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.

Indian Cancer Patients' Needs, Perceptions of, and Expectations from their Support Network: a Qualitative Study.

Psycho-oncology research in India reveals that family caregivers and oncologists are primary medical decision-makers frequently acting on behalf of the patient. Thus, patients are rarely asked about their wants and needs. This study aimed to understand Indian cancer patients' needs and expectations from their support network. Twenty-six cancer patients participated in semi-structured interviews exploring patients' needs, perceptions of their support network and the type of support they would prefer, and their experiences of receiving this support. The interviews were analyzed using Interpretive Phenomenological Analysis. Emergent themes included: (i) role of the oncologist: being the primary medical decision-maker, communicating in a style consistent with patient preferences; (ii) role of the immediate family: being emotionally available, helping with navigating the hospital system, aiding in medical adherence; (iii) role of relatives and friends: giving advice and providing tangible aid and services; and (iv) role of other cancer patients: helping with coping with the illness. The study highlights Indian patients' ability to define their supportive network and assign specific roles to them. The study implies the need to develop communication training programs and peer-to-peer support groups to address patients' unmet communication needs and aid in coping.

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.

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).

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 .

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).

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.

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.

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.

The relationship between diabetes-related emotional distress and illness perceptions among Indian patients with Type II diabetes.

AIMS: To examine the relationship between diabetes-related emotional distress (DED) and illness perceptions among Indian patients with Type II diabetes (T2D). MATERIAL AND METHODS: 92 patients with T2D completed questionnaires on their demographic and medical details, DED and illness perceptions. Multiple regression analysis was conducted to examine the association between demographic, medical and illness perceptions variables and DED. RESULTS: Increased number of children, personal control and illness-related concern were associated with increased levels of DED. CONCLUSIONS: Additional support is needed for Indian patients with T2D who have more children, greater sense of personal control and higher levels of diabetes-related worry.