Systematic translation and adaptation of the FOCUS program, a USA-based supportive intervention for persons with cancer and their family caregivers, for use in six European countries

Abstract

Purpose Having advanced cancer presents many challenges for patients and family caregivers. The FOCUS program is a psychoeducational nurse-led intervention, developed in the USA, to support dyads of patients with cancer and their family caregivers to live with the illness. The program includes a conversation manual and information resources for dyads. We aimed to develop a version of the program for dyads facing advanced cancer in six European countries. Method The Participatory and Iterative Process Framework for Language Adaptation (PIPFLA) was used to guide the translation of the program to the local contexts of Belgium, Denmark, Ireland, Italy, the Netherlands, and the UK. In several rounds, potential program users (e.g., nurses, clinicians, patients, family caregivers) and researchers from all six countries reviewed program materials and advised on adaptations. Results The PIPFLA process resulted in one European version of the program in different languages (FOCUS +). The FOCUS + conversation manual is uniform across all countries. The main adaptations included additional attention to both family caregiver and patient needs; more emphasis on self-management, advance care planning, and shared responsibilities; discussing the dyad’s outlook rather than optimism; addressing the role of nurses as educational rather than therapeutic; and more suggestions to refer dyads to health care professionals for specific care needs. The information resources for dyads were adapted to fit with local contexts. Conclusion The PIPFLA methodology is an efficient and effective framework to thoroughly translate and culturally adapt a complex USA-based program for use in six European countries in collaboration with end users.

A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: Development using the scrum methodology

“…iFOCUS is available in six languages. As it was developed based on FOCUS+, many materials to be used for iFOCUS had already undergone translation ( van der Wel et al, 2022 ). New materials and information were translated by professional translators with input from palliative care experts who spoke the respective native language.…”

“…In a next phase FOCUS was adapted and translated to a face-to-face program for people with advanced cancer and their family caregivers namely FOCUS+. This process is extensively described elsewhere ( van der Wel et al, 2022 ). FOCUS+ served as the foundation for the development of the iFOCUS program.…”

“…In the present article we specifically report on the development process of the iFOCUS program. Development of the FOCUS+ program has been reported elsewhere ( van der Wel et al, 2022 ).…”

Improving the Well-Being of People With Advanced Cancer and Their Family Caregivers: Protocol for an Effectiveness-Implementation Trial of a Dyadic Digital Health Intervention (FOCUSau)

“…The strong empirical base and utility of the FOCUS (USA) intervention have been acknowledged by the European Union (EU) through successful grant funding awarded to test European-adapted versions of both programs (in-person (FOCUS+) and digital (iFOCUS) in a Phase III trial, currently being conducted across six countries (England, Ireland, Belgium, Denmark, Netherlands and Italy) [39,40,41] .…”

A Critical Overview of the Construct of Supportive Care Need in the Cancer Literature: Definitions, Measures, Interventions and Future Directions for Research

“…Several interventional programs have been defined to provide psychoeducational support to both cancer patients and their families, with the common aim of fostering and sustaining their active participation in the care journey. Most of these interventions address the patient-caregiver dyad's mindset and cognition toward caring and being cared for, intimate and affective dynamics, coping and communication skills, self-care strategies, distress and symptom management, healthcare system and facilities navigation and the relationship referral with healthcare providers to facilitate preferences and needs, acknowledging and thus sharing decision making and informed treatment tailoring [76][77][78][79][80][81][82]. The research demonstrated that dyadic interventions have proven more effective than individual separated interventions on patients and caregivers [83].…”