Study Design

A qualitative phenomenology study addressing the experiences of Spanish and Brazilian chronic LBP patients was conducted [38]. Qualitative studies are used to gain a deeper understanding of, and find explanations for, people’s behavior under specific circumstances, such as disease [39]. Furthermore, qualitative studies have been used to study people with chronic pain and pain self-management [40]. The main characteristic of this method is that researchers become closely involved in data acquisition and analysis. Data collection requires researchers to interact with the study participants and their social context, which allows some degree of mutual influence [38]. In the field of qualitative studies, phenomenology attempts to understand how individuals construct their world view, and looks through a window into other people's experiences. Such experiences will always have meaning for the people who have lived them, and therefore qualitative phenomenology design utilizes first-person narratives from patients [38].

Previous studies [4, 21–22, 41] have supported the relevance of pain narratives. Webster and Harden [41] reported that: “(…) the human effects of real-world pain that go beyond a pain intensity (…) the pain experience is more than a transaction of neurotransmitters with action potentials to be blocked or modulated (…) Life´s experiences, aspirations, and emotional needs are essential considerations to treating the whole person.” (p.1811). Also, Stisen et al. [4] showed that it is important to include the deeper meaning of metaphors and the personal story behind the expression of pain as a way of understanding each individual with LBP.

Participants

To be eligible for the study, participants had to suffer from chronic non-specific LBP diagnosed by an Orthopaedic physician. LBP was defined as pain between the costal margins and the inferior gluteal folds, which is usually accompanied by painful limitation of movement and may be associated with referred pain running down the leg [32]. Also, patients showed moderate disability measured by Oswestry Disability Index (ODI) [42, 43], and had to participate in a follow-up program at the University Hospital of Salamanca (Spain), and/or the Federal University of São Carlos (Brazil), for Spanish and Brazilian patients respectively. The objective of the program was to evaluate, treat and follow up, in conjunction with Brazil, patients diagnosed with LBP living within a community and moderate disability (ODI score: 20% to 40%) [44], living within a community. This subject profile reflects the typical course of LBP, which tends to stabilize over time in a moderate disability status [45, 46]. The program was established in collaboration with the University of Salamanca and the Federal University of São Carlos, and included the study of the evolution and impact of LBP on the lives of the patients involved. All participants read and signed an informed consent form. Exclusion criteria were established as: a) younger than 18 years old; b) pain of infectious or oncologic origin; c) comprehension difficulties during the interview and d) refusal to participate in the study.

Sampling strategies

A purposeful sampling strategy was employed and can be defined as the selection of individuals based on purposes associated with addressing a specific aim of the research study [38, 47]. It involves deliberately selecting participants, in this case LBP patients, to provide relevant information regarding their experience with LBP [38]. As previously commented, the recruitment criteria were defined to select patients who lived within a community and to describe the impact of pain in their lives into their own social environment. Thus, hospitalized or ambulatory clinic patients were not included in the study. In our study, this strategy was used to gather information from the LBP patients themselves [38, 47]. Among the different types of purposeful sampling techniques, the sequential sampling method was employed with the aim to access a substantial range of experiences that enabled comparisons to be made. This type of sampling was designed to reflect the context and experiences of a particular group, in this case the LBP patients [38]. The patients were included progressively as they accepted to participate in the study. The enrollment of the patients was not subjected to any probabilistic method (randomization). Finally, forty-eight patients were included within the sample (22 Spanish and 26 Brazilian patients) and none withdrew from the study. The researchers made initial contact with the patients through the Medical Chief in each of the Brazilian and Spanish Orthopaedic Medical Services. The researchers explained the purpose and design of the study to the patients during an initial face-to-face contact session. A 1-week period was then allowed for patients to decide whether or not they wished to participate. During the second face-to-face session, they were asked to give written informed consent and permission to tape the interviews if they wished to participate in the study. Following this, data were collected and the interviews were completed.

Researchers´ backgrounds and procedure

The research team consisted of six members (4 women and 2 men), three from Brazil (DPRS, PRC, TFS) and three from Spain (DPC, LMG, FAS). Each group was led by an expert researcher with experience in qualitative designs (DPRS, DPC). The other members of the research team were working at one of the respective university (PRC, TFS, LMG, FAS). At the time the study was carried out, all of the researchers had their PhDs, except one member who had a Master’s Degree (DPRS). Four members were physiotherapists (DPRS, PRC, TFS, and FAS), one psychologist (LMG) and one nurse (DPC). Previous to working at the University level, 4 members of the team had clinical experience in rehabilitation and pain (DPRS, PRC, TFS, and FAS), one member in neurology (DPC) and one in psychology (LMG). In addition, all members of the team had research experience in chronic musculoskeletal pain. The authors had no previous contact with any of the participants.

The teams from both countries met once a week via teleconference. The contents of the meeting were related to: quality control criteria, methodological aspects for data collection and analyses, and updates regarding the progress of the study. The meetings were conducted in both languages, i.e. Spanish and Portuguese.

Data collection

Data were acquired over a one-year period from January 2013 until December 2013. The methodology used for data acquisition is outlined in Table 1.

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Table 1. Data collection process.

https://doi.org/10.1371/journal.pone.0159554.t001

The data collection process began with an in-depth unstructured interview [48], always beginning with the following question: “What is your experience with LBP?” The in-depth unstructured interview consisted of direct but open questions that allowed the patients to share their personal experiences. The aim of this first question was to seek potential themes and topics that could be further expanded. Subsequently, a semi-structured interview based on a question guide was performed (Table 2). The aim here was to elicit further information regarding the specific themes and topics of interest that had emerged from the unstructured interview [48]. The question guide was developed after reviewing the patients’ accounts obtained during data collection.

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Table 2. Question guide for the semi-structured interview.

https://doi.org/10.1371/journal.pone.0159554.t002

The interviews were tape-recorded and transcribed verbatim. Personal documents (diary fragments and personal letters) provided by the patients and the researchers’ field notes were collected. The personal data collected from patients provided a rich source of information since they describe personal experiences from the patients’ point of view [38].

During the interview, the researchers made notes, including a description of the environment, patient non-verbal responses to questions, the use of metaphors in their narratives, and other relevant points emerging in the interview.

A total of 48 interviews involving 48 patients were conducted. These interviews comprised a total recording time of: 1680 minutes (28 hours) and 1335 minutes (22.25 hours), for Brazil and Spain respectively. Also, the median duration of an interview was 58 minutes, with a range of 37–102 minutes, for Brazil, and 44 minutes, with a range of 32–100 minutes for Spain. Eighteen personal letters and 8 diary entries were collected from the patients, together with the researchers’ field notes from the 48 participants. All interviews were conducted in a separate office at the Hospital and University facilities. Sociodemographic data were obtained following the interviews and were provided independently by the participants in a self-completed questionnaire.

Data analysis

A complete and literal transcription of each of the interviews, researchers’ field notes and patient’s documents were drafted. The texts were collated to allow qualitative analysis to be performed [38]. In order to include the personal documents into the analysis they were first check for authenticity (generated within the context of LBP), credibility (produced by the actual LPB patients), representativeness (described personal experiences) and meaning (provided information relevant to the study) [49]. Each researcher was responsible for data collection, treatment and analysis. A thematic analysis was performed separately [50] by the researchers of each country. This process began by highlighting the most descriptive content to obtain meaningful units, and then delved deeper to reduce and identify the most common meaningful groups. Thus, groupings of meaningful units were formed, referring to similar points or content that allowed the topics that described the receivers’ experience to emerge. The thematic analysis was carried out separately on the interviews and using the personal documents. In those patients that had been interviewed and provided personal documents the obtained results were integrated separately in the same analysis matrix. The results of the analysis were subsequently combined in joint meetings, where the data collection and analysis procedures were discussed. In the case of differences in opinion, theme identification was performed by consensus among the team members. Following on, the entire research team held joint meetings to show and combine the results of the analysis from each country. At that point, all researchers analysed and discussed the Spanish and Brazilian results, and identified final themes by consensus among all members. All of the researchers participated in the coding and analysis, but the task was overseen by the researchers with experience in qualitative research (DPC, DPRS). No data analysis software was used.

Quality Criteria

The guidelines for conducting qualitative studies established by the consolidated criteria for reporting qualitative research [51] were followed (http://www.equator-network.org/). Data reliability method [52] consisted of: a) cross-triangulation by the research team, which included a plan of meetings where the cases analysed by each team member were presented to obtain a consensus; b) auditing the material obtained from 16 randomly selected cases by an external researcher; and c) patient verification. Patient verification was carried out in two steps: 1) post-interview: the tape-recorded interview was presented to the patient to validate the contents and allow for additional information to be added and post-analysis; 2) analysis resulting from the interview: the units of meaning and the groupings of meaning identified by the researcher were presented to the patient to confirm that the results of the analysis actually reflected the patient’s perspective.

The quality control that was applied to the interview transcription was taken into special consideration. In the first phase, the interviews were transcribed using the language of the country of origin so that the researchers from that country could carry out the corresponding analysis. Afterwards, all transcriptions together with the analysis conducted (qualitative data and results) were translated (from Spanish to Portuguese and from Portuguese to Spanish) and sent to researchers of each country (Brazil to Spain and Spain to Brazil) in order to prepare for the joint meetings. Collecting qualitative data in one language and presenting the findings in another language forced the researchers to take translation–related decisions that had a direct impact on the trustworthiness of the research and its findings [53]. The translation procedure used in the present study included the following stages: a) First, all verbatim transcription of the contents of the interview data into Spanish and Portuguese (and vice versa), followed by content analysis, b) second, concepts and themes emerged after the verbatim transcriptions and performance of the analysis. Two bilingual translators translated all qualitative data and results into Spanish and Portuguese (and vice versa). The final Spanish and Portuguese versions were finalized by the agreement between both translators, c) then, bilingual staff back translated the transcriptions, qualitative data analysis and results into the original language. Back translation involves translating from the target language back to the source language in order to evaluate the equivalence between the source and target versions [54] and d) finally, a conceptual equivalent regarding the words used was achieved by selecting those which most native speakers could understand. An expert panel of researchers and translators was involved in reaching a final agreement of the translations used in this work [54].

Ethics

This study was approved by the Clinical Research Ethics Committee at the University of Salamanca (project number: 7-2-12). It was performed in accordance with the Declaration of Helsinki. Permission to record the interviews was always sought prior to their being performed. Written informed consent was obtained beforehand.

Ways of perceiving and expressing pain

Regarding the experience of pain, most participants, from both countries, reported that pain had become “everything”; it was seen as a presence in itself that had in some way “taken over” the patient’s body. The participants focused constantly on their pain and anything outside it was considered secondary. This type of pain affects all levels of life: physical, psychic and social. Similarly, all patients perceived that any physical disturbance, pain, or worry seemed to take priority over everything else, and their whole lives were directed towards avoiding the appearance or any increase in their pain.

On describing and expressing LBP, the Spanish patients described it as an isolated phenomenon, using specific and aggressive terms (like being stabbed with a knife, it eats you up, it is rabid, a deep wound) whereas the Brazilian patients described it in relation to activities and circumstances where pain arises (work, housework…). Most of the Brazilian patients appeared to be more positive about their pain, even in cases in which owing to their clinical condition it was chronic and constant. They showed a cheerful, positive attitude and were aware that such an attitude would be beneficial to them.

Regarding the differences between the patients from the two countries, the way of expressing pain varied. Thus, the Brazilian patients claimed that being cheerful and positive helps, whereas the Spanish patients reported that feeling sad and being negative was not good for them.

The socio-familial environment as a modulator of pain

All participants stated that pain was something “personal”; they lived it and felt that nobody was able to understand their experience. This led them to draw away from their immediate social environment. Moreover, most patients (from both countries) reported that their family environment demanded extra of them; they urged that the patient make an effort to overcome pain, as if “forgetting about it” were an option. The patients reported that sometimes they were even accused by family members of being exaggerated or malingering. The lack of a clear diagnosis in some cases made them feel less well understood. They sometimes even lived their pain as though it were a scourge.

In both countries, the patients’ narratives pointed to two perspectives in relation to their friendships. On the one hand there were participants who had lost friends as a result of the changes in their lifestyles brought about by the pain they were undergoing (they stopped going out, stopped travelling, etc.) and, on the other hand, there were individuals who struggled to keep their friends, avoiding changing their habits even though this was not to their benefit.

Regarding differences between the participants from the two countries, the reports of the Brazilian patients pointed to more support from friends and family, with few changes in their daily activities due to pain. By contrast, in the Spanish patients there were more reports revealing a change in their lifestyles, together with the use of more expressions referring to how lonely they felt, how they felt rejected, or how they were suspected of malingering by their family members.

Religion as a modulator of pain

All the Brazilian patients stated that religious belief affected the experience of pain. For these patients, faith and belief was a relief, a constant and necessary support that gave them the strength to cope with their pain. No accounts of pain being perceived as divine retribution or anything similar were recorded.

Half of the Spanish patients stated that religion could affect pain, although with interpretations different from those of the Brazilian patients. For these Spanish patients, religion was mentioned in terms of its cognitive and mental effects in the perception of pain, where there is a rational explanation of the mechanism concerning the belief that faith helps patients. The other half of the Spanish patients did not believe that religion could help to mitigate lumbar pain, even though some of them were believers.

Socio-economic and educational status as a moderator of pain

Nearly all the patients included in the study reported that the economic development of the country of origin influenced the experience of pain. Good health coverage and the existence of resources destined for the treatment of LBP were factors that reduced the experience of pain. Most of the Brazilian patients stated that the rich may suffer less because they have access to better health care, while the poor must suffer more owing to their economic limitations. In the case of the Spanish patients, the results were not as patent since they considered their own health system sufficiently universal to cover lumbar pain for all sectors of the population.

In both countries, living in urban or rural areas was also perceived as a factor that affects the experience of pain. Thus, some Brazilian and Spanish patients reported that living in a rural setting increased the likelihood of developing LBP. In the country, the possibilities of rest or stopping work are slim, and pain must be supported as long as this allows the individual to work.

Regarding the differences between the patients from both countries, most of the Brazilian patients described experience of more pain than the Spanish ones, but they were able to bear it better in their daily lives. Differently, the Spanish patients complained more and had difficulty in accepting and assimilating the pain.

Some patients, from both nationalities, stated that having more education decreases the perception of lumbar pain because better educated people will have better knowledge about how to seek solutions, and understanding of the mechanisms of pain. Some Brazilian patients related a low education level to having more menial jobs, which were more likely to produce lumbar pain. By contrast, the majority of Spanish patients stated that the level of education was not related to lumbar pain or the way of coping with it.

Limitations

Although some authors recommend that interviews should be held alone [38, 46], 6 patients expressly requested that their partners also be present. In these cases it was found that the partners participated actively in the care of the patients, who delegated certain aspects of their care to their partners. Furthermore, during the interviews it was observed that far from having an inhibitory effect, the presence of the partners acted as an efficient catalyst and memory aid, and the partners were able to verify the patients’ accounts. Despite this, any possible "pollution" by the partners was controlled by preventing them from monopolizing the conversation during the interview and redirecting the interview when distractions arose due to the discussion of irrelevant aspects. Another limitation is that the great majority of the patients from both countries perceived themselves as being middle class. This can be explained by the type of job they had and how they consider that the type of job could be classified in one or another social category. Finally, the social and cultural differences between countries could modify the experiences narrated by the patients. To minimize this possibility, the program utilized to recruit the patients and the criteria that allow the patients to participate were identical for both countries. Likewise, at the time when data were collected and analyzed, periodic meetings were carried out between the members of the research team of both countries to ensure that the same methodology was applied during the study.