INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING 2021, VOL. 16, 2005760 https://doi.org/10.1080/17482631.2021.2005760 Patients’ appraisals about a multicomponent intervention for fibromyalgia syndrome in primary care: a focus group study Victoria Mailen Arfuch a,b,c, Gonçalves AQa,d, Rosa Caballol Angelats e,f, Carina Aguilar Martína,g, Noèlia Carrasco-Querola, Maria Cinta Sancho Solf,h, Gemma González Serraf,i, Immaculada Fusté Anguerae,f and Anna Berenguerab,j,k a Unitat de Suport a La Recerca Terres de l’Ebre, Institut Universitari d’Investigació En Atenció Primària Jordi Gol (Idiap Jordi Gol), Tortosa, Spain; bDepartment of Pediatrics, Obstetrics and Gynecology, and Preventive Medicine, Universitat Autònoma de Barcelona, Spain; cInsurance Medicine Division, Department of Neuroscience, Karolinska Institutet, Sweden; dUnitat Docent de Medicina de Família I Comunitària Tortosa-Terres de L‘Ebre, Institut Català de La Salut (Ics), Spain; eCentre d’Atenció Primària Baix Ebre Tortosa Est, Gerència Territorial de Terres de l’Ebre, Institut Català de La Salut (Ics), Tortosa, Spain; fUnitat d’Expertesa En Sindromes de Sensibilització Central Terres de l’Ebre, Gerència Territorial de Terres de l’Ebre, Institut Català de La Salut (Ics), Tortosa, Spain; gUnitat d’Avaluació, Direcció d’Atenció Primària Terres de l’Ebre, Gerència Territorial de Terres de l’Ebre, Institut Català de La Salut (Ics), Tortosa, Spain; hCentro de Salut Mental Adultos (Csma) de Fundació Pere Mata Terres de l’Ebre, Tortosa, Spain; iServei de Rehabilitació I Medicina Física, Hospital Verge de La Cinta, Gerència Territorial de Terres de l’Ebre, Institut Català de La Salut (Ics), Tortosa, Spain; jCentral Research Unit, Institut Universitari per a La Recerca a l’Atenció Primària de Salut Jordi Gol I Gurina (Idiapjgol), Barcelona, Spain; kDepartament d’Infermeria, Universitat de Girona, Girona, Spain ABSTRACT ARTICLE HISTORY Purpose: To assess fibromyalgia patients’ experiences and appraisals about a multidisciplin­ ary intervention programme, in Catalonia’s primary care, regarding its format and contents, Accepted 9 November 2021 benefits, and health impact in the short and long term. KEYWORDS Method: Qualitative interpretative research design through hermeneutic phenomenology Fibromyalgia syndrome; perspective. Two focus groups discussions were conducted in February and July 2020. The primary care; purposive heterogeneous sample included 19 fibromyalgia patients who attended a multi­ multicomponent component programme. In addition, thematic analysis on the verbatims was performed. intervention; qualitative Results: Findings were organized into five main domains with an explanatory theme each. research; focus group Overall, the informants valued the programme as a positive experience due to its holistic discussions approach, health benefits, suffering relief, group effect, and fibromyalgia legitimacy promo­ tion. Detected improvable aspects focused on extending the timeframe, including family members as beneficiaries, deepening the thematic contents, and getting regular access to this healthcare service. Furthermore, the intervention was considered feasible to be incorpo­ rated into usual clinical care. Conclusion: the programme fulfilled users’ expectations about results and procedure and showed promise as a treatment strategy to reinforce the usual practice. Our findings suggest a broad perspective on fibromyalgia patients’ suffering, which urges us to adjust the inter­ vention programme to their real health needs. 1 Introduction clinical care (UCC) may not be sufficient to address Fibromyalgia syndrome (FMS) remains medically patients’ suffering. In this context, primary care pro­ unexplained (Alciati et al., 2021), for what its gold- fessionals, including nurses, physiotherapists, and psy­ standard treatment is debated, and there is scope for chologists, could strengthen the usual medical high-quality evidence (Mascarenhas et al., 2021). practice. Being classified as a central sensitivity syndrome Clinically, FMS involves somatic, psychological, and (Fleming & Volcheck, 2015), FMS significantly compro­ social factors (Sarzi-Puttini et al., 2020). It is character­ mises patients’ quality of life (QOL) and functionality, ized by chronic widespread musculoskeletal pain leading to disability (Wuytack & Miller, 2011). associated with multiple unspecific symptoms such Therefore, healthcare strategies need to provide biop­ as insomnia, fatigue, depression and anxiety. As a sychological and multimodal treatment approaches in result, patients’ social and work performance can be order to face FMS impact (Bair & Krebs, 2020). deteriorated leading to sickness absence and early Given FMS high prevalence among rheumatic ill­ retirement (Isomeri et al., 2020; Mas et al., 2008). nesses, representing 2.45% in Spain (Cabo-Meseguer Even though the evolution of its diagnostic criteria et al., 2017; Seoane-Mato et al., 2019), the usual (F Wolfe et al., 1990, 2016; Frederick, 2010), both CONTACT Anna Berenguera aberenguera@idiapjgol.org Fundació Institut Universitari per a La Recerca a l’Atenció Primària de Salut Jordi Gol I Gurina (Idiapjgol), Barcelona, Spain Supplemental data for this article can be accessed here. © 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. 2 V. M. ARFUCH ET AL. professionals and patients still struggle when search­ intervention approach is in its infancy in the Spanish ing for an accurate diagnosis and treatment approach public health sector. (Galvez-s & Reyes, 2020). Since 2016, accredited units specializing in Central Recent studies highlight the disruptive effect of the Sensitivity Syndromes have provided multidisciplinary diagnosis experience and the treatment process on healthcare to FMS patients in Catalonia’s primary care patients’ daily life (Ashe et al., 2017; Briones- centres and hospitals (Departament de Salut, Vozmediano et al., 2015; Taylor et al., 2016). This is Generalitat de Catalunya, 2017). As Stein and especially true for middle-aged women, who are the Miclescu (2013) explain, primary care is an appropriate most impacted population group showing a substan­ setting for delivering treatment on chronic pain and tially higher rate than men (Marques et al., 2017; Mas supporting patients and their families with health et al., 2008; Villanueva et al., 2004). Even though this education and coping skills. major sex difference is not fully understood, it could To the best of our knowledge, qualitative research be explained by a diagnostic criteria bias (Häuser et about the benefits of multidisciplinary treatments al., 2019; Samulowitz et al., 2018; Frederick Wolfe et remains scarce (Bourgault et al., 2015; Miranda et al., al., 2018). On the other hand, Martínez-Lavín (2021) 2016; Oliveira et al., 2019; Susmita Kashikar-Zuck et al., proposes considering fibromyalgia as a stress- 2016). However, through a mixed-methods design, induced, sex-dimorphic neuropathic pain syndrome Bourgault et al. (2015) have evidenced that qualitative rather than a mental somatic symptom disorder, research is suitable for detecting patients’ global which may explain why it is more frequent in impression of change regarding pain management, women due to the prevalence of this phenomenon functionality, and QOL. in this population group. According to the Medical Research Council in According to the qualitative literature, the most Implementation Science (NIH, 2018), communication frequent themes on patients’ accounts related to with stakeholder groups is a valuable resource for their living experience with FMS are poor functional assessing quality, acceptability, feasibility, and the performance, distress, lack of credibility, uncertainty, contents of healthcare interventions. In addition, pain acceptance, poor sleep, and social stigma understanding participants’ treatment lived experi­ (Climent-Sanz et al., 2021; Johnson et al., 2006; ence and its impact on daily life helps adapt the LaChapelle et al., 2008; Quintner, 2020; Sim & implemented practices to their true health needs Madden, 2008; Taylor et al., 2016) and priorities (McMahon et al., 2012; Sim & Madden, Lempp et al. (2009) explain that the knowledge 2008). Furthermore, focus group discussions (FGDs) gap on FMS etiopathogenesis creates uncertainty are among the most popular data collection methods about the best treatment option and foments FMS implemented in qualitative research (Gill et al., 2008) inauthenticity. In this scenario, patients’ voices reach based on interpersonal interaction dynamics to a strategic value in the development of healthcare extract information about the participants’ experi­ approaches. ences and beliefs on a specific topic. The UCC for FMS in Spain is generally based on the This study aims to assess patients’ experiences and administration of a medical record, the delivery of appraisals about a complex intervention programme for information about the condition, the prescription of FMS in primary care centres belonging to the Gerència pharmacological treatment, and the referral to specia­ Territorial Terres de L’Ebre of the Institut Català de la lists if necessary (Celaya et al., 2017; Gándara & Salut, Spain. Precisely, this study intends to detect the Muñoz, 2017; Instituto Nacional de la Seguridad improvable aspects of this programme, its barriers and social, 2019). However, its purely biomedical approach facilitators, the adequacy of its elements (timeframe, seems limited as a healthcare strategy. Alternatively, setting, materials, group-based approach, among non-pharmacological therapies such as physical activ­ others), the quality of the therapeutic components, the ity, psychological therapy, and health education inter­ relevance of the thematic content, its benefits on symp­ ventions have been demonstrated to improve tom control, and its impact on QOL in the short and symptom management and QOL (Aman et al., 2018; long-term. The results are expected to tailor the inter­ Baranowsky et al., 2009; Bernardy et al., 2013; Bush et vention according to the patients’ actual health needs al., 2013; García-Ríos et al., 2019; Luciano et al., 2014; and available resources to strengthen the programme Prabhakar et al., 2019; Sosa-Reina et al., 2017). benefits and implementation. Additionally, this study Furthermore, multicomponent interventions (MCI) may support and extend the results of a randomized have been proven beneficial in the short and long- clinical trial (RCT) linked to this project (ClinicalTrials.gov: term (Bourgault et al., 2015; Giusti et al., 2017; Jacobs NCT04049006) (Caballol Angelats et al., 2019). Finally, et al., 2020; Martin et al., 2012; Ollevier et al., 2019; this study will allow the intervention programme’s stan­ Saral et al., 2016) and recommended by international dardization to be adjusted and replicable in other guidelines (Thieme et al., 2017). Nonetheless, this healthcare contexts and promote adherence. INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING 3 2 Materials and methods The inclusion criteria involved a clinical diagnosis of FMS (International Classification of Diseases-10 2.1 Design codes: M79.0, M79.7), over 18-year-old, language skills Qualitative interpretative research was conducted fol­ in Catalan or Spanish, a phone number, a minimum of lowing a hermeneutic phenomenological perspective 75% attendance at the MCI programme (equal to or (Dibley et al., 2020; Wilson, 2000). This design more than 9 out of 12 sessions), voluntary participa­ approach helps detect and interpret participants’ tion in the study and signed informed consent. On the common meanings engaging what, why, and how other hand, the exclusion criteria included: active psy­ questions in the intersubjective setting (Charmaz, chotic episode, intellectual impairment, severe 2008; Laverty, 2003; Tindall, 2009; Villegas, 1992). depression and or personality disorder, auto/hyper- aggressive behaviour, psychoactive substances administration, not having met the minimum atten­ 2.2 Multicomponent intervention programme dance, not signing the informed consent. The recruitment was conducted three weeks in The MCI implemented consists, in addition to the advance and via phone calls to those patients who UCC, in a 12-week/2-hour session group-based pro­ met the inclusion criteria. They were provided with gramme combining: health education -including an key information about the study goals and the date introduction to multicomponent therapy, neurophy­ and place where the FGD would be carried out. In siology and pharmacology of pain, techniques of pos­ order to prevent absenteeism, two telephone con­ tural hygiene, nutrition, insomnia management, tacts were made as reminders a week before the memory, and sexuality; physical exercise -focus on FGD date and the previous day. breathing and relaxation, stretching, strength/joint, As Figure 1 shows, from the 88 subjects (85 and coordination exercises; and cognitive-behavioural women/3 men) that participated in the MCI during therapy (CBT) -based on pain and attention manage­ the planned periods (FGD1 = 57; FGD2 = 31), 40 (39 ment, learning to manage emotions, strategies for women/1 man) were excluded for not meeting the coping with difficulty, and pleasurable activities plan­ inclusion criteria of 75% attendance. Consequently, 48 ning. It is delivered by a general practitioner, a phy­ subjects (46 women/2 men) were included in the siotherapist, a psychologist, and each health centre’s recruitment process, from which 24 were excluded, head nurse. leaving 24 possible participants in the first lists. This MCI programme aims to promote patients’ Finally, 19 informants participated in the FGDs literacy and skills development for FMS management, (FGD1 = 12; FGD2 = 7) and were included in the enhance their physical status and reduce their emo­ thematic analysis. In addition, two members of this tional distress in order to overcome psychological final sample were included as extra informants in the difficulties. Further details about the thematic con­ last call, although they had 66.7% of attendance in tents of each session and the research specifications case of no-shows. were published in the study protocols of the RCT The study sample includes 63.2% of participants study and the qualitative research (Arfuch et al., with a follow-up >6 months and 36.8% with 2020; Caballol Angelats et al., 2019). <6 months. The sample comprises women as the only two men who met the inclusion criteria did not accept participating in the FGDs due to the COVID-19 2.3 Participants outbreak. Furthermore, the participants belonged to 7 All participants were recruited from the 11 primary of the 11 primary care centres involved in the study. care centres in the Gerència Territorial Terres de The attendance criterion was fulfilled with a total l’Ebre. mean of 10.3 sessions attended (SD 1.2), representing Purposive heterogenous sampling was implemen­ a mean of 85.5% of participation and no substantial ted to reach maximum discursive variability consider­ differences between focus groups. Table I shows a ing gender, age, birth country, educational level, description of the study sample. occupational situation, working status, and geogra­ Table I. Study sample. phical area. According to the RCT data collection Among the most remarkable characteristics of the schedule, this sampling strategy divided the sample sample, the informants’ mean age was 61.8 years, into two groups to assess the perception of benefits being the second FGD more mixed-age than the first in the short and medium/long-term. As a result, the one. FMS evolution was estimated based on the diag­ first FGD (FGD1) was performed in February 2020, nostic year showing a mean of 7.9 years (SD 5.5), with including patients with ≥6 and 12 months of follow- approximately 2 points of difference between groups. up post-intervention. The second one (FGD2) was Furthermore, 94.7% of the sample were born in Spain, conducted in July 2020, including patients up to and the most frequent marital status was married <6 months of follow-up. (68.4%) in both FGDs. Regarding the educational 4 V. M. ARFUCH ET AL. Figure 1. FGDs flow chart. level, 73.7% of the total sample had no studies or just 2.4.2 Interview guide a complete primary education. In reference to the The semi-structured interview guide (Supplementary occupational situation, 36.8% of the sample were material 1) included open-ended and follow-up ques­ employed while 47.4% were unemployed, disabled, tions covering the following topics: patients’ experi­ or retired; and only 15.8% were homemakers. ences during the MCI programme and their However, 50% of the informants in FGD1 were effectiveness overall perception, the adequacy of the employed, whereas in FGD2, it represented 14.3% as frame elements (timeframe, setting, professionals, 57.1% of the sample were retired. beneficiaries, group-based intervention approach) and contents, improvable aspects, barriers and facil­ itators on the intervention implementation, and the 2.4 Data collection benefits on patients’ QOL in daily life. The interview 2.4.1 Focus group discussions guide was not pilot-tested with FMS patients but Two FGDs with 19 patients (FGD1 = 12; FGD2 = 7) reviewed exhaustively by the research team. who received the MCI were performed in February and July 2020, respectively, to assess the programme’s 2.5 Ethical considerations socially constructed meaning using an interview guide. The meetings were conducted in the same Helsinki/Tokyo Declaration was followed for the study room and primary care centre. They were audio- design being approved by the Clinical Research Ethics recorded, with prior signed informed consent, and Committee of the Fundació Institut Universitari per a the verbatims were systematically transcribed, guar­ la Recerca a l’Atenció Primària de Salut Jordi Gol i anteeing informants’ anonymity. Gurina (IDIAPJGol), on 25/04/2018 (code P18/068). The FGDs lasted 90 min each, and they were con­ Participants received oral and writing information, ducted by the first author of this article (PhD candi­ guaranteeing data protection and anonymity before date), together with a co-moderator (PhD) and an signing the informed consent sheet. observer (PhD) who performed field notes. Both mod­ erators have education and training in psychotherapy 2.6 Data analysis and researching and are experienced with group tech­ niques, while the observer belongs to the biomedical A thematic analysis (Braun & Clarke, 2006) of the field. Participants had neither previous knowledge nor participants’ accounts was carried out to detect out­ contact with the qualitative research team before the standing topics through the interpretative methodol­ FGDs, and they were informed about professionals’ ogy. The text corpus and the observer’s field notes backgrounds at the beginning of the sessions. were read several times and interpreted by the three Moreover, the FGDs were attended by three members qualitative research team members, including preli­ of the research team and the recruited informers. minary analytical intuitions, a coding process, and INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING 5 Table I. Study sample. No specific qualitative analyst software was imple­ FGD1 FGD2 mented to carry out the coding. Finally, no informers’ Total (> 6 months (< 6 months sample follow-up) follow-up) feedback was requested for the analysis process. N = 19 n = 12 n=7 Mean (SD) min-max Age 61.8 (8.4) 59.4 (5.2) 53–71 65.8 (11.5) 46– 2.7 Rigour 46–79 79 Diagnostic evolution 7.9 (5.5) 1– 7.3 (5.3) 2–16 9.1 (6.2) 1–19 In attendance of the key component of data trust­ 19 worthiness (Korstjens & Moser, 2018), this study pre­ Participation in the 10.3 (1.2) 10.4 (1.2) 8–12 10 (1.2) 8–11 MI 8–12 sents two analysts’ triangulations with three research N(%) team members compiling credibility. Nevertheless, Country of birth transcriptions were not returned to participants for ● Spain 18 (94.7) 12 (100) 6 (85.7) comment and correction but double-checked by the ● Other 1 (5.3) 0 1 (14.3) research team. Marital status Moreover, purposive sampling has been con­ ● divorced 3 (15.8) 2 (16.7) 1 (14.3) ducted, including thick descriptions with individual ● married 13 (68.4) 9 (75) 4 (57.1) and contextual factors, in order to obtain maximum ● single 1 (5.3) 0 1 (14.3) discursive variability and FMS patient representation ● widow 2 (10.5) 1 (8.3) 1 (14.3) for outcome transferability. Even though no external Occupational audit trail has been performed to ensure dependabil­ situation ● employed 7 (36.8) 6 (50) 1 (14.3) ity, the research path was documented and described ● unemployed 1 (5.3) 1 (8.3) 0 throughout the study section. For instance, the same ● disabled interview guide was implemented in both FGDs, and 2 (10.5) 2 (16.7) 0 three different analysts’ codings were contrasted dur­ ● homemakers 3 (15.8) 1 (8.3) 2 (28.6) ing triangulation to guarantee the study’s consistency. ● retired 6 (31.6) 2 (16.7) 4 (57.1) Additionally, verbatims were transcribed by an exter­ Educational level ● primary 12 (63.2) 8 (66.7) 4 (57.1) nal specialist and reviewed by the research team. ● secondary Furthermore, confirmability has been achieved by 4 (21.1) 4 (33.3) 0 using literal quotations and including researchers’ ● post-secondary 1 (5.3) 0 1 (14.3) backgrounds. Finally, preliminary analytical intuitions ● without studies 2 (10.5) 0 2 (28.6) focused on reflexivity during the thematic analysis to Work status ● hight profes­ 1 (5.3) 0 1 (14.3) detect possible sources of the investigator’s bias. sionals ● intermediate pro­ 2 (10.5) 2 (16.7) 0 fessionals 3 Findings ● skilled white-col­ 6 (31.6) 6 (50) 0 lar workers The thematic analysis results were systematically ● skilled manual 0 0 0 organized in five domains according to the interview workers guide with the view of focusing on the purpose of this ● manual labourers 10 (52.6) 4 (33.3) 6 (85.7) study and including one central theme that emerged SD = standard from the answers reported in the FGDs. Additionally, deviation representative quotations are cited to support the interpretation of the corpus text. For this purpose, quotations were translated from Catalan and Spanish the data organization into categories. Saturation of to English. Unfortunately, due to some of the partici­ the data was assumed once no more codes could be pants refused to be filmed, no video-recorded was captured from the data and no more meaningful carried out. Consequently, it was not possible to iden­ insights were deduced from them according to the tify the informers during the transcriptions so that study goals and after an interactive and reflective they are presented by FGD instead. process of analysis. Subsequently, the analysts’ triangulation was per­ 3.1 Domain 1: user satisfaction formed to detect the essential attributes of the narra­ tives, compare perspectives, and reach an agreement Theme 1: “A positive but improvable experience”. on the most prominent domains and emerging The MCI was unanimously embraced by users from themes of the FGDs. Discrepancies were resolved both FGDs, describing it as an enriching and positive through consensus after reviewing transcripts. As a experience in terms of acceptability. The programme result, the selected themes were identified and clus­ was acknowledged for its educational and health ben­ tered, and an explanatory framework was drafted. efits as well as for its positive group cohesion effect. 6 V. M. ARFUCH ET AL. “I have learned a lot from this programme. I have But what if I do not like so much this type of work out been with FMS for 19 years now, but I have learned and I prefer something else? I think they do not really many things about physical activity, eating, about … understand our limits […]. I think they did not adjust about many, many things […] Really good; excellent. I their methods to our condition. However, it was not feel, let’s see … a little relieved. Anybody can stop deliberately, I believe […].” (FGD2) your pain but provides you psychological relief. As it is said that this syndrome is just in our heads. Let’s “We would rather be motivated more softly.” (FGD2) see … when you know that people are feeling worse “We are very susceptible. Generally, nobody listens to than you … you know? Be aware of it relieves you. you, nobody understands you, and on top of that, […] From my point of view, it encourages you to live professionals put pressure on you. Consequently, you because as the lady said: the family does not under­ end up in a terrible mood. Truly. We are highly emo­ stand fibromyalgia, and we are not understood either. tionally sensitive people, easily overwhelmed. You do The person who has it does understand though. We what you can, but If you add a burden to this sensi­ support each other.” (FGD2) tivity, the body just cannot handle it.” (FGD2) “I wanted to say that, for me, this whole experience The proposed MCI was also considered feasible to has been incredibly positive, especially emotionally.” (FGD2) be incorporated into usual clinical care, replicable in other health contexts, and recommended to other Participants´ acceptance is strongly related to their patients with FMS by the informers. feeling of being acknowledged, understood, com­ forted, and accompanied, especially by peers: “Would be useful to get prompt access to therapy service and receive psychological support more fre­ “Discovering that you are not alone.” (FGD1) quently.” (FGD1) “To have someone who is going through the same as “The programme has gone very well, but it should not you, who understands you completely.” (FGD2) end here … it should be a continuum, […] we should have regular psychological help.” (FGD2) The identification process involved, given by the group cohesion effect, confirmed their illness, validat­ ing them as legitimate patients from a legitimate 3.2 Domain 2: users’ overall perception of MCI health condition. Thus, FMS legitimacy, not only as a effectiveness diagnostic category but as a frequent and genuine affliction, represents one of the most critical infor­ Theme 2: “Health improvements and suffering relief”. mants’ concerns: Regarding the perceived health benefits, informers from both FGDs agreed in the positive impact of the “How can I demonstrate that I have this pain? […] I MCI on their QOL. Nevertheless, they do not report cannot prove it scientifically.” (FGD2) significant changes in physical symptoms such as “I think you made an excellent programme. It rein­ pain. On the other hand, they explained that the forced something very important, which is accepting MCI allowed them to improve their lifestyles by incor­ and assuming the diseases […]. I have learned more porating healthy habits and routines, reducing the from my colleagues than from the doctor. Why? pharmacological intake, developing a positive atti­ Because each experience is unique, and each case is singular.” (FGD2) tude towards pain, and enriching psychological and social well-being. The group involves a task, a purpose, and a com­ “I do think that we made progress with our quality of mon objective, finding its participants in an environ­ life because we had the opportunity to relate to ment of unity and representativeness. Social others with the same problem and who understood interaction shapes subjectivity in multiple directions our suffering. […]. Nevertheless, it is not so simple as and, as it is expressed in the first quote, “it encourages it looks. Even though you can ‘look better’ for the rest you to live”. Therefore, group cohesion is presented as of the world, any extra physical effort could leave you vital, it represents life drive, and therefore, it embo­ motionless for days.” (FGD2) dies well-being and health. “We were taught about the different symptoms, the pain, the consequences of medication … but we “When the course was over, we used to meet once a need to be aware of what we are going through, week to practice what we had learnt and to spend how we feel, and what our limits are. […]. If we some time together.” (FGD2) know our needs and limits in-depth, we can avoid complaining and self-compassion. […] Doing so, I Overall, informers reported being satisfied with the have managed to lower the medication by half professionals’ performance. However, participants being proactive and energetic, even not feeling from the second FGD questioned communication well.” (FGD1) skills, specifically when practising physical activity. “I am in pain from the moment I get up. I know that “They worked with goodwill; I can tell. The problem the pain is not going to disappear, but I try to avoid it was that they insisted too much on ‘walk, walk, walk’. somehow. So, I keep taking my medication, and I try INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING 7 to take short breaks and rest if I feel tired. I also “Currently, women relate more and more to each practice physical activity regularly. I started swim­ other. And from these exchanges, you can conclude ming, and I go to the sauna and the jacuzzi. that we are the real family pillar [.]. I spent my whole Honestly, I am doing very well now. I try to do it life taking care of others […]. So then you understand every day for at least one hour.” (FGD1) that we carry a burden that is very difficult to deal with. I am not surprised what is happening to us Additionally, participants considered the MCI as an considering the accumulated stress in our bodies.” eye-opening experience given the alternative non- (FGD1) pharmacological treatment strategy offered. “The problem of our generation is that we were “Participating has helped me out to enhance as I had taught to shut up. Around my 40ish, a woman told the chance to get what I needed. And then, when it me once: ‘you were born in the time of the mutes’. I finished, I knew what another kind of healthcare I had was astonished. Then she asked me: ‘Have you ever to look for. In other words, this programme opened answered your parents unproperly?’ ‘No, and I am new doors for me.” (FGD1) also very cautious with my children’, I said. ‘Now you see that you belong to the voiceless times?’, This experience’s benefits have proved to go she replied. […] But when you get to a certain age, beyond the symptomatic relief of FMS, offering your temper comes out like a boiling pot, and no one will ever be able to stop it. Once it arises, no one can patients a new perspective on the health-disease pro­ do anything about it anymore.” (FGD2) cess. The informers emphasized the acquisition of self- understanding, self-control, and self-management of the syndrome. 3.3 Domain 3: users’ opinions about the MCI “In my case, I have noticed self-help improvement, format and framework learn how to help myself […] I have managed to get Theme 3: “Correct but limited”. to know my problem so deeply that now I can say to FMS: “I am the boss, not you”. Do I still have pain? Informers from both FGDs claimed that the pro­ Absolutely […] But even so, I have managed to gramme timeframe was not enough to cover in-depth reduce my medication which means a better health all its contents and offer them time to work on their status. […] First me, then me, and always me. Here is suffering. my conclusion.” (FGD1) “It was insufficient … Not for professionals’ quality. “You cannot get rid of the pain, but you can learn […]. Each participant has her/his needs, and there how to control it.” (FGD2) was not enough time to dedicate to everyone. That is why it was not enough.” (FGD1) Patients realized that FMS’s psychological implica­ tions do not make it less real or tangible in their daily “The problem was the lack of time to delve a little deeper into the different topics. Moreover, because suffering physically, emotionally, and socially. Indeed, each person had things to say and issues to share, informers accepted that psychological well-being is and there was not enough time for everybody.” essential to symptom management, as experienced (FGD1) during the intervention programme. “I believe that a little more quantity would guarantee “The doctors told me that I had nothing. So, what can more quality. Extending the timetable will provide you do with that answer? Even though all your body better quality over time.” (FGD2) hurts, you do not know where to go … I was told it was all psychological. But no matter how psychologi­ Regarding the group approach, informers showed cal it can be, it hurts me … ” (FGD2) acceptance, acknowledging its benefits but also remarking its drawbacks. “I have been thinking about all the medication that I am taking, and I would like to cut it all down as I “In my opinion, the group approach has been very found that this condition is more about your emo­ helpful. We have been incredibly brave dealing with tions … I have experienced that when I have pro­ this condition every day, this backpack that … and blems, or I feel upset, I feel physically worse […] So, I we needed to learn to get rid of things that we carry believe that treating our psychological needs can inside the backpack. It was very important and bene­ actually help us more than any medication.” (FGD1) ficial as we could identify ourselves with our collea­ gues’ suffering so that I no longer felt alone again.” In resonance with the mentioned benefits, this (FGD2) intervention programme has contributed to awaken­ “The problem with large groups is that … if all the ing participants about gender disparities in health and members of the group talk, then you are suddenly the socially constructed roles of men and women. run out of time.” (FGD2) “I firmly believe that as women, we have much more “But the good thing with large groups is that you can burden than men to cope with all kinds of situations find plenty of different scenarios. Some people have in life. […] It is evident for me that women make fibromyalgia terribly, and some others manage it bet­ much more effort in daily life than men.” (FGD1) ter. Some people already accepted this condition, and 8 V. M. ARFUCH ET AL. some others are still in process. Therefore, you can “When you do not know how to explain to him why learn about each experience and keep what better you feel bad … sexually. But we should make this suits you.” (FGD2) clear to the people we live with. Sometimes, it is not because we do not want to; it is just because we “In my case, I have many health issues. Therefore, cannot. And this is something very complicated to listening to my partners’ problems make it worse for be understood and be explained.” (FGD1) me. […] Sometimes, the group could make me feel overwhelmed due to the emotional burden it entails.” Accordingly, there is a scope for further clarification (FGD1) about pharmacological treatment. Informers Additionally, participants proposed including the expressed doubts and confusion regarding its efficacy, family and general practitioners in the sessions in specificity, side effects, and administration. order to inform them about the characteristics of Furthermore, a trend towards self-medication and this condition, the related suffering, and patients’ self-administer treatment without professional gui­ real health needs. dance was observed. Besides, participants expressed disbelief about the effectiveness of the pharmacolo­ “I do not know how this could be managed to inform gical approach. family members about our suffering and what we are going through. Maybe they should be invited to a “The presentation of this issue was very light and session […]. We need them to be aware of the con­ superficial, and we ended up with a ton of doubts.” sequences of this condition and our daily fight to (FGD2) cope with it.” (FGD1) “We lack information about medication because they “I think that a family member should attend the just talked about it in general during the course, and meetings, and especially those who are incredulous then a little bit about anxiolytics and antidepressant.” so that they comprehend why it hurts so much even (FGD1) when you do nothing. They usually say: ‘If you are doing nothing, you should not feel pain.’ And it “I have been taking pills for almost 19 years, and now makes sense that they cannot find it a logic, but I am developing a drug allergy. I honestly I feel worse sometimes it can be tough for us to explain it ade­ and worse. I wish there were something more nat­ quately.” (FGD2) ural.” (FGD2) “To include general practitioners into the sessions to Participants from the first FGD also suggested make them comprehend the problem of their improving memory and nutrition sessions since they patients […]. I was diagnosed recently, but I have found them shallow. been twelve years with this pain visiting several doc­ tors without an accurate response. That is not nor­ “Another topic that has not been properly discussed mal.” (FGD2) during the programme is memory.” (FGD1) “In my opinion nutrition is essential, but unfortu­ 3.4 Domain 4: users’ opinions about the MCI nately, we did not get any special diet or food guide­ thematic content lines from this course.” (FGD1) Theme 4: “Relevant topics but psychological support As mentioned throughout the results, informers should be reinforced”. emphasized that the psychological component is cru­ Towards health education, sexuality was men­ cial when living with FMS and demanded regular tioned as a relevant theme briefly explained during access to this type of treatment as part of the UCC. the intervention programme. Informers from the first Overall, participants highlighted the coping skills FGD showed concern about coping with FMS in their acquired during the programme. Nevertheless, they sexual life and communication with their sexual part­ expressed the need for including a therapy group ners. Indeed, the interpretative analysis revealed par­ with a psychodynamic approach to work on their ticipants´ veiled worry about the side effects of emotional issues and psychological suffering in addi­ medication on sexual libido. tion to cognitive-behavioural techniques. The inter­ pretative analysis showed that they also need to be “When we talked about sexuality, it was all speedy, heard and express their feelings and concerns in a inhibited and shyly. We could not speak freely about it. For example, in my case, my husband does not therapeutic context and not exclusively educational. understand that I do not feel like having sex lately According to their experiences, the intervention pro­ […]. But I am the one who has the problem, it’s me … gramme did not provide the appropriate framework I just can’t because I am over medicated, I am ner­ for it. vous, I cannot stand to be touched … and he cannot comprehend me. We are in serious trouble. I think “About the psychology sessions, it would be helpful if these issues should be addressed properly in the you could organize groups of 10–12 people, once a programme, among other things. Sexuality was a month, and led by a psychologist to work out on subject that we saw very quickly, very quickly, very mental health issues instead of just give us some quickly, as well as the medication matter […].” (FGD1) guidelines.” (FGD1) INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING 9 Finally, informers showed resistance to the metho­ do think that the programme could work on prevent­ dology implemented as it has been stated above ing deterioration. Trying to ‘anticipate’ what awaits us regarding physical activity. Even though some partici­ and work out on acceptance […]” (FGD1) pants reported they had incorporated exercise in their routines after the programme, others admitted that it 4 Discussion was impossible for them due to the pain and physical limitations. This study presents patients’ accounts about an MCI programme for FMS conducted in Catalonia´s primary “Well, the physio recommended us several exercises and stretches, but the thing is … you try to walk and care settings. Based on this valuable information, then you cannot move for two days. Even when you adjustments were identified to adapt the intervention try with water gym because … but then I am two or and increase its benefits. The results suggest that the three days that I am motionless.” (FGD1) informants’ expectations have been fulfilled thanks to “Let’s see, they gave us guidelines, and I do some the proposed multidisciplinary and comprehensive exercises at home. Well, I do the exercises, and I do treatment approach, allowing them to bond with not do them … Even if I am tired or for whatever people under the same health condition. reason, I try to do it anyway. […] And every ten days Consistently with another study, the FGDs revealed or so, I also take a physiotherapy session, which is patients’ dissatisfaction with the UCC and the need for truly helpful.” (FGD1) more effective and less harmful alternative strategies (Briones-Vozmediano et al., 2013). Even though FMS diagnosis may first concede 3.5 Domain 5: additional users’ improvement hope to patients, it becomes an empty promise, as proposals Boulton (2019) describes, since neither provides a final Theme 5: “Supporting material reorganization, social solution nor social legitimacy. Given the lack of a backing and prevention strategies”. diagnostic test, peers’ pain becomes a relief working Regarding the supporting materials, informers pro­ as a mirror, reflecting belonging and support, and posed delivering it in dossier format instead of giving representing living proof of FMS authenticity. The single sheets at the beginning of the programme, to more a peer suffers, the more FMS is proved, as said avoid losing relevant information and not attending a in the first informant’s quote. The group re-signifies session. the individual suffering transforming it into a mean­ ingful and valuable experience. Indeed, the group “Today I give you this sheet; tomorrow I will give you myth arises as an account for what cannot be medi­ that one; the day after tomorrow, this other one and so on. Suddenly you realized that you had missed a cally explained. It is a narrative construction that gives paper someday or you had lost it somewhere.[…] I meaning to an inexplicable phenomenon closing a think they should organize it better, at least deliver­ knowledge gap, raising a structure, and defining the ing this material all together by areas such as the group’s history and path’s edges. In other words, the gymnastic guideline, the psychological guideline, group effect consists of finding something familiar etc. […] Otherwise, we had to ask our colleagues for the missing sheets.” (FGD2) from something unknown, conferring a relieving and comforting explanation that is better than none Another emerging theme was the need for social (Nietzsche, 2003). Therefore, the satisfaction to the support, in terms of access for a financial benefit proposed MCI seems to lay in the symbolic efficacy specifically due to fibromyalgia diagnosis, for those (Levi-Strauss, 1978) of a socially constructed and unable to continue working actively or require early shared myth about FMS. Our results are in general retirement. agreement with Oliveira et al. (2019), on the repercus­ “For example, I would like that if you could support sions of interdisciplinary intervention for FMS women, with Fibromyalgia literacy to members of the medical about the group’s positive influence on changing board. Many people suffering from this disease do health habits and behaviours and its psychological not get any social benefit from it. In my case, I do support benefits. Furthermore, another study sug­ not have a pension, but I heard about people who do. gests that offering patients with alternative narratives But just a few. The majority of us do not have access could benefit their self-perception and lifestyle to it.” (FGD2) change (Hyland et al., 2016). Consequently, our results Finally, it was suggested to include prevention confirm that the group cohesion represented, in most strategies to avoid health status deterioration and cases, a facilitator to the MCI implementation, which personal autonomy loss in the long term. should be considered for future treatment designs. While expecting an improvement in symptomatol­ “I am very concerned about the future. […] I would like to be more autonomous as I get old, but of ogy, the MCI proved to cover a wide range of health course, I don’t want that … I don’t want to depend needs beyond physical indicators, as Bourgault et al. on anyone as much as possible. But about this point, I (2015) observed. Accordingly, participants adopted a 10 V. M. ARFUCH ET AL. new active role in their illness experience that expression therapy, showing promising results com­ increased autonomy and empowerment. In addition, pared to CBT. recognizing FMS frequency between peers played a Informants described FMS pain as disruptive, key role in patients accepting this disorder, prioritiz­ unpredictable, and ungovernable, interfering with ing and addressing their health needs. Hence, this daily life and interpersonal relationships. These find­ initial insight entailed the first step in their health ings extend those of Ashe et al. (2017), confirming processes. This finding mirrors a recent study FMS’s biopsychosocial impact. Pain suffering entails a (Tangen et al., 2020), concluding that pain acceptance subjective experience but subjectivizing insofar as it is associated with better functionality and fewer FMS challenges all the individual’s spheres. Total pain symptoms. copes with the body as a whole where, according to On the other hand, physical activity benefits for informants’ words, “everything hurts” without bound­ this specific MCI depend partially on participants’ aries or gradient. As a result, they feel frustrated when will in exercising afterwards what they have learned distinguishing FMS symptoms from other comorbid­ during the programme. Should not implement parti­ ities. This feeling of hopelessness could be accounta­ cipants self-management recommendations as part of ble, among other aspects, for patients’ seeking their lifestyle could become a barrier to educational disability health insurance, which excludes them programmes. Thus, informants might not have per­ from the social production system. ceived any significant symptomatic change, particu­ However, a health programme should encourage larly pain reduction, as they have probably not patients to rejoin the social dynamics and perform practised enough post-intervention. Some of the pos­ active roles. From this perspective, including relatives sible reasons could have been accessibility, lack of in the programme could promote healthier family social support, activity-induced pain, lack of motiva­ relationships based on comprehension and destigma­ tion, among others. However, our results are sup­ tization. Alameda Cuesta et al. (2021) explain that the ported by Merriwether et al. (2018), who observed ultimate aim of healthcare for FMS patients should be that lifestyle physical activity is positively associated to decrease vulnerability and exclusion. A family with function and fatigue but not pain. approach would also allow implementing a gender Nevertheless, considering FMS patients’ tendency perspective working on gender roles in the family to emotional lability and low pain tolerance threshold, group. Additionally, inviting reliable sexual partners it seems necessary to promote their enthusiasm and into the programme could help patients cope with commitment through reviewed tailored tactics sexual dysfunction (Granero-Molina et al., 2018). respecting their pace and encouraging physical According to the evidence, one of the side effects of work. A previous study (Larsson et al., 2020) reported antidepressants, commonly prescribed for FMS, is ser­ that adjusting exercises and the pace, avoiding over­ otonin overproduction associated with libido inhibi­ load, offering enjoyable activities, and creating the tion (Lorenz et al., 2019). Consequently, sexual climax right conditions were crucial factors when promoting could be seriously disturbed, which could frustrate physical activity. Future adjustments to the proposed pleasure and compromise couples’ sexual life and MCI should therefore consider incorporating a person- relationships (Matarín Jiménez et al., 2017; Romero- centred rehabilitation approach and adding extra Alcalá et al., 2019). physical training sessions to ensure a minimum of The present study contributes to detecting barriers continued and supervised exercise. and facilitators for implementing an MCI according to Overall, our results provide compelling qualitative participants’ appraisals. Even though this programme evidence for educational programmes oriented to must be tailored based on detected weaknesses in acquiring multiple skills to cope with FMS. The pre­ format and content, it offers a promising approach sented MCI has not been designed to replace the UCC to be incorporated in the UCC. but to reinforce it providing patients with a more holistic approach, including multidisciplinary and 4.1 Limitations non-pharmacological methodologies. Participants reported having been taught several thematic con­ In reference to the methodological limitations, these tents and strategies to reduce FMS impact on their study results are not generalizable, although the inter­ QOL. Nevertheless, an expressive psychotherapy vention programme can be considered a model approach has been suggested to help patients face experience replicable in other contexts. Attending psychological suffering and prevent voiceless, espe­ the nature of self-reported data, group effect, mem­ cially considering the total pain experience registered, ory, selection, or attribution biases could have which involves physical, spiritual, psychological, and affected the results. social suffering (Williams & Craig, 2016). For instance, In addition to the method shortcomings, any pre­ Lumley et al. () designed emotional awareness and liminary qualitative implementation study was not INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING 11 conducted for the proposed MCI. Moreover, the FGDs analysis results. Both FGDs expressed a positive sample only included those who consented to parti­ experience with the MCI programme, mainly related cipate in the qualitative study and had a high assis­ to the group cohesion effect. The global perception of tance record; therefore, overestimation bias could effectiveness indicates no substantial differences have been possible. Besides, the sample has no male between short- and long-term health benefits. representation due to women’s FMS hight-prevalence, Informants perceived an improvement in their QOL and since the only two possible men candidates did and highlighted the benefits of emotional, psycholo­ not accept participating in the qualitative study. gical, and social levels over the physical-symptomatic Therefore, they were no focus groups according control. Additionally, other health benefits were regis­ to sex. tered, such as reducing the medication, acquiring a Furthermore, the sample includes patients from healthier lifestyle, awareness of their health needs and only 7 of the 11 primary care centres of the region self-care, autonomy, and gender awareness. as the MCI groups performed in the rest of the centres Therefore, the MCI fulfilled users’ overall expectations did not meet the time inclusion criteria (a maximum about results and procedure. of 12 months of follow-up). Additionally, participants In closing, the informants accepted and valued the were Spanish and except only for one informant. Even MCI due to its holistic perspective, safety, health ben­ though two informants did not fulfil the attendance efits, and FMS legitimacy promotion. Although identi­ inclusion criteria (presenting only 66.7%), they were fied adjustments should be performed to cover recruited to join in the FGDs to compensate for pos­ patients’ real health needs, the proposed programme sible no-shows and guaranteeing sample variability. accomplished its main goal according to participants’ Finally, FGDs differ in the number of participants due appraisals requesting its continuation as part of to the eligible sample availability by follow-up criteria the UCC. and the COVID-19 outbreak, which impacted the recruitment process of the second FGD. Acknowledgments Regarding the data collection, no video recording was performed, and, consequently, the quotations All authors thank the contributions of the Institut Català de could not be presented identified by the informer la Salut, especially the Gerència Territorial Institut Catalá de but by FGD. Lastly, no external expert was included la Salut Terres de l’Ebre, the Direcció d’Atenció Primària de Terres de l’Ebre, and the Unitat de Sistemes d’informació de in the analytics triangulation processes since discre­ la Gerència Territorial Terres de l’Ebre. The support of all the pancies were solved by consensus. healthcare and non-healthcare professionals involved in implementing this study and collecting the data are appre­ ciated as well as the participation of FMS patients. 4.2 Strengths Among the strengths, this study has been drafted based on the literature and according to the consoli­ Funding dated criteria for reporting qualitative research This work was supported by Dr Ferran Foundation in 2017; (COREQ) (Tong et al., 2007) and the standards for and the Instituto de Salud Carlos III (ISCIII) in 2018 under reporting qualitative research (SRQR) (O’Brien et al., grant PI1800943, as part of the Health Strategy Action 2017–2020 within the National Research Program; the 2014). Implementation research guidelines have also Technical, Scientific and Innovation Research National Plan been considered (Brownson et al., 2012; Proctor et al., 2017–2020, and co-funded by the European Union ERDF 2009). Moreover, the recruitment strategy and the (European Regional Development Fund). VMA was awarded sample description were performed according to a PhD scholarship by the ISCIII in 2019 under grant FI19/ high-research standards to enrich variability and 00254. avoid biases. For the analysis process, two analytics triangulations were conducted involving three experi­ Clinical Trial registration number enced investigators. Methodologically, based on criti­ cal thinking, a hermeneutic interpretative analysis was This qualitative study is linked to the clinical trial number: NCT04049006 (ClinicalTrials.gov) implemented to assess the narratives in-depth. Finally, this study’s results provide a depth comprehension of patients’ live experience with FMS treatment, Disclosure statement strengthening primary care professionals’ understand­ No potential conflict of interest was reported by the author ing and daily practice. (s). 5 Conclusion Author contributions In summary, no significant contradictions were VMA, AB, CAM, RCA and AQG designed the study. VMA observed between the study groups in the thematic carried out the sample recruitment, was the interviewer in 12 V. M. ARFUCH ET AL. the FGDs, performed the thematic analysis, and wrote the Briones-Vozmediano, E., Ronda-Pérez, E., & Vives-Cases, C. manuscript’s draft versions, which all the other authors (2015). Percepciones de pacientes con fibromialgia sobre reviewed. AB was the co-moderator in the first FGD, and el impacto de la enfermedad en el ámbito laboral. AQG was the observer in both groups. 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