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.
OBJECTIVES: Prior to use in an international study by NV Organon, the original 48-item menstrual ... more OBJECTIVES: Prior to use in an international study by NV Organon, the original 48-item menstrual Distress Questionnaire (MDQ), underwent linguistic validation in 26 languages. The original scale was developed in US English to assess the impact of common symptoms and feelings associated with the menstrual cycle. A rigorous methodology was required to ensure conceptual equivalence and cultural relevance across different languages. METHODS: The translation process was conducted by a specialist in each target country using the following standardized methodology: 1) two forward translations by professional translators who were native speakers of the target language and fluent in English; 2) comparison and reconciliation of the translations by the specialist in the target country and the translators; 3) back-translation by a native English speaker; 4) comparison of the original and back-translated versions; 5) review by a clinician; 6) comprehension test on 5 women; and 7) review for international comparability. RESULTS: The translation process revealed two major challenges. First, the formulation of some original items required the addition of a paraphrase or explanation in some languages. Second, the comprehension tests revealed that in countries where women are less used to completing questionnaires, the instructions asking the respondent to rate the same symptom/feeling for different times during a menstrual cycle were not always understood immediately. This required alternative wording in some translations. CONCLUSION: The 26 language versions of the MDQ were established according to a rigorous standardized translation methodology. The process aims to ensure conceptual equivalence across language versions to facilitate international comparison and pooling of data. The linguistic validation process illustrates the value of the integration of international feedback on concepts and wording during the translation of questionnaires.
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.
The Patient-Reported Indices for Multiple Sclerosis (PRIMUS) comprises a suite of three scales fo... more The Patient-Reported Indices for Multiple Sclerosis (PRIMUS) comprises a suite of three scales for assessing symptoms, activity limitations, and quality of life in multiple sclerosis (MS). It was developed in the UK and has been shown to have excellent psychometric properties. This study describes the adaptation of eight language versions for Canadian English, Canadian French, French, German, Italian, Spanish, Swedish, and US English. Methods: The PRIMUS was translated using the dual-panel process. Cognitive debriefing interviews conducted with MS patients assessed face and content validity. Psychometric and scaling properties were assessed via a two-administration postal survey conducted in each country involving the PRIMUS, the Nottingham Health Profile (NHP), the Unidimensional Fatigue Impact Scale (U-FIS), and demographic questions. Results: Cognitive debriefing interviews demonstrated the acceptability of the new language versions. Analysis of survey data showed that the new language versions of the three PRIMUS scales were unidimensional (as indicated by fit to the Rasch model) and that they had good internal consistency and reproducibility. PRIMUS scale scores correlated as expected with those on the NHP and the U-FIS. The scales in all countries were able to discriminate between groups of patients on the basis of their self-reported MS severity, general health, and employment status.
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.
To develop a self-administered patient reported outcome (PRO) instrument to evaluate patients' ex... more To develop a self-administered patient reported outcome (PRO) instrument to evaluate patients' experience of early morning symptoms of Chronic Obstructive Pulmonary Disease (COPD). METHODS: A literature review and interviews with six clinical experts were performed to identify concepts for the evaluation of early morning symptoms of COPD and to develop a focus group discussion guide. Four focus groups were conducted with a total of 27 COPD patients who experienced COPD symptoms at night or in the early morning. Qualitative data was analyzed using ATLAS.ti to identify key concepts and patient terminology which were then used to create a conceptual framework and to generate items and response options for the new PRO instrument. One-on-one cognitive debriefing interviews were conducted with 10 COPD patients to assess item readability, comprehensiveness, and content validity. RESULTS: Focus group participants had a mean age of 68.1 years, were 51.9% female, and had a range of COPD severity levels: 7.4% GOLD I (mild), 55.6% GOLD II (moderate), 14.8% GOLD III (severe), 22.2% GOLD IV (very severe). Most of the participants experienced COPD symptoms in the early morning (nϭ25, 92.6%). Patients noted symptoms such as cough and impacts such as restricted morning activities. Cognitive debriefing interviews demonstrated that the items were comprehensive, relevant and interpreted as intended. A few items were edited to improve clarity based on feedback from the patients. CONCLUSIONS:
2.8 for a non-bell-shaped uroflow. The loglinear model was unable to construct a predictive model... more 2.8 for a non-bell-shaped uroflow. The loglinear model was unable to construct a predictive model for the parameters registered.
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.
Background/Aims: Liver biopsy represents the gold standard to establish a diagnosis in all liver ... more Background/Aims: Liver biopsy represents the gold standard to establish a diagnosis in all liver patients, but its current position in chronic viral hepatitis is questioned. We aimed to create a consensus on best practice of use of liver biopsy in the management of chronic HCV infection.
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.
The present study explores how health professionals evaluate care at the end of life and what the... more The present study explores how health professionals evaluate care at the end of life and what they consider to be a good death. We conducted four focus groups with 37 health professionals and used a grounded theory-based approach to analyze the transcripts of the discussions. A lack of organization, training, formalized procedures, and communication with dying persons and their families emerged. Difficulty in defining a good death derived from the ethical dilemmas that involved places to die, palliative care, and end-of-life decision making.
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.
OBJECTIVES: Prior to use in an international study by NV Organon, the original 48-item menstrual ... more OBJECTIVES: Prior to use in an international study by NV Organon, the original 48-item menstrual Distress Questionnaire (MDQ), underwent linguistic validation in 26 languages. The original scale was developed in US English to assess the impact of common symptoms and feelings associated with the menstrual cycle. A rigorous methodology was required to ensure conceptual equivalence and cultural relevance across different languages. METHODS: The translation process was conducted by a specialist in each target country using the following standardized methodology: 1) two forward translations by professional translators who were native speakers of the target language and fluent in English; 2) comparison and reconciliation of the translations by the specialist in the target country and the translators; 3) back-translation by a native English speaker; 4) comparison of the original and back-translated versions; 5) review by a clinician; 6) comprehension test on 5 women; and 7) review for international comparability. RESULTS: The translation process revealed two major challenges. First, the formulation of some original items required the addition of a paraphrase or explanation in some languages. Second, the comprehension tests revealed that in countries where women are less used to completing questionnaires, the instructions asking the respondent to rate the same symptom/feeling for different times during a menstrual cycle were not always understood immediately. This required alternative wording in some translations. CONCLUSION: The 26 language versions of the MDQ were established according to a rigorous standardized translation methodology. The process aims to ensure conceptual equivalence across language versions to facilitate international comparison and pooling of data. The linguistic validation process illustrates the value of the integration of international feedback on concepts and wording during the translation of questionnaires.
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.
The Patient-Reported Indices for Multiple Sclerosis (PRIMUS) comprises a suite of three scales fo... more The Patient-Reported Indices for Multiple Sclerosis (PRIMUS) comprises a suite of three scales for assessing symptoms, activity limitations, and quality of life in multiple sclerosis (MS). It was developed in the UK and has been shown to have excellent psychometric properties. This study describes the adaptation of eight language versions for Canadian English, Canadian French, French, German, Italian, Spanish, Swedish, and US English. Methods: The PRIMUS was translated using the dual-panel process. Cognitive debriefing interviews conducted with MS patients assessed face and content validity. Psychometric and scaling properties were assessed via a two-administration postal survey conducted in each country involving the PRIMUS, the Nottingham Health Profile (NHP), the Unidimensional Fatigue Impact Scale (U-FIS), and demographic questions. Results: Cognitive debriefing interviews demonstrated the acceptability of the new language versions. Analysis of survey data showed that the new language versions of the three PRIMUS scales were unidimensional (as indicated by fit to the Rasch model) and that they had good internal consistency and reproducibility. PRIMUS scale scores correlated as expected with those on the NHP and the U-FIS. The scales in all countries were able to discriminate between groups of patients on the basis of their self-reported MS severity, general health, and employment status.
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.
To develop a self-administered patient reported outcome (PRO) instrument to evaluate patients' ex... more To develop a self-administered patient reported outcome (PRO) instrument to evaluate patients' experience of early morning symptoms of Chronic Obstructive Pulmonary Disease (COPD). METHODS: A literature review and interviews with six clinical experts were performed to identify concepts for the evaluation of early morning symptoms of COPD and to develop a focus group discussion guide. Four focus groups were conducted with a total of 27 COPD patients who experienced COPD symptoms at night or in the early morning. Qualitative data was analyzed using ATLAS.ti to identify key concepts and patient terminology which were then used to create a conceptual framework and to generate items and response options for the new PRO instrument. One-on-one cognitive debriefing interviews were conducted with 10 COPD patients to assess item readability, comprehensiveness, and content validity. RESULTS: Focus group participants had a mean age of 68.1 years, were 51.9% female, and had a range of COPD severity levels: 7.4% GOLD I (mild), 55.6% GOLD II (moderate), 14.8% GOLD III (severe), 22.2% GOLD IV (very severe). Most of the participants experienced COPD symptoms in the early morning (nϭ25, 92.6%). Patients noted symptoms such as cough and impacts such as restricted morning activities. Cognitive debriefing interviews demonstrated that the items were comprehensive, relevant and interpreted as intended. A few items were edited to improve clarity based on feedback from the patients. CONCLUSIONS:
2.8 for a non-bell-shaped uroflow. The loglinear model was unable to construct a predictive model... more 2.8 for a non-bell-shaped uroflow. The loglinear model was unable to construct a predictive model for the parameters registered.
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.
Background/Aims: Liver biopsy represents the gold standard to establish a diagnosis in all liver ... more Background/Aims: Liver biopsy represents the gold standard to establish a diagnosis in all liver patients, but its current position in chronic viral hepatitis is questioned. We aimed to create a consensus on best practice of use of liver biopsy in the management of chronic HCV infection.
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.
The present study explores how health professionals evaluate care at the end of life and what the... more The present study explores how health professionals evaluate care at the end of life and what they consider to be a good death. We conducted four focus groups with 37 health professionals and used a grounded theory-based approach to analyze the transcripts of the discussions. A lack of organization, training, formalized procedures, and communication with dying persons and their families emerged. Difficulty in defining a good death derived from the ethical dilemmas that involved places to die, palliative care, and end-of-life decision making.
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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.