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Barriers and resources to care: A phenomenological qualitative approach to the reality of the formal caregiver

Abstract:

Objective: This study explored the reality of formal caregivers for people in palliative care and with chronic or degenerative diseases by analyzing the barriers and resources they face. Method: Between October and December 2016, 84 formal caregivers from three private institutions of various levels of care in Quito (Ecuador) participated in semi-structured interviews that were recorded on audio, transcribed verbatim, and analyzed from a phenomenological perspective using the Atlas.ti 7.5.10 software package. Results: External barriers regarding the lack of provision of education and public services by the State were most prevalent. On the other hand, the most predominant resources were satisfaction and sense of meaning in serving and caring. Other aspects lied along the continuum between barriers and resources, depending on how they were handled. These included: knowledge and understanding of illnesses and palliative care, social support, personal experiences, and self-care. Conclusions: Formal caregivers for people with chronic, degenerative, and palliative care diseases perceive great satisfaction in their work; however, they also face daily situations that may be perceived as barriers to caring. The costs and benefits experienced during their daily activities directly influence the perception of their work, the quality of care they provide, and the quality and quantity of self-care they practice. Understanding and effectively managing these experiences may positively support formal caregivers.