“Mitigating Cancer Pain: What else Matters?”—A Qualitative Study into the Needs and Concerns of Cancer Patients in Sri Lanka

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Skip to main content Home About Submit ALERTS / RSS Search for this keyword Advanced Search “Mitigating Cancer Pain: What else Matters?”—A Qualitative Study into the Needs and Concerns of Cancer Patients in Sri Lanka View ORCID Profile NP Edirisinghe , PTR Makuloluwa , AATD Amarasekara , CSE Goonewardena doi: https://doi.org/10.1101/2024.04.10.24305649 NP Edirisinghe 1 Department of Fundamental Nursing, Faculty of Nursing, University of Colombo , Sri Lanka 2 Faculty of Graduates Studies, University of Sri Jayewardenepura , Sri Lanka Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for NP Edirisinghe For correspondence: keenirosha{at}yahoo.com PTR Makuloluwa 3 Department of Clinical Sciences, Faculty of Medicine, General Sir John Kotelawala Defence University , Sri Lanka Find this author on Google Scholar Find this author on PubMed Search for this author on this site AATD Amarasekara 4 Department of Nursing and Midwifery, Faculty of Allied Health Sciences, University of Sri Jayewardenepura , Sri Lanka Find this author on Google Scholar Find this author on PubMed Search for this author on this site CSE Goonewardena 5 Department of Community Medicine, Cancer Research Center, Faculty of Medical Sciences, University of Sri Jayewardenepura , Sri Lanka 6 Cancer Research Center, Faculty of Medical Sciences, University of Sri Jayewardenepura , Sri Lanka Find this author on Google Scholar Find this author on PubMed Search for this author on this site Abstract Full Text Info/History Metrics Data/Code Preview PDF Abstract Objectives The overall experience of cancer pain reflects patients’ needs and concerns. Therefore, a thorough understanding of the patient’s needs and concerns is crucial to implementing satisfactory pain outcomes. This study aims to explore the needs and concerns of patients with cancer pain in Sri Lanka. Methods This study employed a descriptive qualitative approach among purposively selected patients with cancer and registered at the pain management unit. Patients eighteen years older with cancer-related pain were recruited. Noncancerous pain and those with psychological disorders, and brain metastases were excluded. Twenty-one semi-structured interviews were conducted until data saturation using a semi-structured interview guide, each lasting 30-60 minutes. Data were analyzed by Graneheim and Lundman’s content analysis method. Results The study primarily involved participants aged 51-60 Sinhalese Buddhists. It highlighted two main themes: ‘Changes in normal lifestyle’ and ‘Needs and expectations’. The ‘Changes in normal lifestyle’ theme included subthemes like ‘Functional limitations’, ‘Emotional reactions’, ‘altered interpersonal relationships’, and ‘Socio-financial problems’. The ‘Needs and expectations’ theme covered desires for a ‘Pain-free life’, a return to a ‘Normal lifestyle’, and the ‘Need for a caregiver’. The findings emphasize that the most significant issue for cancer patients is the disruption to their normal lifestyle due to various challenges, while their primary need is to live without pain. Conclusions ‘Life without pain’ is a cancer sufferer’s greatest need while ‘changes in normal lifestyle’ owing to bio-psycho-social-spiritual problems is their primary concern. 1. Introduction Pain is a major cause of cancer-related suffering. Therefore, a thorough understanding of patients’ needs and concerns is crucial to implementing satisfactory pain outcomes. According to the World Health Organization (WHO), cancer killed almost 10 million people in 2020, or one in six [ 1 ]. According to GLOBOCAN 2020, 29,604 new cases were reported in Sri Lanka in 2020 [ 2 ]. Pain affects 66% of oncology patients [ 3 ] and affects all aspects of life. Cancer pain significantly impacts patients’ emotions, cognitive performance, daily activities, and family and social interactions. Cancer patients may live longer due to early detection and advancements in treatment modalities [ 4 ]. On the other hand, patients are subjected to uncomfortable diagnostic and therapeutic interventions, increasing the risk of experiencing pain. Untreated cancer pain is prevalent in Asia, at 59% compared to 40% in Europe and 39% in the USA, despite advances in cancer therapy and increasing access to supportive care [ 5 ]. Pain is still widely misunderstood, under-reported, and frequently undertreated, resulting in significant distress for the patient and his or her close relatives. Cancer-related pain can occur before diagnosis, during treatment, and at the end. Pain is common and may persist, return, or change. Long-term disease and therapeutic impacts affect even cured individuals. Advanced cancer patients may mistake increased pain for disease progression, creating silent fear, grief, and lower quality of life. Patients, especially cancer survivors, may also need unnecessary hospitalizations, outpatient visits, or long-term psychosocial treatment due to untreated or poorly controlled pain. Studies show that cancer pain is poorly controlled and that effective pain medicines are not used for optimal pain relief, despite the well-documented causes of poor pain therapy [ 6 ] Insufficient pain assessment is the most common mistake in pain management, even though pain can be detected through self-reporting, physiological testing, and behavioral observation [ 7 ]. Cancer pain often causes biopsychosocial issues; hence many studies stress holistic care [ 8 ]. Cancer patients’ participation in research helps them understand cancer pain. Their thoughts, experiences, and ideas emphasize life with cancer pain. According to studies conducted in Brazil, China, Taiwan, Korea, and Turkey, pain has adverse effects on appetite, sleep, fatigue, daily activity, general appearance, mood, family support, financial status, walking ability, relationships with others, enjoyment of life, nutrition, mobility, emotional status, and overall QoL of patients [ 9 – 13 ]. In a study among 5084 adult patients, 69% reported pain-related difficulties with everyday activities [ 14 ]. Patients with pain have distinct demands, such as pain alleviation, reassurance from their healthcare provider, an acceptable degree of functioning, and the capacity to live a normal lifestyle. However, it is important to realize that everyone reacts to pain differently depending on their personality, pain threshold, expectations, and requirements. Therefore, pain management must also be individualized [ 15 ]. Further, everyone needs to find solutions to the problems mentioned. The primary goals of a cancer-care system are to reduce cancer-related deaths and improve survivors’ quality of life (QoL). The only approach to enhance these patients’ QoL is to acknowledge the pain and its impact on their ability to live a pleasant and quality life. Sri Lanka, a Low Middle-Income Country, has inadequate facilities for recognizing pain and its associated phenomena, and any improvement in these facilities can reduce the burden of cancer pain on people, families, and society. Cancer pain is a widespread and debilitating feature of the oncology journey, affecting the physical, emotional, and social well-being of patients. Although there have been improvements in medical therapies, there is still a lack of complete knowledge of the essential needs and concerns associated with cancer pain. While the importance of addressing cancer pain has been widely recognized, there is still a lack of complete understanding of patients’ needs and concerns, particularly in resource-constrained countries. Sri Lanka, as a low-middle-income country, confronts difficulty in successfully detecting and controlling cancer pain, emphasizing the importance of study in this field. The study aims to promote understanding of cancer pain by shedding light on the substantial needs and issues related to it in Sri Lanka. In light of these factors, it is vital to emphasize the significance of performing this study with a qualitative method. Qualitative research approaches offer unique insights into patients’ experiences, viewpoints, and unmet needs, providing a rich understanding of the complexity surrounding cancer pain. By incorporating a qualitative approach, this study intends to capture the intricacies of patients’ experiences with cancer pain in Sri Lanka, ultimately driving the creation of more effective and patient-centered interventions. 2. Methods 2.1 Study design A qualitative descriptive study was conducted approach to delve into the lived experiences of individual needs and major concerns of patients with cancer pain in Sri Lanka. This study adopts a constructivist perspective, acknowledging the subjective nature of cancer experiencing pain and seeking to explain and comprehend the many interpretations attributed to these experiences by individuals. Data was collected from November 2018 to April 2019. 2.2 Study setting and participants The study participants included patients aged 18 and older with cancer-related pain (pain score of three or more on a Numerical Rating Scale) who attended Apeksha Hospital’s Pain Management Unit (PMU) in Maharagama. All participants understood and spoke Sinhala and gave informed written consent. Patients with non-cancerous pain, frail/mentally unfit, or disoriented with evidence of brain metastases were excluded. Purposive sampling selected patients from various age groups, sexes, educational levels, cancer types, and treatment methods. 2.3 Study instruments The interviews followed a semi-structured interview guide. The guide’s concepts and question areas were determined based on a comprehensive literature review and subsequently revised by subject specialists. The semi-structured guide was pre-tested on five in-patients with cancer pain. This helped identify difficult probing questions and determine if the interviewer guide received the desired range of responses. The timing of the interviews was determined, and questions about transcription were also clarified. The guide was revised after the pre-test. 2.4 Data collection The principal investigator (PI), a registered nurse, and an experienced qualitative researcher conducted semi-structured interviews (n=21) until theoretical data saturation was attained with the use of an interview guide. The interviewer introduced herself and described the purpose of the interview. The informant was assured that the information would be treated with confidentiality and that his/her name would never be identified in any notes taken and written reports. It was also stressed that he/she was allowed to express any opinion and that no judgment would be made. Care was taken to avoid using the word ‘cancer’ or any other word with a similar meaning to minimize the distress for the informant. The phrase ‘the disease treated at this hospital’ was used instead. The informant acknowledged that clinical staff would not be informed until indicated. In such cases, the informant’s consent was sought. Informed written consent, including recording the interview, was obtained from each participant before the interview. The interviews were conducted in a quiet room at the pain clinic or in a separate area in the ward where the participants felt comfortable, and their privacy was ensured. Nonverbal cues were noted. Throughout the interview, the interviewer was open and nonjudgmental. Finally, the interviewer summarized the conversation and assessed the respondent’s validity. The interviews lasted 30-60 minutes. 2.5 Data analysis Qualitative data were analyzed using content analysis described by Granehiem and Lundman [ 16 ] and reported according to the checklist for qualitative studies Standards for reporting qualitative research (SRQR). Data collection and analysis were simultaneous processes. Transcripts were read numerous times to comprehend and establish basic meaning categories and codes. After familiarizing myself with the data, the initial codes were created. The transcripts were generated codes, subcategories, categories, and themes. Subcategories and 2.6 Trustworthiness The data’s reliability was assessed using Guba and Lincoln’s guidelines [ 17 ]. Internal validity was promptly checked on transcripts. The PI built rapport with study participants throughout data collection. To assure comparability, two participants received transcripts and codes for member checks. The units of meaning, codes, subcategories, categories, and themes were accepted by external qualitative research experts, who provided comments that were integrated into the final analysis. Meaning units and initial codes were derived from two external reviewer interviews. The selected interviews, codes, and categories were also shared with two non-study cancer pain patients, who both agreed that the codes accurately characterized their experiences. 2.7 Ethical considerations Ethical approval was granted for this study by the Ethics Review Committee (ERC), Faculty of Medical Sciences, University of Sri Jayewardenepura, Sri Lanka (App No: 32/17). Comprehensive details about the study’s aims, procedures, and significance were shared with the participants before gathering data. All participants gave their informed consent, highlighting the voluntary nature of their involvement, their freedom to exit the study at any point without any consequences, and the guarantee that their information would remain confidential. Rigorous precautions were taken to maintain participant privacy and anonymity. Personal or identifiable information obtained during the research was treated with the utmost confidentiality, securely stored, and made available only to the investigators involved in the study. 3. Results Among the participants (n=21), the majority were Sinhalese and Buddhists in the age group of 51-60 years. Twelve (57.1%) were females, and 16 (76.2%) were married. Most participants had a monthly salary of less than LKR.5000, and roughly 47% had completed Grades 6-11. Among the individuals, 57% reported pain for three months or more, and 52% had cancer for less than a year ( Table 1 ). During data analysis, two primary themes emerged about cancer patients’ needs and concerns. Each theme contained sub-themes with meaning units. View this table: View inline View popup Table 1: Demographic characteristics of the study participants (n=21) 3.1 Theme 1: Changing normal lifestyle Advanced cancer patients’ daily lives are affected by pain. The subthemes were “functional limitations,” “emotional reactions,” “altered interpersonal relationships,” and “socio-financial problems.” Cancer-related pain affected all respondents. Physical, social, economic, and psychological distress were noted by patients. They regretted their pain, which left them depressed and hopeless most days. Table 2 lists the meaning units, codes, and categories for Theme 1: Changing normal lifestyle. View this table: View inline View popup Table 2. Theme 1: Changing normal lifestyle 3.1.1 Functional limitations According to participants, cancer pain had a negative impact on their everyday activities. As their condition advanced, they could not adjust their lifestyle to obtain better pain relief. Almost every patient stated that cancer pain had a detrimental impact on their functional level, daily activities, and sleep. They were unable to eat, walk, or cook. The pain made sitting, standing, or rolling incredibly uncomfortable. “I cannot do housework, and I cannot sleep; I did all the housework. They are all ruined now”. (P-01) It was said that the lack of trigger and energy made mobility difficult. Fatigue led to a sedentary lifestyle. For example, numerous patients reported losing interest in or taking longer to complete chores in general. “Because of this pain, I cannot do anything… I cannot do anything when the pain comes. I get bored easily of everything.” (P-14) Sleep deprivation is another significant issue connected with cancer pain. Cancer pain results in poor quality sleep that is shorter in duration and interrupted frequently. “I cannot sleep when I have pain, and it interferes with sleep. I fall asleep when the pain goes away, and it may be daytime or night… If there is pain, I will never fall asleep…”. (P-07) 3.1.2 Emotional reactions Almost all reported emotional alterations. Tearfulness, depression, anxiety, anger, and irritation were feelings not experienced previously. Many psychological issues were directly or indirectly linked to pain and disease. Pain has made some feel unhappy, scared, helpless, and hopeless. “I cannot do anything now… Because of this leg [showing her leg]. I am in a very miserable situation now…. Worried …. I am very sad…. (Crying)…. I cry most of the time…” (P-01) Some individuals stated they could not concentrate and forget easily when the pain arises. “Sometimes, I get irritated with pain. Other than running here and there, I forget what I need to do…. I do not feel like doing anything”. (P-15) Most individuals feel angry as the pain rises. They do not like to talk with anybody when the pain increases, and they are worried about their life thinking about how it was past and present. “I feel angry when someone talks when I am in pain. I have a concussion, and I cannot sleep. Annoying, no consolation. It is heartbreaking to see how I lived for so long and living now. How it was then, how it is now …” (P-18) Patients in this study reported fatalistic thoughts that there was nothing they could do to escape cancer pain or death or that they would prefer to die to be free of pain. They tend to cry and think repeatedly, and some have had suicidal ideations. “Now the pain really got worse and worse. It looks like I cannot wait any longer. Yes, I jumped off the roof once. I cannot bear the pain… That is so hard.” (P-02) 3.1.3 Interrupted interpersonal and social relationships The pain has affected most participants’ relationships with spouses, relatives, and outsiders. Some respondents valued the aid of friends, family, neighbors, and the workplace. Many described how important it was to maintain cherished relationships and how difficult it was when pain interfered, whether due to the need for physical assistance or seeing their carers distressed: “There are times when I get angry. I only see her [wife] tears when I scold her. I feel so sorry for her … so there is nothing to do, so much pain … then I say sorry. However, although I apologize, she might have been hurt a lot. We have been together with our family for 25 years now. She knows my helplessness. The heart feels that inner pain. So such incidents happen, I apologize to God, ‘God forgives me, I have done something like this from my mouth to my wife.” (P-16) Some patients fear their sickness. Pain prevents them from visiting anyone. Due to their discomfort, some informants feared socializing. Below are a few statements by them. “I do not even want anybody to visit me. If I cannot treat or care and not talk to them…” “I do not like to go to any social events, temple, or wedding ceremonies since I cannot be bemoaning there. I feel my sight might be an unlucky sign. So, if I cannot be there without a mess, I do not want to go to such places….” (P-18) 3.1.4 Financial difficulties Pain has affected the lives of most of the participants. Most respondents listed money issues as a major source of concern. The most expensive charges were transportation to the hospital, medicines, and investigations. Religious activities and alternative remedies were also high costs. The issues of high expenses were exaggerated by the poor income generation resulting from the disease, which led to borrowing money. Sometimes family members have to leave work to care for their loved ones. If the victim is the family’s breadwinner, they faced too many problems. “Driving is my job. I cannot do it now. If there is no pain, I can do my job, which is unbearable. I always feel pain. The only problem is the pain” (P-02) Most are incapacitated and need someone to care for them. In the absence of a family member, it was required to hire paid caregivers. “We do not have anybody to be with me [as a caregiver at the hospital]. I have to pay Rs. 2000 (2000LKR) per day to keep a caregiver. From where can I get so much money…? Rs10,000 (10000LKR) if I stay for five days…. [silence for a while]… My younger daughter was about to marry this year. The boy who was about to marry my daughter stayed with me at the hospital for a month, and finally, he lost his job…” (P-09) A woman with lung cancer from a low-income family revealed how she helped her family earn money while she was healthy. However, she is worried because she is not contributing now. “I used to sew carpets. I cannot do it now; Earlier, I was earning something too. However, now I have lost that too. It costs a lot of money for kids to learn. Now my husband has to do everything. So there are many money matters at home”. (P-17) 3.2 Theme 2: Expectations and needs Most participants are unsatisfied with their pain relief and live with pain. Meeting patients’ expectations will undoubtedly result in increased patient satisfaction with care. The challenge was to extract genuine expectations and needs from individuals. Table 3 lists the meaning units, codes, and categories for Theme 2: Expectations and needs. View this table: View inline View popup Table 3. Theme 2: Expectations and needs 3.2.1 Need for a caregiver Many patients felt that the primary caregiver’s job is vital. When a housewife got sick, the other household members had to care for the patient and the housework. Thus, some of them could not continue in their usual jobs. “Mostly, I am alone at home. So, most of the time, there is no one to talk to. My wife looks after me 500% at home… but she cannot lift me. She is not strong enough to lift me. She is somewhat old now too…. she has lots of other household work to do as well….” (P-02) 3.2.2 Spend a normal lifestyle Participants expressed a desire to ‘live normally’ and attend to ‘daily duties,’ such as domestic chores, hobbies, and maintaining relationships with family and friends. These requests emphasized how pain was affecting them functionally, their ability to perform tasks, and in attending to their needs rather than their general health and function. All participants noted the importance of having control of their lives to ensure independent status without burdening the next of kin. Most participants explained what they had lost of their former selves. Participants described the need for a ‘pain-free status’, enabling them to resume their former lives. Many reported how their lives and everyday activities were kept on pause until pain relief was obtained and how they had lost pieces of their previous selves as a result of the pain. “Feeling we have stopped at the same place in our lives these days … because of this pain and disease… All the plans were stuck for a while. The essential thing is a full recovery.” (P-19) 3.2.3 Pain-free life Participants expressed their need for mental and physical well-being with satisfactory pain relief. They expect it to happen either by completely curing the disease, providing satisfactory pain relief or through spiritual means. A significant finding was that participants preferred to present themselves as patients with cancer rather than dying from pain. “The only thing I need is to live without pain… Nothing else is needed… It does not matter if I am dying of cancer … I know that I have to die at some point… What I want is to die without being in pain.” (P-13) “I have everything… I do not want anything. I do not have the temptation on anything. No value of anything to me… I want an immediate cure and get rid of this pain.” (P-05) 04. Discussion Experiencing pain on top of cancer is overwhelming to the patient and the family. While pain management has been designated a priority for cancer patients, to our knowledge, no research has examined the concerns and needs of cancer patients in Sri Lanka. An in-depth study into the needs and concerns of cancer patients may shed light on designing ways to address those requirements and improve pain outcomes. This study provided 21 cancer patients with a voice to discuss their experiences with illness and pain, deepening our understanding. The interview transcripts highlighted a lifestyle change and expectations/needs. The findings reflect how previous life experiences were embedded and interlaced with pain and participants’ daily activities. The current study used a qualitative approach to explore patients’ needs and problems because it was the best way to understand patients’ perspectives and establish an understanding based on their reported problems and needs. Care was taken to include categories of patients who could give more variability to the understanding. Interviews were conducted according to protocol until theoretical saturation was reached. To ensure data consistency and reliability, the same investigator conducted all interviews. These are not just pain-related statistics. The diagnosis of cancer dramatically influences many aspects of quality of life. Thus, the facts mentioned are interconnected. The patients communicated in Sinhalese, and the PI translated their comments into English. While translation might dilute meaning, most of what is described is comparable to what is documented in numerous studies on cancer pain conducted in multiple languages. A major theme of this current study was changing normal lifestyles in terms of physical, social, and psychological elements. The impact of cancer pain on daily life and activities was repeatedly mentioned. However, similar losses were also addressed in relation to cancer, its treatment (chemotherapy), and cancer-related symptoms such as weakness and fatigue [ 18 – 19 ]. A complicated factor was the existence of comorbidities, which contributed to the loss of function. A recent Chinese study found “functional constraints” as a major theme and “daily living activities,” “social communication,” and “work” as sub-themes, similar to ours [ 19 ]. The current study participants’ well-being was affected by their inability to undertake “normal” activities like shopping, walking in the garden, or socializing. The cancer literature shows that pain hinders independence and daily activities [ 20 ]. Social rejection, sadness, and loss of self were described by some cancer patients who lost mobility. They valued family and societal duties and felt less worthwhile without them. However, patients worry about being seen as a burden to their families, not only because of the disease’s costs but also because of the care they receive, which impacts perception and powerlessness. A hospice study in the US found a sense of helplessness regarding pain [ 21 ]. Duggleby (2000) found pain adaptation difficult in 11 participants, 65-year-olds. The pain increased their powerlessness and sorrow [ 22 ]. Thome and colleagues found that cancer pain was linked to death and dying fears in ten Swedish older adults [ 23 ]. Other research found similar worries about pain, illness progression, and pain treatments [ 23 – 24 ]. Participants in the current study ranked ‘living a pain-free life,’ “returning to a normal lifestyle,’ and ‘need for a caregiver’ as their most essential expectations and needs. Survival and pain alleviation were the primary concerns of the participants. Analgesia was the primary concern. The people who participated in the study said pain control was necessary for their well-being. Xu and colleagues [ 19 ] reported pain relief as a top priority among 12 participants with cancer pain in China. Patients resort to religion/spirituality for hope, confidence, and health. Research shows that religion and palliative care are generally beneficial. Religion and spirituality reduce stress and sadness and improve quality of life [ 22 ]. Spiritual care helps patients have hope (88%) and comfort (83%), according to research in Spain. According to the survey, 92.5% of respondents believe spiritual emphasis is vital during this time since it enhances the quality of life and the process of facing death [ 25 ]. Participants in Brockopp et al.’s [ 24 ] study acknowledged the importance of a supportive relationship with their caregivers. One study examined patients’ descriptions of a day when they thought their pain was ‘adequately managed,’ including interviewing 15 people with metastatic disease [ 26 ]. The study identified aspects that patients believe are critical for an ‘acceptable day,’ such as engaging in meaningful activities, relieving pain, and feeling well enough to socialize. McPherson and colleagues[ 27 ] found that several participants hesitated to discuss their pain with doctors or family members. Participants in this study expressed their desire for independence, including adaptation and dependency, pain, exhaustion, daily routines, sadness, and loss. Cancer reduces their freedom substantially. Mobility, domestic tasks, personal care, and social and recreational activities were described as realistic or under control. Patients sought normalcy through caring for or being with family. The validity and reliability of research are directly related to the quality or trustworthiness of the results. In the context of this study, four strategies were used to enhance the study’s trustworthiness. These strategies involve triangulation, engaging participants, providing detailed descriptions, and working in the field for an extended period. While qualitative research does not seek to generalize findings to a larger population, it usually offers sufficient descriptive detail to enable the reader to assess whether the findings apply in other contexts. Given that saturation was achieved across a broad population, it is reasonable to assume that the findings apply to cancer patients treated in a similar setting. Going beyond the traditional approaches, assessment of pain experience can be supplemented with an in-depth evaluation of the ‘needs’ and ‘concerns’ of cancer patients by a multidisciplinary team of experts. Thus, individualized pain management protocols can be devised by giving due recognition to the salient findings. Further research is recommended to study the effectiveness of such individualized pain protocols in achieving better pain outcomes. 5. Conclusion Our study’s findings indicate a variety of concerns and needs of patients experiencing cancer pain, which may not be addressed during a typical pain session. ‘Pain-free’ living was identified as the most essential need of patients with cancer pain, while ‘change in normal lifestyle’ due to adverse impact on ‘bio-psycho-social-spiritual wellbeing’ was recognized as the most pressing concern. Data Availability All relevant data are within the manuscript and its Supporting Information files. Acknowledgments The authors, with great respect, appreciate the cooperation extended by the staff of Apeksha Hospital, Maharagama, Sri Lanka, and all the study participants. Footnotes niroshae{at}fnd.cmb.ac.lk , makuloluwaptr{at}kdu.ac.lk , thamara{at}sjp.ac.lk , sampatha{at}sjp.ac.lk PTRM, AATDA, and CSEG contributed substantially to the work’s concept and design, revised the article, and approved the version to be published. NPE conducted the research study, analyzed and interpreted the data, and drafted the article. All authors have read and approved the final manuscript and agreed to be accountable for all aspects of the work. References 1. ↵ Ferlay J , Ervik M , Lam F , et al. Global Cancer Observatory: Cancer Today . Lyon, France: International Agency for Research on Cancer ; 2020 Available from: https://gco.iarc.fr/today , accessed on 25.02.2022 . 2. ↵ Sung H , Ferlay J , Siegel RL , et al. Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries . CA Cancer J Clin . 2021 ; 71 ( 3 ): 209 - 249 . doi: 10.3322/caac.21660 OpenUrl CrossRef PubMed 3. ↵ Van den Beuken-van Everdingen MH , Hochstenbach LM , Joosten EA , et al. Update on Prevalence of Pain in Patients With Cancer: Systematic Review and Meta-Analysis . J Pain Symptom Manage . 2016 ; 51 ( 6 ): 1070 – 1090 .e9. doi: 10.1016/j.jpainsymman.2015.12.340 OpenUrl CrossRef PubMed 4. ↵ Naughton MJ , Weaver KE . Physical and mental health among cancer survivors: considerations for long-term care and quality of life . N C Med J . 2014 ; 75 ( 4 ): 283 – 286 . doi: 10.18043/ncm.75.4.283 OpenUrl Abstract / FREE Full Text 5. ↵ Javier FO , Irawan C , Mansor MB , et al. Cancer Pain Management Insights and Reality in Southeast Asia: Expert Perspectives From Six Countries . J Glob Oncol . 2016 ; 2 ( 4 ): 235 – 243 . Published 2016 Apr 13. doi: 10.1200/JGO.2015.001859 OpenUrl Abstract / FREE Full Text 6. ↵ Li , Zhang et al. “ Burden of cancer pain in developing countries: a narrative literature review .” ClinicoEconomics and outcomes research: CEOR vol. 10 675 – 691 . 2 Nov . 2018 , doi: 10.2147/CEOR.S181192 OpenUrl CrossRef 7. ↵ Hughes RG Wells N , Pasero C , McCaffery M. Improving the Quality of Care Through Pain Assessment and Management . In: Hughes RG , editor. Patient Safety and Quality: An Evidence-Based Handbook for Nurses . Rockville (MD) : Agency for Healthcare Research and Quality (US) ; 2008 Apr . Chapter 17. Available from: https://www.ncbi.nlm.nih.gov/books/NBK2658/ 8. ↵ Holtan A , Aass N , Nordøy T , et al. Prevalence of pain in hospitalised cancer patients in Norway: a national survey . Palliat Med . 2007 ; 21 ( 1 ): 7 – 13 . doi: 10.1177/0269216306073127 OpenUrl CrossRef PubMed Web of Science 9. ↵ Deng , D. , Fu , L. , Zhao , Y. X. , Wu , X. , Zhang , G. , Liang , C. , Xie , C. H. , & Zhou , Y. F . ( 2012 ). The Relationship Between Cancer Pain and Quality of Life in Patients Newly Admitted to Wuhan Hospice Center of China . American Journal of Hospice and Palliative Medicine , 29 ( 1 ), 53 – 59 . doi: 10.1177/1049909111418636 OpenUrl CrossRef PubMed 10. He , Q.H. , Liu , Q.L , Li , Z , Li , K.Z , Xie , Y.G . ( 2015 ). Impact of epidural analgesia on quality of life and pain in advanced cancer patients . Pain Management Nursing .; 16 ( 3 ): 307 – 313 . OpenUrl 11. Ovayolu , N. , Ovayolu , Ö. , Serçe , S. , Tuna , D. , Pirbudak , Çöçelli , L. , Sevinç , A., ( 2013 ). Pain and quality of life in Turkish cancer patients . Nursing & Health Sciences .; 15 ( 4 ): 437 – 443 . OpenUrl 12. Oliveira , K.G. , von Zeidler , S.V. , Podestá , J.R. , et al. ( 2014 ). Influence of pain severity on the quality of life in patients with head and neck cancer before antineoplastic therapy . BMC Cancer . 14 , 39 doi: 10.1186/1471-2407-14-39 OpenUrl CrossRef PubMed 13. ↵ Kwon , J. H. , Oh , S. Y. , Chisholm , G. , Lee , J. A. , Lee , J. J. , Park , K. W. , Nam , S. H. , Song , H. H. , Lee , K. , Zang , D. Y. , Kim , H. Y. , Choi , D. R. , Kim , H. J. , Kim , J. H. , Jung , J. Y. , Jang , G. , Kim , H. S. , Won , J. Y. , & Bruera , E . ( 2013 ). Predictors of high score patient-reported barriers to controlling cancer pain: a preliminary report . Supportive care in cancer: official journal of the Multinational Association of Supportive Care in Cancer , 21 ( 4 ), 1175 – 1183 . doi: 10.1007/s00520-012-1646-x OpenUrl CrossRef PubMed 14. ↵ Breivik , H. , Cherny , N. , Collett , B. , de Conno , F. , Filbet , M. , Foubert , A. J. , Cohen , R. , & Dow , L . ( 2009 ). Cancer-related pain: A pan-European survey of prevalence, treatment, and patient attitudes . Annals of Oncology , 20 ( 8 ), 1420 – 1433 . doi: 10.1093/annonc/mdp001 OpenUrl CrossRef PubMed Web of Science 15. ↵ Fillingim , Roger B . “ Individual differences in pain: understanding the mosaic that makes pain personal .” Pain vol. 158 Suppl 1 , Suppl 1 ( 2017 ): S11 – S18 . doi: 10.1097/j.pain.0000000000000775 OpenUrl CrossRef PubMed 16. ↵ Graneheim UH , Lundman B . Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness . Nurse Education Today . 2004 ; 24 ( 2 ): 105 – 112 . doi: 10.1016/j.nedt.2003.10.001 OpenUrl CrossRef PubMed Web of Science 17. ↵ Guba EG , Lincoln YS. Effective Evaluation . 1st ed. Jossey-Bass Publishers ; 1981 . 18. ↵ McPherson CJ , Hadjistavropoulos T , Devereaux A , et al. A qualitative investigation of the roles and perspectives of older patients with advanced cancer and their family caregivers in managing pain in the home . BMC Palliat Care . 2014 ; 13 : 39 . Published 2014 Aug 8. doi: 10.1186/1472-684X-13-39 OpenUrl CrossRef 19. ↵ Xu X , Cheng Q , Ou M , et al. Pain acceptance in cancer patients with chronic pain in Hunan , China: A qualitative study. International Journal of Nursing Sciences . 2019 ; 6 ( 4 ): 385 – 391 . doi: 10.1016/j.ijnss.2019.09.011 OpenUrl CrossRef 20. ↵ Bowling A , Dieppe P . What is successful ageing and who should define it? . BMJ . 2005 ; 331 ( 7531 ):1548-1551. doi: 10.1136/bmj.331.7531.1548 OpenUrl FREE Full Text 21. ↵ Duggleby W . Enduring suffering: a grounded theory analysis of the pain experience of elderly hospice patients with cancer . Oncol Nurs Forum . 2000 ; 27 ( 5 ): 825 – 831 . OpenUrl PubMed 22. ↵ Hackett J , Godfrey M , Bennett MI . Patient and caregiver perspectives on managing pain in advanced cancer: A qualitative longitudinal study . Palliat Med . 2016 ; 30 ( 8 ): 711 – 719 . doi: 10.1177/0269216316628407 OpenUrl CrossRef PubMed 23. ↵ Thomé B , Esbensen BA , Dykes AK , et al. The meaning of having to live with cancer in old age . Eur J Cancer Care (Engl ) . 2004 ; 13 ( 5 ): 399 – 408 . doi: 10.1111/j.1365-2354.2004.00542.x OpenUrl CrossRef PubMed 24. ↵ Brockopp DY , Warden S , Colclough G , et al. Elderly hospice patients’ perspective on pain management . Hosp J . 1996 ; 11 ( 3 ): 41 – 53 . doi: 10.1080/0742-969x.1996.11882826 OpenUrl CrossRef PubMed 25. ↵ Bermejo Higuera JC , Lozano González B , Villacieros Durbán M , et al. Spiritual needs in palliative care . Users assessment and experience. Medicina Paliativa . 2013 ; 20 ( 3 ): 93 – 102 . doi: 10.1016/j.medipa.2012.05.004 OpenUrl CrossRef 26. ↵ Zelman DC , Smith MY , Hoffman D , et al. Acceptable, manageable, and tolerable days: daily patient goals for medication management of persistent pain . Journal of Pain and Symptom Management . 2004 ; 28 ( 5 ): 474 – 487 . doi: 10.1016/j.jpainsymman.2004.02.022 OpenUrl CrossRef PubMed Web of Science 27. ↵ McPherson CJ , Hadjistavropoulos T , Devereaux A , et al. A qualitative investigation of the roles and perspectives of older patients with advanced cancer and their family caregivers in managing pain in the home . BMC Palliat Care . 2014 ; 13 : 39 . Published 2014 Aug 8. doi: 10.1186/1472-684X-13-39 OpenUrl CrossRef View the discussion thread. Back to top Previous Next Posted April 15, 2024. Download PDF Data/Code Email Thank you for your interest in spreading the word about medRxiv. NOTE: Your email address is requested solely to identify you as the sender of this article. Your Email * Your Name * Send To * Enter multiple addresses on separate lines or separate them with commas. You are going to email the following “Mitigating Cancer Pain: What else Matters?”—A Qualitative Study into the Needs and Concerns of Cancer Patients in Sri Lanka Message Subject (Your Name) has forwarded a page to you from medRxiv Message Body (Your Name) thought you would like to see this page from the medRxiv website. 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