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Introduction

Since the adoption of the Universal Declaration of Human Rights by the UN General Assembly in 1948, all nations have made efforts to investigate and improve the actual conditions of human rights by using various types of human rights indexes. Also, basic principles for the human rights of persons with mental disorders were established based on the Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care (hereinafter, “MI”) [1] determined by the UN General Assembly. According to the MI principles, all persons with a mental illness should be treated with humanity and respect for the inherent dignity of the person, and there should be no discrimination on the grounds of mental illness; the treatment of every patient should be performed in an environment wherein personal autonomy is guaranteed.

Domestic standards for persons with mental illness were established based on the Mental Health Act implemented in 1996, through which unauthorized psychiatric institutions and facilities became institutionalized and admission and discharge procedures were stipulated. After that, various policies and systems relating to mental health were introduced and the related infrastructure was developed. Despite that, there are frequent violations of the human rights of persons of mental illness in South Korea [2]. According to a survey conducted by the NHRCK (2003) [3], the types of human rights violations occurring at mental health promotion facilities can be classified into six categories: “hospital structure and facilities,” “admission and discharge processes,” “treatment environment,” “patient control,” “complication,” and “social network disconnection.”

If we examine the current state of human rights of persons with mental illness, the protection of human rights of psychiatric patients still remains in a dire condition. Among 10,245 petitions filed against facilities for caring for many persons from 2001 to 2013, 9,861 cases (96.4%) were submitted at mental health promotion facilities. The largest number of petitions were filed against these mental health promotion facilities, and their number is on a steady increase each year [4].

According to the World Health Organization (WHO), the percentage of involuntary admissions in South Korea is estimated at 74%, which is relatively higher than other high income countries. In addition, the percentage of persons with mental illness who were hospitalized for a long period of more than six months was estimated to exceed 50%. If they are hospitalized for a longer period of time, they are more likely to experience human rights violations [5]. Apart from that, major issues rerelating to infringement of human rights of persons with mental illness include “seclusion and restraint,” “vocational treatment,” and “freedom of communication.” Also, 45% of the psychiatric patients with hospital admission experiences said they experienced seclusion and restraint, and among them, 34.7% said they experienced various kinds of human rights violations including excessively frequent seclusion and restraint, the related physical injuries, or seclusion and restraints without explanation about the reason by the hospital staff [6] at psychiatric hospitals. According to the occupational treatment guidelines by the Ministry of Health and Welfare, occupational treatment and vocational rehabilitation should be offered as part of the psychiatric treatment prescribed by a responsible doctor (or treatment staff) under informed consent of patients or their legal guardians, if possible. Despite that, violations of the guidelines have been continuously reported [4]. Additionally, in accordance with Article 74 of the Mental Health and Welfare Act, the hospitalized patients’ freedom of communication and visits should not be limited except for treatment purposes. However, the survey by the National Human Rights Commission reported that 17.4% of patients admitted to mental health care facilities who did not possess mobile phones did not have means of keeping in contact with their families or friends, and that 9.7% of all respondents did not experience visits by their friends or families [7].

Dismal human rights conditions of persons with mental illness puts South Korea in need of in-depth discussions on issues relating to the human rights of persons with mental illness. Against this backdrop, “Act on the Improvement of Mental Health and the Support for Welfare Services for Mental Patients” (hereinafter, “Mental Health and Welfare Act”) [8] was completely revised and implemented in 2017. The revised law reduced the scope of mental disorders subject to involuntary admission and strengthened the requirements and procedures for admission by legal guardians by adding the clause that requires diagnosis by two psychiatric specialists and review by the Psychiatric Hospital Admission Review Committee.

As such, active studies must be conducted regarding the practice of human rights of persons with mental illness actively in accordance with the newly-revised Mental Health and Welfare Act. However, there are not many standardized indexes for comparison and evaluation of the current condition of human rights practices, and there are few related studies. In overseas countries, human rights organizations including the UN and WHO developed various kinds of evaluation tools for human rights and applied them to Europe and other countries. At home, the National Human Rights Commission of Korea has led efforts to develop human rights indicators for evaluation of human rights situations in child welfare institutions [9] police stations [10], universities [11], etc. However, there haven’t been enough efforts to develop human rights indicators for mentally-ill patients. If we look at studies on the development of domestic human rights indexes, there was a study on the development of human rights indices for mentally-ill patients conducted in 2014 by the National Naju Hospital. However, due to limitation pursuant to validity, these indicators cannot be used. Thus, the current situation has raised the need to review the indicators of human rights for mentally-ill patients and to develop human rights indexes in reflection of human rights trends of the WHO and advanced countries to to improve their on-site use.

The purpose of this study was to develop empirical indicators which could measure the human rights of mentally-ill patients admitted to mental health institutions and to reflect changes in the concept and classification system of human rights over time.

Materials and Methods

Study subjects

This study was conducted on patients admitted to mental health institutions in the Gwangju and Jeonnam areas. The appropriate number of subjects for the exploratory factor analysis and confirmatory factor analysis was estimated at 150-200 participants and more than 150 participants, respectively [12]. In consideration of a dropout rate of 10-15%, a total of 395 people were recruited. In the case of data collection, after the recruitment of all study subjects, they were divided into subjects for exploratory factor analysis and those for confirmatory factor analysis through random sampling using the SPSS.

The 200 subjects classified for exploratory factor analysis with the exclusion of insincere respondents, and among them, 126 (63.0%) of the respondents were male, wherein the remaining 74 respondents (37.0%) were female. If we classify them by age, three respondents (1.5%) were age 19 or younger; 14 respondents (7.0%) were age 20-29; 19 respondents (9.5%) were age 30-39; 55 respondents (27.5%) were age 40-49, 66 respondents (33.0%) were age 50-59; 38 respondents (19.0%) were age 60 or older; five respondents (2.5%) did not respond to the question. In the case of education level, six respondents (3.0%) had no schooling; 26 respondents (13.0%) had primary school diplomas; 35 respondents (17.5%) had middle school diplomas; 89 respondents (44.5%) had high school diplomas; 43 respondents (21.5%) had BA or higher academic degrees; one respondent (0.5%) did not respond to the question.

Study procedure

This study was conducted in accordance with the following procedure. In the first stage, we conducted literature review relative to domestic and overseas human rights indicators and laws and petition cases relative to protection of human rights of people with mental disorders, and also conducted task force (TF) meetings comprised of human rights and mental health experts and research staff members. After that, we conducted in-depth interviews (IDI) with a semi-structured questionnaire on people with mental disorders who have ever been, or are currently hospitalized, in the National Naju Hospital. Their parents were included in the questionnaire. The interview was conducted June-July, 2018, with participation by five people with mental disorders and three guardians of mentally-ill people.

Through the literature review, TF meetings, and the IDI, we developed a total of 145 preliminary questions classified into two categories, divided into seven subscales. The two categories consisted of “Experience of human rights (including human rights violations)” and “Human rights-oriented facility-environment.” The questions in the “Human rights experience” category ask the patients about their experiences regarding protection and violation of human rights during their stay in the psychiatric ward, and the category was comprised of six subscales: “Dignity-freedom,” “Physical health,” “Personal information protection and right to know,” “Discrimination,” “Self-supporting community,” and “Relief process.” The questions in the “Physical environment” category checked physical and procedural elements to guarantee the minimal protection of human rights of mentally-ill people, and the category was comprised of one subscale: “Facility environment.”

In the second stage, we conducted the first round of the Delphi survey to verify the content validity ratio (CVR) of the preliminary questions. A total of 16 people (seven human rights experts, eight mental health experts, and one statistics expert) participated in the evaluation. The experts who participated in the Delphi survey evaluated the appropriateness of responses to the concerned subscales with the 7-point Likert scale (1=extremely inappropriate, 7=extremely appropriate).

There are several kinds of criteria for exclusion of questions, and the most commonly employed method of excluding questions with lower scores than the reference average or median value, was employed for the present study. The exclusion of questions was performed based on the median value to remove those with four points or less (based on the median value of five points (appropriate). After completing the first round of removal of questions based on statistical criteria, the research staff, as well as TF-affiliated human rights experts, reviewed the experts’ opinions about the fist-round Delphi survey, and the questions of overlapped or similar to each other were integrated to each other (through works of adding and moving).

When preliminary questions were reconstructed based on the results of the first round of the Delphi survey, the reconstructed set of 77 questions consisted of 64 items in the “Experience of human rights” category consisting of six subscales and 13 items in the “Physical environment” category consisting of one subscale.

In the third stage, we conducted the second round of the Delphi survey on the reconstructed preliminary questions. The second round of the Delphi survey comprised 16 experts who took part in the first round of the Delphi survey. Based on the results of the second round of the Delphi survey, 13 preliminary questions were removed.

In the fourth stage, for verification of statistical validity and reliability of the reconstructed preliminary questions, questionnaires were distributed to 395 patients hospitalized in mental health institutions in the Gwangju and Jeonnam areas, and after removal of insincere respondents, a total of 377 copies were used for data analysis. The survey was conducted in a self-report form, and face-to face interviews were provided for some study subjects in to facilitate them better understanding of the questions. Through the exploratory factor analysis and confirmatory factor analysis, we examined the construct of the human rights index for people with mental disorders hospitalized in mental health institutions to select the final questions.

The study subjects signed the written consent after being informed of the study, and the survey was conducted after obtaining approval from by the Institutional Review Board of the National Naju Hospital (Approval No.: NNH-HR-2018-10).

Data analysis

The data collected in each stage were analyzed as follow. In the Delphi surveys, descriptive statistical values and CVRs corresponding to the expert panel’s consensus degree were measured. Those data collected in the first round survey were used for exploratory factor analysis for selecting the final questions and their construct to identify the Korean version human rights index for people with mental disorders. The exploratory factor analysis was performed using a rotation method with the maximum likelihood estimation (MLE). Those data collected in the second round survey were conducted for confirmatory factor analysis for verification of the construct validity. The RMSEA, TLI and CFI were used to estimate the goodness of fit of factors. For reliability analysis of the finally selected questions, Cronbach’s α coefficients were used as an index to measure the internal consistency of the questionnaire. The aforementioned data analysis was conducted using Mplus 7 for the factor analysis and also using SPSS 21.0 for the descriptive statistics and reliability analysis.

Results

Exploratory factor analysis

Sixty-four questions reconstructed through the first round of the Delphi survey were used for exploratory factor analysis, and survey participants were asked to rate their experiences on categorical scales of dichotomous questions that had ‘Yes’ or ‘No’ answers. The maximum likelihood estimation was used for the exploratory factor analysis to verify the construct validity. Based on the results of the exploratory factor analysis, questions with a factor load of 0.60 or less were excluded. However, even if the question inclusion & exclusion criteria were satisfied, those questions which were duplicated or ambiguous, or had low universality were excluded. Additionally, even if the factor load of a question failed to satisfy the question exclusion criteria, when it was considered an essential question that should be included in the concerned subscale, it was included instead of excluded. The results of the exploratory factor analysis are shown in Table 1.

Confirmatory factor analysis

Confirmatory factor analysis was conducted for the verification of a more appropriate model comparison by comparing the goodness of fit of models obtained through the exploratory factor analysis. Among goodness-of-fit indices used to evaluate the conformity with the model’s data, Turker Lewis index (TLI), Comparative Fit Index (CFI), and Root Mean Square Error of Approximation (RMSEA) were measured. The results are shown in Table 2.

Finally, 40 questions in eight factors were selected as the indicators of human rights of psychiatric inpatients. Factors 1-6 belonged to the “Experience of human rights” category consisting of a total of 31 questions. Factor 1 was the “Dignity-freedom” subscale consisting of nine questions including “I was compelled to convert to other religions or to participate in religious events by the hospital staff.” Factor 2 was the “Right to health” subscale consisting of a total of five questions including “I requested for changing dirty clothes with clean ones, but they did not do it without any explanation.” Factor 3 was the “Personal information protection and right to know” subscale consisting of a total of five questions including “My locker was inspected by the hospital staff without giving any particular reason.” Factor 4 was the “Discrimination” subscale consisting of a total of five questions including “I had the experience of being discriminated by the hospital staff because of my native region and native country.” Factor 5 was the “Self-supporting community” subscale consisting of a total of three questions including “I had the experience of being prohibited from using leisure and cultural facilities (computers, library, etc.) (Table S2). Factor 6 was the “Relief process” subscale consisting of a total of four questions including “When it was decided that I need continued hospitalization, I was not given any explanation.” Factors 7 and 8 belonged to the “Human rights-oriented facility-treatment (Treatment environment)” category consisting of a total of 9 questions (Table S3). Factor 7 was the “Human right-oriented facility and process recognition” subscale consisting of a total of three questions including “I know the procedure of filing a complaint (a community meeting, an opinion box).” Factor 8 was the “Physical environment” subscale consisting of a total of six questions including “The hospital provides comfortable cooling and heating.”

Reliability

To verify the reliability of the finally selected human rights index for people with mental disorders, Cronbach’s α coefficient was used to measure the internal consistency of questions. The overall reliability coefficient of the human rights index for people with mental disorders showed a very high level of 0.896. The reliability coefficient of “Experience of human rights” was estimated at 0.909, while the reliability coefficient of “Human rights-oriented facility-environment” was estimated at 0.774. If we break it by subscales, the reliability coefficient of “Dignity-freedom” was estimated at 0.781: “Right to health” (0.610), “Personal information protection and right to know” (0.664), “Discrimination” (0.782), “Self-supporting community” (0.593), “Relief process” (0.593), “Human rights facility and procedure recognition” (0.686), “Physical environment” (0.692).

Estimation of index

Index estimation principles for the Korean version human rights index for people with mental disorders

To improve the intuition of the human rights index, the measured values by each subscale of the human rights index were converted to a 100-point scale. As the numbers of subscales and questions comprising each category were different, the comparison of scores between subscales is meaningless. After measuring individual human rights experiences of people with mental disorders with the survey questionnaire, the human rights index can be estimated, and if the estimated index of psychiatric inpatients in a particular mental health institution is summed up to calculate the average, this can be used as an human rights index of the concerned institution.

Estimation equations for the Korean version human rights index for people with mental disorders [13]

• Composite index of human rights for people with mental disorders (A)

• “Experience of human rights” index (A1)

• “Human rights-oriented facility-environment” index (A2)

Discussion

This study was conducted to develop empirical indicators to measure the human rights of people with mental disorders hospitalized in mental health institutions. Literature review and the first and second Delphi surveys were performed to develop preliminary questions, and their reliability and validity were verified by targeting a total of 377 people with mental disorders. According to the results, the human rights indicators developed by this study were verified as a stable tool to measure the human rights of people with mental disorders.

In South Korea, there have been a small number of studies on human rights of people with mental disorders, including those on mentally-ill patients’ human rights sensitivity and human rights experiences [14], human rights violations at mental health institutions [4], the hospital staff’s human rights sensitivity [15]. However, these studies have limitations as they used different indicators when they measured the current state of human rights of people with mental disorders.

The concept of human rights may change depending on periods and social situations, and represent attributes defined within them. Thus, this has raised the need for developing an index to measure human rights of people with mental disorders with verified reliability and validity in the reflection of the revised Mental Health and Welfare Act. A human rights index is the one which addresses the limited topic of human rights in the context of social environment and which also serves as a social index to indicate the overall quality of life of the members of a society in a comprehensible and intensive way [16]. Thus, this study intended to develop a human rights index in the form of a social index.

This study was conducted in accordance with “The UN Principles for the Persons with Mental Illness and Improvement of Mental Health Care (MI principle)” [1], which served as a cornerstone for the protection of human rights of people with mental disorders, “The WHO’s Guidelines for the Promotion of Human Rights of Persons with Mental Disorders” [17], and “The Revised Mental Health and Welfare Act” [8]. As categories and subscales for the human rights index were selected based on the results of the survey on the types of violations of human rights of people with mental disorders and major related issues, the developed human rights index could well reflect the construct concept for measurement of human rights for people with mental disorders and have representative nature. Given this, it seems that the developed human rights index has secured validity and practicality.

In this study, we included areas very close to the life of patients in the configuration of lower domains of the human rights index instead of using a method to cite the types of human rights. The expert panel who participated in the Delphi surveys consisted of the same percentage of human rights experts and mental health-related experts with practical ability and also included a survey design expert of the Korea National Statistical Office to verify errors in questions.

It is meaningful that the human rights index for people with mental disorders developed in reflection of the revised Mental Health and Welfare Act by this study was a scale that has secured stability in terms of reliability and validity. However, considering that the sampling of the preliminary survey was limited only to mental health institutions in the Gwangju and Jeonnam areas, more extensive studies must be conducted in the future. Additionally, the use of the human rights index has been an option to be decided by each institution until now, and many institutions may avoid using the human rights index due to concern that if the human rights level is to be estimated based on the index, the human rights practice level of psychiatric institutions can be compared with one another. Thus, it is important to develop a measure to make active use of the human rights index.

Conclusions

Empirical indicators were developed to measure the human rights of people with mental disorders. Through the development of preliminary questions through the Delphi surveys and the verification of reliability and validity, this study developed the human rights index for people with mental disorders, which consist of a total of 40 questions (Table S2, S3). The “Experience of human rights” category, one of the two higher domains of the human rights index, consisted of a total of 31 questions in six subscales: nine questions relating to “Dignity-freedom,” five questions relating to “Right to health,” five questions relating to “Personal information protection and right to know,” five questions relating to “Discrimination,” three questions to “Self-supporting community,” and four questions to “Relief process” (Table S2). The “Human rights-oriented facility-environment” category, the other higher domain of the human rights index, consisted of a total of nine questions in two subscales: three questions relating to “Human right-oriented facility and process recognition” and six questions relating to “Physical environment.” (Table S3) Also, the estimated composite index of human rights can be used as an indicator of human rights, and the estimated human rights index can be used to calculate the average human rights level of each psychiatric institution. It is believed that the newly-developed human rights index for people with mental disorders will offer valuable assistance in the research on human rights of people with mental disorders and contribute to investigating and improving their human rights.

Acknowledgments

Authors are grateful to patients suffering from mental disorders, their families, and members of the TF Team for the participation in the present study.