Maaike van der Wel1, Doris van der Smissen2, Sigrid Dierickx3, Joachim Cohen4, Peter Hudson4,5, Aline De Vleminck4, Lydia Tutt6, David Scott7, Silvia Di Leo8, Caroline Moeller Arnfeldt9,10, Catherine Jordan11, Laurel Northouse12, Judith Rietjens2, Agnes van der Heide2, Erica Witkamp2. 1. Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands. m.vanderwel.1@erasmusmc.nl. 2. Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands. 3. End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Ghent, Belgium. 4. End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium. 5. Centre for Palliative Care, St Vincents Hospital and The University of Melbourne, Melbourne, Australia. 6. Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK. 7. School of Nursing and Midwifery, The Queen's University of Belfast, Belfast, UK. 8. Health Professions Department, Azienda USL-IRCCS Di Reggio Emilia, Reggio Emilia, Italy. 9. Department of Public Health, University of Copenhagen, Copenhagen, Denmark. 10. Palliative Care Research Unit, Department of Geriatrics and Palliative Medicine (GP), Bispebjerg and Frederiksberg Hospital, University of Copenhagen, Copenhagen, Denmark. 11. University College Dublin, National University of Ireland, Dublin, Ireland. 12. School of Nursing, University of Michigan, Ann Arbor, MI, USA.
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.
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.
Authors: Yvonne N Becqué; Judith A C Rietjens; Anne Geert van Driel; Agnes van der Heide; Erica Witkamp Journal: Int J Nurs Stud Date: 2019-04-23 Impact factor: 5.837
Authors: Yoon-Jung Chang; Yong Chol Kwon; Woo Jin Lee; Young Rok Do; Lee Keun Seok; Heung Tae Kim; Sook Ryun Park; Young Seon Hong; Ik-Joo Chung; Young Ho Yun Journal: Asian Pac J Cancer Prev Date: 2013
Authors: Sang Min Park; Young Jin Kim; Samyong Kim; Jong Soo Choi; Ho-Yeong Lim; Youn Seon Choi; Young Seon Hong; Si-Young Kim; Dae Seog Heo; Ki Moon Kang; Hyun Sik Jeong; Chang Geol Lee; Do Ho Moon; Jin-Young Choi; In Sik Kong; Young Ho Yun Journal: Support Care Cancer Date: 2009-05-31 Impact factor: 3.603