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

doi:10.1007/s00520-022-07391-x

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

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

Research output: Contribution to journal › Article › peer-review

6 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 language	English
Pages (from-to)	9763-9770
Number of pages	8
Journal	Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
Volume	30
Issue number	12
Early online date	12 Oct 2022
DOIs	https://doi.org/10.1007/s00520-022-07391-x
Publication status	Published - Dec 2022

Keywords

Humans
Caregivers
Neoplasms/therapy
Translations
Advance Care Planning
Communication

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1007/s00520-022-07391-x

Cite this

van der Wel, M., van der Smissen, D., Dierickx, S., Cohen, J., Hudson, P., De Vleminck, A., Tutt, L., Scott, D., Di Leo, S., Arnfeldt, C. M., Northouse, L., Jordan, C., Rietjens, J., van der Heide, A., Witkamp, E., DIAdIC, & Bristowe, K. (2022). 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. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 30(12), 9763-9770. https://doi.org/10.1007/s00520-022-07391-x

van der Wel, Maaike ; van der Smissen, Doris ; Dierickx, Sigrid et al. / 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. In: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2022 ; Vol. 30, No. 12. pp. 9763-9770.

@article{88eeb18c8246454890ff066d4f7e918f,

title = "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.",

keywords = "Humans, Caregivers, Neoplasms/therapy, Translations, Advance Care Planning, Communication",

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

note = "Funding Information: All people that represented the etic and emic perspective. All people that translated linguistically the FOCUS program. Ann Schafenacker RN, MSN, University of Michigan FOCUS Nurse Training Team, Ann Arbor, Michigan; Bonnie Dockham, Cancer Support Community Greater Ann Arbor, Michigan On behalf of DIAdIC: Kim Eecloo, End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium; , Luc Deliens, End-of-Life Care Research Group, Ghent University, Ghent, Belgium; Orph{\'e} Matthys, End-of-Life Care Research Group, Ghent University, Ghent, Belgium; Vincent Van Goethem, End-of-Life Care Research Group, Ghent University, Ghent, Belgium; Richard Harding, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King{\textquoteright}s College London, London, United Kingdom; Katherine Bristowe, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King{\textquoteright}s College London, London, United Kingdom; Kevin Brazil, The Queen{\textquoteright}s University of Belfast, Belfast, United Kingdom; Joanne Reid, The Queen{\textquoteright}s University of Belfast, Belfast, United Kingdom; Gillian Prue, The Queen{\textquoteright}s University of Belfast, Belfast, United Kingdom ; Massimo Costantini, Azienda Unit{\`a} Sanitaria Locale—IRCCS di Reggio Emilia, Italy; Elena Turola, Azienda Unit{\`a} Sanitaria Locale—IRCCS di Reggio Emilia, Italy; Monica Guberti, Azienda Unit{\`a} Sanitaria Locale—IRCCS di Reggio Emilia, Italy; Mogens Groenvold, Kobenhavns Universitet, Copenhagen, Denmark; Line Lund, Kobenhavns Universitet, Copenhagen, Denmark; Charles Normand, Trinity College Dublin, University of Dublin, Dublin, Ireland; Peter May, Trinity College Dublin, University of Dublin, Dublin, Ireland; Samantha Smith, Trinity College Dublin, University of Dublin, Dublin, Ireland; Suzanne Guerin, University College Dublin, National University of Ireland, Dublin, Ireland; Philip Larkin, University College Dublin, National University of Ireland, Dublin, Ireland; Paul D{\textquoteright}Alton, University College Dublin, National University of Ireland, Dublin, Ireland; Michael Connolly, University College Dublin, National University of Ireland, Dublin, Ireland Funding Information: This study is part of the DIAdIC project that has received funding from the European Union{\textquoteright}s Horizon 2020 research and innovation program under grant agreement no. 825722 and the HSC R&D Division, Public Health Agency Northern Ireland [COM/5599/20]. Publisher Copyright: {\textcopyright} 2022, The Author(s).",

year = "2022",

month = dec,

doi = "10.1007/s00520-022-07391-x",

language = "English",

volume = "30",

pages = "9763--9770",

journal = "Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer",

issn = "0941-4355",

publisher = "Springer",

number = "12",

}

van der Wel, M, van der Smissen, D, Dierickx, S, Cohen, J, Hudson, P, De Vleminck, A, Tutt, L, Scott, D, Di Leo, S, Arnfeldt, CM, Northouse, L, Jordan, C, Rietjens, J, van der Heide, A, Witkamp, E, DIAdIC & Bristowe, K 2022, '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', Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, vol. 30, no. 12, pp. 9763-9770. https://doi.org/10.1007/s00520-022-07391-x

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. / van der Wel, Maaike; van der Smissen, Doris; Dierickx, Sigrid et al.
In: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, Vol. 30, No. 12, 12.2022, p. 9763-9770.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - 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

AU - van der Wel, Maaike

AU - van der Smissen, Doris

AU - Dierickx, Sigrid

AU - Cohen, Joachim

AU - Hudson, Peter

AU - De Vleminck, Aline

AU - Tutt, Lydia

AU - Scott, David

AU - Di Leo, Silvia

AU - Arnfeldt, Caroline Moeller

AU - Northouse, Laurel

AU - Jordan, Catherine

AU - Rietjens, Judith

AU - van der Heide, Agnes

AU - Witkamp, Erica

AU - DIAdIC

AU - Bristowe, Katherine

N1 - Funding Information: All people that represented the etic and emic perspective. All people that translated linguistically the FOCUS program. Ann Schafenacker RN, MSN, University of Michigan FOCUS Nurse Training Team, Ann Arbor, Michigan; Bonnie Dockham, Cancer Support Community Greater Ann Arbor, Michigan On behalf of DIAdIC: Kim Eecloo, End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium; , Luc Deliens, End-of-Life Care Research Group, Ghent University, Ghent, Belgium; Orphé Matthys, End-of-Life Care Research Group, Ghent University, Ghent, Belgium; Vincent Van Goethem, End-of-Life Care Research Group, Ghent University, Ghent, Belgium; Richard Harding, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London, London, United Kingdom; Katherine Bristowe, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London, London, United Kingdom; Kevin Brazil, The Queen’s University of Belfast, Belfast, United Kingdom; Joanne Reid, The Queen’s University of Belfast, Belfast, United Kingdom; Gillian Prue, The Queen’s University of Belfast, Belfast, United Kingdom ; Massimo Costantini, Azienda Unità Sanitaria Locale—IRCCS di Reggio Emilia, Italy; Elena Turola, Azienda Unità Sanitaria Locale—IRCCS di Reggio Emilia, Italy; Monica Guberti, Azienda Unità Sanitaria Locale—IRCCS di Reggio Emilia, Italy; Mogens Groenvold, Kobenhavns Universitet, Copenhagen, Denmark; Line Lund, Kobenhavns Universitet, Copenhagen, Denmark; Charles Normand, Trinity College Dublin, University of Dublin, Dublin, Ireland; Peter May, Trinity College Dublin, University of Dublin, Dublin, Ireland; Samantha Smith, Trinity College Dublin, University of Dublin, Dublin, Ireland; Suzanne Guerin, University College Dublin, National University of Ireland, Dublin, Ireland; Philip Larkin, University College Dublin, National University of Ireland, Dublin, Ireland; Paul D’Alton, University College Dublin, National University of Ireland, Dublin, Ireland; Michael Connolly, University College Dublin, National University of Ireland, Dublin, Ireland Funding Information: This study is part of the DIAdIC project that has received funding from the European Union’s Horizon 2020 research and innovation program under grant agreement no. 825722 and the HSC R&D Division, Public Health Agency Northern Ireland [COM/5599/20]. Publisher Copyright: © 2022, The Author(s).

PY - 2022/12

Y1 - 2022/12

N2 - 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.

AB - 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.

KW - Humans

KW - Caregivers

KW - Neoplasms/therapy

KW - Translations

KW - Advance Care Planning

KW - Communication

UR - http://www.scopus.com/inward/record.url?scp=85139663254&partnerID=8YFLogxK

U2 - 10.1007/s00520-022-07391-x

DO - 10.1007/s00520-022-07391-x

M3 - Article

C2 - 36221035

SN - 0941-4355

VL - 30

SP - 9763

EP - 9770

JO - Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

JF - Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

IS - 12

ER -

van der Wel M, van der Smissen D, Dierickx S, Cohen J, Hudson P, De Vleminck A et al. 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. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2022 Dec;30(12):9763-9770. Epub 2022 Oct 12. doi: 10.1007/s00520-022-07391-x

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

Keywords

UN SDGs

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