ORIGINAL RESEARCH

Participatory and interdisciplinary care strategy to families of people with fibromyalgia

Lina Márcia Migueis Berardinelli^I; Larissa Pereira Costa^II; Irma da Silva Brito^III; Vera Maria Saboia^IV

^I Nurse. Associate Professor, Postgraduate Program at the Nursing Faculty of the State University of Rio de Janeiro. Brazil. E-mail: l.m.b@uol.com.br
^II Nurse. MS in Nursing, Postgraduate Program at the Nursing Faculty of the State University of Rio de Janeiro. Brazil. E-mail: larissac_bj@yahoo.com.br
^III Nurse. Adjunct Professor, Postgraduate Program of the Nursing School of Coimbra. Portugal. Email: irmabrito@esenf.pt
^IV Nurse. Full Professor, Vice-Coordinator, Postgraduate Program of Nursing at the Fluminense Federal University. Niterói. Brazil. E-mail: verasaboia@uol.com.br
^V Extracted from the master's dissertation entitled: The family as a support network for people with fibromyalgia: interdisciplinary care strategies , State University of Rio De Janeiro, in 2017.

DOI: http://dx.doi.org/10.12957/reuerj.2017.30444

ABSTRACT

Objectives: to identify families' understanding about fibromyalgia, to describe changes in the family routine and to analyze strategies of care developed by family networks. Method: qualitative and participative research, based on Paulo Freire's theory, with eight participants from an university institution of Rio de Janeiro. Data were coleected in 2016, using Talking-Maps and World Café. Data were submetted to content analysis. The study was approved by Research Ethics Committee (Protocol nº 1.587.664). Results: three categories emerged: Need for changes; Family organization; and Strategies of care. Conclusion: family understands that pain is a limiting factor and a triggering of the disease. Changes referred were related to family daily life and social interaction disorganization, leading to physical and psychological discomfort. Unity, presence and attention were described as strategies of care. Interdisciplinary mediation with participatory, reflexive and sensitive practices becomes important.

Keywords: Nursing; family relationships; chronic disease; fibromyalgia.

INTRODUCTION

Fibromyalgia (FM) is a frequent, complex and heterogeneous rheumatic disease in which there is a disorder in the processing of pain associated with other secondary characteristics.¹ Other authors complement that it is a syndrome of unknown etiology, characterized by permanent chronic diffuse pain, accompanied by other symptoms such as muscular rigidity, fatigue, headache, reduced physical condition, sleep disorder, cognitive dysfunction, anxiety, depressive episodes and presence of at least 11 points that are sensitive to palpation and pressure in the musculoskeletal system, called tender points.^2-4 Such a health situation can cause stress, changes in routine, altered body image and reduced quality of life.

The prevalence of this disease varies between 0.7% and 5% of the general population.⁴ In Brazil, the incidence is 2.5%, the majority being female, at a ratio of 8:1. Of this total, 40.8% belong to the age group from 35 to 44 years old; however, it may manifest in children, adolescents and the elderly.¹ In some European countries, fibromyalgia rates reach 10.5%. This condition is commonly observed in the clinical practice, being one of the main causes of rheumatologic consultations.

It is emphasized that FM is a chronic disease; it affects people physically, psychologically and emotionally and can be considered as a permanent life experience, causing losses and dysfunctions. Often, they are associated with other comorbidities that end up altering the social and professional daily life, which can lead to stress, re-adaptation, and changes in life expectancy.⁵ Such a burden may overwhelm a family member, who starts to undertake daily activities in the sick person's place. Other symptoms are also referred to as edema, paresthesias, abnormal urinary frequency, irritated colon syndrome, Raynaud's phenomenon, temporomandibular joint dysfunction, dysmenorrhea, extreme sensitivity to cold, eating disorders, obesity, metabolic syndrome and mood changes.^6-8

Such a disease demands a change in the dimensions of caring and goes beyond the Cartesian model, extending the praxis of interdisciplinary care beyond the physical body, involving different points of view, knowledge and sensitive pedagogical practices.⁹

The treatment should be elaborated in discussion with the patient, according to the intensity of their pain, functionality and their characteristics, taking into account bio-psychosocial and cultural aspects.

These aspects are essential for the healthcare network to be aligned with health policy recommendations for chronic illness, such as an effective embracement, care focused on the person and the family, continued care, programmed care, multiprofessional care, with the elaboration of a unique therapeutic project, regulation of the care network, matrix support, non-face-to-face follow-up and collective care, promotion of self-care, based on care lines and clinical guidelines, with risk stratification and permanent education for the professionals involved.¹¹

The interdisciplinary work favors participatory, collaborative, mutual respect and solidarity dynamics that can empower the sick person and their family. In this sense, the interdisciplinary group of the Laboratory of Physiology applied to Physical Education (LAFISAEF) of the Institute of Physical Education and Sports of the State University of Rio de Janeiro has received people who need these type of care and their respective families who are generally unaware and do not know how to deal with the syndrome and its comorbidities. In this interactive space, it is possible to reflect and debate with the subjects their health problems, identifying the deficits of self-care and their correction.¹¹

In this way, the family receives guidance, support and motivation. The interdisciplinary team, especially the nurses, should include the family member in the care process, encouraging the co-responsibility and partnership.⁶ This process is intrinsic to care, with mutual cooperation, development of skills and knowledge from dialogue, guidance, and permanent learning,⁹ in way that the participants are empowered and gain mastery over their lives and decisions.

In view of the above, it is questioned: What care strategies generate educational practices that are enlightening to people and families who experience fibromyalgia?

Therefore, the objectives of this study were: to identify the families' understanding of fibromyalgia, to describe the changes that have occurred, and to analyze the strategies of care developed by the family networks. Thus, this study⁵ is relevant because it contributes to the expansion of knowledge and care by the family, to the reflection of the professional practices in the interdisciplinary scope as well as to the studies of a participatory approach.

METHODOLOGICAL REFERENCE

In order to give theoretical support to the interdisciplinary group actions to the people and their families, we approach the Theory of Liberating Education with the intention of stimulating the family members, the sick people, and the staff to problematize their realities, in a critical and reflexive dialogue, based on respect and tolerance, causing these people to acquire new positions in the face of reality.¹²

The problematic pedagogical practice is based on the principles of dialogue, emancipation, freedom, transformation, and autonomy. These were the pillars used in the encounter with the families to make the participants aware of their right to be and to think freely, to be autonomous regarding their own knowledge as a means of transformation. ¹²

This way of approach considers and emphasizes the knowledge and experiences originated in the subjects of the action, because, thus, the educational process becomes more fruitful and more motivating of changes.¹³

In this theoretical aspect, the participatory research (PR) approach, which promotes the participation of the people, considers the social reality and recognizes the value of the contribution of each of them to the knowledge co-creation.¹⁴

The PR is defined as a methodological proposal inserted in a strategy of action that involves its beneficiaries in the production of knowledge; and the main objective is the transformation of the social reality and the improvement of the quality of life of the people involved.¹⁵

METHOD

This is a qualitative, participatory approach study. The scenario was the LAFISAEF. The interviews occurred between July 2015 and June 2016.

The LAFISAEF develops programs and projects aimed at people with chronic illness, especially those with fibromyalgia. The activities are developed by the interdisciplinary group (IG), composed by a physical trainer, a nutritionist, a doctor, a nurse, and a psychologist. The participating group (PG) is formed by the family of the sick people.

The study participants were eight family members of the fibromyalgia group. The inclusion criteria were: relatives of people with fibromyalgia, regardless of blood relationship, age, gender, ethnicity, and religion who showed interest in contributing to the study. People who were not able to participate in the group activities were excluded.

This research complied with the Resolution No. 466/12 of the National Health Council, which deals with the Guidelines and Norms Regulating Research on Human Beings,¹⁶ and the project was submitted to the Ethics Committee of the State University of Rio de Janeiro (UERJ) and its Opinion was approved under No. 1,587,664.

The production of data occurred in the meeting with the families by the adapted construction of the Speaker Map (SM). This instrument is characterized by a Dynamic of Creativity and Sensitivity that proposes a space for collective discussion in which the life experience is approached through an artistic production.¹⁷ The guiding question was: What do you understand as fibromyalgia? And it was answered only by family members and then discussed with the interdisciplinary group.

After the debate, the World Café (WC) technique was developed, it is based on relevant subjects and interest of the participants through a network of collaborative dialogue, with questions about the daily life. It is a technique that elicits relevant reflections, enabling the ability to establish meaningful dialogues.¹⁸

The WC approached the following questions: What has changed in the overall routine due to fibromyalgia? How do you cope with this illness? How can you help with the family life?

The SM data were organized, systematized and inserted in the text demonstrating the family's understanding about fibromyalgia. They were also organized and categorized, then the content analyzed according to Bardin's method, which is a set of communication analysis techniques.¹⁹ After the identification of the recording units (RU), the data were grouped by content convergence, originating three categories: Need for changes; The organization of the family; Care strategies.

To ensure anonymity, the participants were designated by the family letter F, listed according to the chronological order, F1, F2, etc. Subsequently, the results were interpreted based on the relevant literature.

RESULTS AND DISCUSSION

The data from this stage were originated from the meeting with the families, using the adapted Speaker Map and World Café techniques, and they will be presented in this order.

The understanding of the family about fibromyalgia

The SM allowed an unpretentious exposure, which opened space for dialogue and clarification about illness. The participants' answers were expressed in a random and informal way on their understanding about fibromyalgia.

Many reports were about the pain, which is the main limiting and triggering factor of the physical and psychic disorders of all people who experience fibromyalgia. It is possible to notice that most of the family members make this association even when they do not have the knowledge about the clinical condition.

This syndrome may potentiate feelings of helplessness, incapacity, depression and limit daily and work activities.^20-22

Such reports are confirmed in the literature and in scientific studies.^20-23 The chronic pain is characterized by a permanent alteration that is defined as an illness itself, permanent or recurrent, lasting more than three months.²³

The typology of the pain can be quite variable, in a singular way, like burning, stinging, weight, fatigue or even bruising. Another common situation is the report of the intensification of the pain due to changes in climatic conditions, such as cold or changes in air humidity, emotional tension or physical exertion. Such typology is described by other authors found in the literature on the subject.^16,20-24

Analysis of the findings of the World Café

From the production and categorization of the World Café data, three categories emerged as follows.

Need for changes

Emerging category of 186 RU, with the purpose of describing how the family is organized to help the family member that has fibromyalgia. The onset of the illness generates a situation of discomfort in the family context; however, there is the need to overcome problems and help the ill person, as explained below.

Through the testimonies, it is perceived that the daily life of the family starts to be organized in function of the illness and its treatment, usually constituting a moment of great rupture of the familial ties. Another fact referred by family members is the change in the work routine of people with FM.

For the family members, the work routine is affected by the pain and limitations of this pathology. The person who is overworked and stressed in the workplace also takes their professional problems to the family environment, causing disruptions, breaking their social network and bringing harm to their health.

The literature reports that many fibromyalgia patients are removed from work for failing to perform their work tasks with quality. These findings were confirmed in other studies, complementing that the process of illness causes a disorganization of the routine and consequent suffering for all those involved, as the previous responsibilities need to be maintained and added to the activities and financial demands arising from the illness. ^25,26

Regarding the removal from work activities, the literature draws attention to the process of intensification of the work and the constant need to overcome goals. This excessive stimulation causes an increasingly dangerous reduction of safety at work, causing greater vulnerability to diseases that can affect the worker.⁸

Moreover, many feelings are experienced in the family environment in the face of illness. Neither the patient nor their family knows for sure how to position themselves in the face of fibromyalgia, as the following reports show:

As we can see in the testimonials, the family feels powerless and has a great load of anxiety. Other findings corroborate this study, complementing the idea that the illness of a family member affects the whole family system, with a great risk of severely breaking the whole structure deeply, unbalancing its foundations if its members do not adapt to the disease and its treatment.²⁵

At the beginning, the daily life of the family is changed according to the disease and its treatment. The family experiences the disorganization of their routines and the suffering generated by the family disruption. Feelings such as uncertainty, impotence, threat, and feelings of an uncontrolled situation are also pointed out in other studies. ^25,26

This reorganization of routine is necessary because it brings to the sick person and their family network possibilities of coping. The reports of sick people are worrisome and moving because they express the pain as the greatest nuisance and the best representation of the disease, which takes away from these people the feeling of well-being and balance and exchanges these for moments of suffering. At the same time, they live in a world apart because they are always suffering, anxious, depressed and with difficulty in concentrating.

The organization of the family

This category emerged from 127 RU, with the purpose of describing how the family organizes itself to help the relative with FM. The onset of the illness generates a situation of discomfort in the family context. However, there is a need to overcome the situation to improve the aid relationships for the ill person, as observed in the following statements.

The testimonies show that the family network can find ways to reorganize itself to provide improvements to the daily lives of its members.

The meetings helped to draw the attention of families, bring them to reflection and re-signify the lives of the people. Significant changes and new forms of family organization are perceived in the context of the illness.

In this sense, the use of critical-problematizing pedagogy was necessary to have an approximation to the reality of the subjects, initiating the education from the life experience of each individual and provoking in them the desire for transformation.¹²

The testimonies reinforce the critical-problematizing pedagogy by mentioning that education starts from the life experience of each individual. Moreover, education must be an ongoing process of awareness and transformation of oneself and the world.¹³ Similarly, the literature points out that interventions directed at clients should invest in self-care actions, technologies and educational practices that promote the knowledge and access to information as essential for decision-making, developing social skills, aiming at empowerment practices ^27,28

This family re-adaptation should be assisted by an interdisciplinary team, with the nurse taking part in the orientation regarding the necessary resources to reorganize and in the joint construction of a care plan that offers support according to the group's demands.

Care Strategies

This category emerged from 56 RU, with the purpose of analyzing the care strategies that began to be developed by the relatives after the arrival of fibromyalgia.

It was observed, from the testimonies of the family members, that the illness caused some strategies of care as described below.

The family reports show that the family network creates strategies and starts to collaborate more in favor of care. The need for changes in coping with the illness has led to family disorganization and suffering for those involved, thus disrupting the daily family life. The previous responsibilities need to be maintained and added to other demands arising from the illness.²⁵

Therefore, the re-adaptation, the redefinition of roles and tasks for both the patient and the family is fundamental, being a process of mutual help in the family context and in the maintenance of the quality of life.^7,9,15

In this sense, the participatory approach is an effective strategy, causing individuals to identify their problems, analyze them critically and seek appropriate solutions, as reported in the following statements.

It is noticed that, in order to overcome the illness and lead a life with more quality, the family becomes more present and observant.

This perception is fundamental in the development of coping strategies, to deal with disabilities and to reorganize the daily life in the face of the illness. Generally, these strategies are influenced by social interaction, by the nature of the symptoms, from people's perception of themselves and the other's gaze, by all the personal characteristics and by the experienced context, and also by the interaction between all these factors. ^24-25

CONCLUSION

It was concluded that the study met the proposed objectives, finding in the group strategies the families' answers about the understanding of fibromyalgia, as well as the changes generated by the illness and the adopted care strategies.

Each family member expressed their reality, the understanding of the illness and the repercussions in the everyday life based on their own experiences. For these family members, fibromyalgia is triggered by frequent pain. They reported that the intensity of the pain interferes with the daily life, causing moodiness, tension, stress, irritability, psychic suffering, and limitation, as corroborated in the literature.

Changes in the behavior were observed among the people in the family network from the detection of the disease, from fibromyalgia complaints, which are not well understood by the family, causing distancing. The changes in the family were related to leaving work, changing the routine of the house, the children, the schedules, the preparation of the meals.

In order to try to avoid setbacks, the family network starts to organize the daily life according to the limitations caused by the illness. The new organization creates possibilities to live better, even in the face of pain and malaise, but they need to unite to confront the illness.

The family regained bonds of affection and strengthened as its members adjusted their daily tasks, reworked their schedules and took turns in the tasks. It was also observed that the changes pervade the everyday, the personal life, the family life, the work routine and the social life.

To try to avoid setbacks, the sick person and their family begin to organize the daily life according to the limitations caused by the illness. The new organization creates possibilities to live better, based on the union of all to confront the illness. All this influences the family balance, which must be potentiated, preserved and supported with the help of the interdisciplinary team.

It is important to highlight that a limiting factor of the study was the small number of family members participating in it.

It is concluded that the family network and the ill people need to adapt and support each other, trying to organize the daily priorities, developing strategies of care from union, harmonization, and understanding.

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