Empowering families to take on a palliative caregiver role for patients with cancer in India: Persistent challenges and promising strategies

Abstract

BackgroundThe population of patients with cancer requiring palliative care (PC) is on the rise in India. Family caregivers will be essential members of the care team in the provision of PC. ObjectiveWe aimed to characterize provider perspectives of the challenges that Indian families face in taking on a palliative caregiving role. MethodData for this analysis came from an evaluation of the PC-PAICE project, a series of quality improvement interventions for PC in India. We conducted 44 in-depth semi-structured interviews with organizational leaders and clinical team members at seven geographically and structurally diverse settings. Through thematic content analysis, themes relating to the caregivers' role were identified using a combination of deductive and inductive approaches. ResultContextual challenges to taking up the PC caregiving role included family members' limited knowledge about PC and cancer, the necessity of training for caregiving responsibilities, and cultural preferences for pursuing curative treatments over palliative ones. Some logistical challenges include financial, time, and mental health limitations that family caregivers may encounter when navigating the expectations of taking on the caregiving role. Strategies to facilitate family buy-in for PC provision include adopting a family care model, connecting them to services provided by Non-Governmental Organizations, leveraging volunteers and

Facilitators of palliative care quality improvement team cohesion

“…Rather than analyzing the perspectives of family caregivers in the delivery of PC, we focused on the diverse perspectives of organizational leaders, clinical leaders, and clinical team members to understand the implementation of organizational PC-PAICE teams, both interdisciplinary and clinical in nature. Because family caregivers often play key roles in caring for patients with palliative needs, we intend to further explore how to incorporate family members and caregivers into PC teams in a separate secondary analysis of this large PC-PAICE data set (Fereydooni et al, 2022). Furthermore, we acknowledge that the implementation of PC-PAICE was not intentionally informed by either CFIR or organizational theories.…”

Caregivers’ mental health in cancer journey: A Review

“…Financial constraints compound these difficulties, making it crucial to develop targeted awareness campaigns, innovative solutions for remote access and inclusive, cost-effective support options [75]. The overarching objective is to cultivate an accessible and supportive environment for every caregiver, ensuring they can navigate the intricacies of cancer caregiving with resilience and strength [76,77].…”

Perceptions and Experiences of Informal Caregivers of Breast Cancer Patients in South India: A Qualitative Study

“…Indian studies on breast cancer caregiving burden have limited themselves to standalone factors such as stigma or financial burden (Nyblade et al, 2017;Alexander et al, 2019) and not explored the complexity of the concept. Most of the qualitative studies addressing this theme are restricted to formal caregiver experiences (Daniel et al, 2022;Fereydooni et al, 2022). A more recent systematic review on the subject has underscored the paucity of qualitative studies in low-and middleincome countries exploring breast cancer caregiving experiences (Kusi et al, 2020).…”