Education Programs for Informal Caregivers of Noncancer Patients in Home-Based Palliative Care: A Scoping Review.

Abstract

The literature available on the topic of education programs for noncancer patients' informal caregivers (ICs) is heterogeneous and fragmented in the setting of palliative care (PC). We conducted a scoping review (ScR) to map the literature on educational programs for ICs in home-based PC, considering the available reviews, qualitative studies, observational studies, studies of validation of measurement tools, uncontrolled trials, nonrandomized controlled trials, and feasibility studies. This ScR included 21 eligible records by searching PubMed, Web of Science, Embase, Scopus, and CINAHL databases. The most common types of study designs were literature review (28%), qualitative research (24%), and experimental or quasiexperimental research (19%). A total of 57% of educational interventions or programs were mainly supplied by nurses, alone or with other health professionals; specifically, nurses mostly led supportive intervention (n = 2; 25%), education programs (n = 2; 25%), and app development. Different factors at the microsystem, macrosystem, mesosystem, and exosystem levels might help or hinder the implementation of IC education. Although ICs might more easily access online programs, accessibility and digital exclusion might represent significant barriers. Supportive interventions might positively affect family ICs' preparedness, competence, burden, care outcomes, and experiences related to their role; moreover, it might increase ICs' self-rated competence in all key areas: physical, emotional, psychological, social, informational, and spiritual. ICs can improve their knowledge, confidence, and attitudes toward PC. The literature summary might render the assistance more accessible to ICs to improve the quality of caregiving and nursing care linked to patient and caregiver outcomes. However, robust studies (e.g., randomized controlled trials) are still required to identify and establish the efficacy of each described intervention and, therefore, offer tailored approaches considering the diverse diseases and social and cultural characteristics of patients and ICs.