Sense of mastery in caregivers of people living with dementia: translation and cultural adaptation of the Pearlin Mastery Scale

Senso de domínio de cuidadores de pessoas que vivem com demência: tradução e adaptação cultural da Pearlin Mastery Scale

ABSTRACT

The sense of mastery is conceptualized as a positive aspect of care targeted at people living with dementia, a coping mechanism to reduce burden, and may represent a protective factor for caregivers’ mental and physical health.

Objective:

To translate and culturally adapt the Pearlin Mastery Scale for Brazil.

Methods:

A methodological study was conducted at the Federal University of São Carlos in which the initial translation stages were followed; synthesis; back-translation; review by the committee of judges by analyzing the Content Validity Index (CVI); and test of the pre-final version.

Results:

Two specialists translated the scale into Brazilian Portuguese and defined a consensus version with the researchers. Subsequently, another two specialists back-translated the consensus version, which was reviewed by three judges who are PhDs in the area, considering all scale items as very equivalent (CVI=1.0), and maintaining them in the pre-final version of the instrument. This was tested in a first group of caregivers for them to point out adjustments. The suggestions were accepted by modifying three items and, afterward, the scale was tested in a second group, which did not present difficulties answering the instrument.

Conclusion:

The Pearlin Mastery Scale was translated and culturally adapted for Brazil, showing equivalence. However, future psychometric analyses of the instrument are required to make it available for use in this population.

Keywords:
Dementia; Caregivers; Methods; Psychological Adaptation

RESUMO

O senso de domínio é conceituado como um aspecto positivo do cuidado voltado às pessoas que vivem com demência, um mecanismo de enfrentamento para reduzir a sobrecarga e que pode representar um fator protetor para a saúde mental e física do cuidador.

Objetivo:

Traduzir e adaptar culturalmente a Pearlin Mastery Scale para o Brasil.

Métodos:

Estudo metodológico conduzido na Universidade Federal de São Carlos, em que foram seguidas as etapas de tradução inicial; síntese; retrotradução; revisão pelo comitê de juízes pela análise do Índice de Validade de Conteúdo (IVC); e teste da versão pré-final.

Resultados:

Dois especialistas traduziram a escala para o português brasileiro e definiram uma versão consensual com os pesquisadores. Posteriormente, outros dois especialistas retrotraduziram a versão consensual, que foi revisada por três juízes doutores na área, considerando todos os itens da escala como muito equivalentes (IVC=1,0), mantendo-os na versão pré-final do instrumento. Esta foi testada em um primeiro grupo de cuidadores, a fim de se apontarem adequações. As sugestões foram acatadas mediante a modificação de três itens e, depois, a escala foi testada em um segundo grupo, o qual não apresentou dificuldades em responder ao instrumento.

Conclusão:

A Pearlin Mastery Scale foi traduzida e adaptada culturalmente para o Brasil, demonstrando equivalência. Entretanto, análises psicométricas futuras do instrumento são necessárias para disponibilizá-lo para uso entre essa população.

Palavras-chave:
Demência; Cuidadores; Métodos; Adaptação Psicológica

INTRODUCTION

Globally, the population is aging rapidly, affecting all levels of society¹. With advancing age, people become susceptible to developing chronic conditions, as well as functional, and cognitive and sensory losses². In this context, dementia represents one of the main causes of disability during aging³. Data from the World Health Organization (WHO) indicate that, in 2019, 55.2 million people lived with dementia worldwide and it is estimated that the condition will affect 78 million people in 2030 and nearly 139 million by 2050⁴.

In addition to the enormous impact on the affected individuals, economy, and society, dementia exerts a significant impact on family members, who represent the main source of the care provided to these people, especially in low- and middle-income countries⁵. Having the knowledge about dementia and mastery over its care is essential so that caregivers do not pose risks to the people cared for, increasing their quality of life and helping themselves to face the disease⁶.

In this way, the sense of mastery is conceptualized as a positive aspect of care, a coping mechanism to reduce burden, a conviction that an individual is capable of controlling the important circumstances that affect her/his life, and can represent a protective factor for mental and physical health and well-being, especially when facing persistent life stresses such as economic and occupational difficulties⁷-⁹. In view of this, caregivers’ mastery of care is oftentimes neglected, and the absence of training and information about dementia and its consequences are considered the main difficulties faced by them¹⁰.

Caregivers of people living with dementia can develop a sense of mastery and purpose of the care tasks and activities, reflecting gains in positive aspects during this experience⁹. In general, they report that the activity can improve the perception of personal growth from positive experiences (gains), meanings (spiritual attributions), rewards, and benefits¹¹. Thus, positive aspects such as the caregivers’ sense of mastery can be important protective factors that can mediate the effects of burden¹²,¹³.

In this context, the Pearlin Mastery Scale (PMS) was originally developed by Pearlin and Schooler in the 1970s for a study on stress and coping with a sample comprised of 2,300 men and women of working age (18–65 years old) who lived in the urban area of Chicago, as the population should be weighted in favor of those who were actively involved in different professional categories⁷. Since then, the scale has been used to study the role of the sense of mastery in managing chronic metabolic, rheumatic, and cardiovascular diseases¹⁴. The instrument measures an individual’s mastery level through seven items (five negatively worded and two positively worded), scored on a Likert scale with 1 to 4 options for each answer (reverse coding for both positively worded items), with a total score varying between 7 and 28 points, where higher scores indicate greater mastery levels. The instrument showed acceptable reliability to be used among the family caregivers of dependent older adults (ω=0.80)¹³.

Despite the research studies carried out on the use of PMS in the United States, Europe, and Asia, the sense of mastery is still little known in Brazil and there is no version of the instrument for the Brazilian context¹³,¹⁴. In view of the above, the availability of the translated and culturally adapted scale for use throughout the country is important and necessary to evaluate the effectiveness of interventions as well as training programs focusing on caregivers of people living with dementia. Therefore, the study aimed at translating and culturally adapting the PMS with informal caregivers of people living with dementia in the Brazilian context.

METHODS

This is a methodological study proposing the translation and cultural adaptation of the instrument called Pearlin Mastery Scale for the Brazilian context. For the adaptation process, the stages recommended by Guillemin, Bombardier and Beaton¹⁵ were sequentially followed, namely: first translation (through independent translators); summary of the translations (establishment of a single version of the scale through consensus determined by those involved — translators and researchers); back-translation (translation of the consensual version of the scale in the Brazilian version into American English by two lay translators as to the objectives of the study, who are native speakers of the second language); determination through the commissioning of three judges fluent in the native language of the scale, PhDs in the health area and with experience with informal caregivers of people living with dementia and on the theme of cultural adaptation of instruments; and testing of the pre-final version.

Following the stages recommended by the theoretical framework adopted, PMS was translated from American English to Brazilian Portuguese by two specialized bilingual translators, who thereafter formulated a consensus version. The reliability of this version was assessed through back-translation into American English, which was carried out independently and blindly by another competent translator, whose native language was American English and had experience in translating texts for the health area. The translator was not familiar with the original version of the scale used or the objectives of the current study. Thus, the PMS consensus version in Brazilian Portuguese and the back-translated version were measured by a committee of judges comprised of three specialists. The criteria for committee composition were based on being trained in the health area, fluent in the English language, an expert on the topic of caregivers, as well as having methodological knowledge of the research used, in other words, having practice in translations and adaptations of instruments.

After agreeing to participate in the study by signing the Free and Informed Consent Form (FICF), the judges had access to the documents for evaluation and an explanatory letter regarding the study objectives. In addition, they received details about the scale, taking into account cultural equivalence between the original and final versions, following the rationale proposed by Guillemin, Bombardier and Beaton¹⁵, which establishes the following aspects of equivalence: semantic, idiomatic, experimental or cultural, and conceptual.

To analyze the data from the experts’ committee, a descriptive analysis was performed, besides content validity using the Content Validity Index (CVI), which indicates the proportion of experts who agree on certain aspects of the instrument and its items, allowing for an individual analysis of the items at a first moment and, subsequently, of the instrument as a whole¹⁶. The judges’ assessment instrument consisted of a Likert-type answer scale between 1 and 4 points, where the specialists could consider for each item of the scale: 1=Not equivalent; 2=Little equivalent; 3=Equivalent; and 4=Very equivalent. In order to interpret the CVI, the criterion proposed in the literature was used, which recommends a value above 0.78¹⁷. CVI scores were calculated by summing the agreement of the items evaluated between 3 and 4 by the specialists, divided by the total number of answers.

The suggestions made by the experts’ committee, pertinent to language adaptation and better understanding by the responding individuals, were expressed through an evaluation table. To test the pre-final version, the instrument was applied to some of the research participants through online and individual interviews, aiming to detect errors and confirm understanding of all the questions. In this study, it was decided to use the test technique, applying the instrument to two groups of informal caregivers of people living with dementia to verify the clarity of the content and difficulty understanding the scale items, as well as to identify possible errors. The objective of dividing the participants into two groups was to gather notes from the first group and improve the writing of items for better understanding by the second group. Before fully answering the questionnaire, the participants should agree to participate in the study by signing the FICF.

The study complies with Resolution 510/16 of the National Health Council (Conselho Nacional de Saúde, CNS), which guarantees rights to the research participants, the scientific community and the State. Therefore, it was assessed and approved by the Research Ethics Committee of the Federal University of São Carlos (Opinion No. 5.332.333; CAAE n^o 88157118.0.1001.5504). All ethical procedures for research in human beings were respected.

RESULTS

Initially, PMS was independently translated from American English to Brazilian Portuguese by two qualified bilingual translators, who defined a consensus PMS Brazilian Portuguese version, assessing existing differences in the translations and considering the original version of the scale. The reliability of the consensus version was evaluated through back-translation into English by another qualified translator and presented similarities with the original instrument. Subsequently, the consensus and back-translated versions were evaluated by the committee of judges, who signed a unanimous agreement, without divergence, on 88.8% of the items in the consensus version. For the last item, changes were suggested to ease understanding, as demonstrated in Supplementary Material, Chart 1.

After the evaluation by the committee of judges, it was verified that all the items that made up the PMS presented CVI=1.0, being considered equivalent and maintained in the pre-final version of the instrument, as shown in Supplementary Material, Chart 2.

For the pre-test of the version approved by the judges, PMS was applied individually in the online interview format to a sample consisting of two groups of caregivers of people living with dementia to verify clarity and understanding of the items. Seven caregivers participated in the pre-test: four in the first group and three in the second. Of the sample, 57.1% were female, with a mean age of 55.2 years, and living in different regions of the country. The caregivers’ characteristics can be seen in Supplementary Material, Chart 3.

Among the participants in the first group, 75% asserted that the questions were clear enough, rating the scale as good. However, one participant pointed out occasional comprehension difficulties in questions 1, 6, and 7, which led the researchers to exclude the term “realmente” (“really”) from question 1 and include the expression “a forma de lidar com” (“how to deal with”) at the beginning of question 6, for greater understanding and clarity of the items. In addition, there was a word order change in question 7 to improve the meaning of the sentence. Supplementary Material, Chart 4, shows the changes implemented by the researchers in each item according to the suggestions.

After making the adjustments pointed out by the first group of caregivers, the last version of the scale was applied to the participants of the second group, who did not present difficulties answering the items. The final PMS version is presented in Supplementary Material, Chart 5.

DISCUSSION

The PMS has been translated and culturally adapted for the Brazilian context (now called Escala Pearlin de Domínio), bridging the existing gap in the assessment of the sense of mastery in caregivers of people living with dementia in Brazil. For adaptation processes, it is recommended in the literature that some steps be adopted, thus contributing significantly to the quality of the results, which sees the Portuguese version of the instrument faithful to the linguistic content of the questionnaire in the original language (English). Through this confirmation, suitability is achieved for unanimous content validation by the experts’ committee, ensuring that the scale is clear and understandable in the new culture.

With the PMS in Portuguese ready, a pre-test was carried out to be applied to a sample of caregivers of people living with dementia and to verify whether they would encounter any difficulties related to understanding and clarity of the instrument items. In the current study, the suggestions made by the first group of participants were accepted and the second group did not report difficulties or suggest changes, thus obtaining the final version of the scale.

Some tools are developed in a specific language and then go through a translation process into a desired language. The panel of experts is extremely important when it comes to validating scales and questionnaires regarding cultural and linguistic adaptation. This is a rigorous procedure due to the particularities of the countries involved. In this sense, if the methodological quality of instrument selection is poor, this may be considered a bias in the study’s conclusions¹⁸. The analysis of the psychometric properties of the PMS Spanish version, conducted with two groups of patients diagnosed with cancer or type II diabetes, verified that the instrument may not consistently measure mastery between the groups¹⁴. This is possibly due to differences in semantic understanding of items by the respondents or to differences in the meaning of the construct itself, emphasizing the importance of adequate validation by a committee of judges during the methodological process of translation and cultural adaptation¹⁴.

In Singapore, the PMS translation and psychometric analysis study was conducted with family caregivers of dependent older adults. The data of the seven-item scale showed acceptable reliability, although they reflected poor fit for both positively worded items. Without these two items, the answers in the five-item version showed acceptable model fit and had superior reliability and high correlation with those in the seven-item version¹³. This finding corroborates the study that analyzed the PMS Japanese version using the seven- and five-item versions of the instrument, which evidenced superior reliability for the reduced version of the scale¹⁹.

The Chinese version of the scale was translated and culturally adapted with a sample consisting of three groups of patients diagnosed with major depression, schizophrenia, and HIV/AIDS, respectively. In addition to content validity, the scale presented acceptable psychometric qualities in terms of reliability, classification performance, and characteristics of the items when applied to different groups⁸.

In general, there is a large body of literature examining the impact of interventions on care variables that focus on adverse results such as burden, depression, and anxiety²⁰,²¹. Meanwhile, positive aspects of caring for people living with dementia, such as a sense of mastery, should be investigated, as they provide a different perspective on how the interventions have made a difference in the caregivers’ lives²². However, the sense of mastery is still little known in Brazil and, although many research studies on validation and use of the PMS have been conducted in other countries⁸,¹⁴,¹⁹, no Brazilian version has yet been developed. National and international studies revealed the need to provide the Brazilian population with a sense of mastery screening instrument, given the scarcity of studies related to this variable and the need to recognize coping strategies that may assist caregivers of people living with dementia, encouraging the development of policies and resources that meet the search for better care quality²²,²³.

As a limitation, we can highlight the scarcity of studies carried out in Brazil on this theme, making it difficult to deepen the discussion. As a perspective for future studies, performing psychometric analyses of the scale, taking into account the necessary adjustments for both positively formulated items, will make it possible to provide a reliable instrument for use in intervention research studies.

The PMS (now called Escala Pearlin de Domínio) was translated and culturally adapted for informal caregivers of people living with dementia in Brazil. This result enables and enhances comparisons of data on the variable with global findings. Additionally, it allows health professionals who meet the care demand for people living with dementia in different health contexts to have a quick screening scale as a tool on a positive aspect of care, such as the sense of mastery, allowing them to improve such coping strategy.

REFERENCES

• ^1.
  United Nations. Department of Economic and Social Affairs, World population prospects 2019. New York: United Nations; 2019 [cited on Jan 20, 2023]. Available from: https://population.un.org/wpp2019/Publications/Files/WPP2019_Highlights.pdf
  » https://population.un.org/wpp2019/Publications/Files/WPP2019_Highlights.pdf
• ^2.
  Costa GD, Spineli VMCD, Oliveira MAC. Educação profissional sobre demências na atenção primária à saúde: revisão integrativa. Rev Bras Enferm. 2019;72(4):1144-52. https://doi.org/10.1590/0034-7167-2018-0652
  » https://doi.org/10.1590/0034-7167-2018-0652
• ^3.
  Lisko I, Kulmala J, Annetorp M, Ngandu T, Mangialasch F, Kivipelto M. How can dementia and disability be prevented in older adults: where are we today and where are we going? J Intern Med. 2021;289(6):807-30. https://doi.org/10.1111/joim.13227
  » https://doi.org/10.1111/joim.13227
• ^4.
  World Health Organization. Global status report on the public health response to dementia. Geneva: WHO; 2021 [cited on Jan 20, 2023]. Available from: https://www.who.int/publications/i/item/9789240033245
  » https://www.who.int/publications/i/item/9789240033245
• ^5.
  Arruda MS, Macedo MNGF, Ottaviani AC, Nunes DP, Cardoso JFZ, Santos KC, et al. Correlação da funcionalidade familiar e sobrecarga de cuidadores informais de idosos hospitalizados. Rev Gaúcha Enferm. 2022;43:e20210081. https://doi.org/10.1590/1983-1447.2022.20210081.pt
  » https://doi.org/10.1590/1983-1447.2022.20210081.pt
• ^6.
  Dai Y, Zhao J, Li S, Zhao C, Gao Y, Johnson CE. Caregivers’ dementia knowledge and care approach in residential aged care facilities in China. Am J Alzheimers Dis Other Demen. 2020;35:1533317520937096. https://doi.org/10.1177/1533317520937096
  » https://doi.org/10.1177/1533317520937096
• ^7.
  Pearlin LI, Schooler C. The structure of coping. J Health Soc Behav. 1978;19(1):2-21. https://doi.org/10.2307/2136319
  » https://doi.org/10.2307/2136319
• ^8.
  Chen YL, Hsiung PC, Chung L, Chean SC, Pan AW. Psychometric properties of the Mastery Scale-Chinese version: Applying classical test theory and Rasch analysis. Scand J Occup Ther. 2013;20(6):404-11. https://doi.org/10.3109/11038128.2013.838999
  » https://doi.org/10.3109/11038128.2013.838999
• ^9.
  Moreira MTC, Gomes CS, Pinto JM. Influence of personal mastery on mobility disability among older adults: A systematic review. Arch Gerontol Geriatr. 2022;102:e104750. https://doi.org/10.1016/j.archger.2022.104750
  » https://doi.org/10.1016/j.archger.2022.104750
• ^10.
  Alves LCS, Monteiro DQ, Bento SR, Hayashi VD, Pelegrini LNC, Vale FAC. Burnout syndrome in informal caregivers of older adults with dementia: a systematic review. Dement Neuropsychol. 2019;13(4):415-21. https://doi.org/10.1590/1980-57642018dn13-040008
  » https://doi.org/10.1590/1980-57642018dn13-040008
• ^11.
  Prakobchai S. Relationship between burden and positive aspects of caregiving among caregivers of older adults: a meta-analysis. Saint Louis [dissertation]. Saint Louis: Faculty of Saint Louis University; 2021.
• ^12.
  Pearlin LI. The life cource and the stress process: some conceptual comparisons. J Gerontol B Psychol Sci Soc Sci. 2010;65B(2):207-15. https://doi.org/10.1093/geronb/gbp106
  » https://doi.org/10.1093/geronb/gbp106
• ^13.
  Lim ZX, Chua WL, Lim WS, Lim AQ, Chua KC, Chan EY. Psychometrics of the pearlin mastery scale among family caregivers of older adults who require assistance in activities of daily living. Int J Environ Res Public Health. 2022;19(8):4639. https://doi.org/10.3390/ijerph19084639
  » https://doi.org/10.3390/ijerph19084639
• ^14.
  Gordon JR, Malcarne VL, Roesch SC, Roetzheim RG, Wells KJ. Structural validity and measurement invariance of the pearlin mastery scale in spanish-speaking primary care patients. Eval Health Prof. 2018;41(3):393-9. https://doi.org/10.1177/0163278718774942
  » https://doi.org/10.1177/0163278718774942
• ^15.
  Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol. 1993;46(12):1417-32. https://doi.org/10.1016/0895-4356(93)90142-n
  » https://doi.org/10.1016/0895-4356(93)90142-n
• ^16.
  Alexandre NMC, Coluci MZO. Validade de conteúdo nos processos de construção e adaptação de instrumentos de medida. Ciênc Saúde Colet. 2011;16(7):3061-8. https://doi.org/10.1590/S1413-81232011000800006
  » https://doi.org/10.1590/S1413-81232011000800006
• ^17.
  Lynn MR. Determination and quantification of content validity. Nurs Res. 1986;35(6):382-5. PMID: 3640358.
• ^18.
  Lanzotti RB, Damasceno VAM, Orlandi FS. Tradução, adaptação cultural e validação do Frail Non-Disabled Questionnaire para o contexto brasileiro. Rev Bras Geriatr Gerontol. 2021;24(3):e200321. https://doi.org/10.1590/1981-22562021024.200321
  » https://doi.org/10.1590/1981-22562021024.200321
• ^19.
  Togari T, Yonekura Y. A Japanese version of the Pearlin and Schooler’s Sense of Mastery Scale. Springerplus. 2015;4:399. https://doi.org/10.1186/s40064-015-1186-1
  » https://doi.org/10.1186/s40064-015-1186-1
• ^20.
  Lee M, Ryoo JH, Crowder J, Byon HD, Wiiliams IC. A systematic review and meta-analysis on effective interventions for health-related quality of life among caregivers of people with dementia. J Adv Nurs. 2020;76(2):475-89. https://doi.org/10.1111/jan.14262
  » https://doi.org/10.1111/jan.14262
• ^21.
  Wiegelmann H, Speller S, Verhaert LM, Schirra-Weirich L, Wolf-Ostermann K. Psychosocial interventions to support the mental health of informal caregivers of persons living with dementia – a systematic literature review. BMC Geriatr. 2021;21(1):94. https://doi.org/10.1186/s12877-021-02020-4
  » https://doi.org/10.1186/s12877-021-02020-4
• ^22.
  Cheng ST, Zhang F. A comprehensive meta-review of systematic reviews and meta-analyses on nonpharmacological interventions for informal dementia caregivers. BMC Geriatr. 2020;20(1):137. https://doi.org/10.1186/s12877-020-01547-2
  » https://doi.org/10.1186/s12877-020-01547-2
• ^23.
  Fauziana R, Sambasivam R, Vaingankar JA, Abdin E, Ong HL, Tan ME, et al. Positive caregiving characteristics as a mediator of caregiving burden and satisfaction with life in caregivers of older adults. J Geriatr Psychiatry Neurol. 2018;31(6):329-35. http://doi.org/10.1177/0891988718802111
  » https://doi.org/10.1177/0891988718802111

• Funding: Ministry of Health (TED 098/2021), Coordination for the Improvement of Higher Education Personnel – CAPES (process number 88887.604622/2021-00), National Council for Scientific and Technological Development – CNPq (process number 307417/2021-2).

Publication Dates

• Publication in this collection
  24 May 2024
• Date of issue
  2024

History

• Received
  15 Jan 2024
• Accepted
  26 Jan 2024