Voices of Resilience: Lived Realities and Challenges of Caregivers for Cancer Patients Receiving Palliative Care – A Qualitative Perspective

INTRODUCTION

Cancer, a major non-communicable disease, is often associated with death and disability. In its advanced stages, it not only poses a threat to life but also leads to substantial physical and functional decline. Patients in this stage frequently become bedridden, experience profound physical and emotional distress and rely heavily on caregivers for assistance with activities of daily living.^[1] Cancer remains one of the leading causes of morbidity and mortality worldwide, accounting for approximately 17% of global deaths in 2020.^[2] In high-income countries, it is the second most common cause of death, following cardiovascular diseases, while in developing countries, such as India, it ranks third. According to the American Cancer Society (GLOBOCAN 2022), the global burden of cancer continues to rise, with an estimated 20 million new cases and 9.7 million cancer-related deaths reported in 2022.^[3] In India, the prevalence of cancer is significant, with around 2–2.5 million cases, and 700,000–900,000 new cases reported annually. The majority of these patients present at an advanced stage of the disease, contributing to poor prognosis and high mortality rates.^[4]

The incidence of cancer in Punjab remains a significant concern. According to recent data from the Indian Council of Medical Research-National Cancer Registry Programme, the estimated count of cancer cases has risen from 39,521 in 2021 to 42,288 in 2024, which indicates a 7% increase.^[3] In data from PGIMER Chandigarh, the cancer cases reported between 2000 and 2010 were 3,000–4,000, which nearly doubled between 2011 and 2015 and 5,000–7,000 cases. Punjab accounts for approximately 65% of the total cancer patients in this reported incidence, Haryana follows 20–25% while Himachal Pradesh contributes 10–15%, and patients from other states, such as Uttarakhand, Jammu and Kashmir, make up about 5% of the total cases at PGIMER.^[4]

Palliative care is an approach that improves the quality of patients and their families by preventing and relieving suffering, whether physical, psychosocial or spiritual. Globally, most patients in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), acquired immunodeficiency syndrome (5.7%) and diabetes (4.6%). Other conditions such as chronic kidney disease, multiple sclerosis, Parkinsonism, neurological disease and drug-resistant tuberculosis may also require palliative care.^[5]

In India, palliative care was started as the Shanti Avedna Sadan in Mumbai, a hospice, in 1986, followed by the formation of the Indian Association of Palliative Care in 1994. Despite significant efforts over the years, the reach of palliative care remains limited, currently available to <1% of the people in India.^[6,7] Barriers include lack of awareness, limited accessibility and inadequate integration into mainstream health services.^[8,9]

Cancer patients have family caregivers who provide care for multiple and varied durations. Levels of involvement in the care depend on the severity of symptoms, treatments required, stage of disease or closeness to death.^[10] Beyond reducing life expectancy, palliative care imposes considerable burdens that extend beyond patients to their caregivers. Moreover, in a traditional society like India, the family assumes a pivotal role throughout the cancer trajectory, often perceiving the illness not merely as the patient’s burden but as a shared familial challenge.^[6] The term cancer itself leads to shock and fear due to reasons of very high treatment costs and poor chances of survival. The burden associated with cancer treatment often causes severe distress among patients as well as family members. A study conducted among caregivers of advanced cancer patients reported significant psychological burden and distress.^[7]

Caregiving activities undertaken for people who are at the terminal stage of cancer include self-care assistance, communication, household work, psychological support, feeding, managing financial issues, medical care such as management of patients with pain, administration of medications and therapies such as chest physiotherapy, range of motion exercises and managing infusion lines.^[11,12]

Despite the crucial role played by caregivers in the end-of-life care of cancer, limited qualitative research exists on their lived experiences, especially in Indian hospice settings. As per the literature review, existing studies have primarily focused on the experiences of caregivers in the home-based palliative care (e.g., Mumbai)^[13] or in hospital settings (e.g., Bengaluru, where focus is primarily on patient perspectives rather than caregivers), with only a few addressing hospice-based care specifically.^[14] This gap in the literature forms the basis for the present study, which aims to explore the lived realities of caregivers within hospice, a setting largely underexplored in India. Understanding the lived experiences of these caregivers is crucial for developing targeted interventions that address their unique challenges and bolster their resilience. By giving voice to caregivers’ experiences, this study seeks to uncover the challenges and shed light on their struggles and strengths that can guide future palliative care policies and practices.

MATERIALS AND METHODS

RESULTS

Table 1 depicts the socio-demographic data of participants. The caregivers (n = 15) had a mean age of 43.9 ± 13.4 years, ranging from 21 to 68 years. The largest proportion (40%) was in the 40–49 years age group, followed by those in the 18–28- and 50–59-year groups (20% each). More than half of the participants were female (53.3%), and the majority were married (73.3%). Regarding education, most caregivers had completed primary or higher education, while 13.3% were illiterate. The occupations of participants varied; one-third were homemakers, and others were engaged in private service (26.7%), daily wage labour (26.7%) or government service (13.3%). Per capita monthly income varied, with over half (53.3%) falling in the Rs 1001–2500 range, and about a quarter (26.7%) in the lowest category (< Rs 1000).

The caregivers were primarily close family members such as spouses (40%), children (26.7%), siblings (26.7%) and parents (13.3%) of the patients. More than half of participants (66.7%) had been providing care for more than 1 year, highlighting the long-term nature of caregiving responsibilities. A few caregivers (13.3%) reported a history of physical or psychological illness, which may have added to their caregiving burden. Significantly, all caregivers (100%) stayed with the patients in the hospice during admission, reflecting the continuous nature of caregiving in this setting.

DISCUSSION

The primary objective of the present study was to explore the lived experiences of caregivers of cancer patients receiving palliative care. The hospice served as the context for data collection rather than the focus of comparative analysis with other care settings. By situating this research in a hospice, however, the study adds to the limited literature on caregiver experiences within institutional palliative care in India.

The findings reveal deep insight into the multifaceted challenges, including emotional distress, physical burden, financial strain, role conflicts and spiritual complexity, a lack of awareness about the nature of the treatment of cancer in the advanced stage. Many caregivers expressed hope that their loved ones might recover if allowed to stay longer in hospice, while others struggled to resolve the reality of terminal illness with their caregiving role. The hospice setting, where caregivers often stay continuously with patients, provides structured medical, psychological and spiritual support. This environment may influence the caregiving experience in ways that differ from home-based or hospital-based care, by easing some practical burdens but also intensifying the emotional strains. These findings highlight the urgent need to address the burden on caregivers and enable them to maintain their lives as usual to protect their overall well-being.

In the current findings, the caregivers reported a range of reactions, including shock, disbelief, denial, anxiety and eventual acceptance. Several participants reported that being informed of the disease’s incurable nature was even more devastating than the initial diagnosis. These experiences align with existing literature, Sherman et al. (2014), where caregivers reported being unprepared for the disease progression and overwhelmed by emotional responses.^[16]

The caregiving role significantly affected the health behaviour and lifestyle of caregivers. Participants reflected physical symptoms such as fatigue, headaches, muscle pain, appetite disturbances and insomnia. The inability to prioritise their health led to physical and emotional deterioration. These findings resonate with a study by Vitaliano et al. (2003), showing that caregiving leads to adverse physical health issues among caregivers.^[17] Beyond personal neglect, caregivers also reported disruption of family dynamics and parenting responsibilities. Some expressed regret and grief as their children became emotionally neglected or even involved in substance abuse. This highlights the cascading effects of caregiving on the family, extending the understanding of caregiving burden beyond individual health to family-level disintegration. This study also reveals intense self-sacrificing behaviour among caregivers, including the neglect of their own health deterioration. For instance, one caregiver’s report of severe anaemia emphasises how personal health crises are often deprioritised in favour of patient care. Similar findings have been reported in existing literature, where caregivers of terminally ill patients experienced significant physical strain and delayed medical attention for their own health.^[13,18]

The most dominant theme reported in this study was the financial burden. Caregivers often develop financial security to meet the expenses of medication, transportation and hospice services. This finding mirrors the study by Zafar et al. (2013), indicating that families caring for cancer patients experience financial toxicity.^[19] Several caregivers reported that they had to quit jobs, suspend education or give up personal goals to meet caregiving demands. These patterns are consistent with a study by Reinhard et al. (2008), showing caregiving adversely affects employment, career trajectories and financial independence.^[20] In the present study, a unique observation was the duality of spiritual response. While faith in the divine offered strength to many, several caregivers expressed anger at God. Caregivers frequently engaged in rituals, prayers and used indigenous medicines, believing they brought relief or peace to the patient. This is consistent with findings by Puchalski et al. (2014), who noted that spirituality can enhance meaning-making and resilience in palliative care.^[21] However, beliefs in supernatural powers, for example, black magic, reflect deep-rooted cultural frameworks influencing caregiver belief systems, contemplating a need for culturally sensitive health education.

Support from extended family, friends and other networks varied widely. While some caregivers received considerable help, others experienced social isolation, stigma or lack of assistance. These findings align with the study by Northouse et al. (2012), who emphasise the importance of a robust social support system and that inadequate social support increases caregiver distress and impairs coping.^[22] The findings in the present study also highlight the dual distrust experienced by caregivers towards their families and the medical system, resulting in social withdrawal and caregiver isolation. Many believed that others would not offer the same level of care, while some feared cultural judgment for accepting help.

Many caregivers reported limited understanding of cancer and its progression, palliative care and treatment plans. This lack of knowledge often contributed to distress and confusion. These findings are supported by Hudson and Payne (2011), who brought to the fore that knowledge deficits in caregivers hinder care planning and increase anxiety.^[18] The present study also highlights that there was widespread turmoil among caregivers regarding the nature of care being provided at the hospice. Many caregivers misunderstood palliative care as curative. They associated symptom relief with recovery and believed an extended hospice stay could result in disease remission. This misinterpretation reveals a crucial gap in communication and points to the need for clear and repeated explanation of palliative goals.

CONCLUSION

This study contributes new insights into the caregiver literature in palliative cancer care, revealing the multidimensional challenges they face. While emotional and physical distress among caregivers is well established, this study uniquely highlights the underreported dimensions, such as (i) the cultural tension between spiritual hope and superstitious fear, (ii) the profound disruption of family roles leading to intergenerational stress and (iii) persistent misunderstandings of palliative care as curative, even in a hospice setting. The physical self-neglect and dual distrust in both healthcare systems and family networks uncover that caregiving is not only burdensome but deeply isolating. The findings from the study suggest the need for more culturally sensitive communication, family-inclusive education and caregiver-focused interventions in palliative care. Care for the caregiver is not optional; it is essential.