Dealing with fibromyalgia in the family context: a qualitative description study

Abstract

Headings purpose: Fibromyalgia (FM) is a chronic, nondegenerative disease with important limitations in patients. Its average global prevalence is 1.78%, and women are more affected than men (3:1). Due to the lack of objective diagnostic tools, it is a complex medical condition that is frequently unseen by patients’ relatives and doctors, which might nonetheless have a noticeable impact on the patient’s entourage.

Material and Methods: This qualitative descriptive study aimed to elicit family members’ views on how FM affects their lives. It was conducted in two community health centers (one rural and one urban) from the Sagunto Health Department (Valencia Community, Spain). We included seven focus groups with 41 family members. We analyzed the data gathered with an inductive thematic semantic analysis approach using NVivo 12 software.

Results: We identified four major themes: (1) fibromyalgia as a nosological entity or an invention that is always burdensome; (2) children and spouses as caregivers (or not); (3) adverse effects of fibromyalgia on the couple’s sexual life; and (4) harmful consequences of FM on the family economy. The findings showed a negative impact of the disease within the family context. Family members face complex and changing roles and difficulties when living with women with fibromyalgia.

Conclusions: Relatives’ better understanding of the disease, greater acceptance of new family roles, and improvement of patients’ work conditions are all interventions that may help reduce the negative impact of FM in the family context.

PRIOR PRESENTATIONS

• Vázquez Canales LDM, Aguilar García-Iturrospe E, and Pereiro Berenguer I. Impact of fibromyalgia in the family context. FISABIO Foundation Primary Care Research Journey, Generalitat Valenciana (Valencia, Spain). 25th November 2021. Awarded Best Research Project in Primary Care Year 2021.

• Vázquez Canales LDM, Aguilar García-Iturrospe E, and Pereiro Berenguer I. Qualitative approach in the impact of fibromyalgia in the family context. IV Autonomic Fibromyalgia Journey for professionals and patients. Organized by Sagunto Hospital (Sagunto, Spain). 15th May 2018.

• Vázquez Canales LDM, Aguilar García-Iturrospe E, and Pereiro Berenguer I. Research project about the Impact of fibromyalgia in the family context. National Spanish Conference about Family Medicine. Organized by the Spanish Family Medicine Society (Madrid, Spain). 6^th May 2017.

• Vázquez Canales LDM, Aguilar García-Iturrospe E, and Pereiro Berenguer I. Quantitative approach in the impact of fibromyalgia in the family context. III Autonomic Fibromyalgia Journey for Professionals and Patients. Organized by Sagunto Hospital (Sagunto, Spain). 2^nd October 2017.

Keywords:

• Fibromyalgia
• family
• family medicine
• primary care
• qualitative research

Introduction

Fibromyalgia (FM) is a chronic disease characterized by generalized musculoskeletal pain, sleep disorders, fatigue, and cognitive alterations [1]. Its prevalence is 1.78% in the world population, with regional variations of 3.3%, 2.9%, and 2.45% in North America, Europe, and Spain, respectively [2–4]. However, these figures vary in specialized literature. In 2017, Marques et al. suggested that the FM prevalence in the general population ranged from 0.2 to 6.6% in women; from 2.4 to 6.8%, in populations living in urban areas; from 0.7 to 11.4% in rural communities’ areas 0.1 to 5.2% and in special populations 0.6 to 15% [5]. According to Goldenberg [6], the prevalence estimates change significantly depending on the specific diagnostic criteria applied: adopting the criteria in use before 2010, the prevalence oscillates from 1 to 3%; if the criteria considered are those applied as of 2011, the FM prevalence is higher, from 4 to 6%.

Globally, the archetype of a patient with fibromyalgia corresponds to a female (3:1) who holds basic studies and is between 30 and 60 years old [2–4]. This profile has been observed in the US and Spain [3,7,8]. The etiopathogenesis of FM had not yet been defined, but is considered multifactorial and combines genetic and epigenetic factors [9–11]. Owing to the subjectivity of the symptoms and the absence of biomarkers, the diagnosis is fundamentally clinical [1,2]. Treatment is oriented toward symptom relief; however, it is not curative. Current clinical guidelines advocate multimodal treatment based on pain education, physical exercise, psychotherapy, and pharmacological treatment [1,2,8,11]. Although FM is not a degenerative disease, it entails alterations in the patient’s functional capacity, which causes difficulties in carrying out daily activities [12]. This causes high indirect costs derived from work absenteeism as well as direct costs for health services [13].

The prevalence of chronic diseases has continued to increase in recent years [14]. Most care is provided at home, and the family is affected by the arrival of a chronic disease in one of its family members [15]. Families try to create environments for the patient to have as normal a daily life as possible [16] and reorganize themselves to find and provide support for the patient, which is an actual family challenge [17]. Although the deleterious effects of various chronic diseases have been documented [18], the literature is still silent on how fibromyalgia affects family life. To fill this knowledge gap, we conducted this investigation guided by the following research question: What are the views of fibromyalgia patients and their relatives (spouses and children) about the impact of this chronic condition on their family life?

Methods

Research design and context

This qualitative descriptive study [19,20] was conducted in two community health centers of the Sagunto Health Department, Valencia Community, Spain: Puerto de Sagunto 2 (urban center) and Faura (rural center). The qualitative description methodology allowed us to obtain rich data on family members’ beliefs, attitudes, expectations, behavioral changes, and caregiver roles. The context in which the study was undertaken is justified, in addition to practical reasons (the first two authors are practicing family physicians in these two centers), by the fact that the Valencia Community is a Spanish region with a higher prevalence of fibromyalgia (3.7% in 2017) [3]. Prior fieldwork was granted ethical clearance by the competent institutional review board, the Sagunto Health Department Research and Ethics Board (2016_07_PI).

Participants

Following a purposeful sampling strategy [21], the participants in this study were women diagnosed with fibromyalgia, their spouses and children. A sampling maximum variation approach was adopted according to the age and whether the environment was rural or urban. The participants were recruited voluntarily during their regular visits to community health centers by clerical staff.

Data collection

We conducted homogeneous focus groups to gather empirical material [22]. Here, homogeneity pertains to the identity of relatives and, specifically forchildren, their age. We then conducted four types of focus groups: with patients, spouses, children older than 14-year-old, and children of 14-year-old and younger. After consulting a pediatric psychologist to refine the questions (both content and format) for the youngest participants, we developed four different interview guidelines (Appendix 1). The interview guidelines for the group of patients were pilot tested with a group of individuals suffering from fibromyalgia who did not participate in the investigation.

Finally, we conducted seven focus groups until data saturation was achieved. These group interviews involved 26 patients, five spouses, five children over 14-year-old, and 5 children 14-year-old and younger. They were facilitated by the first author with the support of the second author and conducted in the respective community health centers. Before starting the study, the participants signed an informed consent form and completed a short demographic questionnaire. Focus groups lasting between 60 and 90 min were recorded with the participants’ consent and were immediately transcribed verbatim.

Data analysis

We analyzed the gathered empirical material using an inductive thematic analysis approach [23]. After transcribing the audio files, and reading transcripts, we initially coded the empirical material with the support of the NVivo 12 plus software. A tree of codes was created, facilitating the follow-up of group discourse. Through subsequent iterations and discussions with the research team, abstract categories emerged, leading to the identification of final themes.

Results

The study included 26 women with fibromyalgia, with ages ranging from 33- to 70-year-old. The five spouses were men aged 42- to 56-year-old. Children’s ages ranged from seven to 21 years, with four girls and six boys. Table 1 shows the sociodemographic characteristics of the 41 participants.

Table 1. Participants – demographics.

Focus group	Number of people and gender	Age (years)	Current job	Level of studies
Group 1: Pilot	7 Women	38–65	4 Employees 3 Housewife	4 Graduate 2 Vocational training 1 University studies
Group 2: Urban < 45 years.	6 Women	35–44	5 Employees 1 Housewife	2 Graduate 3 Vocational training 1 University studies
Group 3: Urban > 45 years.	6 Women	46–63	3 Employees 2 Housewife 1 Retired	2 Graduate 2 Vocational training 1 University studies
Group 4: Spouses.	5 Men	42–56	5 Employees	2 Graduate 3 Vocational training
Group 5: Children < 14 years.	2 Girls 3 Boys	7 − 14	5 Students	3 Primary school 2 Secondary school
Group 6: Children >14 years.	2 Girls 3 Boys	15–21	5 Students	3 Seconday school. 2 University studies.
Group 7: Rural	7 Women	33–70	2 Housewife 2 Retired 3 Employees	2 Primary school 2 Graduated 3 Vocational training

Through analysis of the transcripts from focus group discussions, we identified the following four major themes: (1) fibromyalgia as a nosological entity or an invention, but always burdensome; (2) children and spouses as caregivers (or not); (3) adverse effects of fibromyalgia on the couple’s sexual life; and (4) harmful consequences of fibromyalgia on the family economy.

Theme 1 – fibromyalgia as a nosological entity or as an invention, but always burdensome

Patients’ thoughts on what other family members think about fibromyalgia can be grouped into two divergent stances. On the one hand, some of them believed that both their children and partners considered that the disease was real: ‘My son suffers when I have pain. He feels anxiety when he can’t help me’ (Participant 7, FG1). And:

My children have left their things and have been with me. When I had to go to the park, being very ill, I just left. Even if I was only sat down and my children were playing around. But if they saw me very ill, they said: ‘Okay, so we stay at home’. (FG2, Participant 1)

However, other women believed that their relatives viewed the disease as a product of their invention. In this case, the lack of credibility could sometimes be accompanied by insults and humiliation, due to the relatives’ lack of understanding of the disease: ‘When I go to bed, my husband tells me: You look like an 80-year-old grandmother. You need help for everything. Without me you’re nothing’ (Participant 4, FG 2). And:

Well, my husband compares me to all the women he sees on the street when we go out in the morning. ‘The street is full of women working, one going up, the other going down…’ He tells me that I have become lazy. One day he even said to me: ‘Why don’t you die? You are one more expense’. You are a hindrance. (FG 3, Participant 4)

However, some participants disclosed that a lack of credibility and support within the family led them to separate themselves from their partners.

We have been living under the same roof and each one in a room. We have been like this for five months to the point of separating because it did not work at all. Cohabitation and fibromyalgia have influenced this. (FG2, Participant 3)

The spouses participating in this study rather disclosed a limited knowledge of the disease and shared feelings of powerlessness, anger, and burden: powerlessness for not knowing how to help their partners; anger for having to abandon activities that they liked to do; and burden, especially when the patient is in the outbreak since they had to assume more responsibilities at home: ‘When it is bad, I have had to stop running, being with my friends… I have stopped traveling; I have stopped leisure activities’ (FG 4, Participant 4).

The theme of leisure is completely forgotten for me because you do not know how she will be the next day. You stop traveling, going out… What influences me psychologically the most is when she is worse, you cannot avoid it affecting you and you feel dejected or angry. (Participant 3, FG 7)

Most children who participated in this study knew that their mothers had fibromyalgia and were aware of the disease. They were affected by the disease, especially during the outbreaks, when they felt worried and stressed. This was observed in all children regardless of their age: ‘Well, many times when she is bad, she starts to cry, and then I go into my room and throw myself on the bed and I start crying too. But when she is happier, then I get happy too’ (FG 5, Participant 3).

As was the case with the spouses, most claimed that they had to abandon social and leisure activities, particularly when their mothers were experiencing an outbreak:

Well, maybe, I don’t know, I could be sleeping, and well, no, I get up and go with her wherever she needs to be. Maybe I can go out there with my friends, well, no, if I need to help her, I do not mind going and helping her for whatever it takes. (FG 6, Participant 3)

This situation burdens them with more responsibilities at home, especially when the father does not do so: ‘For example, I help her scrub the house or vacuum’. Because it comes out to me. I see that it is difficult for her to get up and so I tell her: ‘Calm down, mom! I will do it’ (FC 6, Participant 2).

Theme 2 – Children and spouses as caregivers (or not)

We asked the spouses who were the main caregivers of the patients. We gathered different answers to this question, although several of the participants mentioned that they used to collaborate on housework and childcare to avoid these family duties being done by patients: ‘I do not do more than I usually do because she directly… I do cook, go shopping. I cannot bring the kid [to school] because of my work, but when I am on vacation, I usually take him’ (FG 5, Participant 3).

Many of them did not identify themselves as the main caregiver: ‘Unfortunately she is alone. Unless sporadically I have gone to assist her’ (FC 4, Participant 1). And: ‘Maribel, my sister-in-law, always… As soon as she finds out, she is always there. And then her mother usually passes by…’ (FC 4, Participant 2).

However, the patients’ and children’s views of the caregivers were different. Older children identified themselves as their primary caregivers, especially if they were older daughters. For them, their fathers could help more than they did: ‘I think my father could do more than what he does. He complains about how bad she is, how… Such, such… But he does nothing’ (GP6, Participant 3).

In the focus groups of patients, we identified a clear divergent view of the main caregiver. Conversely, some did not identify anyone because they did not like to feel sick, or none was close to them to take care of: ‘Nobody, but because I do not allow it. I do not want anyone to take care of me’ (GP 7, Participant 5). Nonetheless, many identified a member of their family, mostly a woman–that is, a daughter–of their mother or sister.

The one who has been helping me in everything and the one who has taken me everywhere has been my daughter. She is the one that I have always seen sad. For seeing me [how I am], for not being able to do anything, for taking me to the doctors …. (GP 7, Participant 3)

Theme 3 – Adverse effects of fibromyalgia on the couple’s sexual life

Patients and their spouses agreed that sexual life was significantly affected by having received a diagnosis of FM. Patients disclosed several reasons for a decrease in sexual intercourse, such as the use of antidepressants, which usually cause anorgasmia and decreased libido; age and menopause in those over 45-year-old; and dyspareunia. Most felt guilty about not being able to satisfy their partners, especially younger women; however, others wanted to avoid sex:

I do not feel like having orgasms. Not me alone. For me, if sex died forever, I would not miss it. For me, the easiest thing would be to live with him, and that is it. That I did not have to… Forget that sex exists. I have reached that limit. (FG 2, Participant 6)

and:

The treatment takes away your desire, because I talked about with my GP, and she said to me that it was because of the treatment… My husband feels guilty for not making me reach orgasm. But boy, it is not you! It is me who cannot get there! I take a lot of medication. (FG3, Participant 3)

While most spouses also stated that their sexual relationships have been affected, they considered that this was not only due to the disease but also the children and the years they had been in relationship. Although they wanted otherwise, some even accepted the sexual life that they had.

Man! It sure is. Quite yes. Because if she is in pain, you are not going to force the situation. It also influences having a small child. And it all comes together. It is not something I care about. (FG 4, Participant 5)

If She is not feeling well, you cannot force things to come out. Obviously, because of the disease, relationships decrease. You just accept it. There is nothing else. I’m fine with her. I have never considered leaving her. (Participant 2, FG 7)

Theme 4 – Harmful consequences of fibromyalgia on the family economy

Family members suffering from fibromyalgia also have deleterious consequences for the family economy. Many patients participating in this study had to close businesses, reduce the working day, change to more precarious jobs, abandon their working lives, or were fired due to comorbidities associated with the disease: ‘I have had to close the business. I studied hairdressing. I could not work as a hairdresser because I had to go to the hospital every now and then’ (FG 7, Participant 1). And:

I should be working, and I am not. Sometimes, I have been offered to work cleaning houses, and I cannot. I cannot even take care of my house. How am I going to start cleaning? I cannot do it over eight hours… Maybe I could work half a day, but on what? (FG 7 Participant 2).

Moreover, the Valencia healthcare delivery system offers few specific care programs for chronic pain; hence, many decided to pay from their pocket for private services: ‘I have spent a lot of money to go to private physiotherapy and many other things because of my disease’ (Participant 6, FG 2). And:

The disease has affected my own economy due to private medical expenses. I’ve been in many clinics for pain, I’ve tried many therapies out of the health system and everything that came out, I’ve tried. The expense has been a lot! (Participant 2 FG 4)

Curiously, spouses assumed, rather than complaining about, a decrease in income. They justified it by saying that if the patients are not feeling well, they must take medical leave. Some mentioned that they had to assume full economic responsibility by working double shifts to make up for the unemployment situation of their partners: ‘There has been a period, which logically has had an impact. Being sick, she cannot work. For many years, I have assumed everything. The house, the rent, the children. Everything’ (FG 4, Participant 5).

Discussion

Unlike those with other chronic diseases, people with FM can live a normal life and build families [24]. However, no previous studies have examined the effects of FM on family life. Therefore, the results of this study provide unique insights into the poorly understood phenomenon of family dynamics in individuals living with FM.

The major finding of this investigation is that, whereas FM is characterized by the absence of ‘objective’ signs–which makes family members to have serious difficulties understanding the condition–and the ‘subjective’ lived experience of variety of symptoms, the disease has a major and long-lasting repercussion on the patient’s family day-to-day life. The study documents that this backlash manifests in three major spheres of the family: the need for a caregiver, the sexual life of the couple, and family finances.

As in any chronic disabling disease, the figure of the main caregiver appears in the family context, and with it, the family roles are modified [25–28], which is not always well accepted. In contrast, patients themselves feel guilty. However, spouses and children may feel angry, culpable, and annoyant. These feelings may be explained by inadequate negotiation and prioritization of the new roles to be taken by different family members [29]. As has already been documented, the expression of anger in some spouses seems to be present in men when they feel incapable of tackling a problem or are unable to acquire a new role [29].

The patients identified the main caregiver in the female family context as daughters, sisters, or mothers. Although the study was conducted in a cultural context that privileges the feminization of caregivers [30], this is usually the case elsewhere when caring for patients with other chronic diseases, such as dementia or cancer [31,32]. However, some participants did not identify anyone from their family as entouraged as a caregiver. This could be explained by the fact that women seem to experience a transitional period between ceasing to become primary caregivers and asking for help [33]. In other words, these women experience a conflict of roles. On one hand, they keep experiencing the social obligations and expectations of the active domestic role traditionally assigned to them. Whereas, on the other hand, they also live a more passive role as patients, which implies letting themselves be helped and delegating obligations [33]. Both women and their relatives assume that they should behave as usual (yet playing the role of ‘superwoman’) instead of women taking time to rest and being dependent on their relatives [33,34]. It has been reported that women with FM do not usually like to ask for help and do not like to feel dependent on or disturb the family dynamics [33].

Children find it difficult to serve their mothers as caregivers. Current evidence suggests that it is difficult for them to harmonize their unexpected care responsibilities and the impact of growing up with a mother suffering from a chronic illness [35]. However, research has also identified more beneficial consequences of the need to assume the role of a caregiver during childhood in terms of better self-esteem, maturity, identity, and closer relationships with parents, an experience that might better prepare them for the future [24,35].

Notably, the spouses participating in this study did not identify themselves as the main caregivers even though they had adapted their lives to take care of their partners. Stopping leisure activities and devoting more hours to housework are the main adaptations that they must make. Theories of masculinity and caregiving reveal that men experience sex-specific difficulties related to caregiving, which is why they often do not identify as caregivers [29,36].

The way in which each family deals with the reality of one of its members suffering from FM and how they will take care of the patient will depend on a variety of individual, socioeconomic, cultural or ethnic circumstances [37,38]. In any case, because of the required family reorganization of roles, living with FM entails significant social isolation, for the patient as well as the entire family [24]. This study also highlights the impact of living with FM on the sexual lives of couples, especially younger couples. The women reported dyspareunia, musculoskeletal pain, decreased lividness, and anorgasmia. These symptoms, which might be associated with menopause and age, are not unusual in this disease, as revealed by prior studies carried out in women with FM [39,40]. García Campayo notes that FM affects the initial stages of the disease; however, over the medium-to-long term, spouses eventually accept a new sexual life [41].

The third major deleterious effect of FM on family life is family financing. For most of the women participating in the research, their jobs were one of the main activities in their lives, and they were resistant to leaving the labor market. However, due to the symptoms experienced, many left their jobs because of their inability to perform their usual tasks, as other studies on FM have shown [42–44]. Patients then face unemployment or must change jobs to better adapt their labor activities to their medical conditions. However, this often results in lower salaries. Briones et al. [45] suggested that adapting their usual jobs could enable patients to stay in the labor market longer, reducing economic losses for the family. Some partners of the patients looked for a new job or doubled their hours to compensate for economic losses if the patient had no income. Nevertheless, maintaining a work activity compatible with the evolution of FM is of great help for family finances as well as for patients to avoid social isolation and reduce the impact of the disease on the family as a whole [44–46].

As with any other empirical investigation, this study had certain limitations. For instance, although we could include men diagnosed with fibromyalgia, we decided not to do so because of the very low number of diagnosed male patients, both in the research setting and in the literature on fibromyalgia: 0.29% [47]. In total, we interviewed 26 patients. However, not all of them lived with their spouses. Five women lived with their children due to divorce or widowhood, seven spouses could not participate due to work schedules, and seven refused to participate due to a lack of belief in the existence of this disease. We could then understand that those who finally participated in the focus group were more sensitive to their partners’ medical conditions and that the negative effects of FM on couples’ lives were underestimated. It seems obvious that The five husbands who participated in the focus groups did not comply with the criteria for maximum variation sampling. This is a limitation of this study. Further research is necessary to better understand the role of spouses in family contexts.

Finally, although we considered participants living in two different types of communities (rural and urban), the study was conducted in a single geographical area in a developed Western country. The effect of FM on families living in different social, cultural, and economic contexts may vary.

In conclusion, this study has allowed the generation of new knowledge about how families live their day-to-day lives when the mother has been diagnosed with FM. The negative impact of the disease on all family members was revealed. To some extent, family members must adapt to deal with this chronic condition. Modifying family roles can deeply affect the couple’s life and impact family finances. This work will help family physicians better understand the repercussions of FM in the family environment. Future research on FM remains essential, aiming to enhance our understanding of the disease’s development and causation, as well as to determine the optimal strategies for managing symptoms within the family context, including changes in family roles, especially in children.

Acknowledgments

We would like to thank all patients and their families for their collaboration in this study. They were willing to share their experiences and insights with others. Without them, we would not have done the same.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Appendix 1.

Focus group interview guidelines

Interview guide for patients.

Project title. Dealing with Fibromyalgia in the Family Context: A Qualitative Description Study

Opening statement:

Thank you very much for accepting to participate in this focus group. Please tell us who you are, and what are the reasons why you have accepted to participate in this focus group as a patient with fibromyalgia. We would like to analyze the impact of fibromyalgia in the family context.

During this focus group, I will therefore ask questions about these issues, and facilitate the conversation among you. There are no good or bad answers; we are only looking for you to share your ideas with researchers with the aim to improve the knowledge about fibromyalgia.

The session will be digitally recorded, and [assistants’ names] will also be taking notes to make sure we capture all your ideas during the conversation. I remind you that what will be discussed here will remain confidential, and we guaranty anonymity of all of you as participants in this study.

Do have any question before we begin?

Introductory questions:

1. What is fibromyalgia?

2. Could you define your disease?

Transition questions:

1. Do you remember when you received the diagnosis of fibromyalgia? How did you feel about it?

Key questions:

1. How do you think fibromyalgia affects your children?

2. How do you think the disease affects your partners?

3. Have you considered separating because of your illness?

4. How has fibromyalgia influenced sexual relations?

5. How has fibromyalgia influenced sexual relations?

6. Do you think that the disease has influenced your economy?

7. When you are in the outbreak, who takes care of you?

Ending questions:

1. ALL THINGS CONSIDERED QUESTION: “This question asks participants to reflect on the entire discussion and then offer their positions or opinions on topics of central importance to the researchers”. Question: Of all the issues we have discussed today, what is the most important to you?

2. SUMMARY QUESTION: “After the brief oral summary”. Question: Is this an adequate summary of the discussion held?

3. FINAL QUESTION: “The moderator reviews the purpose of the study and then asks the participants”. Questions: Have we missed anything? Is there anything else we have not discussed yet that you think is important to know about?

THANK YOU VERY MUCH!

Interview guide for spouses.

Project title. Dealing with Fibromyalgia in the Family Context: A Qualitative Description Study

Opening statement:

Thank you very much for accepting to participate in this focus group. Please tell us who you are, and what are the reasons why you have accepted to participate in this focus group as a spouse of a FM patient. We would like to analyze the impact of fibromyalgia in the family context.

During this focus group, I will therefore ask questions about these issues, and facilitate the conversation among you. There are no good or bad answers; we are only looking for you to share your ideas with researchers with the aim to improve the knowledge about fibromyalgia.

The session will be digitally recorded, and [assistants’ names] will also be taking notes to make sure we capture all your ideas during the conversation. I remind you that what will be discussed here will remain confidential, and we guaranty anonymity of all of you as participants in this study.

Do have any question before we begin?

Introductory questions:

1. Do you know what is the fibromyalgia? Could you give a definition?

Transition questions

1. Do you think that fibromyalgia is a mental and physical illness? Do you think it’s just psychic? Do you think it is not a disease?

Key questions:

1. How has fibromyalgia influenced in your life? Do you change your life?

2. When she has an outbreak, do you help with the housework?

3. Have you ever considered separating due to your partner’s illness?

4. Do you think that your sexual life has changed because of the disease?

5. Has your partner’s illness affected the household economy?

6. When she has an outbreak who takes care of her?

7. Does the disease affect your children?

8. Do you think children mature before their time due to their mother’s illness?

Ending questions:

1. ALL THINGS CONSIDERED QUESTION: “This question asks participants to reflect on the entire discussion and then offer their positions or opinions on topics of central importance to the researchers”. Question: Of all the issues we have discussed today, what is the most important to you?

2. SUMMARY QUESTION: “After the brief oral summary”. Question: Is this an adequate summary of the discussion held?

3. FINAL QUESTION: “The moderator reviews the purpose of the study and then asks the participants”. Questions: Have we missed anything? Is there anything else we have not discussed yet that you think is important to know about?

THANK YOU VERY MUCH!

Interview guide for children 7-14 years.

Project title. Dealing with Fibromyalgia in the Family Context: A Qualitative Description Study

Opening statement:

Thank you very much for accepting to participate in this focus group. Please tell us who you are, and what are the reasons why you have accepted to participate in this focus group as child of a FM patient. We would like to analyze the impact of fibromyalgia in the family context.

During this focus group, I will therefore ask questions about these issues, and facilitate the conversation among you. There are no good or bad answers; we are only looking for you to share your ideas with researchers with the aim to improve the knowledge about fibromyalgia.

The session will be digitally recorded, and [assistants’ names] will also be taking notes to make sure we capture all your ideas during the conversation. I remind you that what will be discussed here will remain confidential, and we guaranty anonymity of all of you as participants in this study.

Do have any question before we begin?

Introductory questions:

1. Do you know why you are here?

2. What is fibromyalgia? Could you define the disease of your mother in your own words?

Transition questions

1. How did you feel when you knew the diagnosis of your mother?

Key questions:

1. Do you see your mothers cry?

2. Do you stop doing things to be with your mom?

3. What things do you help at home when mom is sick?

4. How do you feel when you see that mom is sick?

5. Do you think that at some point you have been able to fail a subject because mom was sick?

6. Do you have pain in some parts of your body as your mother?

Ending questions:

1. ALL THINGS CONSIDERED QUESTION: “This question asks participants to reflect on the entire discussion and then offer their positions or opinions on topics of central importance to the researchers”. Question: Of all the issues we have discussed today, what is the most important to you?

2. SUMMARY QUESTION: “After the brief oral summary”. Question: Is this an adequate summary of the discussion held?

3. FINAL QUESTION: “The moderator reviews the purpose of the study and then asks the participants”. Questions: Have we missed anything? Is there anything else we have not discussed yet that you think is important to know about?

THANK YOU VERY MUCH!

Interview guide for children 15-21 years.

Project title. Dealing with Fibromyalgia in the Family Context: A Qualitative Description Study

Opening statement:

Thank you very much for accepting to participate in this focus group. Please tell us who you are, and what are the reasons why you have accepted to participate in this focus group as child of a FM patient. We would like to analyze the impact of fibromyalgia in the family context.

During this focus group, I will therefore ask questions about these issues, and facilitate the conversation among you. There are no good or bad answers; we are only looking for you to share your ideas with researchers with the aim to improve the knowledge about fibromyalgia.

The session will be digitally recorded, and [assistants’ names] will also be taking notes to make sure we capture all your ideas during the conversation. I remind you that what will be discussed here will remain confidential, and we guaranty anonymity of all of you as participants in this study.

Do have any question before we begin?

Introductory questions:

1. Do you know what fibromyalgia is?

Transition questions

1. How did you feel when you knew the diagnosis of your mother?

Key questions:

1. How do you feel when your mother has a pain crisis?

2. Do you stop doing things to take care of your mother?

3. When she is in a pain crisis, have you taken care of her medication?

4. Does any of you worry a lot about the health?

5. Do you have similar symptoms like your mother?

6. Do you think that you have matured before your time due to the illness of your mother?

7. What do you think about the behavior of your father regarding the disease of your mother?

8. Do you think your father supports your mother in everything she needs?

9. Have your parents ever considered separating due to your mother’s illness?

Ending questions:

1. ALL THINGS CONSIDERED QUESTION: “This question asks participants to reflect on the entire discussion and then offer their positions or opinions on topics of central importance to the researchers”. Question: Of all the issues we have discussed today, what is the most important to you?

2. SUMMARY QUESTION: “After the brief oral summary”. Question: Is this an adequate summary of the discussion held?

3. FINAL QUESTION: “The moderator reviews the purpose of the study and then asks the participants”. Questions: Have we missed anything? Is there anything else we have not discussed yet that you think is important to know about?

THANK YOU VERY MUCH!