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1.
Cerebellum ; 2023 Nov 09.
Artigo em Inglês | MEDLINE | ID: mdl-37943429

RESUMO

Spinocerebellar ataxia (SCA) patients' reports of their own experiences are essential to the outcome evaluation in clinical trials. To better understand the health condition and well-being of ataxia population, Patient-Reported Outcome Measure of Ataxia (PROM-Ataxia) was developed. The aim of our study was to culturally adapt the PROM-Ataxia into Chinese version and assess its correlation with canonical clinical assessments. We translated the PROM-Ataxia into Chinese following the ISPOR TCA Task Force guidelines and evaluated its correlation with measures of motor ataxia, non-ataxia signs, quality of life, and mental health in 92 Chinese SCA participants. Nearly all the participants found this questionnaire complete and intelligible but some items were found repetitive or ambiguous. The total score of PROM-Ataxia from stage 0 to stage 3 was 23.24 ± 18.53, 79.11 ± 40.45, 144.30 ± 41.30, and 176.20 ± 31.74, respectively (p < 0.0001). It was strongly correlated with the Scale for the Assessment and Rating of Ataxia (SARA) (r = 0.832, p < 0.0001). Physical and activities domain of PROM-Ataxia were correlated with measures of motor ataxia, quality of life, and psychological health while mental health domain was correlated with all the clinical assessments including inventory of non-ataxia signs and cognitive assessment. We translated the PROM-Ataxia into Chinese for the first time, which allows transnational comparability in future studies. Our study validated the responsiveness of PROM-Ataxia to established clinical measures in Chinese SCA patients and implied its potential to evaluate the therapeutic effect and optimize the sensitivity of changes in clinical outcome assessments.

2.
Int J Geriatr Psychiatry ; 38(1): e5868, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36642866

RESUMO

OBJECTIVES: We culturally adapted STrAtegies for RelaTives (START), a clinically and cost-effective intervention for dementia family carers, for Black and South Asian families. It had previously been delivered to family carers around the time of diagnosis, when most people with dementia had very mild, mild or moderate dementia. METHODS: We interviewed a maximum variation sample of family carers (phase one; n = 15 South Asian; n = 11 Black) about what aspect of START, required cultural adaptation, then analysed it thematically using the Cultural Treatment Adaptation Framework then adapted it in English and into Urdu. Facilitators then delivered START individually to carers (phase two; n = 13 South Asian; n = 8 Black). We assessed acceptability and feasibility through the number of sessions attended, score for fidelity to the intervention and interviewing family carers about their experiences. We used the Hospital Anxiety and Depression Scale. to examine whether immediate changes in family carers' mental health were in line with previous studies. RESULTS: In phase one we made adaptations to peripheral elements of START, clarifying language, increasing illustrative vignettes numbers, emphasising privacy and the facilitator's cultural competence and making images ethnically diverse. In phase two 21 family carers consented to receive the adapted intervention; 12 completed ≥5/8 sessions; four completed fewer sessions and five never started. Baseline HADS score (n = 21) was 14.4 (SD = 9.8) but for those who we were able to follow up was 12.3 (SD 8.1) and immediately post-intervention was 11.3 (n = 10; SD = 6.1). Family carers were positive about the adapted START and continued to use elements after the intervention. CONCLUSIONS: Culturally adapted START was acceptable and feasible in South Asian and Black UK-based family carers and changes in mental health were in line with those in the original clinical trial. Our study shows that culturally inclusive START was also acceptable. Changes made in adaptations were relevant to all populations. We now use the adapted version for all family carers irrespective of ethnicity.


Assuntos
Cuidadores , Demência , Humanos , Povo Asiático , Cuidadores/psicologia , Demência/terapia , Saúde Mental , Reino Unido , População Negra
3.
BMC Health Serv Res ; 23(1): 458, 2023 May 09.
Artigo em Inglês | MEDLINE | ID: mdl-37158928

RESUMO

BACKGROUND: The person-centred practice framework represents the cornerstone of a middle-range theory. Internationally, person-centredness has become an increasingly common topic. The measurement of the existence of a person-centred culture is complex and subtle. The Person-Centred Practice Inventory-Staff (PCPI-S) measures clinicians' experience of a person-centred culture in their practice. The PCPI-S was developed in English. Therefore, the aims of this study were (1) to translate the PCPI-S into German and to cross-culturally adapt and test in the acute care setting (PCPI-S aG Swiss) and (2) to investigate the psychometric properties of the PCPI-S aG Swiss. METHODS: The two-phase investigation of this cross-sectional observational study followed the guidelines and principles of good practice for the process of translation and cross-cultural adaptation of self-reporting measures. Phase 1 involved an eight-step translation and cultural adaptation of the PCPI-S testing in an acute care setting. In Phase 2, psychometric retesting and statistical analysis based on a quantitative cross-sectional survey were undertaken. To evaluate the construct validity, a confirmatory factor analysis was implemented. Cronbach's alpha was used to determine the internal consistency. RESULTS: A sample of 711 nurses working in a Swiss acute care setting participated in testing the PCPI-S aG Swiss. Confirmatory factor analysis indicated a good overall model fit, validating the strong theoretical framework, which underpins the PCPI-S aG Swiss. Cronbach's alpha scores demonstrated excellent internal consistency. CONCLUSION: The chosen procedure ensured cultural adaptation to the German-speaking part of Switzerland. The psychometric results were good to excellent and comparable with other translations of the instrument.


Assuntos
Cuidados Críticos , Traduções , Humanos , Estudos Transversais , Etnicidade , Análise Fatorial
4.
Omega (Westport) ; : 302228231181256, 2023 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-37269118

RESUMO

The Death Attitude Profile-Revised (DAP-R), one of the most widely used scales for assessing death attitudes is a multidimensional questionnaire capable of measuring a wide range of attitudes towards death. The aim of our study was to assess the reliability and validity of the Serbian version of the DAP-R. The study was conducted in October 2022 and included a total of 547 students of the Faculty of Medicine University of Belgrade (FMUB). Based on Cronbach's alpha coefficient values, our data show good reliability of the DAP-RSp (Serbian version). In our study, the confirmatory factor analysis showed a good fit of the data to the original factor structure with minor discrepancy; compared to the original version (five factors), our analysis yielded one more factor (six factors in total), however, almost all items had factor loading >0.3 on the appropriate scale.

5.
BMC Musculoskelet Disord ; 23(1): 416, 2022 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-35505330

RESUMO

BACKGROUND: Foot disorders affect up to one quarter of the adult population. Plantar fasciopathy is a common cause of foot pain associated with decreased activity level and quality of life. Patient-reported outcome measures are important in assessing the burden of a condition as well as in research on the effects of interventions. The Foot Function Index revised short form (FFI-RS) is a region specific questionnaire frequently used in research. This study aimed to cross-culturally adapt the FFI-RS into Norwegian and to test its psychometric properties. METHODS: The FFI-RS was translated into Norwegian (FFI-RSN) following international guidelines. 139 patients with foot disorders (88% with plantar fasciopathy) were included at baseline to measure internal consistency, explorative factor analysis, construct validity and floor and ceiling effects. 54 patients were included after 1 week for test-retest reliability and smallest detectable change analyses. 100 patients were included for responsiveness and minimal important change at 3 months. RESULTS: Cronbach's alpha for internal consistency was 0.97 and factor analysis supported the use of the total score of the FFI-RSN. Two out of three predefined hypotheses were confirmed by assessing the construct validity with Spearman's correlation coefficient. Quadratic weighted Kappa for test-retest reliability showed 0.91 (95% CI 0.86-0.96) and the smallest detectable change was 6.5%. The minimal important change was 8.4% and the area under the receiver operating characteristic curve for responsiveness was 0.78 (95% CI 0.69-0.87). We found no floor or ceiling effects on the total score of the FFI-RSN. CONCLUSIONS: The present study showed excellent reliability of the FFI-RSN and supports the use of the total score of the questionnaire. Furthermore, we found the FFI-RSN to have acceptable responsiveness in relation to change in general health. Smallest detectable change, minimal important change and responsiveness were presented as novel results of the total score of the FFI-RS. FFI-RSN can be used to evaluate global foot health in clinical or research settings with Norwegian patients suffering from plantar fasciopathy. TRIAL REGISTRATION: Clinical Trials.gov NCT04207164 . Initial release 01.11.19.


Assuntos
Fasciíte Plantar , Adulto , Humanos , Psicometria/métodos , Qualidade de Vida , Reprodutibilidade dos Testes , Inquéritos e Questionários
6.
Health Qual Life Outcomes ; 19(1): 25, 2021 Jan 20.
Artigo em Inglês | MEDLINE | ID: mdl-33472648

RESUMO

BACKGROUND: A variety of diabetes self-management instruments have been developed but few of them consist of the preparedness for diabetes self-management behavior. The novel psychometric evaluation tool "the LMC Skills, Confidence & Preparedness Index (SCPI)" measures three key aspects of a patient's diabetes self-management: knowledge of the skill, confidence in being able to perform skill and preparedness to implement the skill. The objective of this study was to translate, adapt and validate the SCPI for use in Chinese adult patients with type 2 diabetes. METHODS: This study followed the guideline recommended by the American Academy of Orthopaedic Surgeons Evidence Based Medicine Committee (AAOS) to indigenize the scale. Forward and back translation, and cross-cultural language debugging were completed according to the recommended steps. A convenience sample of Chinese patients with type 2 diabetes (n = 375) were recruited from a university-affiliated hospital in Shanghai. The validity (criterion, discriminant validity, and construct validity), reliability (internal consistency and test-retest reliability) and the interpretability of the instrument were examined. The content validity was calculated by experts' evaluation. RESULTS: The Chinese version of SCPI (C-SCPI) has good internal consistency with a Cronbach's alpha of 0.92. The ceiling effects of the preparedness subscales is 21%. The criterion validity of three dimensions of C-SCPI was established with significantly moderate correlations between the DKT, DES-SF and SDSCA (p < 0.05). The S-CVI of the whole scale was 0.83. Except for entry 21, the I-CVI values of all entries were greater than 0.78. The C-SCPI has also shown good discriminative validity with statistically significant differences between the patients with good and poor glycemic control. Confirmatory factor analysis showed that modified results indicate that the fitting degree of the model is good, χ2/df = 2.775, RMSEA = 0.069, CFI = 0.903, GFI = 0.873, TLI = 0.889, IFI = 0.904. The test-retest reliability coefficient was 0.61 (p < 0.01). CONCLUSION: We established a Chinese version of SCPI through translation and cross-cultural adaptation. The C-SCPI is reliable and valid for assessment of the level of self-management in Chinese patients with type 2 diabetes.


Assuntos
Diabetes Mellitus Tipo 2/psicologia , Psicometria/instrumentação , Autogestão/psicologia , Idoso , China/epidemiologia , Análise Fatorial , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Traduções
7.
Scand J Med Sci Sports ; 31(5): 999-1008, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33089516

RESUMO

Translating patient-reported outcome measures (PROMs) can alter the meaning of items and undermine the PROM's psychometric properties (quantified as cross-cultural differential item functioning [DIF]). The aim of this paper was to present the theoretical background for PROM translation, adaptation, and cross-cultural validation, and assess how PROMs used in sports medicine research have been translated and adapted. We also assessed DIF for the Knee Injury and Osteoarthritis Outcome Score (KOOS) across Danish, Norwegian, and Swedish versions. We conducted a search in PubMed and Scopus to identify the method of translation, adaptation, and validation of PROMs relevant to musculoskeletal research. Additionally, 150 preoperative KOOS questionnaires were obtained from the Scandinavian knee ligament reconstruction registries, and cross-cultural DIF was evaluated using confirmatory factor analysis and Rasch analysis. There were 392 studies identified, describing the translation of 61 PROMs. Ninety-four percent were performed with forward-backward technique. Forty-nine percent used cognitive interviews to ensure appropriate wording, understandability, and adaptation to the target culture. Only two percent were validated according to modern test theory. No study assessed cross-cultural DIF. One KOOS subscale showed no cross-cultural DIF, two had DIF with respect to some (but not all) items, and thus conversion tables could be constructed, and two KOOS subscales could not be pooled. Most PROM translations are of undocumented quality, despite the common conclusion that they are valid and reliable. Scores from three of five KOOS subscales can be pooled across the Danish, Norwegian, and Swedish versions, but two of these must be adjusted for DIF.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Medicina Esportiva , Traumatismos em Atletas/terapia , Cartilagem Articular/lesões , Comparação Transcultural , Humanos , Traumatismos do Joelho/complicações , Traumatismos do Joelho/cirurgia , Ligamentos Articulares/lesões , Osteoartrite do Joelho/diagnóstico , Psicometria , Reprodutibilidade dos Testes , Países Escandinavos e Nórdicos , Traduções
8.
Knee Surg Sports Traumatol Arthrosc ; 29(2): 616-626, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32303799

RESUMO

PURPOSE: To translate and cross-culturally adapt the Swedish Knee Self-Efficacy Scale (K-SES) into English and evaluate the measurement properties in a sample of individuals with previous knee injury. METHODS: Translation, cross-cultural adaptation, and evaluation followed the Beaton multi-step process and COSMIN guidelines. Participants (n = 125) aged 16-60 years with a sport-related intra-articular tibiofemoral or patellofemoral injury within the last 5 years completed the K-SES, Knee Injury and Osteoarthritis Outcome Score, Anterior Cruciate Ligament-Return to Sport After Injury Scale, Tegner Activity Level Scale, and Multi-dimensional Health Locus of Control. Confirmatory factor analysis (CFA) tested a-priori two-factor structure and model fit. Cronbach-alpha, intra-class correlation coefficient (ICC), and absolute reliability (Bland-Altman plots) were calculated. Construct validity was assessed by eight pre-defined hypotheses. A sub-group of participants (n = 42) completed the K-SES twice to assess intra-rater reliability. RESULTS: The cross-cultural adaptation generated an English K-SES with face and content validity. The original two-factor structure was rejected based on CFA and a revised solution informed by Exploratory Factor analysis resulted in an adequate fit. All construct validity hypotheses were confirmed. The K-SES showed good internal consistency [Factor (F1: α = 0.96; F2: α = 0.73)], intra-rater reliability (ICC = 0.92), and no systematic bias between repeated measurements. CONCLUSION: The English K-SES is a valid and reliable measure for knee-specific self-efficacy in individuals who have sustained a sport-related intra-articular knee injury in the previous 5 years. LEVEL OF EVIDENCE: IV.


Assuntos
Traumatismos em Atletas/terapia , Traumatismos do Joelho/terapia , Medidas de Resultados Relatados pelo Paciente , Autoeficácia , Adolescente , Adulto , Traumatismos em Atletas/psicologia , Criança , Feminino , Humanos , Traumatismos do Joelho/psicologia , Escore de Lysholm para Joelho , Masculino , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes , Suécia , Traduções , Adulto Jovem
9.
Qual Life Res ; 29(5): 1385-1391, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-31950328

RESUMO

PURPOSE: To translate, cross-culturally adapt and preliminarily test the Simplified Chinese version of SF-6Dv2 among the Chinese general population. METHODS: The translation followed the international guidelines. Face-to-face cognitive debriefing was carried out in a small sample of the Chinese general population, using both think-aloud and retrospective probing methods. Preliminary psychometric properties (including acceptability, ceiling/floor effect and known-group validity) were investigated using a cross-sectional survey which was conducted in a representative sample of the general population in Tianjin, China. RESULTS: Translation was conducted by forward- and back-translation, followed by harmonization and expert review. Two minor modifications were made during cognitive debriefing. Five hundred and nine respondents (54.4% males, aged 18-86 years) participated in the psychometric testing survey. The mean (standard deviation) duration of finishing SF-6Dv2 was 96.9 s (58.5 s). No respondents claimed difficulties on understanding/answering, and no ceiling/floor effect was found in the total summary score. Known-group validity verified that the questionnaire was able to distinguish between subgroups in terms of whether having chronic conditions. CONCLUSIONS: The Simplified Chinese version of SF-6Dv2 is demonstrated to be conceptually equivalent with the original English version, which is also understandable and easy to finish among the Chinese general population.


Assuntos
Psicometria/métodos , Qualidade de Vida/psicologia , Traduções , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , China , Comparação Transcultural , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Estudos Retrospectivos , Inquéritos e Questionários , Tradução , Adulto Jovem
10.
Health Qual Life Outcomes ; 16(1): 172, 2018 Sep 04.
Artigo em Inglês | MEDLINE | ID: mdl-30180857

RESUMO

BACKGROUND: Questionnaires have proven their worth in detecting changes in quality of life after medical interventions. The Nasal Obstruction Symptom Evaluation scale (NOSE) is a reliable and valid tool to identify restrictions of quality of life in patients with nasal problems. The aim of this prospective study was the validation of the German version of the NOSE scale (D-NOSE). METHODS: Adaption of the NOSE in German language was performed by forward and backward translation process. Patients undergoing functional septorhinoplasty were asked to complete the D-NOSE preoperatively, one, three or twelve months after surgery. Healthy volunteers served as controls. Reliability, validity and responsiveness of the D-NOSE were determined. RESULTS: The D-NOSE showed a good internal consistency as well as good inter-item, item-total correlation and a satisfactory test-retest reliability. The convincing validity of the adapted NOSE scale was approved by good construct validity and an excellent discriminant validity. Furthermore, a high sensitivity to identify clinical changes due to an intervention indicates a good responsiveness of the D-NOSE. CONCLUSIONS: The adapted German version of the NOSE questionnaire (D-NOSE) is an appropriate and validated tool to assess the influence of nasal obstruction in quality of life in German speaking patients.


Assuntos
Indicadores Básicos de Saúde , Obstrução Nasal/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários/normas , Avaliação de Sintomas/normas , Adulto , Feminino , Alemanha , Humanos , Idioma , Masculino , Pessoa de Meia-Idade , Obstrução Nasal/cirurgia , Estudos Prospectivos , Reprodutibilidade dos Testes , Adulto Jovem
11.
BMC Health Serv Res ; 18(1): 555, 2018 07 16.
Artigo em Inglês | MEDLINE | ID: mdl-30012217

RESUMO

BACKGROUND: Person-centred health care has widespread recognition, but there are few instruments aimed at measuring the provision of person-centred practice among health care professionals across a range of settings. The Person-centred Practice Inventory - Staff (PCPI-S) is a new instrument for this purpose, theoretically aligned with McCormack & McCance's person-centred framework, which has been translated and culturally adapted into Norwegian. METHODS: The study used a two-stage research design involving: translation and cultural adaption of the PCPI-S from English to Norwegian language (phase 1), and a quantitative cross sectional survey following psychometric evaluation (phase 2). Confirmatory factor analysis was used to examine the theoretical measurement model. RESULTS: The translation and cultural adaption was carried out according to ten recommend steps. Discrepancies were addressed and revised by all translators until consensus was reached on a reconciled version of the translation. A sample of 258 health care staff participated in the survey. The model fit statistics were overall positive; the model requires minor modifications and these are mostly confined to correlated errors. CONCLUSIONS: The translation and cultural adaption process of the PCPI-S from English to Norwegian language was a demanding process in order to retain the conceptual meanings of the original instrument. Overall, the psychometric properties of the tool were acceptable, but testing on a larger sample size is recommended.


Assuntos
Assistência Centrada no Paciente , Prática Profissional , Adulto , Atitude do Pessoal de Saúde , Estudos Transversais , Cultura , Análise Fatorial , Feminino , Humanos , Idioma , Masculino , Modelos Estatísticos , Noruega , Psicometria/instrumentação , Reprodutibilidade dos Testes , Mudança Social , Inquéritos e Questionários , Tradução , Traduções
12.
BMC Fam Pract ; 19(1): 119, 2018 07 19.
Artigo em Inglês | MEDLINE | ID: mdl-30025525

RESUMO

BACKGROUND: Majority of patients with chronic illnesses such as diabetes, receive care at primary care setting. Efforts have been made to restructure diabetes care in the Malaysian primary care setting in accordance with the Chronic Care Model (CCM). The Patient Assessment on Chronic Illness Care (PACIC) is a validated self-report tool to measure the extent to which patients with chronic illness receive care that aligns with the CCM. To date, no validated tool is available to evaluate healthcare delivery based on the CCM in the Malay language. Thus, the study aimed to translate the PACIC into the Malay language and validate the questionnaire among patients with diabetes in the Malaysian public primary care setting. METHODS: The English version of the PACIC questionnaire is a 20-item scale measuring five key components, which are patient activation, decision support, goal setting, problem solving and follow-up care. The PACIC underwent forward - backward translation and cross cultural adaptation process to produce the PACIC-Malay version (PACIC-M). Reliability was tested using internal consistencies and test-retest reliability analyses, while construct validity was tested using the exploratory factor analysis (EFA). RESULTS: The content of PACIC-M and the original version were conceptually equivalent. Overall, the internal consistency by Cronbach's α was .94 and the intra-class correlation coefficient was .93. One item was deleted (item 1) when the factor loading was < 0.4. The factor analyses using promax identified three components ('Goal Setting/Tailoring and Problem solving/Contextual', 'follow-up/coordination' and 'patient activation and delivery system design/ decision support'); explaining 61.2% of the variation. The Kaiser-Meyer-Olkin (KMO) was 0.93 and Bartlett's test of sphericity was p = .000. Therefore, the final version of the PACIC-M consisted of 19 items, framed within three components. CONCLUSION: The findings demonstrated that the PACIC-M measured different dimensions from the English version of PACIC. It is however; highly reliable and valid to be used in assessing three CCM model subscales. Further confirmatory factor analysis of PACIC-M should be conducted to confirm this new model.


Assuntos
Diabetes Mellitus Tipo 2/terapia , Assistência Centrada no Paciente/normas , Atenção Primária à Saúde/normas , Qualidade da Assistência à Saúde , Adulto , Doença Crônica , Estudos Transversais , Análise Fatorial , Feminino , Humanos , Malásia , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Reprodutibilidade dos Testes , Autorrelato , Inquéritos e Questionários , Traduções
13.
Scand J Caring Sci ; 32(3): 1254-1260, 2018 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-29148073

RESUMO

OBJECTIVES: Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member. METHODS: This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording. RESULTS: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable. SIGNIFICANCE OF RESULTS: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.


Assuntos
Luto , Cuidadores/psicologia , Família/psicologia , Inquéritos e Questionários , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes , Suécia , Traduções , Adulto Jovem
14.
Support Care Cancer ; 25(1): 51-58, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27539133

RESUMO

PURPOSE: A question prompt list (QPL) is an inexpensive communication aid that has been proved effective in encouraging patients to ask questions during medical consultations. The aim of this project was to develop a QPL for Norwegian cancer patients. METHODS: A multimethod approach was chosen combining literature review, focus groups, and a survey in the process of culturally adjusting an Australian QPL for the Norwegian setting. Participants were recruited from the University Hospital of North Norway. They were asked to review and comment on iterative drafts of the QPL. RESULTS: Eighteen patients, mean age 54, participated in the focus groups, and 31 patients, mean age 55, participated in the survey. Focus groups suggested that topics related to accompanying relatives, children as next of kin, and rehabilitation were important and should be added to the original QPL. The survey revealed that most questions from the original QPL were considered both useful and understandable. Although half of the patients found some questions about prognosis unpleasant, the vast majority considered the same questions useful. Questions regarding clinical studies, multidisciplinary teams, and public versus private hospitals had lower ratings of usefulness. CONCLUSION: QPLs require some adjustment to the local cultural context, and a mixed method approach may provide a useful model for future cultural adaptation of QPLs. The present QPL has been adjusted to the needs of oncology patients in the Norwegian health care setting.


Assuntos
Oncologia/normas , Adulto , Idoso , Austrália , Comunicação , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Noruega , Participação do Paciente , Inquéritos e Questionários
15.
Eur Ann Allergy Clin Immunol ; 48(3): 82-7, 2016 May.
Artigo em Inglês | MEDLINE | ID: mdl-27152603

RESUMO

Food allergy is a health problem with significant negative impact in Quality of Life (QoL). We aimed to translate into Portuguese and culturally adapt to our population the Food Allergy Quality of Life Questionnaire - Parent Form (FAQLQ-PF). Cross-cultural translation was performed according to guidelines. Linguistic validation consisted in 3 steps: forward translation, backward translation and comprehensibility testing. A consensual version was obtained and tested in parents of food allergic children by cognitive debriefing. Twelve questionnaires were fulfilled, all completed in ≤ 15 min. No comments, doubts or suggestions were posed, except for 2 parents regarding a question about the number of food their children had to avoid. Two gave special positive feedback about the utility of FAQLQ-PF. Changes have been included after this pre-test in accordance to doubts and suggestions of participants, and the Portuguese version is now able to be used in clinics and research.


Assuntos
Hipersensibilidade Alimentar , Humanos , Pais , Qualidade de Vida , Inquéritos e Questionários
16.
Matern Child Nutr ; 11 Suppl 3: 55-72, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26778802

RESUMO

'Implementation research in nutrition' is an emerging area of study aimed at building evidence-based knowledge and sound theory to design and implement programs that will effectively deliver nutrition interventions. This paper describes some of the basic features of ethnography and illustrates its applications in components of the implementation process. We review the central purpose of ethnography, which is to obtain the emic view--the insider's perspective--and how ethnography has historically interfaced with nutrition. We present examples of ethnographic studies in relation to an analytic framework of the implementation process, situating them with respect to landscape analysis, formative research, process evaluation and impact evaluation. These examples, conducted in various parts of the world by different investigators, demonstrate how ethnography provided important, often essential, insights that influenced programming decisions or explained programme outcomes. Key messages Designing, implementing and evaluating interventions requires knowledge about the populations and communities in which interventions are situated, including knowledge from the 'emic' (insider's) perspective. Obtaining emic perspectives and analysing them in relation to cultural, economic and structural features of social organisation in societies is a central purpose of ethnography. Ethnography is an essential aspect of implementation research in nutrition, as it provides important insights for making decisions about appropriate interventions and delivery platforms; determining how best to fit aspects of programme design and implementation into different environmental and cultural contexts; opening the 'black box' in interventions to understand how delivery and utilisation processes affect programme outcomes or impacts; and understanding how programme impacts were achieved, or not.


Assuntos
Antropologia Cultural , Implementação de Plano de Saúde , Terapia Nutricional , Pesquisa , África , Pré-Escolar , Dieta , Dietética , Alimentos , Comportamentos Relacionados com a Saúde/etnologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Humanos , Indígenas Norte-Americanos , Lactente , Desnutrição/dietoterapia , Desnutrição/prevenção & controle , Necessidades Nutricionais , Ciências da Nutrição , Ilhas do Pacífico
17.
J Nurs Meas ; 2024 Mar 25.
Artigo em Inglês | MEDLINE | ID: mdl-38519077

RESUMO

Background and Purpose: A sound translation is complex but necessary to provide a valid patient-reported questionnaire. The aim of this study was therefore to translate, culturally adapt, and linguistically validate the 17-item Wound-Quality of Life (Wound-QoL) questionnaire from English to Norwegian. Methods: For translation and cultural adaption of the Wound-QoL, we followed the methods described by the ISPOR-The Professional Society for Health Economics and Outcomes Research (formerly, the International Society for Pharmacoeconomics and Outcome Research), Messaging Application Programming Interface Research Institute, and recommendations from literature reviews. Results: Differences in the language semantics and syntax caused challenges in the translation. The cognitive debriefing interviews revealed some irrelevant items related to personal preferences. Conclusions: This study provides a questionnaire that can improve the quality of clinical care and promote research and valuable knowledge to other researchers translating the Wound-QoL and similar questionnaires.

18.
J Transcult Nurs ; : 10436596241256328, 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38828565

RESUMO

INTRODUCTION: Few interventions have focused on Latino family caregivers to persons with dementia, addressing their unique needs. This review aimed to identify best practices in cultural adaptation to make recommendations for adapting interventions for Latino family caregivers of persons living with dementia. METHOD: This scoping review was conducted following the Joanna Briggs Institute Scoping Review guidelines, with findings extracted and summarized from 17 studies addressing cultural adaptation. RESULTS: Frameworks guiding the adaptations were comprehensive, addressing cultural values and traditions and the social context faced by Latino family caregivers. Features of the adaptations included diverse teams of researchers and community members, including Latino family caregivers, to inform the integration of cultural values into the content, mode, and place of intervention delivery. DISCUSSION: Culturally adapting evidence-based interventions will increase the number of available interventions for Latino family caregivers to persons living with dementia, thus reducing inequities in caregiver support.

19.
Children (Basel) ; 10(7)2023 Jun 25.
Artigo em Inglês | MEDLINE | ID: mdl-37508603

RESUMO

(1) Background: Lower Limb deformities include many conditions where pain and physical limitations negatively impact the health-related quality of life (HRQL) of children. The ideal way to assess this impact is by using a Patient Reported Outcome Measure (PROM). Such a condition-specific PROM is under development, called LIMB-Q Kids. This study aimed to perform a translation and cultural adaption (TCA) of the LIMB-Q Kids for use in Danish-speaking children. (2) Methods: TCA guidelines established by the World Health Organization (WHO) and the Professional Society for Health Economics and Outcomes Research (ISPOR) were followed. This process consisted of two independent forward translations, a reconciliation meeting, a backward translation with an assessment, an expert meeting, cognitive interviews with patients, editing based on the interviews, and proofreading. (3) Results: The TCA process contributed to the Danish version of LIMB-Q Kids. The reconciliation meeting resulted in a reconciled Danish version. The revision of the backward translation led to 16 corrections, and after the expert panel meeting, 26 changes were made. Twelve cognitive interviews led to nine changes, which were validated by two further interviews. Proofreading led to no further comments. (4) Conclusions: The TCA process led to a linguistically validated and culturally adapted Danish version of LIMB-Q Kids. This version is being used in the international field test study.

20.
Glob Health Action ; 15(1): 2080344, 2022 12 31.
Artigo em Inglês | MEDLINE | ID: mdl-35867541

RESUMO

BACKGROUND: Effective interventions exist for heavy drinking and depression but to date there has been limited translation into routine practice in global health systems. This evidence-to-practice gap is particularly evident in low- and middle-income countries. The international SCALA project (Scale-up of Prevention and Management of Alcohol Use Disorders and Comorbid Depression in Latin America) sought to test the impact of multilevel implementation strategies on rates of primary health care-based measurement of alcohol consumption and identification of depression in Colombia, Mexico, and Peru. OBJECTIVE: To describe the process of development and cultural adaptation of the clinical intervention and training package. METHODS: We drew on Barrero and Castro's four-stage cultural adaption model: 1) information gathering, 2) preliminary adaption, 3) preliminary adaption tests, and 4) adaption refinement. The Tailored Implementation in Chronic Diseases checklist helped us identify potential factors that could affect implementation, with local stakeholder groups established to support the tailoring process, as per the Institute for Healthcare Improvement's Going to Scale Framework. RESULTS: In Stage 1, international best practice guidelines for preventing heavy drinking and depression, and intelligence on the local implementation context, were synthesised to provide an outline clinical intervention and training package. In Stage 2, feedback was gathered from local stakeholders and materials refined accordingly. These materials were piloted with local trainers in Stage 3, leading to further refinements including developing additional tools to support delivery in busy primary care settings. Stage 4 comprised further adaptions in response to real-world implementation, a period that coincided with the onset of the COVID-19 pandemic, including translating the intervention and training package for online delivery, and higher priority for depression screening in the clinical pathway. CONCLUSION: Our experience highlights the importance of meaningful engagement with local communities, alongside the need for continuous tailoring and adaptation, and collaborative decision-making.


Assuntos
Alcoolismo , COVID-19 , Alcoolismo/epidemiologia , Alcoolismo/prevenção & controle , COVID-19/epidemiologia , COVID-19/prevenção & controle , Atenção à Saúde , Depressão/epidemiologia , Depressão/prevenção & controle , Humanos , América Latina/epidemiologia , Pandemias
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