Brazilian Journal of Pain
https://brjp.org.br/article/doi/10.5935/2595-0118.20180003
Brazilian Journal of Pain
Original Article

Characteristics and perception of social support by patients with fibromyalgia in Facebook

Características e percepção de apoio social por pacientes com fibromialgia no Facebook

Felipe Azevedo Moretti; Sandra Santos Silva; Claudia Galindo Novoa

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Abstract

BACKGROUND AND OBJECTIVES: Analyze the interactive behavior, characteristics, perception of social support, and interests of patients with fibromyalgia on online discussion groups.

METHODS: A participatory netnography has been conducted for 6 months on Facebook in order to keep track of a fibromyalgia community with more than 8,000 members. An electronic survey composed by a validated social support scale was sent to the members of the group. Another online survey was applied by the group coordinator in order to build the users' profile.

RESULTS: The online environment has often been indicated as the only place to get something off one's chest. Regular testimonials on social discrimination due to Fibromyalgia were recorded, coming from the family itself, from friends and even from health professionals. Patients' rights and new treatments are among the topics of greatest interest. The target group seemed to have a social echo, but it has difficulties to generate engagement among its members. Low social support was reported by most of the 444 respondents. However, many also criticized the group positively. There were 3,217 people who responded the survey applied by the coordinator: 97.5% female respondents, 86.2% were between 31 and 60 years old, 60.1% were diagnosed by a rheumatologist, 16.5% by an orthopedist, and 6.8% by a general practitioner. The five most unpleasant symptoms informed were: pain, anxiety, memory problem, irritability, and tingling.

CONCLUSION: New forms of online education and social support for fibromyalgia on online groups are relevant resources to be considered in patient care programs.

Keywords

Fibromyalgia, Social networks, Social support

Resumo

JUSTIFICATIVA E OBJETIVOS: Analisar o comportamento interativo, as características, a percepção de apoio social e os interesses de pacientes com fibromialgia em grupos de discussão online.

MÉTODOS: Foi feita uma netnografia participativa que acompanhou por 6 meses uma comunidade de Fibromialgia com mais de 8.000 membros no Facebook. Um inquérito eletrônico sobre suporte social com escala validada foi enviado aos membros do grupo. Outro questionário online para traçar o perfil dos usuários foi aplicado pela coordenadora do grupo.

RESULTADOS: O ambiente online foi apontado frequentemente como único local de desabafo. Registraram-se depoimentos regulares sobre discriminação social decorrentes da Fibromialgia - advindos da própria família, de amigos e, até mesmo, de profissionais de saúde. Direitos dos pacientes e novos tratamentos aparecem dentre os temas de maior interesse. O grupo acompanhado mostrou ter repercussão social, mas apresenta dificuldades para gerar envolvimento entre os membros. Baixo apoio social foi alegado pela maioria dos 444 respondentes. No entanto, muitos também criticaram positivamente o grupo. O questionário aplicado pela coordenadora teve 3.217 respondentes, a saber: 97,5% do sexo feminino; 86,2% com idade entre 31 e 60 anos; 60,1% cujo diagnóstico foi dado por um reumatologista, 16,5% por ortopedista e 6,8% por clínico geral. Os cinco principais sintomas mais desagradáveis citados pelos pacientes foram: dor, ansiedade, problema de memória, irritabilidade e formigamento.

CONCLUSÃO: Novas formas de educação online e de apoio social em grupos virtuais para fibromialgia são recursos relevantes a serem considerados em programas de atenção a pacientes.

Palavras-chave

Apoio social, Fibromialgia, Redes sociais

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Submitted date:
10/03/2017

Accepted date:
01/04/2018

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