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Cross-cultural adaptation of the Pleasant Events Schedule – Alzheimer’s Disease to Brazilian Portuguese

Karen Rosângela Silva de Souza Saviotti1, Mariana Boaro Fernadez Canon1, Marcia Maria Pires Camargo Novelli2

1 Federal University of São Paulo (Unifesp), Health Sciences, Santos, SP, Brazil.

2 Federal University of São Paulo (Unifesp), Ageing Research and Attendance Interprofessional Nucleus (NIPAE), Health Care and Management Department, Occupational Therapy Course, Santos, SP, Brazil.

Received: 8/5/2016 – Accepted: 9/14/2016

DOI: 10.1590/0101-60830000000093

Address for correspondence: Karen Rosângela Silva de Souza Saviotti. Rua Alfenas, 373 – 30310-230 – Belo Horizonte, MG, Brazil. E-mail: karensaviotti.unifesp@gmail.com

Abstract

Background: Engagement in pleasant activities for elders with cognitive impairment may improve mood and reduce behavior problems. The Pleasant Events Schedule-Alzheimer’s Disease (PES-AD) has been described as a useful tool for this purpose, and its transcultural adaptation allows professionals to aid caretakers and elders in identifying pleasurable activities. Objective: Submit the PES-AD to process of cross-cultural adaptation to Brazilian Portuguese. Methods: The PES-AD was submitted to a five-stage process of cross-cultural adaptation as follows: 1) translation; 2) summary of translation; 3) back-translation; 4) evaluation of equivalences: semantic, idiomatic, cultural, conceptual; and 5) pre-testing. Results: The five-stage process was conducted on 36 items and three were adjusted. In the evaluation of equivalencies, four items had a level of agreement less than 0.8 and so were modified according to judges’ suggestions. Discussion: Submitting the PES-AD to a five-stage, cross-cultural adaptation maintained the original instrument’s content validity.

Saviotti KRSS et al. / Arch Clin Psychiatry. 2016;43(5):95-102

Keywords: Leisure activity, pleasure, aged, dementia, Alzheimer’s disease.

Introduction

Currently, according to the 2012 census by the Brazilian Institute of Geography and Statistics (IBGE), the elderly constitute 12.6% of the total Brazilian population1. Due to the elderly’s population growth, the number of people affected by age-related diseases has also increased. Studies show that the prevalence of dementia for elders (age group 60 and older) is approximately 7.1% and that according to the individuals age, this percentage gradually increases2.

For radical behaviorism3, behavior denotes all human action, and any behavior that generates consequences for a person’s environment can be reinforced if followed by reinforcing stimuli. If reinforcing stimuli are positive, the probability of the previous behavior reappearing is greatly enhanced. A positive stimulus also generates pleasurable feelings. Thus, observing the frequency of feelings that follow a behavior is essential to studying human behavior3.

Happiness is a fundamental human need and an integral component of quality of life. Humans possess the ability to experience happiness passively through events that occur on a daily basis or actively through efforts at finding it. Thus, the search for happiness can also be propitiated by social contacts and pleasurable activities4. For Skinner5, when a behavior generates consequences for the environment, it is “operating”, and happiness is a by-product of operating reinforcements. Thus, the things that make an individual happy are those he reinforces himself, and these can be identified and used to forecast individual behavior.

Several studies of healthy elderly people have investigated the practice of social and pleasurable activities, relating them to participants’ health, such as diminished motor functionality, enhanced life quality, maintenance of cognitive abilities, reduced risk of depression, and even development of dementia6-11. Other studies of elders with dementia indicate that those who participate in pleasurable activities present fewer behavioral problems and have better relations with their caregivers, reduced incidence of depression, and reduced cognitive decline7,12,13.

For Teri and Logsdon14, one of the most debilitating consequences of dementia is the gradual loss of ability to perform rewarding and pleasurable daily activities. When caregivers recognize elders’ need for significant activities and provide activities that are individually appropriate and pleasurable, elders frequently experience increased feelings of efficacy as well as reduced feelings of overload and despair14.

The lack or reduction of pleasurable activities has been strongly connected to depression15, a disease commonly associated with dementia. Elders presenting with dementia and depression participate less, communicate less, and find less pleasure in their activities14. Consequently, these individuals start to experience an environment deprived of pleasurable activities15. Thus, identifying pleasurable activities in which dementia patients can participate might aid in relieving depression symptoms and provide personal and interpersonal benefits for both patient and caregiver14. Adding pleasurable activities to this population’s environment might improve mood, reduce behavioral changes, and produce feelings of self-efficiency and accomplishment16.

In Brazil, we found no studies to relate the practice of pleasurable activities and health. Although searches were conducted in Bireme, PubMed, Google Scholar, and PsycINFO (2000 to 2015) to identify studies that objectify such correlations, no Brazilian studies of pleasurable activities for elders were located. Therefore, Brazilian culture needs instruments that evaluate engagement in pleasurable activities and support, providing important information for interventional programs that target improvement in quality of life for individuals with dementia. Until now, Brazil has had no standardized measurements of individuals with cognitive impairment for rate of engagement in pleasurable activities. One instrument is available for our culture, adapted by Ferreira and Barham17; however, it targets elders without cognitive impairment.

The Pleasant Events Schedule-Alzheimer’s Disease (PES-AD) has been described as useful for identifying pleasurable activities for patients with Alzheimer’s disease18, and it can also be used for patients with other types of dementia or cognitive impairment. The long version presents 53 items, and the short version 20. Studies show that both versions have good internal consistency, with Cronbach’s alpha values ranging from 0.76 to 0.95, besides correlation of 0.91 to 0.95 between the long and short versions; furthermore, both versions display a correlation with the severity of depression in elders with Alzheimer’s disease18. Because the short version presents fewer items, it evaluates broader characteristics, therefore presenting less cultural discrepancy. Thus, we adapted the 20-item version to Brazilian Portuguese.

Given the background above, this paper presents results of the PES-AD’s cross-cultural adaptation for Brazilian Portuguese, making possible future validation studies. This research project has been approved by the Ethical Committee of São Paulo Federal University (Unifesp), following the rules of resolution 196/96.

Methods

Figure 1. Cross-cultural Adaptation Steps.

Figure 1. Cross-cultural Adaptation Steps.

The PES-AD’s cross-cultural adaptation process was based on the recommendations of Guillemin19, and Beaton et al.20, and is presented in Figure 1.

Interpreters fluent in both languages (English, the instrument’s original language, and Portuguese) made three translations to Portuguese. Two were researchers in the issues to be addressed (T1, T2), and the third had no previous knowledge of the concepts and no history of clinical or medical knowledge (T3). Results were discussed among the interpreters in order to synthetize translations and resolve discrepancies between versions.

After synthesis of the translations, the first PES-AD version in Portuguese was formulated. This version was then back-translated into the original language (English) by three English professors (B1, B2, B3), different from the first interpreters, but also fluent in the instrument’s original language, one of them with English as a first language. None of them had knowledge of the subject or concepts to be studied. A synthesis of back-translations was compared to the original version, and discrepancies were resolved with the original instrument’s authors (Teri and Logsdon).

After the instrument’s translation and back-translation, a specialist committee was gathered to evaluate the instrument’s equivalencies. With the goal of consolidating all versions, this committee was constituted of three health professionals, one translator, a professor in languages, and a back-translator, also a professor in languages. Committee members reviewed every version, considering the translations’ semantic, idiomatic, cultural, and conceptual equivalencies in their decisions. Semantic equivalency indicates whether words used mean the same thing or represent the same idea in both languages. Idiomatic equivalency involves colloquial expressions that must be congruent with the culture to which the instrument is being adapted. Cultural or experiential equivalence verifies that each item is consistent with the culture to which the instrument is being adapted. Lastly, conceptual equivalency confirms that the significance (concept) of words and expressions is the same in both the original culture and the culture to which the instrument is adapted. For example, the concept of family can differ between a culture that defines it as “nuclear” and one that defines it as “extended” (Beaton, 1995).

For equivalence evaluation, the percentage accepted as equivalent was 0.8 or 80% among the specialists. Items that obtained lesser percentages were modified and again judged by the specialists, to suit them to Brazilian Portuguese culture.

In the pre-test all pacticipantes signed an Informed Consent Form.

Results

Table 1. Translation synthesis for Pleasant Events Schedule-Alzheimer’s Disease into Brazilian Portuguese

Table 1. Translation synthesis for Pleasant Events Schedule-Alzheimer’s Disease into Brazilian Portuguese

Table 1 presents the synthesis of translations and discrepant items in the translation phase. Discrepancies were identified in items 1, 2, 3, 8, and 9 and were discussed among translators; they reached consensus based on the most accessible language form, considering that the instrument is addressed to people with different levels of education. On item 13, the words “strolling through the mall” were added after clarification by the author that, in her culture, shopping would be used when meaning to stroll without buying. This item’s final translation was the version that would represent the most similar idea according to the author’s explanation: buying things or strolling through the mall. Translated versions of items 27 and 31 were combined to widen their reach in Brazilian Portuguese culture. A discrepancy on item 30 was also resolved among interpreters so that the language would be as accessible as possible. Table 2 presents the back-translations’ synthesis.

Versions by back-translators were identical or very similar to the original instrument: no discrepancies led to any changes in the instrument’s synthesis. Cultural equivalency for item 3, “This schedule contains a list of events or activities that people sometimes enjoy”, was translated as “This schedule contains a list of events or activities that people sometimes appreciate”, obtaining a first-evaluation percentage of 0.6. The item was modified according to specialists’ suggestions: “sometimes enjoy” was changed to “usually enjoy” so it would better cohere with Brazilian culture; on evaluation after modification, the item obtained a percentage of 1.

Item 7, “The second time, rate each event on how much your relative enjoys the activity”, was translated as “The second time, rate how much your relative enjoys the activity”, which also obtained a percentage of 0.6. The specialist committee’s suggestion was to modify “The second time” to “On the second time” and to add a translation of “each event”, making the item “On the second time, rate each event on how much your relative enjoys the activity”, so that the item was equivalent in both languages.

Table 2. Back-Translation Synthesis for Pleasant Events Schedule-Alzheimer’s Disease into Brazilian Portuguese

Table 2. Back-Translation Synthesis for Pleasant Events Schedule-Alzheimer’s Disease into Brazilian Portuguese

Table 2. Back-Translation Synthesis for Pleasant Events Schedule-Alzheimer’s Disease into Brazilian Portuguese (CONT.)

Table 2. Back-Translation Synthesis for Pleasant Events Schedule-Alzheimer’s Disease into Brazilian Portuguese (CONT.)

Item 18, “Shopping, buying things”, was initially translated as “buying things or strolling through the mall”, obtaining a percentage of 0.4 for semantic equivalency. According to the committee, English has the same meaning, thus not presenting semantic equivalency in Brazilian Portuguese. It was explained to them that for the instrument’s author, shopping meant strolling without the purpose of buying things. Additionally, specialists observed that not every Brazilian city has shopping malls, suggesting that the item should be modified to “buying things or window shopping”. After this modification, the item was evaluated at 1.

According to some specialists, translation of item 22, “Laughing”, to “Laughing”, was too embracing, causing it to receive an initial score of 0.6 on the first idiomatic and conceptual evaluations. According to the specialists’ guidance, and after consulting the instrument’s author, the item received a percentage of 1 after being modified to “Laughing at situations or events”. The remaining items received agreement of 0.8 or higher. Table 3 presents the equivalency evaluation’s final score.

In July 2014, on the fifth step of the cross-cultural adaptation, a pre-test using the instrument’s final Portuguese version was administered to a sample of caregivers of elders with cognitive impairment. Each caregiver was interviewed on his or her understanding of each item. This step’s objective was to detect possible mistakes and ascertain occasional comprehension problems with any sentences or items. Ten caregivers of elders with cognitive impairment, all from the city of Belo Horizonte, participated. Their average age was 47.2 and average education was 16.2 years.

Table 3. Evaluation of Equivalencies for Pleasant Events Schedule-Alzheimer´s Disease

Table 3. Evaluation of Equivalencies for Pleasant Events Schedule-Alzheimer´s Disease

Table 3. Evaluation of Equivalencies for Pleasant Events Schedule-Alzheimer´s Disease (CONT.)

Table 3. Evaluation of Equivalencies for Pleasant Events Schedule-Alzheimer´s Disease (CONT.)

Table 3. Evaluation of Equivalencies for Pleasant Events Schedule-Alzheimer´s Disease (CONT.)

Table 3. Evaluation of Equivalencies for Pleasant Events Schedule-Alzheimer´s Disease (CONT.)

Discussion

Caregivers rate PES-AD items twice. First, the item is scored according to the frequency at which the event happened during the last 30 days, using a three-point scale with the options not at all, 1 to 6 times, and 7 or more times. Second, each item is rated according to how pleasant the activity was for the elder: not at all, somewhat, or a great deal. The instrument might also be used with caregivers of elders with any type of cognitive impairment.

According to Beaton20, subjecting an instrument to the entire process of cross-cultural adaptation allows it to approach very near the original instrument, but, at the same time, to be adapted to the target culture. This permits measurement to be used in multicenter studies. And in this way, cross-cultural adaptation is the first step in creating studies that investigate participation in pleasurable activities by elders presenting cognitive impairment and correlation with their health promotion. Adapting the PES-AD for the Brazilian population through systematization of this process has granted the instrument content validity in the target language. In other words, the instrument is comprehended well by those completing it.

Both quantitative and qualitative results obtained from this scale are of great importance for the elaboration of programs for intervention and rehabilitation of elders with cognitive impairment. The scale also allows therapists to aid caregivers in finding ways to enhance the amount of pleasurable activities for elders, contributing mainly to reduction of depression symptoms. Hence, the PES-AD allows therapists and caregivers to work together to develop structured treatment plans for elders with cognitive impairment.

During the pre-test, many family members reported difficulties explaining the items’ meaning in different words, eventually repeating the same words. We believe this is due to the scale items’ simplicity and to concern about comprehension during cross-cultural adaptation. We believe this is a positive point for the PES-AD Portuguese-language final version, for it shows that the instrument was translated broadly and is easily accessed by a wide variety of people.

However, future validation studies must also be conducted so that the instrument is safe for clinical use and provides a basis for research with the Brazilian Portuguese population. In brief, cross-cultural adaptation generated a usable, short, Brazilian Portuguese version of the instrument that contains 20 items and takes around 15 minutes to administer.

Disclosure

None of the authors has conflict of interest.

Acknowledgements

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

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