‘I felt like a human being’—An exploratory, multi‐method study of refugee involvement in the development of mental health intervention research
Background Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is part...
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| Vydáno v: | Health expectations : an international journal of public participation in health care and health policy Ročník 24; číslo S1; s. 30 - 39 |
|---|---|
| Hlavní autoři: | , , , , |
| Médium: | Journal Article |
| Jazyk: | angličtina |
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England
John Wiley & Sons, Inc
01.05.2021
John Wiley and Sons Inc Wiley |
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| ISSN: | 1369-6513, 1369-7625, 1369-7625 |
| On-line přístup: | Získat plný text |
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| Abstract | Background
Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research.
Objectives
To describe the group dynamic characteristics and immediate impact of PPI from the user representatives’ perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire.
Design
The Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion.
Setting
‘Refugee Advisors’ were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post‐traumatic stress in Sweden.
Results
The multi‐method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified.
Discussion and conclusion
The methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation. |
|---|---|
| AbstractList | Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research.
To describe the group dynamic characteristics and immediate impact of PPI from the user representatives' perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire.
The Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion.
'Refugee Advisors' were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post-traumatic stress in Sweden.
The multi-method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified.
The methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation. Background: Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research. Objectives: To describe the group dynamic characteristics and immediate impact of PPI from the user representatives’ perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire. Design: The Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion. Setting: ‘Refugee Advisors’ were involved in the development of a randomized con‐ trolled trial protocol evaluating a brief group intervention for refugee children expe‐ riencing symptoms of post‐traumatic stress in Sweden. Results: The multi‐method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified. Discussion and conclusion: The methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation. Abstract Background Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research. Objectives To describe the group dynamic characteristics and immediate impact of PPI from the user representatives’ perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire. Design The Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion. Setting ‘Refugee Advisors’ were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post‐traumatic stress in Sweden. Results The multi‐method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified. Discussion and conclusion The methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation. BACKGROUND: Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research. OBJECTIVES: To describe the group dynamic characteristics and immediate impact of PPI from the user representatives' perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire. DESIGN: The Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion. SETTING: 'Refugee Advisors' were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post-traumatic stress in Sweden. RESULTS: The multi-method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified. DISCUSSION AND CONCLUSION: The methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation. BackgroundGreat advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research.ObjectivesTo describe the group dynamic characteristics and immediate impact of PPI from the user representatives’ perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire.DesignThe Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion.Setting‘Refugee Advisors’ were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post‐traumatic stress in Sweden.ResultsThe multi‐method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified.Discussion and conclusionThe methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation. Background: Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research. Objectives: To describe the group dynamic characteristics and immediate impact of PPI from the user representatives' perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire. Design: The Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion. Setting: 'Refugee Advisors' were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post-traumatic stress in Sweden. Results: The multi-method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified. Discussion and conclusion: The methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation. Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research.BACKGROUNDGreat advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research.To describe the group dynamic characteristics and immediate impact of PPI from the user representatives' perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire.OBJECTIVESTo describe the group dynamic characteristics and immediate impact of PPI from the user representatives' perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire.The Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion.DESIGNThe Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion.'Refugee Advisors' were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post-traumatic stress in Sweden.SETTING'Refugee Advisors' were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post-traumatic stress in Sweden.The multi-method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified.RESULTSThe multi-method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified.The methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation.DISCUSSION AND CONCLUSIONThe methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation. Background Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research. Objectives To describe the group dynamic characteristics and immediate impact of PPI from the user representatives’ perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire. Design The Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion. Setting ‘Refugee Advisors’ were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post‐traumatic stress in Sweden. Results The multi‐method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified. Discussion and conclusion The methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation. Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research. To describe the group dynamic characteristics and immediate impact of PPI from the user representatives' perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire. The Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion. 'Refugee Advisors' were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post-traumatic stress in Sweden. The multi-method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified. The methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation. |
| Audience | Academic |
| Author | Baghdasaryan, Zaruhi Osman, Fatumo Lampa, Elin Warner, Georgina Sarkadi, Anna |
| AuthorAffiliation | 1 Department of Public Health and Caring Sciences Uppsala University Uppsala Sweden 2 School of Education, Health and Social Studies Dalarna University Falun Sweden |
| AuthorAffiliation_xml | – name: 1 Department of Public Health and Caring Sciences Uppsala University Uppsala Sweden – name: 2 School of Education, Health and Social Studies Dalarna University Falun Sweden |
| Author_xml | – sequence: 1 givenname: Georgina orcidid: 0000-0002-7850-9136 surname: Warner fullname: Warner, Georgina email: Georgina.Warner@pubcare.uu.se organization: Uppsala University – sequence: 2 givenname: Zaruhi orcidid: 0000-0002-8324-6182 surname: Baghdasaryan fullname: Baghdasaryan, Zaruhi organization: Uppsala University – sequence: 3 givenname: Fatumo orcidid: 0000-0002-0038-9402 surname: Osman fullname: Osman, Fatumo organization: Dalarna University – sequence: 4 givenname: Elin orcidid: 0000-0002-5467-5850 surname: Lampa fullname: Lampa, Elin organization: Uppsala University – sequence: 5 givenname: Anna orcidid: 0000-0001-6594-2291 surname: Sarkadi fullname: Sarkadi, Anna organization: Uppsala University |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/31705620$$D View this record in MEDLINE/PubMed https://urn.kb.se/resolve?urn=urn:nbn:se:du-31123$$DView record from Swedish Publication Index https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-396996$$DView record from Swedish Publication Index (Uppsala universitet) |
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| Copyright | 2019 The Authors published by John Wiley & Sons Ltd 2019 The Authors Health Expectations published by John Wiley & Sons Ltd. COPYRIGHT 2019 John Wiley & Sons, Inc. 2021. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. |
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| Keywords | group dynamics refugees patient and public involvement mental health observation |
| Language | English |
| License | Attribution 2019 The Authors Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. |
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| Notes | Funding information The research is funded by the Kavli Trust (Grant: ID: A‐321629). The funder has had no involvement in the design of the study, the writing of the manuscript, or the collection, analysis and interpretation of data. ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 14 ObjectType-Article-2 ObjectType-Undefined-1 ObjectType-Feature-3 content type line 23 |
| ORCID | 0000-0002-0038-9402 0000-0001-6594-2291 0000-0002-8324-6182 0000-0002-7850-9136 0000-0002-5467-5850 |
| OpenAccessLink | https://onlinelibrary.wiley.com/doi/abs/10.1111%2Fhex.12990 |
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| PublicationCentury | 2000 |
| PublicationDate | May 2021 |
| PublicationDateYYYYMMDD | 2021-05-01 |
| PublicationDate_xml | – month: 05 year: 2021 text: May 2021 |
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| PublicationPlace | England |
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| PublicationTitle | Health expectations : an international journal of public participation in health care and health policy |
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| PublicationYear | 2021 |
| Publisher | John Wiley & Sons, Inc John Wiley and Sons Inc Wiley |
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| References | 2015; 1 2004; 22 2010; 37 2017; 3 2019; 5 1999; 29 2006; 55 2002; 11 2019; 17 1998 1997 2008 2004 1997; 5 2001; 22 2003; 12 2007; 113 2003; 327 2014; 4 2018; 1 2001; 4 2003; 6 2004; 13 2018 2003; 26 2014 2014; 17 2011; 27 2005; 16 2014; 7 2005; 18 2009; 37 2012; 9 Hassey Dow K (e_1_2_11_20_1) 1997; 5 e_1_2_11_10_1 e_1_2_11_32_1 Clark M (e_1_2_11_33_1) 2004; 22 e_1_2_11_31_1 e_1_2_11_30_1 e_1_2_11_13_1 e_1_2_11_12_1 e_1_2_11_34_1 e_1_2_11_11_1 e_1_2_11_7_1 e_1_2_11_29_1 e_1_2_11_6_1 e_1_2_11_5_1 e_1_2_11_27_1 e_1_2_11_4_1 e_1_2_11_26_1 e_1_2_11_3_1 Forsyth DR (e_1_2_11_14_1) 2018 e_1_2_11_21_1 Staley K (e_1_2_11_28_1) 2019; 5 e_1_2_11_9_1 e_1_2_11_23_1 National Institute for Health Research (e_1_2_11_2_1) 2014 e_1_2_11_8_1 e_1_2_11_22_1 Krueger RA (e_1_2_11_24_1) 1997 e_1_2_11_18_1 e_1_2_11_17_1 e_1_2_11_16_1 Toseland RW (e_1_2_11_15_1) 2004 Boyatzis R (e_1_2_11_25_1) 1998 e_1_2_11_19_1 |
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The benefits of collaborative research with advocacy groups publication-title: Cancer Pract – ident: e_1_2_11_12_1 doi: 10.1186/s12961-019-0432-3 – ident: e_1_2_11_34_1 doi: 10.1080/073993301317094290 – ident: e_1_2_11_17_1 doi: 10.1207/S15327809JLS1203_1 – ident: e_1_2_11_10_1 doi: 10.1007/s40271-014-0065-0 – start-page: 13 volume-title: Handbook of Social Work with Groups year: 2004 ident: e_1_2_11_15_1 – ident: e_1_2_11_3_1 doi: 10.1089/aut.2018.0003 |
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Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and... Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI.... Background: Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and... BackgroundGreat advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and... BACKGROUND: Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and... Abstract Background Great advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report... |
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| Title | ‘I felt like a human being’—An exploratory, multi‐method study of refugee involvement in the development of mental health intervention research |
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