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

• Published in: Supportive care in cancer 2022-12, Vol.30 (12), p.9763-9770
• Main Authors: van der Wel, Maaike, van der Smissen, Doris, Dierickx, Sigrid, Cohen, Joachim, Hudson, Peter, De Vleminck, Aline, Tutt, Lydia, Scott, David, Di Leo, Silvia, Arnfeldt, Caroline Moeller, Jordan, Catherine, Northouse, Laurel, Rietjens, Judith, van der Heide, Agnes, Witkamp, Erica
• Format: Article
• Language: English
• Subjects: Adaptation; Advance Care Planning; Cancer; Care and treatment; Caregivers; Communication; Families & family life; Health education; Humans; Information sources; Medical research; Medicine; Medicine & Public Health; Medicine, Experimental; Neoplasms - therapy; Nurses; Nursing; Nursing Research; Oncology; Original; Original Article; Pain Medicine; Rehabilitation Medicine; Social support; Translations
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-022-07391-x

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.