Processes and Meanings of the Patient-Family Caregiver Dyad in Palliative Care During the Hospital-Home Transition

Monday, 30 October 2017: 9:50 AM

Edier Arias Rojas Sr., MsC
School of nursing, Universidad Nacional de Colombia, Bogota, Colombia
Gloria Mabel Carrillo Gonzalez, PhD, MSN, RN
Facultad de Enfermería, Universidad Nacional de Colombia, Bogotá, Colombia
Sonia Carreno-Moreno, PhD, MSN, RN
School of Nursing, Universidad Nacional de Colombia, Bogotá, Colombia
Rocio Lopez, MsC
nurse especialist, nurse, Bogota, Colombia
Diana Cardenas, MsC
Universidad Nacional de Colombia, Bogota, Colombia

Processes and meanings of the Patient-Family Caregiver Dyad in Palliative Care during the Hospital-Home Transition

Home palliative care enhances the quality of life of patients and their families, increases satisfaction with the care received, and generate a positive economic impact upon healthcare systems. Voids are identified with respect to experiences in the hospital-home transition within the Latin American setting and particularly in Colombia.

Objective: this work aimed to describe the experience of the patient-family caretaker dyad in palliative care during the transition process between the hospital and the home at Colombia’s National Cancer Institute in Bogotá.

Method: this was a qualitative study, through grounded theory, with the participation of 44 informants, 22 patients in palliative care, and 22 family caregivers. Data analysis was performed through the constant comparison method.

Results: six themes emerged that reflect the experience of the dyad comprised by the person in palliative care and his or her family caretaker. The dyad confronts the prognosis and progression of the disease at home and addresses the anticipated grief to understand how to manage the symptoms, the patient’s physical discomfort – especially pain, listlessness, lack of mobility, and problems with sleeping, which added to the economic costs of acquiring supplies are overwhelming, as are the administrative procedures to gain access to health consultations and services. Emotional and spiritual support are permanently required, considering it fundamental to have a palliative care staff that responds in timely manner to their concerns. In many cases, these patients do not know how to have access to said staff, recognizing that they must endure the situation on their own, without the guidance they would expect from the healthcare system.

Conclusions. Key aspects are identified to guide palliative care staff in dealing with users who live the experience of the transition from the hospital to the home.