven by the widespread awareness about these facilities and the expectation of receiving advanced, specialized care for their ailments. Moreover, the absence of rigorous treatment cost further encourages individuals to opt for tertiary public care. Subsequently, upon visiting these government tertiary facilities, patients are usually referred to specialized cancer hospitals, thereby facilitating the initiation of their treatment in a timely manner.\u003c/p\u003e\n \u003cp\u003eThe journey of patients with hematological malignancies (HM) unveils a direct approach towards tertiary facilities after symptom manifestation. For instance, upon experiencing symptomatic episodes, 8years old Sumit and 16 years old Arjun proceeded directly to a tertiary facility/ district hospital where a prompt diagnosis of cancer was made, followed by an appropriate referral, thereby reducing the overall delay in treatment initiation.\u003c/p\u003e\n \u003cp\u003eSumit\u0026apos;s Journey Through Government Tertiary Pediatric and Cancer Care Facility:\u003c/p\u003e\n \u003cp\u003eThe experiences of Sumit, an 8-year-old patient with Non-Hodgkin Lymphoma (NHL) based on his father\u0026rsquo;s narrative testifies it. His Father recalled the difficult time one year ago, when the severity of his child\u0026apos;s symptoms necessitated seeking medical attention. They approached the nearest tertiary referral level, resulting in NHL diagnosis and subsequent referral to a cancer facility. The total duration from symptom onset to reaching the cancer hospital was 12 days, which was considerably less in comparison to other patient narratives.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eFather stated: \u0026ldquo;One year before means when he was the age of 7yrs old, he didn\u0026rsquo;t take food. He felt breathlessness. We became very worried after 2 days we took him to SISHUBHAVAN government tertiary (Paediatric)hospital, as it was near to our district and good for the children. There we came to know he has a lot of water in his chest. Then Doctor removed this water and prescribed BIOPSY. After the result came in 7 days it was mentioned my son had NHL. Doctors at SISHUBHAVAN further recommended to Cancer Hospital. We went back home and came after 3 days to the cancer hospital.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n \u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003eFrom the above patient case, it has found that the total time taken from the onsets of first symptoms to the cancer hospital was12 days.\u003c/p\u003e\n \u003cp\u003eThe father\u0026apos;s account provides insight into a relatively expedited medical journey, spanning just 12 days from the onset of symptoms to the referral to a cancer hospital, following a diagnosis of Non-Hodgkin Lymphoma (NHL) in a 7-year-old child. This case is marked by an immediate concern over severe symptoms, including loss of appetite and breathlessness, which prompted the parents to seek urgent medical attention at SISHUBHAVAN, a government tertiary pediatric hospital known for its specialized care for children. The prompt action led to the discovery of fluid accumulation in the child\u0026apos;s chest, necessitating immediate intervention and further investigation through a biopsy. The biopsy\u0026apos;s findings resulted in a swift referral to a specialized cancer hospital. This narrative underscores the crucial role of specialized pediatric facilities in the early detection and diagnosis of serious conditions, reflecting an effective linkage between initial care provision and specialized treatment centers. The relatively short delay in this case highlights the benefits of proximity to and the availability of specialized pediatric healthcare services, demonstrating how targeted referrals and immediate follow-up actions can significantly reduce the time to diagnosis and treatment initiation for critical conditions.\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eArjun\u0026apos;s Journey Through Tertiary Care(General) to Cancer (Speciality) Hospital\u003c/strong\u003e:\u003c/p\u003e\n \u003cp\u003eAnother instance involved the aunt of a Arjun16-year-old NHL patient, who recounted the treatment-seeking trajectory and her decision to proceed directly to a tertiary care facility upon the onset of symptoms. This process was completed more expeditiously than that of other patients.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eThe Aunt stated: \u0026quot;When he was 12 years old, his fever began. Swelling was observed on the left side of the neck. When he ate non-vegetarian food (chicken, eggs), the swelling increased and the fever returned. The swelling persisted for two months. One day later, he developed high fever. The following day, I took him to the nearest tertiary government hospital. They conducted a biopsy, and after seven days, the result returned to HL. They recommended to this cancer hospital.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eFrom this patient case, it was found that the total time taken from the onset of the first symptoms to the arrival at the cancer hospital was 72 days. The delay was combination of factors, including lack of awareness about the severity of the symptoms, perceived normalcy of fever and swelling as common, non-threatening symptoms, and potential financial or logistical constraints in accessing healthcare services promptly. Additionally, cultural beliefs and practices surrounding health and illness, such as the reliance on home remedies or the consumption of specific foods believed to influence health conditions, have played a role in the decision to delay seeking professional medical advice.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e\n \u003ch2\u003e4.2 Traditional Public Sector Referral Delays Cancer Treatment\u003c/h2\u003e\n \u003cp\u003eIn this scenario, patients who adhered to a public sector referral system after symptom onset were considered. A referral embodies a dynamic process in which a healthcare professional, lacking certain resources, such as drugs, equipment, or skills to manage a clinical condition, seeks assistance from a better-equipped facility at the same or higher level (Bashar et al., 2019). This system is designed to prompt patients to initiate care at the primary level, progressing to higher care levels based on their needs, thereby reducing costs for caregivers and patients. Consequently, a referral system is pivotal for effective disease management in any healthcare setting.\u003c/p\u003e\n \u003cp\u003eThis system is generally pyramidal, with a broad base of primary healthcare centers (PHC), fewer secondary care centers in the middle, and even fewer tertiary care centers at the apex (Bhattacharya, 2017). Bhattacharya argues that the ideal public sector progresses through sub-centers (SC), PHCs, Community Health Centers (CHC), sub-districts (SD), District Hospitals (DH), tertiary facilities in medical college hospitals (MC), and super-specialty hospitals (SH). Thus, appropriate referrals at each stage are imperative for patients to reach cancer facilities.\u003c/p\u003e\n \u003cp\u003eIt was observed that certain patients opted to use the public sector referral system, which is an appropriate pathway for individuals seeking healthcare services for all other illnesses. This option is particularly attractive to HM patients because of its availability and accessibility, as well as the assurance of minimal treatment costs despite multiple consultations. However, the extended waiting time for appointments stems from inadequate disease detection at primary and secondary health care facilities.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eA Father\u0026rsquo;s journey of from Local Care to Government tertiary specialty (Cancer) Hospital\u003c/strong\u003e:\u003c/p\u003e\n \u003cp\u003eHM Patient Sneha demonstrated compliance with the designated referral system by reaching the nearest Primary Healthcare (PHC) facility following the onset of symptoms. Subsequently, the patient was directed to a Government Teriarry (District Hospital)and then to a government tertiary (general) hospital, where the diagnosis of HM was confirmed. A referral to a cancer hospital was followed, resulting in a total delay of 67 days from the patient\u0026apos;s perspective, as shown in the subsequent HMTSB diagram (Fig. 1.5). In the mean time the patient visited 6 health facilities and only got a diagnosis at the 6th facility.\u003c/p\u003e\n \u003cp\u003eA case involving the father (key informant) of a 4-year-old XXX(name) sneha patient with Acute Lymphoblastic Leukemia (ALL) elucidated the treatment-seeking (TS) pathways.\u003c/p\u003e\n \u003cp\u003eFather stated;\u003c/p\u003e\n \u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003eWhen she was around 2.5 years old, I noticed some spots on her face and nose accompanied by a high fever. The spots were white. We consulted a local practitioner in the village. Although not medically certified, he was a go-to person for all of our villagers because of proximity. He advised us to visit the nearest primary healthcare center. However, her condition did not improve, and the fever persisted. Consequently, we sought help at a district hospital where the fever was initially managed. However, 22 days later, fever resurfaced. Upon revisiting the district hospital, the patient was informed of a reduced blood count. Although the fever subsided after the consultation, it returned after 20 days. Distance to the hospital impeded timely medical attention. Gradually, her abdomen swelled and her complexion turned pale. Opting for closer medical aid, we decided to visit a neighboring district hospital. Arranging transportation, we reached the facility where she received a blood transfusion and recommended a bone marrow test. However, the necessary facilities for the test were unavailable, prompting referral to a tertiary government hospital. After a seven-day hiatus, we managed to visit the hospital where a bone marrow test was conducted, revealing Acute Lymphoblastic Leukemia (ALL). A further referral to a cancer hospital was made. Financial constraints forced us to delay visits until funds were arranged. Fifteen days later, we reached the cancer hospital.\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eFrom the narrative, it is discerned that the total duration from symptom onset to reaching the cancer hospital spans 67 days. The journey to the cancer hospital, spanning 67 days, reflects a series of delays influenced by cultural trust in local practitioners, systemic healthcare barriers, and financial constraints. Initially, the family sought advice from a village-based, non-certified practitioner due to proximity and trust, a common practice in rural settings. As the child\u0026apos;s condition worsened, they moved through a primary healthcare center and two district hospitals, facing challenges like the absence of specialized testing facilities and long distances that hindered prompt care. Economic difficulties further delayed their ability to quickly access the required specialized treatment. In total, the family visited four different healthcare facilities before reaching the cancer hospital, where the diagnosis of Acute Lymphoblastic Leukemia (ALL) was finally made, illustrating the multifaceted obstacles faced in securing timely medical intervention.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\n \u003ch2\u003e4.3 Private Sector Treatment not only Delays Cancer Diagnosis but also can be Catastrophic\u003c/h2\u003e\n \u003cp\u003eThe third categories of patients are those who initially sought care at a private facility after symptom onset. It was found that HM patients often turned to private facilities due to the unavailability or inaccessibility of public facilities at the pre-diagnosis stage. Even when public care was an option, their perception of superior treatment drove them to private facilities. It has emerged that private sector providers at the secondary level continue treating patients without offering a correct diagnosis or referral for a longer period. Patients transitioned from one private facility to another to seek better care, consequently extending the total delay in accessing treatment at cancer facilities for several months. This delay was notably extended for Vivek with a total duration of 425 days before reaching the cancer facility, as elaborated below.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eA Mother\u0026apos;s Journey of hope shifting from Private to Public facility\u003c/strong\u003e:\u003c/p\u003e\n \u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003eA case recounted by the mother (key informant) of a 12-year-old vivek with Acute Lymphoblastic Leukemia (ALL) shed light on treatment-seeking behavior (TSB) pathways. Her decision to initially rely on private sector care exacerbated the disease conditions, ultimately leading them to seek treatment at a public cancer facility.\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cem\u003eMotherstated\u003c/em\u003e:\u003c/p\u003e\n \u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003eWhen he was ten years old, his left elbow pain started. Then, I took her to the private clinic near our area, as it was good compared to the PHC in terms of treatment of the patient. He advised him to undergo radiography. We followed this along with some medications. Then after 4\u0026ndash;5 months, right elbow pain started. This time, I used homely treatment for his pain. I used \u0026ldquo;Kantamorris pants and raw rice\u0026rdquo; in his pain area. However, the pain did not resolve. After a certain amount of time, his right leg started. He didn\u0026rsquo;t walk properly. He had fever with vomiting at that time. This time, I took him to another doctor (private clinic), as the previous one\u0026rsquo;s medication did not work. He received X-rays and painkiller injections for pain relief and some medicine for fever. The doctor suggested administering painkiller injections for six months. My son followed it. During this time, his elbow pain persisted. Although he followed the advice, the pain did not stop. His blood count was also decreased. I took him to another private clinic, as advised by the villagers, and he gave me some units of blood, which resulted in the improvement of my son\u0026rsquo;s blood count. He recommended treatment at another large private hospital. It was costly for us. They were charging 25k/month. We stayed for nearly one month for his treatment. Bone marrow tests revealed acute lymphoblastic leukemia. Then we came back home and arranged some money after around 7 days came to cancer hospital.\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eFrom this narrative, it is evident that the total duration from symptom onset to reaching the cancer hospital spans 425 days with more than five hospitals visited before reaching a cancer hospital.\u003c/p\u003e\n \u003cp\u003eThe narrative reveals a 425-day delay from the initial symptoms to the diagnosis at a cancer hospital, involving visits to over five medical facilities. The journey began with a visit to a local private clinic, favored for its perceived superiority over the nearest Primary Health Center (PHC), where radiography and medications were first prescribed. As pain progressed to the right elbow and then the leg, combined with fever and vomiting, home remedies were initially attempted, followed by consultations at two additional private clinics for X-rays, pain relief injections, and medications. Despite these efforts, persistent elbow pain and declining blood counts led to another clinic visit, where a blood transfusion temporarily improved the condition. Ultimately, a referral from a large private hospital\u0026mdash;after a costly stay and a bone marrow test\u0026mdash;confirmed acute lymphoblastic leukemia, prompting the final move to a cancer hospital after a week of financial preparation. This protracted timeline underscores the complex interplay of financial constraints, reliance on local medical advice, and the iterative search for effective treatment across multiple healthcare providers.\u003c/p\u003e\n \u003cp\u003eThe private sector\u0026apos;s disruptions and diversions significantly delayed treatment for patients, as observed in the treatment-seeking pathways of patients 9 and 17, owing to the ineffective referral system within the public health sector. Consequently, by the time these patients reached the cancer facility, their condition had significantly deteriorated. Examining the treatment-seeking pathways of patients 9 and 17 revealed total delay durations of 92 and 2370 days, respectively, as further discussed from the patients\u0026apos; perspective below.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eA father\u0026rsquo;s quest for diagnosis through public to private care and back again\u003c/strong\u003e:\u003c/p\u003e\n \u003cp\u003eIn the first illustration, the father of Rohan an 8-year-old NHL patient recounts the treatment-seeking pathways:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eFather) stated\u003c/em\u003e:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;At the age of 4 years, he developed swelling on the left side of his neck. Within 2 months, the swelling enlarged significantly, making breathing very painful. Fever also ensued, and he struggled with food intake. I took him to a government tertiary hospital a few days after the onset of fever. They were unable to detect the issue and were merely prescribed medications. The medications had no effect; therefore, some villagers suggested a private facility, citing better treatment. Fifteen days later, when the fever returned, I took him to the private facility. They charged a hefty fee for the treatment which yielded no improvement. He received treatment there for two months. As the expenses escalated, they referred us to a Tertiary Government hospital. This hospital then referred us to Sishubhavan (Government Pediatric Hospital), which we visited seven days later due to its distance from home. They conducted a biopsy but couldn\u0026rsquo;t confirm the diagnosis in the initial report. They further referred us to a government cancer hospital. We arrived there 10 days later, where another biopsy was conducted, confirming the diagnosis as NHL.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eFrom this case, it was found that the total time taken from the onset of the first symptoms to the cancer hospital was 92 days.\u003c/p\u003e\n \u003cp\u003eAnalyzing the narrative provided, the progression to a confirmed diagnosis of Non-Hodgkin\u0026apos;s Lymphoma (NHL) reveals critical insights into the reasons for delay and the multiple healthcare facilities visited. Initially, the child was taken to a government tertiary hospital, but when no diagnosis was made, local advice led the family to seek care at a private facility, indicating a common belief in the superior quality of private healthcare. Despite this, the treatment received at the private facility was ineffective and financially burdensome, prompting a referral back to the public healthcare system, specifically to a government pediatric hospital (Sishubhavan), noted for its specialization in child health. The delay in visiting Sishubhavan, attributed to its distance, and the subsequent need for further referral to a government cancer hospital highlight systemic barriers in healthcare accessibility and the complexities of navigating between public and private healthcare sectors. The entire journey from symptom onset to reaching the cancer hospital spanned 92 days, encompassing visits to four distinct healthcare facilities. This case underscores the challenges faced by families in accessing timely and effective diagnosis and treatment, exacerbated by economic constraints and systemic inefficiencies within the healthcare landscape.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eA Father\u0026apos;s Battle; misdiagnosis from Private care to government tertiary specialty (cancer) care\u003c/strong\u003e:\u003c/p\u003e\n \u003cp\u003eIn another illustration, the father of a 10-year-old Bibhu HL patient detailed the treatment-seeking pathways and how they disrupted and exacerbated his son\u0026apos;s health conditions:\u003c/p\u003e\n \u003cp\u003eThe father explained the TSB.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;At age three, he began crying excessively, and there appeared to be some swelling on the right side of his neck, accompanied by pain and fever. I took him to the nearest doctor\u0026apos;s office (a private clinic). The symptoms didn\u0026rsquo;t last long, and the fever subsided. At age 9, the node on his neck and underarm region enlarged, resembling \u0026apos;patchouli\u0026quot;. I admitted him to a government tertiary hospital. The doctor dismissed it as typical. No effective treatment was provided; therefore, we returned home. The swelling persisted. The fever recurred along with severe weakness. At that time, I had taken him to a private clinic. They provided medication but did not change it. When fever recurred after 7 days, I took him to another private clinic where the doctor prescribed medication and returned home. Nodal swelling and fever re-emerged after 2 months, prompting another visit to a private clinic. It took approximately six months to move from one doctor to another until one doctor (private clinic) referred us to the cancer hospital. Upon our arrival, a biopsy was suggested by the doctor, which confirmed the diagnosis as Hogdgkin Lymphoma\u0026quot;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eFrom this case, it was found that the total time taken from the onset of the first symptoms to the cancer hospital was 2370 days.\u003c/p\u003e\n \u003cp\u003eThe father\u0026apos;s narrative underscores a prolonged journey over approximately 6.5 years from the initial emergence of symptoms to the diagnosis of Hodgkin Lymphoma at a cancer hospital. Key factors contributing to this extended timeline include initial misinterpretation of symptoms by healthcare providers, which led to underestimation and inadequate responses to early warning signs. The journey involved transitions between various healthcare settings, starting from a local private clinic to a government tertiary hospital and back to several private clinics, before a referral to a specialized cancer hospital was made. This iterative process of seeking care from multiple providers reflects challenges in obtaining an accurate diagnosis and effective treatment, exacerbated by the healthcare system\u0026apos;s fragmentation. The eventual diagnosis followed a specific referral to a cancer hospital, suggesting a significant delay in recognizing the need for specialized evaluation. This case highlights critical gaps in the initial healthcare response to cancer symptoms, the impact of healthcare system navigation difficulties on timely diagnosis, and the importance of streamlining referral pathways to specialized care for serious conditions.\u003c/p\u003e\n\u003c/div\u003e"},{"header":"4. Discussion: Treatment seeking Behaviour Pathways of Cancer patients","content":"\u003cp\u003eThe treatment seeking behavior pathways of haemetological malignancies as a category of cancer patients reveal the contextual nature of factors that are relevant in Cancer treatment. Further, the fact that the process of treatment seeking and the various factors that contributed through the stages of treatment seeking reveal that there is a need to examine the treatment seeking behavior of cancer patients into three different stages: viz. the prediagnosis phase, the diagnosis and treatment phase in cancer hospital and third and finally is the follow up and continuous treatment phase. Here, using the cultural epidemiology framework by Weiss which attribute experience and meaning of cancer patients, it is important to understand how the perception about symptoms and the pattern of distress itself triggers the type of treatment sought. A conceptual framework that emerges from the experience of patients depicts the complex nature of TSB of cancer patients as shown in the fig (fig).\u003c/p\u003e \u003cp\u003eWe closely examined the treatment-seeking behavior (TSB) pathways of patients with hematological malignancies (HM), focusing on the patient's perspective within their socio-cultural context. TSB is not merely a series of actions taken to address health problems; it is deeply intertwined with the identity of individuals, families, and communities, reflecting their value in healthcare on a daily basis (Liyew et al., \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2022\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eContrary to traditional views that consider TSB as the culmination of several decisions into a final choice of a health facility, it has been argued for its recognition as a process (Mackian, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2002\u003c/span\u003e) This is pertinent in cancer care, where treatment is of prolonged duration, and specialized diagnostic and treatment centers are scarce. This behavior spans a spectrum of activities from familial consultations till it finally reaches professional medical treatment. Applying this framework, we sought to understand the TSB of patients with hematological malignancies (HM) at two distinct levels. Initially, we investigated TSB by examining the personal illness experiences of patients and the meanings they attributed to these experiences, including their emotional distress and the causes they perceived. Subsequently, we considered how these personal experiences and meanings interact with the health system across the care continuum, considering the time elapsed from symptom onset to arrival at a cancer treatment facility. This included the pre-diagnosis phase, marked by the emergence of symptoms and the steps taken to identify their cause, and the cancer phase, which began with the diagnosis of HM and culminated in engagement with a cancer care facility.\u003c/p\u003e \u003cp\u003eFurther examining the treatment seeking behavior pattern of HM patients, three specific patterns were found, first is that those patients getting ready referral from public sector pediatric hospital which is the best of the existing scenarios, wherein the tiemly referral and public consultation has reduced the burden of patients significantly. Second is that of those followed the traditional government referral system, that has delayed the prompt diagnosis but has not created financial hardships for the patient. The important question here is that how can cancer treatment related referral be streamlined in the public sector health care delivery at the level of primary and secondary level facilities. The third and most distressing experience emerge from those who sought treatment in the private facility and that too for a very long period than the rest, which not only delayed the valuable time for cancer treatment but also drained all the resources of the families due to higher cost and unaffordable private sector. The examination of treatment-seeking behavior in patients diagnosed with hematological malignancies (HMs) underscores the importance of an effective referral system within the public health sector. The findings reveal a trend toward the private sector due to the inadequacies and deficiencies of the envisioned referral chain (comprising Primary Health Care Centers (PHCs), Community Health Centers (CHCs), District Hospitals (DHs), tertiary public hospitals, and designated cancer hospitals) within the public health domain. This trend is further exacerbated by the allure of supposedly superior medical counseling offered by private entities. Despite strict adherence to recommended guidelines, patients did not experience any improvement in their health states; in fact, they were further burdened by the financial demands of exorbitant private healthcare costs. As a result, the detours created by private sector interactions not only complicate the treatment-seeking trajectory but also exacerbate the temporal and financial burdens of cancer care\u003c/p\u003e \u003cp\u003eUpon retrospection of respondents' treatment and care decisions, a common sentiment was observed. The narratives of the respondents centered around a hypothetical scenario wherein prior knowledge of the existing public cancer hospital and a comprehensive understanding of the disease would have led them directly to the appropriate cancer facility, instead of the circuitous and burdensome journeys they underwent. This agreement highlights the adverse impact of information asymmetry and the resulting missteps in treatment seeking.\u003c/p\u003e \u003cp\u003eThe necessity for a robust referral system for cancer care within the public health framework is evident in these patient narratives. The primary objective of establishing such a referral infrastructure is to expedite the initiation of cancer treatment, enhance trust and reliance on the public health system, and strengthen the capacity of the public health system to provide comprehensive cancer care. This aligns with the broader discourse in health systems strengthening, where timely access to diagnosis and treatment significantly impacts the trajectory and outcomes of chronic diseases such as cancer (World Health Organization, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2017\u003c/span\u003e). The creation of an informed treatment-seeking climate, supported by a well-coordinated referral network, is crucial for overcoming existing barriers to cancer care and fostering a more responsive and patient-centric healthcare system.\u003c/p\u003e"},{"header":"5. Conclusion","content":"\u003cp\u003eThe TSB for cancer reveals that Cancer care implies a complex of events that start from the first onset of symptoms related to that which go unnoticed. There is a need to acknowledge and recognize the unnoticeable and unknown stages of cancer treatment. This gets severe in a context of poor access to health care facilities and failure to offer specialist care at appropriate levels. The complexity of treatment seeking behavior for Cancers will be revealed only when the concept of treatment seeking behavior is conceptualized and studied as a process. The study reveals the need to use various phases of cancer related studies on treatment seeking behavior, As the disease care for cancer is long term and the diagnosis of the disease requires critical and high-end technology, it is unique to only cancer hospitals and centers. This implies that a final confirmation of cancer diagnosis is not readily and easily available to common patients, especially in the rural and urban poor. It is a characteristic feature that most cancer hospitals are in the public sector and those affordable to the poor are rendered by the public sector.\u003c/p\u003e \u003cp\u003eThere is a need to understand the TSB for cancers in its entire complexity. What the current study reveals is that the doctors in the public sector facility with a pediatric specialty were able to suspect those patients with cancer much earlier and quicker and hence always refer for a confirmed diagnosis to a cancer hospital. This is true from the experiences of patients who initially took treatment from primary level PHC as well as those taking treatment from a government tertiary level facility (district hospital). In both situations, the duration of reaching the specialist tertiary facility and thus obtaining a final diagnosis of cancer was shorter than that of patients who initially sought treatment from private sector facilities. Those chosen private sector facilities as the first choice of treatment were subjected to treatment for a longer period. Additionally, the lack of accessibility to public sector and affordability of private sector health care for people in general and more so in cancer context is revealing. However, patients still face challenges such as barriers to access, lack of information and support, and cultural and linguistic barriers. More research is needed to fully understand the possibilities of developing SOPs for referral of cancer care and identify best practices for implementing and maintaining them. This research can also identify areas for improvement, such as addressing barriers to access and improving communication between primary care providers and specialized cancer care centers.\u003c/p\u003e"},{"header":"6. Limitations of The study","content":"\u003cp\u003e \u003cdiv class=\"BlockQuote\"\u003e \u003cp\u003eSince the researcher relied on information reported by patients, there may be recall bias. However, efforts were made to minimize the effects of recall bias by putting multiple and leading questions.\u003c/p\u003e \u003c/div\u003e \u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eConflict of interest\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no conflicts of interest related to the content of this manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSource of Funding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis research received no external funding.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to express their sincere gratitude to the patients with cancer who participated in this study. Their contributions and willingness to share their experiences are invaluable to this research. We extend our sincere gratitude to the AHPGIC Cancer Hospital Authority for granting us the necessary permission to conduct this study and for their unwavering support throughout the research process. Without cooperation, this study would not have been possible. We would also like to express our appreciation to the staff of the hospital for their help and support throughout the research process.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eKG and MG contributed to the design and implementation of the research. KG analyzed the results, and wrote the manuscript with the guidance of MG. The original idea was conceived by KG and MG. The final review of the manuscripts done by MG.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData Access Statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe raw data that support the findings of this study cannot be shared publicly due to privacy concerns and the lack of participant consent for such sharing. However, the data are available from the corresponding author, [KG], upon reasonable request. Any data sharing will be subject to strict conditions to ensure the privacy and confidentiality of the participants, in accordance with the ethical guidelines approved by the hospital authority.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eDobson, C., Rubin, G., Murchie, P., Macdonald, S., \u0026amp; Sharp, L. (2020). 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Delays in diagnosis in young patients with leukemia and lymphoma. \u003cem\u003eJournal of Clinical Oncology\u003c/em\u003e, \u003cem\u003e37\u003c/em\u003e(15_suppl), e18138\u0026ndash;e18138. https://doi.org/10.1200/JCO.2019.37.15_suppl.e18138\u003c/li\u003e\n \u003cli\u003eWorld Health Organization. (2017). \u003cem\u003eEarly cancer diagnosis saves lives, cuts treatment costs\u003c/em\u003e. https://www.who.int/news/item/03-02-2017-early-cancer-diagnosis-saves-lives-cuts-treatment-costs\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Haematological Malignancies, Treatment-Seeking Behavior, Public Sector Referrals, Continuum of Care","lastPublishedDoi":"10.21203/rs.3.rs-6878371/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6878371/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eIn most diseases, treatment-seeking behavior (TSB) often overlooks the diagnostic phase, focusing more on treatment and management. However, in the context of hematological malignancies, the diagnostic process is crucial and has a significant impact on patient outcomes. This study examines TSB in patients with leukemia and lymphoma, emphasizing the period from symptom onset to diagnosis. Employing narrative inquiry and in-depth interviews with 25 patients, the study thematically analyzes using AtlasTi.8 the challenges faced during diagnosis. The findings reveal the critical role of public sector facilities in referrals and the dominance of private sector pathways, highlighting the need for improved diagnostic access and referral systems to enhance cancer care.\u003c/p\u003e","manuscriptTitle":"Treatment seeking behavior pathways of Cancer patients in public and private sector facilities: A Qualitative inquiry","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-17 07:30:50","doi":"10.21203/rs.3.rs-6878371/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"3d45bafd-8ab1-4a96-9972-02e3f9403380","owner":[],"postedDate":"June 17th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-06-17T07:30:52+00:00","versionOfRecord":[],"versionCreatedAt":"2025-06-17 07:30:50","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6878371","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6878371","identity":"rs-6878371","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}