Preparedness for Caregiving Role and Telehealth Use to Provide Informal Palliative Home Care in Portugal: A Qualitative Study

Abstract

Background/Objectives: Given the increasing occurrence of long-term illnesses, it is imperative to focus on adequately preparing and assisting those who assume the responsibility of caregiving. Our study aims to explore whether caregivers feel prepared to provide informal palliative home care, their experiences, and the usefulness of telehealth in managing daily activities. Methods: Using a descriptive qualitative research design and a purposeful sampling technique, thirteen primary family caregivers who provide informal palliative home care were recruited. Data collection was conducted through face-to-face individual interviews conducted from May 2023 to July 2023. Data were analyzed using Braun and Clarke's reflexive thematic analysis. Results: Caregivers were mainly female (n = 8) with a mean age of 59.5 years (SD = 9.42). Based on our findings, three overarching themes emerged: (1) becoming a caregiver, (2) support-from-home palliative care team, and (3) telehealth in palliative home care. The reasons that influence the preparedness of family caregivers include their own desires, health conditions, their range of responsibilities, and the consequences that arise from the situation's complexity. Telehealth helps fulfill the patient's wishes to be at home in EoL and provides caregivers with access to professional guidance and support. Conclusions: Specialized home-based palliative care teams must be aware of caregivers' self-assurance, knowledge, skills, and aptitudes in carrying out daily responsibilities and in managing emotions to improve preparedness for caregiving, loss, and its aftermath. The provision of professional PC services in the home along with a robust support system for informal caregivers is invaluable.

Keywords: Portugal; caregivers; home care; palliative care; preparedness; qualitative study; telehealth.