Health literacy in communication, decision‐making and outcomes among cancer patients, their families and clinicians in India: A multicentre cross‐sectional qualitative study

Abstract

Objective Cancer patients in India prefer full information regarding diagnosis and prognosis, but evidence suggests poor insight. This study aimed to identify the role of health literacy among adult patients living with cancer, their families and health professionals in decision‐making and treatment outcomes in India. Methods This cross‐sectional in‐depth study recruited patients, families and clinicians from three centers. Inductive thematic analysis informed a novel conceptual model. Results We recruited n = 34 cancer patients, n = 33 family members, n = 11 doctors and n = 14 nurses (N = 92). Principle emergent themes were the following: (1) Preferences and dynamics of diagnosis and prognosis disclosure, for example, the dominant preference was for families who held hope for cure to discourage disclosure; clinicians sometimes disclosed in line with perceived ability to pay for treatment. (2) Understanding of disease and its treatment options (etiology, potential trajectory, treatment options), for example, lay understandings of cancer etiology as contamination from outside the home, and reluctance of patients to ask questions of clinicians. (3) Priorities in decision‐making, for example, not engaging patients due to fear of patient distress, patients initiated on anticancer treatments without knowledge or consent, pursuing futile treatments. (4) Anxieties over finances and outcomes (disclosure, decision‐making, care pathways), for example, clinicians attempting to reduce families pursuing expensive and inappropriate treatment options with patients who have poor insight, catastrophic spending based on poor decisions. Conclusion The novel evidence‐based health literacy model offers potential for feasible and acceptable intervention to support families in communication, disclosure and decision‐making. This may improve patients' access to informed, appropriate care pathways.

Providing person-centered palliative care in conflict-affected populations in the Middle East: What matters to patients with advanced cancer and families including refugees?

“…Therefore, they preferred nondisclosure of information ( 37 , 38 ). These findings were corroborated in a multicentre cross-sectional qualitative study in India, which demonstrated that while clinicians were motivated by professional values to disclose cancer related information, they experienced pressure from family members to conceal information ( 39 ).…”

Scientific production on health literacy in the palliative care context

“…No estudo do Harding et al (2021) o letramento em saúde desempenha um papel importantíssimo na interpretação das informações fornecidas pelos profissionais, podendo interferir de modo direto na qualidade do autocuidado, uma vez que o não entendimento das orientações realizadas nos cuidados paliativos, podem causar ansiedade e insegurança na realização do cuidado, aumentando os desfechos clínicos negativos. As evidências apresentadas pelo estudo, dispõe que grande parte da população em fase paliativa com letramento em saúde limitado, pode ter divergência no entendimento das informações transmitidas pelos prestadores de cuidado.…”

“…O estudo considera que o letramento em saúde com base em evidências inserido na população em fase paliativa pode melhorar a resposta de aceitação do paciente e da família, refletindo em uma tomada de decisão compartilhada, podendo seguir o melhor caminho para a fase final de sua vida (Harding et al, 2021).…”

Exploring the Influence of Decisionmaking Style and Financial Status of Cancer Patients on Varied Cultural Aspects of Decision Process

“…Studies suggest that in India, the patients and their families often put the burden of the medical decision solely on the doctors' expertise and remain a passive audience to the decision-making process (Jacob, 2014;Sareen & Dutt, 2019). Various factors such as high financial burden of cancer, low education and knowledge about the disease, and low financial status that renders the possibility of taking second opinions impossible, were associated with the high prevalence of paternalistic decisionmaking (Harding et al, 2022;Mathew et al, 2020). Conversely, patients with higher socioeconomic status and greater literacy levels were more actively involved in the decision process (Datta et al, 2017;Harding et al, 2022).…”

“…Various factors such as high financial burden of cancer, low education and knowledge about the disease, and low financial status that renders the possibility of taking second opinions impossible, were associated with the high prevalence of paternalistic decision-making (Harding et al, 2022; Mathew et al, 2020). Conversely, patients with higher socioeconomic status and greater literacy levels were more actively involved in the decision process (Datta et al, 2017; Harding et al, 2022). Such findings indicate that contextual constraints of the patients and family caregivers are fused with and inevitably shape their decision-making style (Blok et al, 2023; Datta et al, 2017; Ram Prakash & Lingam, 2021; Zafar & Peppercorn, 2023).…”