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Unseen Burdens: The Hidden Struggles of Primary Caregivers in Palliative Care Environments

Aspin R , Aspin R

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Red Flower's Journal of Psychiatric Nursing 14(2):p 47-53, May. Aug 2025. | DOI: 10.21088/jpn.2277.9035.14225.1

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Aspin R. Unseen Burdens: The Hidden Struggles of Primary Caregivers in Palliative Care Environments. J Psychiatr Nurs. 2025; 14(2): 47–53.
 

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Received : N/A         Accepted : N/A          Published : N/A

Abstract

Background: Palliative care aims to enhance the quality of life for patients with life-limiting illnesses. While much attention is given to patient comfort, the vital role of primary caregivers often family members who provide continuous physical and emotional support is frequently overlooked. These caregivers face a multitude of hidden struggles that include emotional exhaustion, physical fatigue, social isolation, and financial strain. Objectives: This study aims to explore the lived experiences and hidden burdens of primary caregivers in palliative care environments. It seeks to understand their emotional, physical, social, and financial challenges, identify coping mechanisms, and gather their suggestions for support. Methods: A qualitative phenomenological research design was employed. Primary caregivers of patients receiving palliative care were selected using purposive sampling. In-depth, semi-structured interviews were conducted until data saturation was achieved. Thematic analysis was used to analyze the narratives and identify recurring patterns and themes. Results: Emerging themes included emotional vulnerability, disrupted personal lives, lack of formal support, cultural expectations of caregiving, and adaptive coping strategies such as spiritual reliance and informal peer support. Many caregivers reported neglect of self-care, anxiety, anticipatory grief, and a desire for structured support systems including respite care and psychological counseling. Conclusion: The study reveals that caregiving in palliative care settings entails profound, often invisible burdens. There is a critical need to integrate caregiver focused support services within the palliative care framework. Recognizing caregivers as co-recipients of care, rather than mere providers, can contribute significantly to holistic and compassionate palliative care.
 

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Cite this article

Aspin R. Unseen Burdens: The Hidden Struggles of Primary Caregivers in Palliative Care Environments. J Psychiatr Nurs. 2025; 14(2): 47–53.
 

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DOI: 10.21088/jpn.2277.9035.14225.1

Keywords

• Caregiver burden • Palliative care • Lived experience • Qualitative study • Emotional distress • Support needs • Coping strategies

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