Translation of health-related information material is an essential action that public health age... more Translation of health-related information material is an essential action that public health agencies on all levels need to take to support health knowledge, attitude and behavioral communication with different language speaking populations. Most translation projects, however, devote little time and resources to assessing and addressing the cultural and contextual factors which shape the health behaviours of different language speaking populations. Materials and interventions aimed at enhancing health knowledge and literacy seldom incorporate a systematic approach to cultural/contextual adaptation. Valuable evidence-based public health materials that have been shown to enhance healthier behaviours are often lost in translation. While a variety of cultural/contextual adaptation approaches have been reported, no internationally acknowledged adaptation standards have been agreed to date.
The cultural/contextual adaptation of public health materials and interventions is associated with higher vaccination uptake, better compliance with risk and outbreak communication and, faster responses to emergencies, especially related to vulnerable populations. Recent failures in the international Ebola response, for example, have been attributed in large part to culturally insensitive messaging and inadequate social mobilization.
Building on health promotion, health literacy, social marketing, cultural adaptation, behavioral communication and implementation science research, this article describes a new five-step stakeholder-based approach to the cultural/contextual adaptation of public health communication materials. This approach was developed for the European Centre for Disease Prevention and Control (ECDC) and refined through the practical adaptation of ECDC’s "Let’s talk about protection. Enhancing childhood vaccination uptake- Communication action guide for health care providers" in six European countries. An integrated top down/bottom up approach was refined through these country experiences and five key action steps were identified:
• Careful selection of materials and process coordinators • Early review by content and linguistic experts • Translation and quality check • Comprehension testing • Strategic dissemination – Proofreading, customized design, networking and evaluation.
These adaptation steps are described and analysed. Challenges and lessons learned are identified. Evidence of effectiveness is presented and questions are posed related to needed research follow-up.
The 22-item Unidimensional Fatigue Impact Scale (U-FIS) provides an index of the impact of fatigu... more The 22-item Unidimensional Fatigue Impact Scale (U-FIS) provides an index of the impact of fatigue on patients with multiple sclerosis (MS). The objective is to produce eight new language versions of the U-FIS: Canadian-English, Canadian-French, French, German, Italian, Spanish, Swedish, and US-English. The U-FIS was translated via two translation panels. Cognitive debriefing interviews conducted with patients in each country assessed face and content validity. Scaling and psychometric properties were assessed via survey data with patients in each country completing the U-FIS, Nottingham Health Profile (NHP), and demographic questions. Cognitive debriefing interviews demonstrated U-FIS acceptability. Analysis of postal survey data showed all new language versions to be unidimensional. Reliability was high, with test-retest correlations and internal-consistency coefficients exceeding 0.85. Initial evidence of validity was provided by moderate to high correlations with NHP scales. The U-FIS was able to discriminate between groups based on employment status, perceived MS severity, and general health. The U-FIS is a practical new measure of the impact of fatigue. It was successfully adapted into eight new languages to broaden availability for researchers. Psychometric analyses indicated that the new language versions were unidimensional and reproducible with promising construct validity.
Multiple sclerosis (MS) patients and their family members increasingly seek health information on... more Multiple sclerosis (MS) patients and their family members increasingly seek health information on the Internet. There has been little exploration of how MS patients integrate health information with their needs, preferences, and values for decision making. The INtegrating and Deriving Evidence, Experiences, and Preferences (IN-DEEP) project is a collaboration between Italian and Australian researchers and MS patients, aimed to make high-quality evidence accessible and meaningful to MS patients and families, developing a Web-based resource of evidence-based information starting from their information needs. The objective of this study was to analyze MS patients and their family members' experience about the Web-based health information, to evaluate how they asses this information, and how they integrate health information with personal values. We organized 6 focus groups, 3 with MS patients and 3 with family members, in the Northern, Central, and Southern parts of Italy (April-June 2011). They included 40 MS patients aged between 18 and 60, diagnosed as having MS at least 3 months earlier, and 20 family members aged 18 and over, being relatives of a person with at least a 3-months MS diagnosis. The focus groups were audio-recorded and transcribed verbatim (Atlas software, V 6.0). Data were analyzed from a conceptual point of view through a coding system. An online forum was hosted by the Italian MS society on its Web platform to widen the collection of information. Nine questions were posted covering searching behavior, use of Web-based information, truthfulness of Web information. At the end, posts were downloaded and transcribed. Information needs covered a comprehensive communication of diagnosis, prognosis, and adverse events of treatments, MS causes or risk factors, new drugs, practical, and lifestyle-related information. The Internet is considered useful by MS patients, however, at the beginning or in a later stage of the disease a refusal to actively search for information could occur. Participants used to search on the Web before or after their neurologist's visit or when a new therapy was proposed. Social networks are widely used to read others' stories and retrieve information about daily management. A critical issue was the difficulty of recognizing reliable information on the Web. Many sources were used but the neurologist was mostly the final source of treatment decisions. MS patients used the Internet as a tool to integrate information about the illness. Information needs covered a wide spectrum, the searched topics changed with progression of the disease. Criteria for evaluating Internet accuracy and credibility of information were often lacking or generic. This may limit the empowerment of patients in health care choices.
The Asthma Life Impact Scale (ALIS) is a disease-specific measure used to assess the quality-of-l... more The Asthma Life Impact Scale (ALIS) is a disease-specific measure used to assess the quality-of-life of people with asthma. It was developed in the UK and US and has proven to be acceptable to patients, to have good psychometric properties, and to be unidimensional. This paper reports on the adaptation and validation of the ALIS for use in representative Southern European (Italian) and Eastern European (Russian) languages. The ALIS was translated for both cultures using the dual-panel process. The newly translated versions were then tested with asthma patients to ensure face and content validity. Psychometric properties of the new language versions were assessed via a test?re-test postal survey conducted in both countries. It is possible that some cultural or language differences still exist between the different language versions. Further research should be undertaken to determine responsiveness. Further studies designed to determine the clinical validity of the Italian ALIS would be valuable. Linguistic nuances were easily resolved during the translation process for both language adaptations. Cognitive debriefing interviews (Russia n=9, male=11.1%, age mean (SD)=55.4 (13.2); Italy n=15, male=66.7%, age mean (SD)=63.5 (11.2)) indicated that the ALIS was easy to read and acceptable to patients. Psychometric testing was conducted on the data (Russia n=61, age mean (SD)=40.7 (15.4); Italy n=71, male=42.6%, age mean (SD)=49.5 (14.1)). The results showed that the new versions of the ALIS were consistent (Russian and Italian Cronbach's alpha=0.92) and reproducible (Russian test-re-test=0.86; Italian test-re-test=0.94). The Italian adaptation showed the expected correlations with the NHP and the Russian adaptation showed strong correlations with the CASIS and CAFS and weak-to-moderate correlations with %FEV1 and %PEF. In both adaptations the ALIS was able to distinguish between participants based on self-reported general health, self-reported severity, and whether or not they were hospitalized in the previous week.
The living with chronic obstructive pulmonary disease (LCOPD) scale was developed in the United K... more The living with chronic obstructive pulmonary disease (LCOPD) scale was developed in the United Kingdom and the United States to assess the quality of life (QoL) of people with chronic obstructive pulmonary disease. The scale was shown to be well accepted by patients, to be unidimensional, and to have very good psychometric properties. This article reports on the adaptation of the measure for use in representative Southern European (Italian and Spanish) and Eastern European (Russian) languages. The same methodology was used in each country: translation panels were held to produce new language versions. These were then tested with patients to ensure face and content validity. Finally, test-retest postal surveys were conducted to establish internal consistency, reproducibility, and construct validity. Few problems were found in translating the LCOPD, and patient interviews indicated that the measure was considered relevant and easy to complete. The validation surveys showed that the new versions of the LCOPD were consistent, reproducible, and had good construct validity. The psychometric properties of the new versions were similar to those found for the original U.K. and U.S. versions. The study was successful in adapting the LCOPD for use in Southern and Eastern European languages.
Translation of health-related information material is an essential action that public health age... more Translation of health-related information material is an essential action that public health agencies on all levels need to take to support health knowledge, attitude and behavioral communication with different language speaking populations. Most translation projects, however, devote little time and resources to assessing and addressing the cultural and contextual factors which shape the health behaviours of different language speaking populations. Materials and interventions aimed at enhancing health knowledge and literacy seldom incorporate a systematic approach to cultural/contextual adaptation. Valuable evidence-based public health materials that have been shown to enhance healthier behaviours are often lost in translation. While a variety of cultural/contextual adaptation approaches have been reported, no internationally acknowledged adaptation standards have been agreed to date.
The cultural/contextual adaptation of public health materials and interventions is associated with higher vaccination uptake, better compliance with risk and outbreak communication and, faster responses to emergencies, especially related to vulnerable populations. Recent failures in the international Ebola response, for example, have been attributed in large part to culturally insensitive messaging and inadequate social mobilization.
Building on health promotion, health literacy, social marketing, cultural adaptation, behavioral communication and implementation science research, this article describes a new five-step stakeholder-based approach to the cultural/contextual adaptation of public health communication materials. This approach was developed for the European Centre for Disease Prevention and Control (ECDC) and refined through the practical adaptation of ECDC’s "Let’s talk about protection. Enhancing childhood vaccination uptake- Communication action guide for health care providers" in six European countries. An integrated top down/bottom up approach was refined through these country experiences and five key action steps were identified:
• Careful selection of materials and process coordinators • Early review by content and linguistic experts • Translation and quality check • Comprehension testing • Strategic dissemination – Proofreading, customized design, networking and evaluation.
These adaptation steps are described and analysed. Challenges and lessons learned are identified. Evidence of effectiveness is presented and questions are posed related to needed research follow-up.
The 22-item Unidimensional Fatigue Impact Scale (U-FIS) provides an index of the impact of fatigu... more The 22-item Unidimensional Fatigue Impact Scale (U-FIS) provides an index of the impact of fatigue on patients with multiple sclerosis (MS). The objective is to produce eight new language versions of the U-FIS: Canadian-English, Canadian-French, French, German, Italian, Spanish, Swedish, and US-English. The U-FIS was translated via two translation panels. Cognitive debriefing interviews conducted with patients in each country assessed face and content validity. Scaling and psychometric properties were assessed via survey data with patients in each country completing the U-FIS, Nottingham Health Profile (NHP), and demographic questions. Cognitive debriefing interviews demonstrated U-FIS acceptability. Analysis of postal survey data showed all new language versions to be unidimensional. Reliability was high, with test-retest correlations and internal-consistency coefficients exceeding 0.85. Initial evidence of validity was provided by moderate to high correlations with NHP scales. The U-FIS was able to discriminate between groups based on employment status, perceived MS severity, and general health. The U-FIS is a practical new measure of the impact of fatigue. It was successfully adapted into eight new languages to broaden availability for researchers. Psychometric analyses indicated that the new language versions were unidimensional and reproducible with promising construct validity.
Multiple sclerosis (MS) patients and their family members increasingly seek health information on... more Multiple sclerosis (MS) patients and their family members increasingly seek health information on the Internet. There has been little exploration of how MS patients integrate health information with their needs, preferences, and values for decision making. The INtegrating and Deriving Evidence, Experiences, and Preferences (IN-DEEP) project is a collaboration between Italian and Australian researchers and MS patients, aimed to make high-quality evidence accessible and meaningful to MS patients and families, developing a Web-based resource of evidence-based information starting from their information needs. The objective of this study was to analyze MS patients and their family members' experience about the Web-based health information, to evaluate how they asses this information, and how they integrate health information with personal values. We organized 6 focus groups, 3 with MS patients and 3 with family members, in the Northern, Central, and Southern parts of Italy (April-June 2011). They included 40 MS patients aged between 18 and 60, diagnosed as having MS at least 3 months earlier, and 20 family members aged 18 and over, being relatives of a person with at least a 3-months MS diagnosis. The focus groups were audio-recorded and transcribed verbatim (Atlas software, V 6.0). Data were analyzed from a conceptual point of view through a coding system. An online forum was hosted by the Italian MS society on its Web platform to widen the collection of information. Nine questions were posted covering searching behavior, use of Web-based information, truthfulness of Web information. At the end, posts were downloaded and transcribed. Information needs covered a comprehensive communication of diagnosis, prognosis, and adverse events of treatments, MS causes or risk factors, new drugs, practical, and lifestyle-related information. The Internet is considered useful by MS patients, however, at the beginning or in a later stage of the disease a refusal to actively search for information could occur. Participants used to search on the Web before or after their neurologist's visit or when a new therapy was proposed. Social networks are widely used to read others' stories and retrieve information about daily management. A critical issue was the difficulty of recognizing reliable information on the Web. Many sources were used but the neurologist was mostly the final source of treatment decisions. MS patients used the Internet as a tool to integrate information about the illness. Information needs covered a wide spectrum, the searched topics changed with progression of the disease. Criteria for evaluating Internet accuracy and credibility of information were often lacking or generic. This may limit the empowerment of patients in health care choices.
The Asthma Life Impact Scale (ALIS) is a disease-specific measure used to assess the quality-of-l... more The Asthma Life Impact Scale (ALIS) is a disease-specific measure used to assess the quality-of-life of people with asthma. It was developed in the UK and US and has proven to be acceptable to patients, to have good psychometric properties, and to be unidimensional. This paper reports on the adaptation and validation of the ALIS for use in representative Southern European (Italian) and Eastern European (Russian) languages. The ALIS was translated for both cultures using the dual-panel process. The newly translated versions were then tested with asthma patients to ensure face and content validity. Psychometric properties of the new language versions were assessed via a test?re-test postal survey conducted in both countries. It is possible that some cultural or language differences still exist between the different language versions. Further research should be undertaken to determine responsiveness. Further studies designed to determine the clinical validity of the Italian ALIS would be valuable. Linguistic nuances were easily resolved during the translation process for both language adaptations. Cognitive debriefing interviews (Russia n=9, male=11.1%, age mean (SD)=55.4 (13.2); Italy n=15, male=66.7%, age mean (SD)=63.5 (11.2)) indicated that the ALIS was easy to read and acceptable to patients. Psychometric testing was conducted on the data (Russia n=61, age mean (SD)=40.7 (15.4); Italy n=71, male=42.6%, age mean (SD)=49.5 (14.1)). The results showed that the new versions of the ALIS were consistent (Russian and Italian Cronbach's alpha=0.92) and reproducible (Russian test-re-test=0.86; Italian test-re-test=0.94). The Italian adaptation showed the expected correlations with the NHP and the Russian adaptation showed strong correlations with the CASIS and CAFS and weak-to-moderate correlations with %FEV1 and %PEF. In both adaptations the ALIS was able to distinguish between participants based on self-reported general health, self-reported severity, and whether or not they were hospitalized in the previous week.
The living with chronic obstructive pulmonary disease (LCOPD) scale was developed in the United K... more The living with chronic obstructive pulmonary disease (LCOPD) scale was developed in the United Kingdom and the United States to assess the quality of life (QoL) of people with chronic obstructive pulmonary disease. The scale was shown to be well accepted by patients, to be unidimensional, and to have very good psychometric properties. This article reports on the adaptation of the measure for use in representative Southern European (Italian and Spanish) and Eastern European (Russian) languages. The same methodology was used in each country: translation panels were held to produce new language versions. These were then tested with patients to ensure face and content validity. Finally, test-retest postal surveys were conducted to establish internal consistency, reproducibility, and construct validity. Few problems were found in translating the LCOPD, and patient interviews indicated that the measure was considered relevant and easy to complete. The validation surveys showed that the new versions of the LCOPD were consistent, reproducible, and had good construct validity. The psychometric properties of the new versions were similar to those found for the original U.K. and U.S. versions. The study was successful in adapting the LCOPD for use in Southern and Eastern European languages.
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Books by Nadia Oprandi
Valuable evidence-based public health materials that have been shown to enhance healthier behaviours are often lost in translation. While a variety of cultural/contextual adaptation approaches have been reported, no internationally acknowledged adaptation standards have been agreed to date.
The cultural/contextual adaptation of public health materials and interventions is associated with higher vaccination uptake, better compliance with risk and outbreak communication and, faster responses to emergencies, especially related to vulnerable populations. Recent failures in the international Ebola response, for example, have been attributed in large part to culturally insensitive messaging and inadequate social mobilization.
Building on health promotion, health literacy, social marketing, cultural adaptation, behavioral communication and implementation science research, this article describes a new five-step stakeholder-based approach to the cultural/contextual adaptation of public health communication materials. This approach was developed for the European Centre for Disease Prevention and Control (ECDC) and refined through the practical adaptation of ECDC’s "Let’s talk about protection. Enhancing childhood vaccination uptake- Communication action guide for health care providers" in six European countries. An integrated top down/bottom up approach was refined through these country experiences and five key action steps were identified:
• Careful selection of materials and process coordinators
• Early review by content and linguistic experts
• Translation and quality check
• Comprehension testing
• Strategic dissemination – Proofreading, customized design, networking and evaluation.
These adaptation steps are described and analysed. Challenges and lessons learned are identified. Evidence of effectiveness is presented and questions are posed related to needed research follow-up.
Papers by Nadia Oprandi
Valuable evidence-based public health materials that have been shown to enhance healthier behaviours are often lost in translation. While a variety of cultural/contextual adaptation approaches have been reported, no internationally acknowledged adaptation standards have been agreed to date.
The cultural/contextual adaptation of public health materials and interventions is associated with higher vaccination uptake, better compliance with risk and outbreak communication and, faster responses to emergencies, especially related to vulnerable populations. Recent failures in the international Ebola response, for example, have been attributed in large part to culturally insensitive messaging and inadequate social mobilization.
Building on health promotion, health literacy, social marketing, cultural adaptation, behavioral communication and implementation science research, this article describes a new five-step stakeholder-based approach to the cultural/contextual adaptation of public health communication materials. This approach was developed for the European Centre for Disease Prevention and Control (ECDC) and refined through the practical adaptation of ECDC’s "Let’s talk about protection. Enhancing childhood vaccination uptake- Communication action guide for health care providers" in six European countries. An integrated top down/bottom up approach was refined through these country experiences and five key action steps were identified:
• Careful selection of materials and process coordinators
• Early review by content and linguistic experts
• Translation and quality check
• Comprehension testing
• Strategic dissemination – Proofreading, customized design, networking and evaluation.
These adaptation steps are described and analysed. Challenges and lessons learned are identified. Evidence of effectiveness is presented and questions are posed related to needed research follow-up.