Invisible But Essential: A Qualitative Study on the Experiences of Informal Caregivers in Home-based Palliative Care

Area of Science:

• Oncology
• Palliative Care
• Psychology

Background:

• Informal caregivers provide crucial support throughout cancer care.
• Emotional and psychological experiences of these caregivers are underexplored, especially in home palliative care.
• Understanding caregiver experiences is key to developing effective support systems.

Purpose of the Study:

• To explore the emotional and subjective experiences of informal caregivers of cancer patients in home-based palliative care.
• To identify challenges and rewards associated with informal cancer caregiving.
• To inform the development of targeted support interventions for caregivers.

Main Methods:

• Qualitative exploratory study using semi-structured interviews.
• 12 informal caregivers of cancer patients in Croatia were interviewed.
• Thematic analysis was used to analyze interview data.

Main Results:

• An overarching theme of "Still Invisible but Essential" emerged.
• Major themes included confronting incurable diagnoses and the length-vs-quality of life paradox.
• Caregivers reported emotional challenges, communication difficulties, decision burdens, and unmet support needs.

Conclusions:

• Informal caregivers are essential in home palliative care but often overlooked.
• Findings underscore the need for interventions addressing both practical and emotional caregiving aspects.
• Results can inform policy, clinical practice, and support services in Croatia and similar settings.