Palliative Care Needs in Advanced Non-Malignant Chronic Conditions: A Qualitative Study of Greek Patients’ and Caregivers’ Perspectives

TL;DR

Greek patients with chronic non-cancer conditions and their caregivers face significant unmet needs in care, emotional support, and healthcare access, highlighting the need for better community-based palliative care.

Contribution

The study identifies unmet palliative care needs in non-malignant chronic conditions and proposes integrated community-based care models and a needs-assessment tool.

Findings

Patients and caregivers face unmet needs in daily physical care, emotional burden, and healthcare navigation.

Family support and spirituality help cope but cannot replace systemic care gaps like home-based nursing and psychological support.

Five key themes emerged: daily care, emotional impact, social withdrawal, support systems, and healthcare system experience.

Abstract

What are the main findings?
Patients with advanced non-malignant chronic conditions and their caregivers experience substantial unmet needs across daily physical care, psychosomatic burden, social isolation, and navigation of the healthcare system.Family support and spiritual practices function as key resilience mechanisms, yet cannot compensate for systemic gaps such as a lack of home-based physiotherapy/nursing, caregiver training, and structured psychological support.

Patients with advanced non-malignant chronic conditions and their caregivers experience substantial unmet needs across daily physical care, psychosomatic burden, social isolation, and navigation of the healthcare system.

Family support and spiritual practices function as key resilience mechanisms, yet cannot compensate for systemic gaps such as a lack of home-based physiotherapy/nursing, caregiver training, and structured psychological support.

What are the implications of the main findings?
The findings highlight the urgent need to develop community-based, integrated palliative care models that provide home-based clinical services, caregiver respite, and psychosocial support tailored to non-malignant chronic conditions.The results support the future development and validation of a multidimensional needs-assessment tool to guide referral pathways, strengthen caregiver preparedness, and inform policy initiatives for equitable palliative care access.

The findings highlight the urgent need to develop community-based, integrated palliative care models that provide home-based clinical services, caregiver respite, and psychosocial support tailored to non-malignant chronic conditions.

The results support the future development and validation of a multidimensional needs-assessment tool to guide referral pathways, strengthen caregiver preparedness, and inform policy initiatives for equitable palliative care access.

Background/Objectives: Palliative care (PC) has traditionally focused on patients with cancer and their families. However, individuals living with advanced non-malignant chronic diseases and their caregivers face comparable challenges that significantly affect their quality of life. This study aimed to explore the PC needs of patients with advanced non-malignant chronic conditions through the lived experiences of both patients and their informal caregivers. Methods: Semi-structured interviews were conducted with eight patients and nine caregivers recruited via the Municipality of Katerini “Help at Home” program (Jan–Mar 2025). Interviews were audio-recorded, transcribed verbatim (in Greek), and analyzed inductively using reflexive thematic analysis. Ethical approval was obtained from the International Hellenic University (Ref. No. 18/22.12.2022), and official consent was gained from the Municipality of Katerini (Approval Ref. No. 7803-/30/01/2025). Results: Five themes emerged: (1) basic daily care and physical support; (2) psychosomatic and emotional impact; (3) social withdrawal and role change; (4) support systems and coping resources; and (5) experience with the healthcare system and organized care. Participants highlighted urgent needs for home-based physiotherapy/nursing, caregiver respite, and psychological support. Coping and resilience-related resources—expressed through family support, familiarity of the home environment, and spirituality—were described as essential mechanisms that helped dyads sustain home care and shaped how needs were experienced across multiple domains, particularly amid service gaps. Conclusions: These findings document complex, interlinked needs among patients with advanced non-malignant chronic conditions and their caregivers and support the development of community-based, integrated PC services. Larger, multicenter studies and the development/validation of a needs-assessment tool are recommended.

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