RESUMO
BACKGROUND: Addressing informal caregivers' needs is essential for ensuring quality healthcare and promoting citizen-centred care. This systematic review assessed current knowledge about programmes aimed at meeting the needs of informal caregivers of adults who are dependent on others for daily life activities. METHODS: Following the PRISMA guidelines, the electronic databases EBSCOhost Research Platform, MEDLINE, CINAHL, Scopus, Web of Science and The Virtual Health Library were searched for randomized experimental studies published between 2012 and 2022 that implemented programmes addressing informal caregivers' needs to improve their experiences, health, and well-being. Quality was assessed using the standardized critical evaluation tools from the Joanna Briggs Institute. Two independent investigators performed the eligibility assessment and data extraction. Quantitative data on the effectiveness of interventions were collected, and the content of each intervention was synthesized and aggregated into categories, through narrative synthesis. RESULTS: The majority of the included studies (n = 16) were conducted in European countries and implemented a structured intervention programme compared to the provision of usual care. The studies were of fair to high methodological quality, with a higher risk of bias related to blinding. The results supported the achievement of favourable health outcomes among informal caregivers, namely improvements in mental health (n = 3) and quality of life (n = 3) and a decrease in psychological symptomatology (n = 5) and burden (n = 3). None of the interventions reported adverse outcomes; however, five studies did not describe significant differences in the outcomes assessed after the implementation of the programmes. Interventions focusing on training and educating caregivers (n = 14) and cognitive-behavioural strategies (n = 7) were the most common, while programmes focusing on emotional and psychological support as a resource to improve caregivers' psychological outcomes were scarce. CONCLUSIONS: This systematic review adds to the growing body of evidence and insight showing that programmes that address informal caregivers' needs seem to contribute to better physical and psychological health outcomes through the promotion of caregivers' educational support and the implementation of cognitive-behavioural strategies. Future research should implement methodologically robust cross-country programmes tailored to informal caregivers' physical, emotional, psychosocial, societal, and educational needs throughout the care trajectory.
RESUMO
BACKGROUND: Cancer patients experience distress as a result of their health condition, which, in turn, contributes to the progression of the disease. Moreover, their daily activities, well-being, and health status are significantly impacted by pain and other symptoms. In this context, empowering these patients with self-care and pain management skills can greatly contribute to effective symptom control. AIM: To develop and implement an educational approach focused on empowering family caregivers and patients with advanced cancer in effectively managing pain at home. METHOD: An educational program, PECP/C-Pain Management, was developed to empower family caregivers and cancer patients to manage pain at home. A quasi-experimental study involving 52 participants with advanced cancer was conducted to test the program. Participants' skills, behaviors, and knowledge related to self-care and pain management were assessed before and after the intervention using an appropriate instrument, the Pain Management Knowledge and Behavior Scale. RESULTS: Pain was reported as the primary symptom, and following the educational program, participants were able to monitor pain and other symptoms and effectively self-manage their treatment. CONCLUSIONS: The findings suggest that the PECP/C-Pain Management intervention was effective in improving participants' knowledge and skills in managing pain, leading to better symptom control. In addition, the Pain Management Knowledge and Behavior Scale is a reliable tool for measuring the outcomes of this intervention.
