Evaluation of professional knowledge and attitudes on dementia patient care: a trans-cultural adaptation of an evaluation instrument^*

Evaluación de conocimientos y actitudes profesionales en el cuidado a las demencias: adaptación transcultural de un instrumento

Abstracts

Objective

To describe the trans-cultural adaptation of the evaluation instrument entitled Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià from Catalan into versions in Portuguese for doctors and nurses. This study evaluates the knowledge and perspectives of these professionals in their treatment of patients diagnosed with dementia in cases of primary care.

Method

The adaptation followed internationally accepted rules, which include the following steps: translation, synthesis, back-translation, revision by a committee of specialists, and a test run with 35 practicing doctors and 35 practicing nurses in Brazil's Family Health Strategy (Estratégia Saúde da Família, or ESF in Portuguese).

Results

The translation, synthesis, and back-translation steps were performed satisfactorily; only small adjustments were required. The committee of specialists verified the face validity in the version translated into Portuguese, and all of the items that received an agreement score lower than 80% during the initial evaluation were revised. In the test run, the difficulties presented by the health care professionals did not reach 15% of the sample, and therefore, no changes were made.

Conclusion

The Portuguese translation of the instrument can be considered semantically, idiomatically, culturally, and conceptually equivalent to the original Catalan version and is, therefore, appropriate for use in Brazil.

Dementia; Aged; Primary Health Care; Health Personnel; Cross-Cultural Comparison

Objetivo

Describir el proceso de adaptación transcultural del instrumento Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià, en sus versiones para médicos y enfermeros, utilizado para evaluar el conocimiento y las actitudes de dichos profesionales en la atención a las demencias en la Atención Primaria.

Método

La adaptación siguió normas internacionalmente aceptadas, con las siguientes etapas: traducción, síntesis, retrotraducción, revisión por un comité de expertos y pre prueba con 35 médicos y 35 enfermeros actuantes en la Estrategia Salud de la Familia.

Resultados

Las etapas de traducción, síntesis y retrotraducción fueron llevadas a cabo satisfactoriamente, siendo necesarios pequeños ajustes. El comité de expertos verificó la validez de contenido de la versión traducida, y todos los puntos que lograron concordancia inferior al 80% en la evaluación inicial fueron revistos. En la pre prueba, las dificultades presentadas por los profesionales no alcanzaron el 15% de la muestra, no siendo objeto de alteración.

Conclusión

El instrumento traducido alcanzó equivalencia semántica, idiomática, cultural/experimental y conceptual, por lo que se puede emplearlo en la realidad brasileña.

Demencia; Anciano; Atención Primaria de Salud; Personal de Salud; Comparación Transcultural

Objetivo

Descrever o processo de adaptação transcultural do instrumento Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià, em suas versões para médicos e enfermeiros, utilizado para avaliar o conhecimento e as atitudes desses profissionais no atendimento às demências na Atenção Primária.

Método

A adaptação seguiu normas internacionalmente aceitas, com as seguintes etapas: tradução, síntese, retrotradução, revisão por um comitê de especialistas e pré-teste com 35 médicos e 35 enfermeiros atuantes na Estratégia Saúde da Família.

Resultados

As etapas de tradução, síntese e retrotradução foram realizadas a contento, sendo necessários pequenos ajustes. O comitê de especialistas verificou a validade de conteúdo da versão traduzida e todos os itens que obtiveram concordância inferior a 80% na avaliação inicial foram revistos. No pré-teste, as dificuldades apresentadas pelos profissionais não atingiram 15% da amostra, não sendo objeto de alteração.

Conclusão

O instrumento traduzido alcançou equivalências semântica, idiomática, cultural/experimental e conceitual, podendo ser usado na realidade brasileira.

Demência; Idoso; Atenção Primária à Saúde; Pessoal de Saúde; Comparação Transcultural

Introduction

The demographic shifts in the past few decades witnessed around the world include dramatic changes in average population age and life expectancy. In Brazil, life expectancy increased from 48.9 years to 75.0 years from 1960 to 2012, respectively, in just over half a century(¹-²). The country's fertility rate, which was 2.4 children per woman in 2000, has continued to decrease and reached 1.8 between 2002 and 2006(³). These changes, which have occurred in parallel with technological advances, have led to a narrower base in the Brazilian age pyramid and a wider top section; this reflects the structure of an aging population, common in developed countries(²).

Projections estimate that the population over 60 years of age is likely to rise from 14.9 million (7.4% of the total population) in 2013 to 58.4 million (26.7% of the total population) in 2060. During the same period, average life expectancy in Brazil is likely to increase from 75 years to 81 years of age(¹). The age cohort that will experience the most expansion will be the 80 years and older group(⁴-⁵).

It is worrisome that living longer contributes to the decline of physiological functions and increases the probability of chronic neuro-degenerative diseases, including dementia. These diseases can lead to different degrees of physical and mental incapacity and can present many challenges for both the families of the elderly and Brazilian society as a whole(⁶-⁷).

Currently, the number of people living with dementia worldwide is estimated to be 35.6 million. This number is expected to double by 2030 and triple by 2050(⁷). From a clinical perspective, little can be done to prevent or revert cases of dementia. At most, doctors can slow its evolution when the diagnosis is made in the early stages. As the disease progresses, the person affected by it becomes increasingly dependent upon care from family members(⁸).

Caring for people with dementia is a significant burden for those who undertake this responsibility. The patient's behavioral issues can lead to cases of depression and anxiety in caregivers and may even cause their own health to decline. Knowing how to recognize the symptoms of the disease may help reduce tensions between the caregiver and the patient. Thus, it may improve care and, consequently, the quality of life of both patient and caregiver(⁹).

In Brazil, the tracking of dementia cases is addressed in the Guidelines for Basic Elderly Health Care: Aging and Elder Health (Caderno de Atenção Básica à Saúde do Idoso: Envelhecimento e Saúde da Pessoa Idosa in Portuguese). These guidelines recommend that a senior citizen with a possible memory disorder undergo clinical and cognitive examinations to exclude potentially irreversible types of dementia. Once these types are excluded, monitoring is recommended(¹⁰). However, these examinations are rarely performed as part of basic care in Brazil. Many professionals report that they do not feel prepared, that they have not received the necessary training to appropriately deal with these cases, or that they do not have time for the clinical investigation required(¹¹).

Many studies have been performed to evaluate the knowledge and perspectives of professionals in primary care involved in treating patients with dementia(¹²-²⁰). One of the strategies used was the application of questionnaires in their workplaces. Among the questionnaires available, one instrument in Catalan deserves special attention: the Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià((¹⁴). Its approach to the topic is very complete and it is available in two versions: one for doctors and another for nurses.

For years, Catalonia (the Spanish autonomous community, the capital of which is Barcelona) has faced progressive aging of its population; Brazil is now beginning to experience similar challenges. Due to these changes, Catalonia's public health system has had to adapt itself to respond to the specific health needs of its population.

To formulate a protocol for cases of suspected clinical cognitive impairment, the Catalan Society of Family and Community Medicine developed a questionnaire to better understand the needs of medical professionals working in primary care so that these professionals can better diagnose, treat, and monitor patients suffering from dementia and their families(¹⁴).

In both the doctors' and the nurses' version, the original instrument contains both open and closed questions. The questions are self-explanatory and can be answered independently. They consider the monitoring, diagnosis, and follow-up of patients with dementia. The closed questions include multiple-choice questions, classification questions, and others with a limited number of response options from which the professional can only choose one. There are no wrong answers, since the inquiry solicits the opinions of professionals about the procedures involved in their daily clinical practices. The goal of the inquiry is to better understand the treatment that patients with dementia receive.

The goal of this study was to adapt for use both the doctors' and the nurses' version of the instrument. Once adapted, it will provide an insight into the perspectives of the health care professionals involved in the primary health care of patients with dementia in Brazil. The results can aid in the development of qualification programs that will, in turn, make it possible for these health professionals to offer a better quality of care to patients and their families.

Method

Both the doctors' and nurses' versions of the inquiry instrument were adapted according to the protocol of international trans-cultural rules for adopting evaluation instruments(²¹). To perform this adaptation, a translation, synthesis, back-translation, review by a committee of specialists (judges), and a test run were conducted.

Initial Translation into Portuguese

In the first stage, the instruments were translated into Brazilian Portuguese. Independent translations (T1 and T2) were performed by two bilingual translators whose first language is Portuguese and who are fluent in Catalan. The first translator, who was an expert in medical translation, received information on the objectives and concepts involved in the instruments. The second translator did not share this specialty and did not receive this information.

Translation Synthesis

After T1 and T2 were completed, the researchers involved held a meeting to synthesize the translations and a single common translation (T3) was developed. T3 was approved by both the original translators.

Back-Translation

T3 was then translated back into its original language (Catalan) by two bilingual translators who were not from the health field and whose first language was Catalan. This task resulted in two back-translations (BT1 and BT2). In this stage, the translators did not receive any information about the objectives or concepts involved in the instruments.

To confirm that the back-translations contained the same content as the original version, a native Catalan speaker working as a translator in Brazil was asked to evaluate the work. This translator confirmed that the meaning of the original instruments had been maintained, and no further revisions were necessary.

Revision by a Committee of Judges (Face Validity)

In this stage, T3 (which was accompanied by the original instruments, along with T1, T2, BT1, and BT2) was submitted for analysis to a committee of judges specialized in the topic at hand. The committee comprised five doctors and five nurses, each of whom focused on their respective version. Almost all of the judges were bilingual and experienced in trans-cultural adaptation of instruments.

The judges' review focused on the differences between the translation and its practical use, a factor which can be characterized as face validity(²²). First, each judge evaluated the instrument independently. The following factors were evaluated: semantic equivalence, which refers to the consistency in the meaning of the words and the correct translations of the items and concepts; idiomatic equivalence, or the use of consistent idiomatic or colloquial expressions between the two languages; cultural equivalence, or the coherence between the daily experiences and culture of the two countries involved; and conceptual equivalence, which refers to the consistency between the concepts proposed in the original instrument and the translated instrument(²¹).

The items were evaluated using an equivalency scale with the following classifications: -1 (not equivalent); 0 (unclear); and +1 (equivalent) (²³). The content that was classified by the committee members as not equivalent (-1) or unclear (0) were revised until the specialists reached at least an 80% consensus rate(²³-²⁴). Both versions of the instrument were also reviewed by a sixth judge, a Brazilian Portuguese editor, who revised the written language of the document.

After the judges' initial evaluation, three meetings were held with the group to discuss the issues and to select the terms that would be most appropriate for Brazilian culture. It is important to note that not all judges were able to attend all of the meetings. They received a summary of the discussion and comments via e-mail so they could be involved in the final decision-making. Thus, at least an 80% consensus was reached among the judges, and the pre-final version of the instruments was ready for the test run in the field.

Test Run

For the test run, the final stage of the trans-cultural adaptation process, the pre-final versions of the instruments were given to 35 practicing doctors and 35 practicing nurses from the Primary Health Care Units (Unidades Básicas de Saúde, or UBS in Portuguese) of Brazil's Family Health Strategy. The institutions involved belong to the Southern Regional Health Care District and to the Santo Amaro/Cidade Ademar Health Care Technical Supervision Department of the city of São Paulo, in São Paulo State.

Each participant received a printed version of the pre-final instrument. They were asked if they understood the wording of the questions and the possible responses and were encouraged to express any doubts. If 15% or more of the participants had difficulty understanding a question, a revision would be considered. This stage produced the final Portuguese versions of the instruments.

Data Analysis

To create and develop the database, as well as to perform the statistical analysis, Microsoft Office® Excel® and the Statistical Package for the Social Sciences (SPSS®), version 20.0 for Windows, were used. The descriptive statistical analysis was performed to characterize the subjects, to verify the face validity of the adapted instruments, and to determine the results of the test run.

Ethical Considerations

The study was approved by the Committee of Research Ethics of the University of São Paulo (number 252.904/2013) and the São Paulo Municipal Department of Health (number 255.857/2013). All of the participants signed a free and clarified consent form (TCLE, in Portuguese). The main author of the original instruments authorized the adaptation.

Results

The cultural adaptation process took one year. T1 and T2 of the instruments were similar; the version from Translator 1 was more representative of Brazilian Portuguese and more formal than the version from Translator 2. Small adjustments were necessary during the researchers' meeting to generate the final synthesized translation (T3). BT1 and BT2 were satisfactorily produced. It was confirmed that the meaning of the original instruments was maintained in the translations.

As for the evaluation by the judges' committee, the results of the equivalency scales among the five doctors and five nurses are presented in Table 1.

Table 1
Indices of agreement among the judges, according to the evaluations of semantic, idiomatic, cultural, and conceptual equivalence between the original and translated versions of the instrument Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià, with a doctors' and a nurses' version, in São Paulo, 2014.

The items with results below 80% were reviewed and modified according to the suggestions from the judges. Almost all of the items received grammatical changes from the Brazilian Portuguese editor. In the second evaluation, after the alterations proposed by the judges' committee and the Portuguese editor were implemented, a consensus of above 80% was reached for all of the evaluated items. The Portuguese name that the judges proposed for the instrument was Atenção Sanitária às Demências: a visão da Atenção Básica (Health Care for Dementia Patients: the primary health care perspective).

In the test run, the professionals involved were predominantly female (65.7% of the doctors and 94.3% of the nurses). The doctors averaged 38.6 years of age (SD = 10.0; median = 35.0), and the nurses averaged 36.1 years of age (SD = 5.9; median = 36). The doctors' time of employment in Primary Health Care Units averaged 89.2 months (SD = 89.8; median = 60.0), while the nurses' time of employment averaged 87.0 months (SD = 42.3; median = 84.0).

At this point, the problems were limited to difficulties in answering questions where a series of factors had to be identified and classified according to importance, from most important to least important (two doctors and four nurses reported this problem). When they were advised to re-read the instructions on the use of the instrument, one nurse still had questions that were resolved by a verbal explanation from the interviewer. Because these difficulties were not experienced by 15% or more of the professionals sampled, no changes were made.

However, six professionals (17.1%) reported feeling the need for another alternative in 14a, which considers the reasons for their difficulties in caring for patients with advanced stages of dementia. Thus, the answer choice "other" was added to the question. For the sake of consistency, the same alteration was also added to question 21a of the doctors' version of the questionnaire. The Brazilian Portuguese versions of the instruments can be found in the Appendix.

Discussion

The trans-cultural adaptation of instruments has been employed frequently in recent years due to the growing trend of multi-center studies and the important cultural differences among countries. Through this adaptation, the object being studied can be compared among countries or among people of different origins in the same country(²¹).

Many authors have dedicated their work to the construction of systematic methods of trans-cultural adaptations that would allow for the measurement of a given phenomenon in different cultures. To preserve the conceptual significance of a questionnaire or instrument, a good linguistic translation is not enough; the translation should also consider the culture and the lifestyle of the population which will receive the new version(²¹).

In this study, the trans-cultural adaptation process strictly followed the recommendations established by the protocol(²¹). It is important to note that no other cultural adaptation studies of the instrument Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià was found in doctors' or nurses' versions in any other languages or cultures.

The face validity allowed for the evaluation of the "degree to which each element of the instrument is relevant and representative of a specific construct and with a particular evaluation purpose"(²²). This validity can be established by a committee of specialists from the area of the questionnaire. For the judges to perform a good initial independent evaluation, they should first be provided specific instructions on how to evaluate each item and the instrument as a whole, as well as how to fill out the form that will guide the evaluation and only then should they meet with other committee members. In this study, each of these steps was followed. In this way, the meeting will allow for the judges to resolve the contentious points observed during the initial assessment(²²). Many other studies have relied on the method used in this study to guarantee the face validity(²⁵-²⁷).

The judges considered the instruments to be culturally relevant for medical practice in Brazil. According to the committee, "the specialized services available have not responded to the demand for dementia treatment that has come about as a result of the increase in life expectancy." It worries them that patients do not seek out health care services until the disease has reached an advanced stage.

It is important to note that, in the Brazilian version of the instrument, the term "basic care" was adopted rather than "primary care" because the term "basic care" is used in Brazilian health care system as a different concept than primary care. In the 1980s, the idea of primary care had assumed "the character of a simplified health care program for the poor in rural and urban areas, rather than a strategy for the reorganization of the health services system"(²⁸).

As part of the country's basic care policy, primary health care services were developed with a high degree of decentralization, and therefore, it became many patients' first contact with the system. Therefore, the data obtained these services must be communicated to the entire health care network. The main element of the policy is Brazil's Family Health Strategy, the goal of which is to treat the registered population in the areas covered and to refer patients to other practices, depending on the health care needs of the individuals and their families(²⁹). In this situation, better training for the doctors and nurses working in primary care may contribute to more opportune diagnoses of the different types of dementia, or, ideally, to institute proper treatment while the disease is still in its early stages.

The test run, which was the final stage in the adaptation process, provided important information on how people interpret the items in the questionnaire, how to think of ways to resolve the different interpretations of the questions, and whether to include necessary items that complement the health professionals' experiences. In the end, all of the stages of the protocol(²¹) were completed.

A limitation of the study is the fact that the translators who performed the initial translations and back-translations were not able to participate in the judges' committee because of scheduling conflicts.

The cultural adaptation process assures only face validity; therefore, additional tests to evaluate the psychometric properties of the items (such as reliability) using stability evaluations (test-retest) and convergent validity should be performed.

Conclusion

The doctors' and nurses' versions of the inquiry instrument known as the Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià, was satisfactorily adapted for use with the Brazilian population. The Brazilian Portuguese version was observed to maintain the semantic, idiomatic, cultural, and conceptual equivalence of the items translated from the original version in Catalan. The name given in Portuguese was Atenção Sanitária às Demências: a visão da Atenção Básica. It includes 28 questions in the doctors' version and 16 questions in the nurses' version, just as in the original. Both versions are self-explanatory and can be completed independently.

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• *
  Extracted from the Master's dissertation entitled "Adptação transcultural do instrumento Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià," School of Nursing, Universidade de São Paulo, 2014.

• Funding: Fundação de Amparo à Pesquisas do Estado de São Paulo - FAPESP. (Process number 2013/04915-3)

Original Version of the Instruments

Chart 1
Brazilian version of the guidelines for use of the instrument originally known as Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià , for doctors and nurses.

Chart 2
Brazilian version of the instrument originally known as Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià, for doctors.

Chart 3
Brazilian version of the instrument originally known as Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià, for nurses.

Publication Dates

• Publication in this collection
  Mar-Apr 2015

History

• Received
  01 Oct 2014
• Accepted
  28 Nov 2014