TY - JOUR
T1 - The Portuguese versions of the This Is ME Questionnaire and the Patient Dignity Question
T2 - tools for understanding and supporting personhood in clinical care
AU - Julião, Miguel
AU - Courelas, Carla
AU - Costa, Manuel João
AU - Santos, Nadine Correia
AU - Fareleira, Filipa
AU - Antunes, Bárbara
AU - Magalhães, Susana
AU - Sousa, Paulo Faria de
AU - Chochinov, Harvey Max
N1 - Funding Information:
A special word of gratitude to Dr. José António da Silva Macedo and Alcídio Jesus from the União das Freguesias de Gondomar (S. Cosme), Valbom e Jovim for his constant support during the study. Sincere thanks to the clinicians who participated in the expert panel. To each and every participant who agreed to enter our study. Funding: B Antunes is funded by Foundation for Science and Technology (FCT) PhD Fellow Grant number PD/ BD/113664/2015 Doctoral Program in Clinical and Health Services Research (PDICSS) funded by FCT Grant number (PD/0003/2013); F Fareleira is funded by Foundation for Science and Technology (FCT) PhD Fellow Grant number PD/BD/132860/2017 Doctoral Program in Clinical and Health Services Research (PDICSS); N Correia Santos: this work has been developed under the scope of the project NORTE-01-0145-FEDER-000013, supported by the Northern Portugal Regional Operational Programme (NORTE 2020), under the Portugal 2020 Partnership Agreement, through the European Regional Development Fund (FEDER), and was co-financed by the Portuguese North Regional Operational Program (ON.2—O Novo Norte), under the National Strategic Reference Framework (QREN), through FEDER. N Correia Santos is supported by a Research Assistantship by the Portuguese Foundation for Science and Technology (FCT, Portugal) through the “FCT Investigator Programme (200 ∞ Ciência)”.
Funding Information:
A special word of gratitude to Dr. José António da Silva Macedo and Alcídio Jesus from the União das Freguesias de Gondomar (S. Cosme), Valbom e Jovim for his constant support during the study. Sincere thanks to the clinicians who participated in the expert panel. To each and every participant who agreed to enter our study. B Antunes is funded by Foundation for Science and Technology (FCT) PhD Fellow Grant number PD/BD/113664/2015 Doctoral Program in Clinical and Health Services Research (PDICSS) funded by FCT Grant number (PD/0003/2013); F Fareleira is funded by Foundation for Science and Technology (FCT) PhD Fellow Grant number PD/BD/132860/2017 Doctoral Program in Clinical and Health Services Research (PDICSS); N Correia Santos: this work has been developed under the scope of the project NORTE-01-0145-FEDER-000013, supported by the Northern Portugal Regional Operational Programme (NORTE 2020), under the Portugal 2020 Partnership Agreement, through the European Regional Development Fund (FEDER), and was co-financed by the Portuguese North Regional Operational Program (ON.2-O Novo Norte), under the National Strategic Reference Framework (QREN), through FEDER. N Correia Santos is supported by a Research Assistantship by the Portuguese Foundation for Science and Technology (FCT, Portugal) through the "FCT Investigator Programme (200 8 Ciência)".
Publisher Copyright:
© Annals of Palliative Medicine. All rights reserved.
PY - 2018/10/1
Y1 - 2018/10/1
N2 - Background: Modern medicine can be impersonal and routinized, paying insufficient attention to issues of personhood. The Patient Dignity Question (PDQ) and This Is ME (TIME) Questionnaire are clinical tools developed with the aim of probing for personhood, reinforcing dignity and promoting health care attitudes based on looking at people for who they are and not defining them solely based on their medical condition. This study aimed to translate and validate the TIME Questionnaire and the PDQ into European Portuguese, coined as Questionário Este Sou EU (ESEU) and Pergunta da Dignidade (PD), respectively. Methods: A three-stage research design, namely: a forward and back translation process (which included an expert committee panel), collected data on a sample of 43 non-institutionalized active elderly for the validation stage and a final expert panel consultation. Inclusion criteria: being 50 years old or older; ability to provide written informed consent; ability to read, speak and understand Portuguese. Results: The original TIME authors fully endorsed the back translated version. A Portuguese version was created. Forty-three participants (response rate of 62%) were included, 53% of whom were male. The average age was 69 years old (range, 60-80 years old). The interviewed elderly strongly felt that the ESEU's summary captured their essence as a person beyond whatever health problems they might be experiencing (6.8, SD =0.48), heightened their sense of dignity (6.1, SD =1.48), considered important that health care professionals (HCPs) have access to ESEU's summary (6.6, SD =0.73) and that this information could affect the way HCPs see and care for them (6.4, SD =0.86), rated on a Likert scale: 1 "strongly disagree"-7 "strongly agree". According to the experts' evaluations, the translated ESEU Questionnaire was clear, precise, comprehensible and captured important dimensions of personhood. Conclusions: The Questionário ESEU and the PD are clear, precise, comprehensible and well-aligned in terms of measuring aspects of personhood. This measure could add additional value to the patient-healthcare provider relationship, allowing a new perspective on how healthcare professionals perceive patients in suffering, ensuring they acknowledge not just patienthood, but critical dimensions of personhood.
AB - Background: Modern medicine can be impersonal and routinized, paying insufficient attention to issues of personhood. The Patient Dignity Question (PDQ) and This Is ME (TIME) Questionnaire are clinical tools developed with the aim of probing for personhood, reinforcing dignity and promoting health care attitudes based on looking at people for who they are and not defining them solely based on their medical condition. This study aimed to translate and validate the TIME Questionnaire and the PDQ into European Portuguese, coined as Questionário Este Sou EU (ESEU) and Pergunta da Dignidade (PD), respectively. Methods: A three-stage research design, namely: a forward and back translation process (which included an expert committee panel), collected data on a sample of 43 non-institutionalized active elderly for the validation stage and a final expert panel consultation. Inclusion criteria: being 50 years old or older; ability to provide written informed consent; ability to read, speak and understand Portuguese. Results: The original TIME authors fully endorsed the back translated version. A Portuguese version was created. Forty-three participants (response rate of 62%) were included, 53% of whom were male. The average age was 69 years old (range, 60-80 years old). The interviewed elderly strongly felt that the ESEU's summary captured their essence as a person beyond whatever health problems they might be experiencing (6.8, SD =0.48), heightened their sense of dignity (6.1, SD =1.48), considered important that health care professionals (HCPs) have access to ESEU's summary (6.6, SD =0.73) and that this information could affect the way HCPs see and care for them (6.4, SD =0.86), rated on a Likert scale: 1 "strongly disagree"-7 "strongly agree". According to the experts' evaluations, the translated ESEU Questionnaire was clear, precise, comprehensible and captured important dimensions of personhood. Conclusions: The Questionário ESEU and the PD are clear, precise, comprehensible and well-aligned in terms of measuring aspects of personhood. This measure could add additional value to the patient-healthcare provider relationship, allowing a new perspective on how healthcare professionals perceive patients in suffering, ensuring they acknowledge not just patienthood, but critical dimensions of personhood.
KW - Dignity
KW - Patient centered outcome measures
KW - Patient dignity question (PDQ)
KW - Personhood
KW - Portuguese translation and validation
KW - This is ME questionnaire (TIME questionnaire)
UR - http://www.scopus.com/inward/record.url?scp=85055071829&partnerID=8YFLogxK
U2 - 10.21037/apm.2018.04.04
DO - 10.21037/apm.2018.04.04
M3 - Article
C2 - 29860855
AN - SCOPUS:85055071829
SN - 2225-319X
VL - 7
SP - S187-S195
JO - Annals of Cardiothoracic Surgery
JF - Annals of Cardiothoracic Surgery
ER -