Marcelo Pio da Almeida FleckI; Zulmira Newlands BorgesII; Gustavo BolognesiI; Neusa Sica da RochaI
IDepartamento de Psiquiatria e Medicina Legal da Faculdade de Medicina da Universidade Federal do Rio Grande do Sul. Porto Alegre, RS, Brazil
IIDepartamento de Sociologia da Universidade Federal de Santa Maria. Santa Maria, RS, Brazil
OBJECTIVES: To describe the development of the spirituality, religiousness, and personal beliefs for the WHOQOL-SRBP instrument, and to report the main findings of research conducted with focus groups composed of subjects representative of the most common religious practices, patients, and healthcare professionals.
METHODS: The several stages of the development of the WHOQOL-SRBP instrument are described: literature review, focus groups, elaboration of national questions, elaboration of consensual items, pilot-study development, pilot-study application, question performance analysis, development of the definitive instrument, and field testing. The focus group stage was conducted in Porto Alegre, Southern Brazil, and included 15 groups (n=142). These included separate groups for healthcare professionals, acute, chronic, and terminal patients, religious groups (Catholics, Evangelicals, Afro-Brazilians, and Spiritualists), and atheists. Each group discussed facets suggested by a group of experts, as well as any further dimensions spontaneously raised by group participants.
RESULTS AND CONCLUSIONS: The focus group technique proved itself adequate for the collection of different opinions from the participants, allowing for the testing of the hypotheses proposed by the researchers, redirecting and/or broadening previously established concepts. In addition, it highlighted the importance of the discussion of the spiritual dimension for patients lives.
Keywords: Mental health. Religion and medicine. Spirituality. Quality of life.Focus groups. Perception.
Religiousness and spirituality have always been considered as important allies for suffering and/or ill people. However, Western medicine as a whole, and particularly psychiatry, have always dealt with the subject from two different standpoints: (1) negligence, for considering such matters as irrelevant and/or external to the scope of their investigation; and (2) opposition, by considering their patients religious experiences as evidence of a number of different psychopathologies.9,12 Eastern Medicine, on the other hand, attempts explicitly to integrate the spiritual and religious realms to the health/disease dichotomy.3
There is growing evidence of the association between religiousness and mental health. In a recent review, a positive association was found in 50% of cases, and a negative one in 25%. In this review, religiousness was considered as a protecting factor against suicide, drug and alcohol abuse, delinquent behavior, marital satisfaction, psychological suffering, and a number of functional psychoses (Gartner et al, apud Levin et al7). When studying the relationship between religiousness and the duration of hospital admission, it was found that religious depression patients remained in the hospital for shorter periods than non-religious ones1,6,8 A study of HIV patients, which used a scale for measuring both spiritual well-being and hopelessness levels, found that patients who scored higher on the spiritual well-being scale tended to be more hopeful.2
Since the World Health Assembly of 1983, the inclusion in health of a non-material or spiritual dimension has been largely discussed, and it has been proposed that the classical concept of health used by the World Health Organization be expanded to a dynamic state of complete physical, spiritual and social well-being, not merely the absence of disease (WHO/MAS/MHP/98.2).15
There are, however, a number of methodological problems in the studies of the relationship between health and religiousness. Sloan et al13 (1999) highlight that differences in genetics, and behavior, as well as in variables such as age, gender, education, ethnicity, socioeconomic level, and health conditions may represent important confounders in such studies. The same authors suggest the need for well conducted studies in order to orient evidence-based procedures in this area. A first methodological problem is how to measure religiousness. The evaluation of religiousness is done in several different ways in the various available studies. Generally, the religiousness variable is assessed in terms of affiliation (Catholic, Buddhist, and others), religious practice (practicer/non-parcticer), or cult attendance (weekly, monthly, and others). Such strategies are acknowledgedly limited for the study of such a complex variable.
There are, in the literature, no instruments designed to evaluate religiousness that are at once easily applicable, satisfactory in terms of the most generic aspects of religions that is, those present on all or most of them , and capable of incorporating realities specific to any given religion. Also, the small number of instruments available have been developed, in most cases, in a single country (generally the USA), being thus probably of little value for the study of religious practice in other cultures.
With this in mind, the World Health Organization, through its Quality of Life group, included in its generic quality of life evaluation instrument (World Health Organization Quality of Life Instrument 100 items, or WHOQOL-100 a domain called Spirituality, Religiousness, and Personal Beliefs. This four-question domain proved to be insufficient in field-tests carried out in several centers. Thus, the Quality of Life Group decided to develop a specific WHOQOL-100 module for the evaluation of these aspects from a transcultural perspective.
The goal of the present paper is to describe the development process of the Spirituality, Religiousness, and Personal Beliefs module (WHOQOL-SRPB) and to report the main findings of the research developed with focus groups composed by members of major Brazilian religious practices, patients, and healthcare professionals.
WHOQOLs Spirituality, Religiousness, and Personal Beliefs domain
Spirituality, religiousness, and personal beliefs were defined by WHOQOL-100 as follows:15
This domain/facet examines the persons beliefs, and how these affect quality of life. This might be by helping the person cope with difficulties his/her life, giving structure to experience, ascribing meaning to spiritual and personal questions, and more generally providing the person with a sense of well-being. This facet addresses people with differing religious beliefs (including Buddhists, Christians, Hindus, Muslims, etc.), as well as other people with differing beliefs that do not fit with a particular religious orientation.
For many people religion, personal beliefs and spirituality are a source of comfort, well-being, security, meaning, sense of belonging, purpose and strength. However, some people feel that religious has a negative influence on their lives. Questions are framed to allow this aspect of the facet to emerge.
The questions related to this domain were generic, and allowed subjects with different attitudes towards the issue to answer. WHOQOL-10015 included four questions:
- Do your personal beliefs give meaning to your life?
- To what extent do you feel your life to be meaningful?
- To what extent do your personal beliefs give you the strength to face difficulties?
- To what extent do your personal beliefs help you to understand difficulties in life?
The development of the WHOQOL-SRPB module
The development of this module followed the methodology used in other projects by the WHOQOL Group. This methodology has the following characteristics:
- The instrument is developed collaboratively and simultaneously in the different centers. Thus equivalence and translation issues precede the instruments application. In order to secure the presence of genuine transcultural characteristics in the instruments development, centers were selected in countries of varying levels of industrialization and healthcare service availability, including representatives from the different continents.
- It is an iterative method, insofar as the information brought in by patients and healthcare professionals are discussed by experts and incorporated to the instrument.
- The translation method is also iterative; it includes translation, retro-translation, and review by bilingual panels, so as to secure semantic and conceptual equivalence.
Literature review and the construct spirituality
The present project began with the meeting of a group of experts on quality of life and spirituality. This group included people whose backgrounds included anthropology, mental health, and theology, with specific knowledge of the worlds major religions. The goal of this meeting was to review WHOQOL-100, with special emphasis to domain 6 (spirituality religiousness personal beliefs). The discussion of spirituality included a literature review.
The Oxford dictionary defines spirit as the immaterial, intellectual or moral part of man (apud WHO15). Spirituality raises issues concerning the meaning of life and the reasons for living, not limiting itself solely to a small number of beliefs or practices. Religion is defined as belief on the existence of a supernatural ruling power, the creator and controller of the universe, who has given to man a spiritual nature which continues to exist after the death of the body. Religiousness is then the extent to which an individual believes in, follows, and practices a religion. Despite the considerable overlap existent between the concepts of spirituality and religiousness, the latter differs from the former in that it clearly suggests a system of adoration and a specific doctrine, which is shared with a group. Personal beliefs may be any beliefs or values sustained by an individual, and which form the basis of his or her lifestyle and behavior. In spite of the possible overlap with the concept of spirituality, personal beliefs are not necessarily non-material in nature, as is the case with atheism.
The definition given by Ross11 (1995) of the spiritual dimension was considered as extremely useful. For this author, spirituality depends on three components: the need for significance, meaning, and fulfillment in life; the need for hope/willingness to live; and the need for having faith in oneself, in others, or in God. The need for significance is considered as an essential condition for life, and when one feels unable to find significance, he will suffer due to feelings of emptiness and despair.
The construct spirituality would thus be essential to health-related evaluation, for it would offer a framework of significance for dealing with the condition of illness.15
Focus groups based on the definitions
Focus group discussions are conducted within collaborating centers in their own national language, and are considered as essential to the acquisition of transcultural information.
The goals of this stage are: to generate items for inclusion in the WHOQOL-SRBP questionnaire; to review and modify definitions of facets proposed by the expert panel; to generate any additional facets considered as important to a persons quality of life and spirituality, religiousness, and beliefs.
It was defined that, upon constituting the focus groups, priority would be given to: healthcare professionals (regardless of their personal beliefs); atheists; people with acute, chronic, or terminal diseases; patients who recovered from disease; members of the dominant religion in each center; members of religious minorities.
The elaboration of questions within the countries
Upon completion of the focus group stage, centers discuss what was decided during these meetings. Participants in this stage include the main investigator and the moderators. Meeting notes are reviewed with the purpose of suggesting changes in facet definition, as well as discussing their intelligibility. Suggestions provided by each center are forwarded to the group coordinator in Geneva, along with their respective justifications.
Meeting for item formatting in Geneva
Data provided by the various centers are translated into English and brought together, in order to verify the items proposed, transcribed, recorded, and ranked according to importance during focus group meetings. Questions proposed are then re-written according to criteria previously-established for WHOQOL instruments (Fleck et al,5 1999).
Briefly, questions must: adequate themselves for use with the answer scales of the WHOQOL instruments; be derived directly from the facet in consideration; avoid any explicit reference to time or other comparisons; be applicable to any person with or without any religious belief, except for the additional items concerned with specific religions.
Development of the pilot-study module
Items are organized into a questionnaire to be used along with WHOQOL-100. In some countries, questionnaires are pre-tested in a small sample. The goal of this stage is to gather preliminary feedback of problems concerning words used, answer scales, instructions, question relevance, and general receptivity to the module.
Carrying out of the pilot study
The pilot study is carried out with at least 240 subjects per participating center. Demographical, as well as health-related subject data are collected by the investigators. Recruiting in each country must reflect, as much as possible, the profile of healthcare users in the respective country or region.
Statistical analysis of pilot-study data
There is a standardized plan for data analysis, similar to the one used by WHO for the WHOQOL-100 original and for the HIV-AIDS module. Data are analyzed both for each center and for the whole worldwide sample.
Frequency, reliability, and correlation analyses are carried out, as well as multi-dimensionality and factorial analyses.
The field test is aimed at establishing the psychometric properties of the WHOQOL-SRPB module, and evaluating the relationship between health/quality of life and spirituality/personal beliefs.
The participation of the Brazilian center in module development
The work done in the Brazilian center was developed by the Brazilian WHOQOL group coordinator, who has participated in the coordination of focus groups from other WHOQOL projects, and who acted as a coordinator and moderator in the focus groups, as well as by two psychiatrists and one anthropologist, who worked as focus group reporters.
This project has been approved by the Hospital de Clínicas de Porto Alegre Ethics Committee.
Translation of the material
The meeting of the experts produced a document in English.15 This document comprised several facets (see Table 1), and their respective definitions. It was translated into Portuguese by a bilingual psychiatrist, the translation being revised by the whole team.
Facet discussion within focus groups4,14
a) Focus group dynamics
After receiving the invitation to participate, individuals signed a Charter of Informed Agreement and provided their demographical information.
Firstly, the coordinator welcomed and gave instructions to all participants. The instructions included meeting format and goals, and a brief discussion of the projects dimensions.
Discussion began by the reading of the facet, its definition, and the questions related to it, based on the translated document. The group was actively stimulated to analyze intelligibility, format, and adequacy of facets and their definitions in the instrument. They were also prompted to give suggestions for the inclusion of further facets or the modification of the existing ones.
At the end of the discussion of each facet the group was questioned about the importance of the subject discussed for study purposes, and about if they were able to carry on working.
In case upon the end of the meeting there had been no spontaneous suggestions of new facets, the coordinator queried the group directly on this subject.
b) Focus group and study team constitution
In an approximately eight-month period, fifteen focus groups were heard, including: healthcare professionals (two groups), catholics (two groups), afro-brazilian/ evangelicals (one group), spiritualists (two groups), atheists (two groups), recovered patients (two groups), acute patients (one group), chronic patients(one group), and terminal patients(one group).
The choice of religions was based on their frequency among the Brazilian and Rio Grande do Sul state populations.10
Patient and healthcare-professional groups were constituted at the Hospital de Clínicas de Porto Alegre. Patients were recruited through contact with a nurse, who suggested individuals according to their availability and clinical ability to participate in focus-group activities.
Individuals from the various religions were selected through telephone contact with religious leaders from temples geographically close to the Hospital de Clínicas. This area is near the center of Porto Alegre; it is a middle-class area, but with a substantial amount of traffic of people from all social strata.
All participants signed a Charter of Informed Agreement. Meetings lasted in average two-and-a-half hours. At that time the project was already in its final stage, and Field Test application was being prepared.
On the whole, 142 individuals were recruited and distributed in 15 groups: 16 healthcare professionals, 13 atheists, 78 believers, and 35 patients. Minimum age was 21, and maximum 81 years. Duration of meetings ranged from 1:25-2:30 hours.
ANALYSIS OF RESULTS
After analyzing the contents of the discussions, the results obtained are described and analyzed below.
Atheists consider that their manner of thinking cannot be considered as a belief equivalent to religion. They consider what they believe in to be a scientific and rational truth different from faith, which is irrational. They suggested that questions were formatted so as to contemplate such differences. Most facets clearly connected to religious belief, such as faith or connection with a spiritual being/force, were considered as unimportant by this group.
Both atheists and healthcare professionals believed most definitions to possess too strong a religious connotation, which, according to them, might bias the instrument. On the other hand, the group of transplant patients argued that facets lacking a clear connection to religion, such as inner strength do not belong in the instrument for being irrelevant.
A number of groups suggested a clearer formatting for the definitions of facets such as code by which to live, control over your life, connection to a spiritual being/force, and meaning of life, despite the discussion having helped clarify the meaning of these expressions.
A few groups suggested the creation of further facets, as well as of questions which reflected specificities of certain groups. The originally proposed facets, however, seem to have contemplated the more relevant aspects suggested (Table 5).
Similarities among groups
All groups considered as important the discussion of the subject proposed. They were thankful for being invited to participate in the study and reported having considered the meeting as a good perhaps unique opportunity to reflect upon the subject.
The groups of healthcare professionals and atheists shared similar opinions about a great number of issues.
Most facets with religious content were considered as important by religious groups and patients.
There were differences as to the understanding of facet definitions, due to tne individuals being familiar or not with the subject.
Patients of lower schooling levels or in worse clinical conditions also presented greater difficulty for understanding the subject matter proposed, but had no difficulties in discussing these matters.
Finally, healthcare professionals pointed out the difficulties concerning discussion and measurement inherent to such a subjective subject.
The most relevant findings concerning additional WHOQOL-SRBP facets to emerge from the focus group meetings are listed below (Tabela 1).
Patient groups Recovered 1, Chronic, Acute, and Terminal had problems understanding the concept of transcendence. The Healthcare Professionals 1 group was divided as to the whether or not it is possible to quantify transcendence. According to the Atheists group, they are excluded from this domain.
Connection with a spiritual being or force
All patient groups, except for Recovered 2 had problems understanding this facet. The Evangelicals group found it important to maintain this facet because it reflects the feeling of being accompanied by God during difficult times. For the Spiritualists 2 group, the connection with a spiritual being/force is God Himself.
Meaning of life
Groups Chronic Patients, Recovered 1, Catholics, and Afro-Brazilian agreed with the given definition of meaning of life.18 Patient groups Recovered 2 and Acute, on the other hand, considered the definition given excessively complicated and had difficulties elaborating questions about it. For groups Recovered 1 and Evangelicals, the meaning of life is spirituality and God, respectively.
This facet consists in a feeling of admiration towards the beauty of the world and of nature. According to the two recovered patient groups, such feelings appear after suffering from serious disease. A number of groups (Evangelicals, Afro-Brazilians, Spiritualists 1, and Spiritualists 2) did not agree with the notion that admiration could lead to feelings of inferiority, as stated in the facets definition.
This facet generated opposite reactions. The Atheists 1 group considered it very confusing, whereas groups Recovered 2, and Spiritualists 1 thought it to be very well written.
Part of group Healthcare Professionals 1 questioned whether divine love could be separated from love towards other people. According to the Chronic Patients group, the use of the term divine restricts this facet to Catholics.
Inner peace/ serenity/harmony
Was considered as an important facet by groups Spiritualists 1, Terminal, Acute, Afro-Brazilian, Recovered 2, Healthcare Professionals 1, Catholics 1, Catholics 2, and Chronic. On the other hand, both Atheists groups felt that the act of dealing with difficult situations is more related to psychological state than to inner peace.
Group Spiritualists 2 suggested the unification of facets inner peace and inner strength. Group Recovered 2, on the other hand, thought that this facet ought to be suppressed for having no relation to religiousness.
The Terminal Patients group did not feel comfortable in discussing this subject, and preferred to skip it. For groups Spiritualists 2 and Evangelicals, death represents a temporary separation from friends and family. For the Atheists 2group, fear and ignorance concerning death were the greatest motivation for the creation of religion.
For groups Evangelicals, Afro-Brazilians, and Atheists 2, detachment is not important.
The importance of questions on this subject was highlighted by groups Recovered 1, Catholics 1, Catholics 2, Spiritualists 1, Spiritualists 2, Acute, Terminal, Healthcare Professionals 1, Chronic, and Evangelical. Group Afro-Brazilian suggested the inclusion of this facet in Meaning of Life. For groups Atheists 2, and Spiritualists 2, this facet is very similar to Inner Strength.
Control over ones life
Some groups did not agree with the use of the word control. They preferred the terms manage or administer (Spiritualists 1) and decide (Evangelicals).
Goodness towards others/abnegation/renunciation
For the Chronic Patient group, the questions in this facet may not be answered with sincerity. For the Atheists, this facet refers much more to moral virtues internal to the individual than to religiousness.
Acceptance of others
For the Chronic Patient group, this facet is a very important one, but very difficult to carry out in practice. The Afro-Brazilians, on the other hand, do not consider it to be important because it is very difficult always to accept others. Group Atheists 1 suggested substituting the expression to recognize others for to accept others. For the Atheists 2 group, the concept of accepting others makes sense only from a religious perspective.
For groups Atheists 2 and Afro-Brazilians, forgiveness is not unconditional, for it depends on what has been done. For the Evangelicals, on the other hand, forgiveness is unconditional. The Afro-Brazilians suggested the inclusion of this facet in acceptance of others. For group Healthcare Professionals 2, facet Forgiveness should be separated into two different facets, forgiveness given by a superior being, and from person to person.
Code by which to live
For group Recovered 1, this facet is a repetition, for it is included in previous facets. Afro-Brazilians do not have a written code, everything is transmitted orally. For the Evangelicals, the Bible is not only a code, it is God speaking.
Freedom of belief and ritualizing
Afro-Brazilians considered this to be the most important among all facets in the instrument.
For patient groups Chronic and Recovered 1, faith represents positive thinking and optimism, respectively. Group Healthcare Professionals 1 suggested the inclusion of this facet in the transcendence domain. For group Spiritualists 2, this facet is very similar to Inner Strength
Specific religious beliefs
All groups considered it important to maintain questions related to specific religious beliefs.
Other relevant aspects
During discussions, very interesting points would come up at times which, despite not being included in the work plan, were directly related to the subject at hand.
A member of the Recovered 2group reported that she generally tried to avoid expounding her religious beliefs to physicians because, upon doing so, she had been actively reproached by the healthcare team. The patient is devoted to a Catholic saint and, at some point during her treatment, had attributed her recovery to faith. This was not accepted by the team, who put themselves in a position of competing for the merits relative to the patients recovery.
Upon discussing the facet related to death, both groups Panic Disorder and Transplant, reported experiencing death and resuscitation, rebirth symbolically. The recovery from panic attacks and after transplants meant the same to both groups: an opportunity for a new life.
Facet definitions proposed by OMS were generally considered as being representative and adequate directives for the development of valid questions concerning spirituality, religiousness, and personal beliefs.
Nevertheless, suggestions were given, related to the addition of a number of aspects considered as important by some groups (especially believers), although there was no consensus among different groups as to which facets should be added. The Atheists and Healthcare Professionals groups differed from the other groups by noting that most facets are based on the assumption that the individual has religious or spiritual beliefs.
Despite the importance of such an observation, the instrument, through its answer scale, allows for answers representing the lack of importance of the item for the subjects life, which offers the possibility of quantifying the absence of beliefs.
The focus group technique was carried out in accordance to the methodology proposed by authors who have studied the subject,14 , and proved itself adequate for the collection of different opinions from the participants. It allowed for the testing of the hypotheses proposed by the researchers, redirecting and/or broadening concepts previously established by a group of experts. In addition, it highlighted the importance of the discussion of the spiritual dimension for patients lives.
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8. Mitka M. Getting religion seen as help in well being. JAMA 1998;1896-7.
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14. Víctora CG, Knauth DR, Hassen MN. Pesquisa qualitativa em saúde. In: Técnicas de pesquisa-grupo focal. Porto Alegre: Tomo Editorial; 2000. p. 65-7.
15. World Health Organization. WHOQOL and spirituality, religiousness and personal beliefs (SRPB) - report on WHO Consultation. Geneva; 1998. (WHO/MSA/MHP/98.2, 2-23)
Marcelo P. A. Fleck
Rua Ramiro Barcelos, 2350 4º andar
90035-000 Porto Alegre, RS, Brazil
E-mail- mfleck.voy@ zaz.com.Br
Reviewed on 5/2/2003.
Approved on 17/3/2003.
Project funded by the Fundo de Incentivo à Pesquisa do Hospital de Clinicas de Porto Alegre.