Development of a question prompt list for Indian cancer patients receiving radiation therapy treatment and their primary family caregivers.

AIM: We aimed to develop two question prompt lists (QPLs), one for Indian cancer patients undergoing radiation therapy and the second for their primary family caregivers. METHODS: The study comprised three phases: (1) qualitative interviews with patients (n = 65) and PFCs (n = 39) to identify their information needs, queries and concerns regarding RT; (2) development of draft QPLs using conventional content analysis and translation into Hindi and Marathi using European Organisation Research and Treatment of Cancer guidelines; and, (3) A readability analysis, and acceptability study with patients (n = 22), PFCs (n = 26) and Radiation Oncology (RO) staff (n = 20) exploring barriers to QPL implementation. RESULTS AND DISCUSSION: Analysis in Phase I identified questions patients and PFCs asked or wanted to ask their physician. A list of 125 and 136 questions were generated for patients and PFCs, respectively. After five iterations, the draft QPLs were finalised, translated, and back-translated from English into Hindi and Marathi (Phase II). In Phase III, most patients and PFCs reported the QPLs were easy to read, they did not find it difficult to ask the questions, and the questions were not emotionally upsetting. Conversely, RO staff reported concerns that patients may find it difficult to discuss the questions with their physician. CONCLUSION: The study highlights the need to empower patients and PFCs to ask questions and for staff to feel comfortable answering them. Implementing physician-endorsed QPLs could achieve these aims.

Experiences of prognosis disclosure versus nondisclosure among family caregivers of persons with advanced cancer.

Caregiving in the South Asian context is often assumed by family automatically for the person with cancer (PWC). In this paper, we applied the disclosure decision-making model (DD-MM) to understand the motives behind cancer prognosis disclosure (or not) by caregivers to the PWC. Fifty caregivers participated in semi-structured interviews; and data were analyzed using Framework Approach. For the disclosing caregivers, some of the themes that emerged were consistent with the DD-MM framework while others were not. In particular, the theme "recipient assessment" was part of the DD-MM framework, while others such as unmet communication needs, caregiver self-reflection, and family support were outside of the framework. In contrast, for the non-disclosing caregivers, the reasons for nondisclosure fit very concisely into the DD-MM framework, particularly with information assessment, recipient assessment, and (non) disclosure efficacy. This study has significant implications for development of communication skills trainings around holding family meetings in India.

Experiences and expectations of physician communication: A focus group discussion with Indian patients with type 2 diabetes mellitus.

OBJECTIVES: This pilot study aimed to: (a) understand the experiences of Indian patients with type 2 diabetes mellitus and their expectations of their physicians during a medical consultation, (b) serve as a preliminary study to inform the development of a larger project exploring and improving patients' communication experiences, and (c) assess whether the pilot study findings indicate the viability of using the Relationship: Establishment, Development, and Engagement model of communication as the conceptual framework for the larger project. METHODS: Using convenience sampling, 11 patients participated in a focus group discussion. Conventional content analysis was used. RESULTS: Two themes were generated: (a) A plethora of negative feelings: experiences of the physician's verbal and nonverbal communication styles, and (b) 'I know what I want': Expectations of communication by patients from their physician. CONCLUSIONS: The medical encounter with the physician elicited a range of negative experiences and clear expectations from the patients with type 2 diabetes mellitus. This pilot points to the need for (a) a mixed methods approach to comprehensively examine the communication needs of patients with type 2 diabetes mellitus from their physician, (b) understand physicians' communication practices, and (c) using these findings, culturally adapt and test the Relationship: Establishment, Development, and Engagement to improve physicians' communication skills in India.

Indian physicians' attitudes and practice regarding menopause and its management: a focus group discussion.

OBJECTIVES: To explore Indian physicians' attitudes and practice toward menopause and its management. To contribute to the larger project aimed at developing communication skills and decision aids for Indian physicians and women. METHODS: Using a cross-sectional design, purposive sampling, and a qualitative methodology, 10 Indian physicians (female, 6; male, 4; mean age, 51.5 years) who were practicing either endocrinology or gynecology were recruited to participate in a virtual focus group discussion. Questions explored physicians' attitudes toward menopause and their approach toward addressing menopause and related concerns with their patients. The focus group was analyzed using qualitative content analysis. RESULTS: Three main themes emerged: (1) "The only way to get over it is to accept it": Attitudes toward menopause, (2) "More than menopausal hormone therapy, it is empathy that's required": Physiological and psychological symptom management and (3) Matching the empathic intent with skills: A need for training in the management of menopause. CONCLUSIONS: The study findings underscore the need to introduce Indian physicians to empathic communication skills training, involve, and educate physicians about the international and national clinical guidelines regarding menopausal hormone therapy and alternative therapies, and techniques for distress screening and early referrals. VIDEO SUMMARY: http://links.lww.com/MENO/B17 .

Body Image Scale: Evaluation of the Psychometric Properties in Three Indian Head and Neck Cancer Language Groups.

Background: Body image is a subjective concept encompassing a person's views and emotions about their body. Head and neck cancer (HNC) diagnosis and treatment affects several psychosocial concepts including body image. Large numbers of HNC patients are diagnosed each year in India but there are no suitable measures in regional languages to assess their body image. This study assessed the psychometric properties of the Body Image Scale (BIS), a measure suitable for clinical and research use in HNC populations, translated into Tamil, Telugu and Hindi and compared body image distress between language groups. Methods: Translated versions of BIS were completed by HNC patients recruited from three cancer centers across India one time only. Psychometric evaluation was conducted including factor analysis using principal component analysis and internal consistency reliability using Cronbach's alpha. Patients completed the EORTC Quality of Life Questionnaire (QLQ) C-30 and EORTC QLQ HN-35 measures to enable exploration of convergent and discriminant validity. ANOVA was used to calculate difference in mean values for body image. Results: Our sample included 621 HNC patients (Tamil = 205, Telugu = 216, Hindi = 200). Factor analysis revealed a one-factor solution and Cronbach's alpha coefficients ranged between 0.891 and 0.969 indicating good reliability. Hypothesized correlations between similar and different constructs were as expected, supporting construct validity. On the BIS, we found a statistically significant difference (F = 11.0954, P < 0.05) between means of Tamil, Telugu, and Hindi groups, with higher body image scores in Telugu (M = 12.86; SD = 7.65) and Hindi groups (M = 12.52; SD = 7.36) indicating more symptoms/body image distress, when compared to Tamil population (M = 9.28; SD = 10.04). Conclusion: The reliability and validity of the three translated Indian versions of the BIS were maintained, providing a method for assessing body image of HNC population worldwide speaking Tamil, Telugu, and Hindi across the illness trajectory.

Treatment-related communication experiences and expectations among Indian cancer patients receiving radiation therapy and their family members: A qualitative study.

OBJECTIVE: To explore Indian cancer patients' and their primary family caregivers' (PFC) experiences and expectations of treatment-related communication with their physician while undergoing radiation therapy. METHODS: Participants, comprising patient-PFC dyads (n = 32), patients only (n = 33) and PFC only (n = 7), were recruited from one hospital in Mumbai, India. Semi-structured interviews explored participants' perceived role in cancer-related decision-making, diagnosis and prognosis communication experiences with the physician, communication expectations of their treating physician, and information needs. Interviews were audio-recorded, transcribed verbatim, and analysed using the framework approach. RESULTS: Main themes included: (i) patients' passive role in treatment communication, (ii) family as an integral part of the medical consultation, and (iii) dyads' expectations and beliefs about the role of the physician. CONCLUSION: Indian cancer patients played a passive role in treatment decision-making while physicians were seen as primary medical decision-makers. Further, PFCs provided the final consent for the treatment plan and acted as a mediator/moderator between the patient-physician. PRACTICE IMPLICATIONS: These findings suggest the need for (i) interventions such as question prompt lists that may improve patient activation and caregiver preparedness, and (ii) triadic communication training interventions for optimal communication between the three stakeholders (i.e., patient, physician and PFC).

Unmet and under-met needs among Indian parents of children with neurological disorders.

BACKGROUND: Parents of children with neurological disorders commonly report having unmet needs related to their child's care. Mixed methods research is needed with parents of children with neurological disorders in India in order to: 1) quantify which needs are unmet and under-met, and 2) qualitatively explore how parents perceive their unmet and under-met needs. METHODS: This concurrent mixed-methods study used a convergence model of triangulation design. Parents of children with neurological disorders receiving treatment in a children's hospital in Hyderabad, India completed questionnaires (n = 205) on unmet/under-met needs. Twenty-five of these parents then completed in-depth interviews exploring experiential aspects of unmet needs. RESULTS: Quantitative analysis suggested that education about the child's illness and medical needs were the most frequent unmet needs. Parents needed their child's condition explained to them (91.7%) and greater continuity of their child's care (85.4%). Qualitative analysis suggested that parents reported struggling to find a specialist who was knowledgeable about their child's condition. Though parents living in rural areas quantitatively reported fewer unmet needs (child's medical care, care coordination, and communication) than parents living in the city (B = 0.92 [95%CI = 0.64,1.20] for medical care needs), the qualitative data showed this may be due to lower expectations from the health system. CONCLUSION: Parents of children with neurological disorders in India frequently report unmet and under-met needs. PRACTICE IMPLICATIONS: Community-based interventions coupled with training nurses on information provision could help bridge the gap between what is offered by hospital systems, and what is needed by parents, in terms of information and support.

Experiences of barriers to self-monitoring and medication-management among Indian patients with type 2 diabetes, their primary family-members and physicians.

OBJECTIVES: This study explored the subjective accounts of the main barriers to self-monitoring of blood-glucose (SMBG) and medication-management among Indian patients with type 2 diabetes (T2DM), their primary family-members (PFMs) and physicians. METHODS: Using convenience sampling, patients with T2DM, their PFMs, and physicians, residing in a South Indian capital city, were recruited for semi-structured, audio-recorded interviews. Thematic analysis was used to analyze the data. RESULTS: Fifty patients (female = 14; mean age = 42.5 years) and their PFMs (female = 38; mean age = 39 years), and 25 physicians (female = 4; mean age = 49.8 years) were recruited. Three superordinate themes were identified: (i) complex medication-regimen: confusion, forgetting and reduced motivation, (ii) family recommendations of alternative therapies due to the social pressures of avoiding stigma, intrusiveness and being misrepresented for injecting insulin, and (iii) an expensive illness: choosing to spend money on only medication. DISCUSSION: Implications of the findings highlight the need to (i) train physicians in communication and empathy skills, (ii) empower patients to communicate their barriers to physicians through triadic communication models and question-prompt lists, (iii) educate communities on the benefits of insulin for managing T2DM to reduce stigma, and (iv) equip communities with information about health insurance to address the financial toll of T2DM management.

Demonstrating the importance of cultural considerations at end of life utilizing the perspective of Indian patients with cancer.

PURPOSE: This study aimed to understand Indian cancer patients' hopes and beliefs about the end of life, particularly focusing on how this informed their preferences regarding end-of-life treatment. In India, individuals' lives are mainly guided by culturally driven practices of doing right by one's family and believing death is predetermined. METHODS: Indian patients (25) diagnosed with advanced incurable cancer and aware of their prognosis participated in semi-structured interviews exploring their hopes as they approached the end of life. The interview also sought to understand patients' views and beliefs about do-not-resuscitate (DNR) orders and euthanasia. The interviews were transcribed and analysed using interpretative phenomenological analysis. RESULTS: Two major themes were identified: (i) a desire for living or dying comprising sub-themes of perceptions of current responsibilities, and having a fighting spirit versus feelings of despair, and (ii) God was the ultimate decision-maker of life and death. Furthermore, patients understood that a do-not-resuscitate order meant euthanasia and responded accordingly. Some patients reported hoping for death due to the pain and resultant suffering. However, patients did not talk about euthanasia openly, instead choosing to describe it within a larger framework of life and death. CONCLUSIONS: Indian patients reaching the end of life valued their family responsibilities which determined their desire to live or die. However, all patients believed that God decided on their life and death. It is important to consider cultural perspectives on DNR or euthanasia and to address patients' pain management needs towards the end of life.

Oncologists' experience with discussing cancer prognosis with patients and families: perspectives from India.

Nondisclosure of prognosis of advanced cancer is commonly practiced in some Asian cultures including India; but research is limited. To describe experiences of Indian oncologists in discussing cancer prognosis with people with cancer and their caregivers, with a focus on barriers and facilitators of prognostic discussions. Thirty oncologists practicing in South India, Hyderabad participated in semi-structured interviews; and analyzed using Interpretative Phenomenological Analysis. Barriers included system-level, patient-level, and physician-level challenges as obstructions to open and honest interactions around cancer prognosis. Most of the barriers focused on communication-related challenges. Lack of communication skills training for providers coupled with over-reliance on use of euphemisms, hesitation in communicating with "weak" patient, and struggles to establish healthcare proxy described communication-related barriers. The study also described factors including family involvement in cancer care and empathic communication as facilitators of honest and open communication about prognosis. In particular, rapport building and getting to know the patient, use of empathic communication, engaging in gradual and individualized disclosure, and balancing hope with honesty were communication-related facilitators that aid open communication with patients with cancer and their caregivers about prognosis and plan of care. Results provide implications for development of communication skills trainings for oncology physicians in India. Adapting, delivering, and evaluating existing communication skills training programs, particularly around discussions of prognosis and goals of care is a requisite step for providing patient-centered and supportive care to patients with cancer and their caregiving families.

Patient-reported anxiety and depression measures for use in Indian head and neck cancer populations: a psychometric evaluation.

BACKGROUND: Head and neck cancers (HNC) are one of the most traumatic forms of cancer because they affect essential aspects of life such as speech, swallowing, eating and disfigurement. HNCs are common in India, with over 100,000 cases being registered each year. HNC and treatment are both associated with considerable anxiety and depression. With increasing multinational research, no suitable measures in Indian languages are available to assess anxiety and depression in Indian HNC patients. This study evaluated the psychometric properties of cross-culturally adapted versions of Zung's self-rating Anxiety Scale (SAS) and the Patient health questionnaire - 9 (PHQ-9) in Tamil, Telugu and Hindi speaking Indian HNC populations. METHODS: HNC patients were recruited from three tertiary cancer centres in India. Patients completed the cross-culturally adapted versions of SAS and PHQ-9. We assessed targeting, scaling assumptions, construct validity (exploratory and confirmatory factor analyses), convergent validity, and internal consistency reliability. RESULTS: The study sample included 205 Tamil, 216 Telugu and 200 Hindi speaking HNC patients. Exploratory and confirmatory factor analyses indicated a two-factor solution for PHQ-9 and four-factor solution for SAS in all three languages. Cronbach's alpha coefficients ranged between 0.717 and 0.890 for PHQ-9 and between 0.803 and 0.868 for SAS, indicating good reliability. Correlations between hypothesized scales were as expected providing evidence towards convergent validity. CONCLUSIONS: This first psychometric evaluation of the measurement properties of Tamil, Telugu and Hindi versions of the SAS and PHQ-9 in large, Indian HNC populations supported their use as severity and outcome measures across the disease and treatment continuum.

The Weight of Words: Indian Physicians' Perspectives on Patient Communication to Promote Diabetes Adherence.

Background: Effective communication by physicians can lead to improved patient adherence, resulting in better patient outcomes and increased patient satisfaction. This study: (i) examined communication with patients when they were non-adherent, (ii) examined attitudes toward common communication cues, and (iii) explored communication approaches to encourage diabetes adherence used by Indian physicians. Methods: Using a concurrent mixed methods approach, Indian physicians, specialized in diabetes and/or endocrinology were recruited, to complete a survey containing quantitative (n = 834) and qualitative (n = 648) questions. The questions included (i) whether physicians expressed disappointment and used scare tactics for non-adherent patients, (ii) to rate the importance of common communication cues when promoting adherence, and (iii) nested, qualitative questions to understand their communication approach to promote adherence. The data were analyzed using descriptive statistics and qualitative content analysis, respectively. Results: The quantitative study reported that the majority of the physicians sometimes showed their disappointment in their patient's progress (44.4%), sometimes used scare tactics to convey disease severity due to non-adherence (34.3%), and rated all communication cues as most important. The qualitative findings revealed that physicians used paternalistic (authoritative, educational, authoritarian) or collaborative (multistakeholder, patient-centered) approaches and the language cues of fear, blame, and threats to promote patient adherence. Conclusion: These findings highlight the need for communication skill training programs for Indian physicians focused on empathic, non-verbal, supportive, and inclusive techniques so as to promote patient adherence. Further, these trainings need to use role-playing, video recording, and peer feedback methods to show physicians how to implement these skills during patient interactions.

Nondisclosure of a cancer diagnosis and prognosis: Recommendations for future research and practice.

Nondisclosure of a cancer diagnosis and prognosis is a common practice in many family-centric cultures wherein cancer is viewed negatively, resulting in family carers opposing truthful communication to patients. Oncologists comply with this request for diagnosis and/or prognosis nondisclosure owing to the cultural milieu, often choosing to describe the disease in less threatening terms such as "tumor" or "fever." This review provides a snapshot of existing research exploring diagnosis and prognosis disclosure and nondisclosure from the perspectives of the oncologists, family carers, and the patient with a particular focus on the psychological outcomes for patients who are aware versus not aware of their diagnosis and/or prognosis. Further, this review makes recommendations for future research and practice in cancer diagnosis and prognosis communication in India (e.g., communication skills training for family carers and healthcare providers).

The Question-prompt list (QPL): Why it is needed in the Indian oncology setting?

BACKGROUND: In India, caregivers are an integral part of the illness experience, especially in cancer, to the extent that they can become proxy decision-makers for the patient. Further, owing to acute resource constraints in the Indian healthcare system, it may be difficult for oncologists to assess and elicit questions from each patient/caregiver. Consequently, there is a need to address these unique aspects of oncology care in India to improve patient outcomes and understanding of their illness and treatment. This can be achieved through a Question Prompt List (QPL), a checklist used by care recipients during medical consultations. RECENT FINDINGS: This narrative review will first introduce research on the development and effectiveness of the QPL, and then it will highlight current gaps in oncology care in India and explore how the QPL may aid in closing these gaps. A literature search of the empirical research focused on the development, feasibility and acceptability of the QPL in oncology settings was conducted. The final review included 40 articles pertaining to QPL research. Additionally, psycho-oncology research in India centered on information needs and experiences was reviewed. Current Indian psycho-oncology research reports patients' want to be actively involved in their cancer care and a need for more illness information. However, a high demand on physicians' resources and the family caregivers' interference can be barriers to meeting patients' information/communication needs. International research demonstrates that a QPL helps structure and decrease consultation time, improves patient satisfaction with care, and improves the quality of communication during medical encounters. CONCLUSION: QPLs for Indian patients and caregivers may focus on the scope of medical consultations to address patient needs while influencing the course and content of the patient-caregiver-physician interactions. Further, it can address the resource constraints in Indian oncology care settings, thus reducing the physician's burden.

Psychological outcomes, coping and illness perceptions among parents of children with neurological disorders.

OBJECTIVE: To assess the Common Sense Model among parents of children with neurological disorders, by determining the prevalence of symptoms of anxiety and depression, and how illness perceptions relate to symptoms of anxiety and depression both directly, and indirectly via coping. DESIGN: 205 parents of children with neurological disorders in Hyderabad, India completed questionnaires. MAIN OUTCOME MEASURES: Hospital Anxiety and Depression Scale, Brief Illness Perception Questionnaire and Coping Health Inventory for Parents. We used multiple regressions and PROCESS for SPSS to assess direct and indirect relationships. RESULTS: Mild to severe symptoms of anxiety (41.0%) and depression (39.5%) were common. Symptoms of anxiety and/or depression were related to perceived treatment control over the illness, perceived understanding of the illness, perceived personal control over the illness (anxiety only), and perceived timeline of the illness (depression only). The coping strategy 'maintaining social support' mediated the relationship between symptoms of depression and four illness perceptions: perceived consequences (95%CI=.03,-.21), timeline (95%CI=.01,-.25), perceived personal control (95%CI=.02-.24), and treatment control (95%CI=.01-.34). CONCLUSION: Our findings have implications for education interventions to improve community attitudes of child neurological disorders. Such interventions may allow families' social networks to provide more support to parents, which could aid parents' coping strategies.

Antimicrobial overuse in India: A symptom of broader societal issues including resource limitations and financial pressures.

India and the global community are facing a critical crisis of antimicrobial resistance (AMR), significantly contributed to by on-going and increasing antimicrobial misuse. Information as to what drives misuse of antimicrobials within India is essential to inform strategies to address the crisis. This papers aims to identify perceived influences on antimicrobial use in Hyderabad, India. We conducted semi-structured qualitative interviews conducted with thirty participants (15 doctors, 15 pharmacists) around their experiences of antimicrobials in Hyderabad, India. Thematic analysis was performed and four themes identified around (1) Perceptions of the problem of resistance and antimicrobial use; (2) Social pressures to prescribe/dispense; (3) Financial pressures driving antimicrobial over-use; and (4) Lack of regulation around training and qualifications. We conclude that antimicrobial use within India is embedded with, and occurs as a result of, complex social and economic factors including issues of resource limitation, structural/governance limitations and social relationships. Strategies to address misuse without acknowledging and addressing the critical driving forces of use will be unlikely to induce significant change.

Indian patient use of cancer euphemisms: Association with psychological outcomes and health behaviours.

OBJECTIVE: Euphemisms may be used to reduce the threat associated with the word "cancer." Cancer may be particularly threatening in Indian culture due to the myths surrounding its cause and prognosis. This study explored the prevalence of euphemism use by Indian patients and the relationship among euphemism use and illness cognitions, affect, health behaviour, and spontaneous self-affirmation (a behaviour associated with dealing with threat). METHODS: In total, 350 cancer patients in India were recruited to take part in a study exploring patients' experiences of, and thoughts about, having an illness. They responded to a questionnaire measuring illness perceptions, coping strategies, anxiety, depression, health behaviours, and spontaneous self-affirmation. Patients were asked what words they used to describe their illness; euphemism users were those who used a euphemism (ie, non-medical term) as a first word. RESULTS: About 51% of patients used a euphemism as a first word. Those with less education, unskilled employment, a lower income, and more children were more likely to be euphemism users. Euphemism users reported (a) weaker illness perceptions (less personal control, greater reporting of symptoms, and less understanding of their condition), (b) less use of 3 of 14 coping strategies, (c) less likelihood of spontaneously self-affirming, and (d) fewer healthy eating days. CONCLUSIONS: Euphemism use in patients was not related to distress but was related to negative illness perceptions and use of fewer coping strategies, suggesting that we need further study about the extent to which euphemisms signal issues in psychological adaptation to cancer diagnosis.