Palliative care aims to improve the quality of life for patients and families dealing with life-threatening illnesses by preventing and relieving suffering.¹ While much focus is on symptom control for patients, the emotional experiences of family caregivers often go unnoticed. Family caregivers witness a slow decline, increased dependency, uncertainty, and the approach of death. Their suffering typically remains silent, prolonged, and unsupported.

In India, caregiving responsibilities are deeply embedded in family dynamics. Relatives often take on roles as nurses, counselors, decision-makers, and emotional supporters without official training or psychological preparation.² This burden intensifies in terminal illnesses where a cure is no longer an option, and care shifts to comfort. Caregivers may face feelings of helplessness, anticipatory grief, financial strain, social isolation, and fear of losing their loved ones.^3,4

Kashmir faces unique psychosocial and healthcare obstacles. Emotional resilience is frequently challenged by financial limitations, limited palliative care resources, and social expectations related to caregiving. Despite this, there is little literature exploring the experiences of caregivers in palliative environments in this region.^5,6

This study aims to explore the emotional realities, perceptions, and unmet needs of family caregivers accompanying patients receiving end-of-life care in a palliative clinic in Srinagar.

MATERIALS AND METHODS

Study design and setting

This qualitative phenomenological study took place in the palliative care clinic of a tertiary teaching hospital in Srinagar, Jammu and Kashmir, India, from January 2026 to April 2026. The phenomenological approach was selected to capture the lived experiences of caregivers in depth, consistent with established qualitative methodology.^17,18

Participants

Primary family caregivers of patients receiving palliative or end-of-life care were eligible to participate.

Inclusion criteria

• Age over 18 years
• Primary caregiver of a terminally ill patient
• Willingness to participate
• Ability to communicate in Kashmiri, Urdu, or English

Exclusion criteria

• Attendants with a diagnosed mental illness
• Unwilling participants
• Attendants of clinically stable patients who do not require palliative support

Sampling technique

Purposeful sampling was used until saturation was reached, consistent with standard qualitative practice.^16,17

Data collection

Semi-structured in-depth interviews lasting 20 to 40 minutes were conducted in a private area within the clinic. Open-ended questions explored:

• Emotional experiences during care giving
• Thoughts about incurable illness
• Experiences of support or isolation
• Communication with healthcare professionals
• Coping methods and spirituality

Interviews were recorded after obtaining informed consent and transcribed verbatim.

Ethical considerations

Institutional approval was obtained before starting the study. Written informed consent was collected from all participants. Confidentiality and anonymity were ensured.

Data analysis

Thematic analysis was conducted manually following the framework described by Braun and Clarke.¹⁶ Researchers repeatedly read and coded the transcripts to identify emerging themes and subthemes collaboratively.

RESULTS

Fourteen attendants participated in the study. The group included spouses, children, siblings, and parents of terminally ill patients.

Theme 1: Loss of hope after recognition of incurable illness

Most attendants described a moment when they realized recovery was impossible, consistent with patterns of anticipatory grief described in the literature.^22,23 This realization often led to emotional collapse and a sense of helplessness. One participant shared:

“When doctors told us there was nothing more to cure, it felt like the world ended for us.”

Several attendants found it hard to accept the change from curative treatment to comfort care, mirroring findings from prior studies on caregiver responses to palliative transitions.^7,13

Theme 2: Emotional exhaustion and loneliness

Caregivers often described feeling emotionally abandoned despite being surrounded by family members.^3,4,8 This “emotional invisibility” has been documented in prior palliative care research:

“Everyone gives advice, but at night I was alone with my mother’s pain.”

Many attendants reported lack of sleep, anxiety, emotional numbness, and difficulty expressing their own fears. Women caregivers often mentioned neglecting their own health and withdrawing socially, consistent with published data on gender differences in caregiver burden.^11,12

Theme 3: Fear of suffering and death

Witnessing pain, difficulty breathing, and decline caused intense distress. Anticipatory grief was common among caregivers of advanced cancer patients, corroborating existing literature.^26,27

“I was not afraid of death itself. I was afraid of watching him suffer every day.”

Theme 4: Financial and social burden

Frequent hospital visits, medical expenses, and lost jobs added to psychological pressure, reflecting well-documented economic consequences of terminal illness in low- and middle-income countries.^49,50

“Treatment drained our savings. We stopped thinking about ourselves.”

Some attendants felt unsupported by extended family during long illnesses.

Theme 5: Importance of compassion and communication

Participants valued healthcare workers who communicated honestly and with empathy, consistent with clinical practice guidelines for end-of-life communication.^24,25,44

“One doctor simply sat with us and calmly explained everything. That gave us strength.”

Several attendants requested counseling services and emotional support groups for caregivers, aligning with recommendations from systematic reviews of psychosocial interventions.^10,48

DISCUSSION

This study shows the intense emotional suffering faced by caregivers of patients receiving end-of-life care. The findings highlight that care giving involves more than physical help; it includes ongoing emotional adjustments to uncertainty, suffering, and impending loss.^3,4

Loss of hope was a central theme. Similar findings have been noted in studies about caregiver distress in advanced illnesses. Families often perceive the shift from active treatment to palliative care as “giving up,” especially in cultures where caregiving is tied to hope and survival.⁷

Loneliness and emotional exhaustion were notable despite the strong family ties expected in Indian society. Caregivers frequently suppress their feelings while focusing on patient comfort. This emotional invisibility has been noted in earlier palliative care studies.^3,4,8

Financial strain further intensified caregiver burden. In low- and middle-income countries, prolonged illness often disrupts household income and savings.^2,6 Together, the emotional and financial effects create significant suffering.^30,49

Spirituality and faith emerged as key coping strategies, a finding supported by prior research on religious coping in advanced illness.^21,40

Notably, participants consistently valued compassionate communication. Small gestures of empathy from healthcare workers greatly improved coping and acceptance. This underscores the need for communication skills training and psychosocial support within palliative care systems.^1,3,44

This study adds regional insight from Kashmir, where caregiver experiences are underrepresented in the literature. Acknowledging caregiver suffering is critical for providing complete palliative care.⁵

Limitations

This study was conducted at one tertiary care center with a small sample size. Experiences may differ in community and rural areas. Social desirability bias may also have affected participant responses.

CONCLUSION

Family caregivers of terminally ill patients endure significant emotional distress, loneliness, anticipatory grief, and loss of hope.^3,4,12 Their suffering often remains hidden behind the visible illness of the patient. Compassionate communication, organized psychosocial support, and caregiver-focused interventions should be vital parts of palliative care practice.^1,34,47

In end-of-life care, healing may not always mean a cure. Sometimes, it means ensuring no family feels abandoned while facing loss.^19,20,45

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