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L. Morris1,2, G. Inglis-Jassiem2, A. Titus2, N. Tawa2, Y. Brink2
1Qatar University, Physical Therapy and Rehabilitation Science, College of Health Sciences, QU Health, Doha, Qatar, 2Stellenbosch University, Division of Physiotherapy, Cape Town, South Africa
Background: When compared to the developed world, people living with stroke in Africa are often confronted with different challenges due to unique environmental, social and cultural contexts. Direct administration of patient-reported outcome measures (PROMs), often developed in high-income countries (HICs), into low- to middle-income countries (LMICs) found in Africa and other continents, is therefore questioned since the original PROM typically does not address the diversity within populations found in LMICs. Cross-cultural adaptation (CCA) and cross-cultural validation (CCV) of PROMs used in stroke rehabilitation is therefore imperative for use in the unique African context. However, this process is not without complications.
Purpose: To collate the current literature reporting on the CCA and/or CCV of PROMs used in stroke rehabilitation within an African context, and to specifically highlight complexities related to semantics, experiential/cultural, and conceptual equivalence which researchers need to consider when attempting to CCA or CCV a PROM for an African stroke population.
Methods: A five-step scoping review methodological framework recommended by Levac et al. (2010) was followed. Studies reporting on the CCA and/or CCV of PROMs that assessed activity and/or participation according to the International Classification of Functioning, Disability and Health (ICF) framework, as well as quality of life (QoL), among people living with stroke in Africa, were targeted.
Results: Nine studies published in the English language between 2006 and 2019 were included. The PROMs adapted and/or validated were the Stroke-Specific Quality of Life Scale 2.0, the Maleka Stroke Community Reintegration Measure, the Activity Limitations questionnaire Stroke (ACTIVLIM-Stroke), the Locomotion Ability questionnaire (ABILOCO), the London Handicap Scale, the World Health Organization Quality of Life BREF and the Hand Function Ability Stroke questionnaire (ABILHAND Stroke). All nine studies included people with either left- or right-sided stroke, as well as both male and female participants. Five studies were conducted in Nigeria, three were conducted in Benin, and one was conducted in Uganda.
Conclusion(s): The process of CCA and CCV of PROMs is a labour-intensive activity and equivalence of items or domains may not be easily achieved. But when conducted in an African population it may be even more difficult due to the diverse and unique social and environmental challenges typically faced by the communities being studied and the resource constraints and methodological expertise needed by researchers conducting said studies.
Implications: Research implications: Future studies should consider all aspects of a culture, the specific terms/concepts relevant and appropriate to the study setting, the religious and value systems held within those communities, relevant and specific activities typical to that population, differing cultural and gender roles; to name but a few, when embarking on CCA and/or CCV of any PROM in Africa.
Clinical implications: It is recommended that clinicians conscientiously select outcome measures in daily clinical practice, specifically considering whether or not the outcome measure is indeed culturally- and contextually-appropriate for their target population/patient. It is further recommended that clinicians upskill themselves in understanding CCA and CCV to ensure they can make informed decisions about whether the processes followed in research were appropriate, adequate, and methodologically sound.
Clinical implications: It is recommended that clinicians conscientiously select outcome measures in daily clinical practice, specifically considering whether or not the outcome measure is indeed culturally- and contextually-appropriate for their target population/patient. It is further recommended that clinicians upskill themselves in understanding CCA and CCV to ensure they can make informed decisions about whether the processes followed in research were appropriate, adequate, and methodologically sound.
Funding, acknowledgements: This study was not funded by any organization.
Keywords: Cross-cultural adaptation, stroke rehabilitation, Africa
Topic: Research methodology, knowledge translation & implementation science
Did this work require ethics approval? No
Institution: Stellenbosch University
Committee: HREC
Reason: The study uses secondary data from published literature.
All authors, affiliations and abstracts have been published as submitted.
