Designing and validating a research questionnaire - Part 2.

Validity and reliability refer to the accuracy and consistency of a research tool. In the previous article in this series, we examined the development of a research questionnaire. In this article, we discuss the methods of determining the validity and reliability of a research questionnaire.

Designing and validating a research questionnaire - Part 1.

Questionnaires are often used as part of research studies to collect data from participants. However, the information obtained through a questionnaire is dependent on how it has been designed, used, and validated. In this article, we look at the types of research questionnaires, their applications and limitations, and how a new questionnaire is developed.

Introduction to qualitative research methods: Part 2.

Qualitative research methods are typical of the social sciences and humanities, but they can also be highly useful in clinical research. This article is an introduction to six key qualitative methods: surveys and interviews, participant observation and focus groups, and document and archival research. We discuss the important features of each method, as well as how and when they might be employed.

Introduction to qualitative research methods - Part I.

Qualitative research methods are widely used in the social sciences and the humanities, but they can also complement quantitative approaches used in clinical research. In this article, we discuss the key features and contributions of qualitative research methods.

Investigating stigma during the COVID-19 pandemic: Living conditions, social determinants and experiences of infection among employees at a tertiary referral cancer centre.

AIM: Healthcare workers (HCWs) have reported negative social experiences during the COVID-19 pandemic; however, this data is largely from medical personnel. We examined living conditions, social determinants, and experiences during the COVID-19 pandemic among all cadres of employees who had recovered from COVID-19 at a tertiary referral cancer hospital in India. METHODS: We conducted a mixed methods study combining a questionnaire-based survey followed by semi-structured interviews with open-ended questions, among hospital staff who recovered from COVID-19 between April and November 2020. We initially administered a 79-point survey to all participants; based on their responses, we used purposive sampling to identify 60 interview participants. The primary aim of the study was to examine the impact of socio-economic factors on experiences and potential stigma faced by staff during the COVID-19 pandemic. RESULTS: We surveyed 376 participants including doctors (10 %), nurses (20 %), support staff (29 %), administrators (18 %) and scientists/technicians (22 %). Of these, 126 (34 %) participants reported negative social experiences. Stigmatisation was lower among doctors compared to other professions, decreased in the second half of the study period, and was more among those living in less affluent surroundings. Interviews revealed 3 types of negative social experiences: neighbourhood tensions around restrictions of mobility, social distancing, and harassment. CONCLUSIONS: The first phase of the COVID-19 pandemic in India led to considerable negative social experiences among hospital employees, especially those lower in the socio-economic hierarchy, which was fuelled by restrictions imposed by the government and pressure on local neighbourhoods. POLICY SUMMARY: It is important to not just document and count stigma experiences during global pandemics, but also to examine sociologically the conditions under which and the processes through which stigma happens.

Informal Providers-Ground Realities in South Asian Association for Regional Cooperation Nations: Toward Better Cancer Primary Care: A Narrative Review.

PURPOSE: South Asian Association for Regional Cooperation (SAARC) nations are a group of eight countries with low to medium Human Development Index values. They lack trained human resources in primary health care to achieve the WHO-stated goal of Universal Health Coverage. An unregulated service sector of informal health care providers (IPs) has been serving these underserved communities. The aim is to summarize the role of IPs in primary cancer care, compare quality with formal providers, quantify distribution in urban and rural settings, and present the socioeconomic milieu that sustains their existence. METHODS: A narrative review of the published literature in English from January 2000 to December 2021 was performed using MeSH Terms Informal Health Care Provider/Informal Provider and Primary Health Care across databases such as Medline (PubMed), Google Scholar, and Cochrane database of systematic reviews, as well as World Bank, Center for Global Development, American Economic Review, Journal Storage, and Web of Science. In addition, citation lists from the primary articles, gray literature in English, and policy blogs were included. We present a descriptive overview of our findings as applicable to SAARC. RESULTS: IPs across the rural landscape often comprise more than 75% of primary caregivers. They provide accessible and affordable, but often substandard quality of care. However, their network would be suitable for prompt cancer referrals. Care delivery and accountability correlate with prevalent standards of formal health care. CONCLUSION: Acknowledgment and upskilling of IPs could be a cost-effective bridge toward universal health coverage and early cancer diagnosis in SAARC nations, whereas state capacity for training formal health care providers is ramped up simultaneously. This must be achieved without compromising investment in the critical resource of qualified doctors and allied health professionals who form the core of the rural public primary health care system.

Journeys: understanding access, affordability and disruptions to cancer care in India.

BACKGROUND: Much of the global cancer burden is in low- and middle-income countries (LMICs). Along with the high incidence of cancer, most LMICs have unevenly distributed health care resources. This study is a qualitative exploration of the journey of patients accessing cancer care in India and their caregivers. METHODS: The study followed a cross-sectional qualitative design. Participants were recruited by stratified purposive sampling, and all common cancers in India as reported by the GLOBOCAN database were included in the study. Consenting patients and their caregivers were interviewed using in-depth interview techniques. The data was analysed using principles of qualitative content analysis. RESULTS: Cancer patients (n = 100) and their caregivers (n = 48) were interviewed for the study. The six themes that emerged were related to a) the journey of patients to access care, b) the psychological journey of patients, c) stigma of cancer patients, d) decision-making and adherence to treatment, e) economic costs of cancer care and its impact and f) modifiers to accessing cancer care. CONCLUSIONS: Planning and policymaking in the future of cancer care delivery need to consider the views expressed by the cancer patients and their caregivers as regards to access, adherence and disruptions to cancer care in India. Future policies will hopefully address some of the difficulties faced by patients.

Silver linings: a qualitative study of desirable changes to cancer care during the COVID-19 pandemic.

INTRODUCTION: Public health emergencies and crises such as the current COVID-19 pandemic can accelerate innovation and place renewed focus on the value of health interventions. Capturing important lessons learnt, both positive and negative, is vital. We aimed to document the perceived positive changes (silver linings) in cancer care that emerged during the COVID-19 pandemic and identify challenges that may limit their long-term adoption. METHODS: This study employed a qualitative design. Semi-structured interviews (n = 20) were conducted with key opinion leaders from 14 countries. The participants were predominantly members of the International COVID-19 and Cancer Taskforce, who convened in March 2020 to address delivery of cancer care in the context of the pandemic. The Framework Method was employed to analyse the positive changes of the pandemic with corresponding challenges to their maintenance post-pandemic. RESULTS: Ten themes of positive changes were identified which included: value in cancer care, digital communication, convenience, inclusivity and cooperation, decentralisation of cancer care, acceleration of policy change, human interactions, hygiene practices, health awareness and promotion and systems improvement. Impediments to the scale-up of these positive changes included resource disparities and variation in legal frameworks across regions. Barriers were largely attributed to behaviours and attitudes of stakeholders. CONCLUSION: The COVID-19 pandemic has led to important value-based innovations and changes for better cancer care across different health systems. The challenges to maintaining/implementing these changes vary by setting. Efforts are needed to implement improved elements of care that evolved during the pandemic.

Cancer patients' experience of oncology services in Assam, India.

BACKGROUND: Cancer patients' experience is dependent on the complex interaction between the patient, carer, healthcare practitioners and healthcare system. The aim of the study was to assess the experience of cancer patients in Assam in order to identify potential areas for improvement in delivering high quality cancer care. METHODS: A cross sectional patient experience survey was conducted in 400 patients using structured interviews and pre-tested questionnaires that collected patient-reported outcomes including access to cancer care, experience while availing cancer services across the pathway, waiting times, communication and counselling support, out-of-pocket expenditure and advice regarding available insurance schemes and financial support. RESULTS: The cancer patient's experience of accessing healthcare in Assam is variable with principal challenges being financial constraint and geographical distance to healthcare facilities. Overall, patients' experience during registration, first consultation, pre-treatment and during treatment was good with high satisfaction rates expressed in several of the areas assessed. Areas that were identified for improvement were better explanation of long-term side effects of treatment, enhanced guidance in choosing treatment options and greater support from healthcare professionals to help patients cope with the psychological, emotional and physical aspects of their cancer diagnosis, treatment and recovery. CONCLUSION: Understanding cancer patient experiences across their journey is critical to delivering accessible and affordable care. Effective, adaptive and responsive communication remains the anchor of excellent patient-centred care especially in resource constraint settings. POLICY STATEMENT: The paper provides an insight into critical areas focusing on diagnosis, treatment, continuum of care and communication during cancer patients' care in India. Healthcare policy needs to focus on developing a robust, holistic, healthcare system in terms of accessibility, affordability and psychosocial care, including counselling and financial support, to ensure better cancer outcomes.

Prevalence of use of tobacco, alcohol consumption and physical activity in the North East region of India.

BACKGROUND: Cancer patients in the North East Region (NER) of India have poorer survival rates compared with the rest of India. This is due to late stage at presentation related to poor awareness, risk factors such as use of tobacco, alcohol consumption and less physical activity, This study aims to determine the association between socio-demographic characters and use of tobacco, alcohol consumption and physical activity among people in the NER. METHODS: A cross-sectional study of 1400 participants was conducted across Assam, Nagaland and Meghalaya in the NER. A questionnaire was developed to study the socio-demographic profile and factors such as use of tobacco, alcohol consumption and physical activity among participants. Multivariate analysis was performed to understand tobacco and alcohol use and physical activity and a logistic regression analysis was performed to understand the association of different independent variables with lifestyle practice. RESULTS: Use of tobacco and alcohol consumption was highest amongst males, 25-44 years age range and middle income group as defined in this study. The main reasons given for quitting tobacco and alcohol were becoming aware of the harmful effects of using tobacco, pressure from family and friends, and noticing a deterioration in health. Over 90 % of tobacco users and consumers of alcohol initiated this between 10-30 years of age. In all, 62 % of participants rarely or never engaged in any physical recreational activity. CONCLUSION: Patterns of use of tobacco and consumption of alcohol and recreational physical activity undertaken in the NER show a strong relationship with gender, age and household income. POLICY IMPLICATIONS: The paper finds a close association of different pattern of modifiable habits which are the risk factors for cancer in the Northeast Region. The limited awareness about the risk factors strengthen the case of context specific prevention strategies and constant reinforcement of behavior communication strategies by using multipronged approach.

What Went Wrong: Corona and the World after the Full Stop.

This article examines the global response to the Covid-19 pandemic. It argues that we urgently need to look beyond the virus if we want to understand the real seriousness of what is happening today. How did we end up in a space of thinking, acting, and feeling that has normalized extremes and is based on the assumption that biological life is an absolute value separate from politics? The author suggests that today's fear is fueled by mathematical disease modeling, neoliberal health policies, nervous media reporting, and authoritarian longings.

Assessment of Knowledge and Screening in Oral, Breast, and Cervical Cancer in the Population of the Northeast Region of India.

PURPOSE: The burden of cancer is increasing globally, with poor outcomes in terms of morbidity and mortality in patients, especially in low- and middle-income countries. Lack of awareness of the risk factors, symptoms, and signs of common cancers in addition to inadequate cancer prevention programs at the community level are a major hindrance to the early detection of cancer. METHODS: A cross-sectional study was conducted in the North East Region (NER) of India, with a sample population of 1,400 participants from Assam (n = 1,000), Meghalaya (n = 200), and Nagaland (n = 200). The questionnaire developed for the study consisted of sociodemographic profile, knowledge about cancer (oral, breast, and cervical), its warning signs, risk factors, and attitude toward cancer screening. Statistical analysis was performed using STATA version 13.0. RESULTS: Among all the participants, 59% had heard about oral cancer, 50% about breast cancer, and 31% about cervical cancer. A limited understanding of risk factors, symptoms, and signs was reported for oral cancer (45%), breast cancer (54%), and cervical cancer (63%). A total of 34% of participants were aware of cancer screening. Among those who were aware of cancer screening, only six people had undergone any form of cancer screening, and 71% cited media as the major source of information. CONCLUSION: The level of cancer awareness is low in the NER. A multipronged approach is needed with assistance from government and nongovernment organizations for training, providing adequate human resources and equipment, and developing cancer screening infrastructure. This needs to be coupled with mass media communication and interpersonal communication through frontline health workers.

On the use of surveys and interviews in social studies of cancer: understanding incoherence.

In this article, we discuss the advantages and disadvantages of the survey as a methodological tool in social studies of cancer. Drawing on our own research on the accessibility and affordability of cancer care in India, we present examples from interviews and identify some limitations inherent in survey-based research approaches. We argue that social studies of cancer require a more rigorous methodology to produce robust and reliable data.

Re-imagining global health through social medicine.

The conceptual and practical work done by social medicine and global health have often overlapped. In this paper, we argue that new efforts to apprehend 'the social' in social medicine offer important insights to global health along five lines of critical analysis: (1) reconfigurations of the state and new forms of political activism, (2) philanthrocapitalism and the economisation of life, (3) The economy of attention, (4) anthropogenic climate change, and (5) the geopolitics of North and South.

Analysis of Social Science Research Into Cancer Care in Low- and Middle-Income Countries: Improving Global Cancer Control Through Greater Interdisciplinary Research.

This analysis lays a framework for greater collaboration between the cancer community and social scientists in both research and policy. We argue that the growing cancer burden that low- and middle-income countries face is raising social, political, and economic challenges of global cancer that require interdisciplinary research beyond the traditional biomedical-clinical nexus. First, we briefly review some of the most important existing social science studies that have addressed cancer in low- and middle-income countries, including the main methods, approaches, and findings of this research. Second, we give an overview of recent interdisciplinary collaborations between social scientists and oncologists and demonstrate how qualitative research can help us to understand the distinct challenges of cancer care in low- and middle-income settings. Finally, we identify key areas for future collaboration and suggest possible paths forward for cancer research and policy that involve social science.