Palliative Care: Caregiver’s Reflective Praxis
Heloisa Cremonez Marcassi, Laura Maria Dall’Oglio, Isabella Maltauro Juliano, Priscilla Dal Prá Campos, Elaine Rossi Ribeiro

Objectives: Palliative patients need a caregiver, often a family member, to assist their daily activities. The relationship helps in the mourning process and brings better sharing of decision making, but it can bring the burden of care. Studies exploring the mixed view brought by caregiver’s daily practice in palliative care are scarce. Therefore, that was the target of the research. Methods: Descriptive study with a qualitative approach through semi-structured interviews with family members-caregivers of palliative patients in a hospital in Brazil. Results: Most caregivers weren’t familiar with the term “Palliative Care”. The recurrent miscommunication and lack of tact between doctor and patient’s family was highlighted. However, most caregivers were aware of the patient’s condition. They described changes in routine after becoming caregivers, which generated financial difficulty and the feeling of living someone else’s life. Many reported strengthening religious life to deal with the current situation. Amid physical and emotional overload, often reinforced by the need to mask their feelings and by personal exigency, caregivers reported feeling powerless and guilty, but also useful in their role and feeling both abandoned and supported by the community around them. Conclusion: Caregivers revealed antagonistic and dubious feelings regarding the act of caring, being present and preserving human dignity. Personal overload emerged frequently in the speeches and guilt was the determinant for them to move forward despite physical, mental and spiritual tiredness. That can be mitigated through dialogue between professional team, patient and family, when doubts regarding the palliative care process are clarified.

Full Text: PDF     DOI: 10.15640/ijhs.v8n4a4