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

Maaike van der Wel, Doris van der Smissen, Sigrid Dierickx, Joachim Cohen, Peter Hudson, Aline De Vleminck, Lydia Tutt, David Scott, Silvia Di Leo, Caroline Moeller Arnfeldt, Laurel Northouse, Catherine Jordan, Judith Rietjens, Agnes van der Heide, Erica Witkamp, DIAdIC, Katherine Bristowe

Research output: Contribution to journalArticlepeer-review

2 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)9763-9770
Number of pages8
JournalSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
Volume30
Issue number12
Early online date12 Oct 2022
DOIs
Publication statusPublished - Dec 2022

Keywords

  • Humans
  • Caregivers
  • Neoplasms/therapy
  • Translations
  • Advance Care Planning
  • Communication

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