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

References

• Palop V, Roth Damas P, Escude Á. Síndrome de fibromialgia. AMF Actualización en Medicina de Familia. 2022;18(8):434–445. https://amf-semfyc.com/es/web
   Google Scholar
• Sarzi-Puttini P, Giorgi V, Marotto D, et al. Fibromyalgia: an update on clinical characteristics, aetiopathogenesis and treatment. Nat Rev Rheumatol. 2020;16(11):645–660. https://www.nature.com/articles/s41584-020-00506-w doi: 10.1038/s41584-020-00506-w.
   PubMed Web of Science ®Google Scholar
• Cabo A, Cerdá G, Trillo JL. Fibromialgia: prevalencia, perfiles epidemiológicos y costes económicos. Med Clin. 2017;149(10):441–448. https://www.elsevier.es/es-revista-medicina-clinica-2-linkresolver-fibromialgia-prevalencia-perfiles-epidemiologicos-costes-S0025775317304773
   PubMedGoogle Scholar
• Jones GT, Atzeni F, Beasley M, et al. The prevalence of fibromyalgia in the general population: a comparison of the American college of rheumatology 1990, 2010, and modified 2010 classification criteria. Arthritis Rheumatol. 2015;67(2):568–575. https://pubmed.ncbi.nlm.nih.gov/25323744/ doi: 10.1002/art.38905.
   PubMed Web of Science ®Google Scholar
• Marques A, Santo A, Berssaneti AA, et al. Prevalence of fibromyalgia: literature review update. Rev Bras Reumatol Engl Ed. 2017;57(4):356–363. doi: 10.1016/j.rbre.2017.01.005.
   PubMedGoogle Scholar
• Goldenberg DL. Diagnosing fibromyalgia as a disease, an illness, a state, or a trait? Arthritis Care Res. 2019;71(3):334–336. doi: 10.1002/acr.23727.
   Web of Science ®Google Scholar
• Hulse ST, Stahlman S, Fedgo A, et al. Fibromyalgia: prevalence and burden of disease among active component service members, U.S. Armed forces, 2018. MSMR. 2020;27(11):8–14. https://pubmed.ncbi.nlm.nih.gov/33237792/
   PubMedGoogle Scholar
• Roth P, Floch Marín B, Sempere M, et al. Síndrome de fibromialgia. Guía Fisterra. 2021; [cited 2022 Oct 28]. Available from: https://www.fisterra.com/guias-clinicas/fibromialgia/.
   Google Scholar
• Siracusa R, Di Paola R, Cuzzocrea S, et al. Fibromyalgia: pathogenesis, mechanisms, diagnosis and treatment options update. Int J Mol Sci. 2021;22(8):736.
   PubMed Web of Science ®Google Scholar
• Serrat M, Sanabria-Mazo JP, Almirall M, et al. Effectiveness of a multicomponent treatment based on pain neuroscience education, therapeutic exercise, cognitive behavioral therapy, and mindfulness in patients with fibromyalgia (FIBROWALK study): a randomized controlled trial. Phys Ther. 2021;101(12):174. https://pubmed.ncbi.nlm.nih.gov/34499174/
   Web of Science ®Google Scholar
• Minerbi A, Gonzalez E, Brereton NJB, et al. Altered microbiome composition in individuals with fibromyalgia. Pain. 2019;160(11):2589–2602. https://pubmed.ncbi.nlm.nih.gov/31219947/ doi: 10.1097/j.pain.0000000000001640.
   PubMed Web of Science ®Google Scholar
• Carmen ULM, Ruiz Pérez I, Bermejo Pérez MJ, et al. Características clínicas y psicosociales de personas con fibromialgia. Repercusiones del diagnóstico sobre sus actividades. Rev Esp Salud Publica. 2005;79(6):683–695. doi: 10.1590/s1135-57272005000600008.
   PubMedGoogle Scholar
• Boonen A, Van Den Heuvel R, Van Tubergen A, et al. Large differences in cost of illness and wellbeing between patients with fibromyalgia, chronic low back pain, or ankylosing spondylitis. Ann Rheum Dis. 2005;64(3):396–402. https://pubmed.ncbi.nlm.nih.gov/15271773/ doi: 10.1136/ard.2003.019711.
   PubMed Web of Science ®Google Scholar
• World Health Organization. Noncommunicable diseases. 2022; [cited 2022 Dec 2]. Available from: https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases.
   Google Scholar
• Ory MG, Ahn SN, Jiang L, et al. Successes of a national study of the chronic disease Self-Management program: meeting the triple aim of health care reform. Med Care. 2013;51(11):992–998. https://pubmed.ncbi.nlm.nih.gov/24113813/ doi: 10.1097/MLR.0b013e3182a95dd1.
   PubMed Web of Science ®Google Scholar
• Årestedt K, Saveman BI, Johansson P, et al. Social support and its association with health-related quality of life among older patients with chronic heart failure. Eur J Cardiovasc Nurs. 2013;12(1):69–77. https://pubmed.ncbi.nlm.nih.gov/22457369/ doi: 10.1177/1474515111432997.
   PubMed Web of Science ®Google Scholar
• Whitehead L, Jacob E, Towell A, et al. The role of the family in supporting the self-management of chronic conditions: a qualitative systematic review. J Clin Nurs. 2018;27(1–2):22–30. https://pubmed.ncbi.nlm.nih.gov/28231630/ doi: 10.1111/jocn.13775.
   PubMed Web of Science ®Google Scholar
• Golics CJ, Khurshid M, Basra A, et al. The impact of patients’ chronic disease on family quality of life: an experience from 26 specialties. Int J Gen Med. 2013;6:787–798. https://pubmed.ncbi.nlm.nih.gov/24092994/ doi: 10.2147/IJGM.S45156.
   PubMedGoogle Scholar
• Sandelowski M. Focus on research methods whatever happened to qualitative description? Res Nurs Health. 2000;33(1):77–84. https://onlinelibrary.wiley.com/doi/10<?sch-permit JATS-0034-007?>.1002/1098-240X
   Google Scholar
• Sandelowski M. What’s in a name? Qualitative description revisited. Res Nurs Health. 2010;33(1):77–84. https://pubmed.ncbi.nlm.nih.gov/20014004/ doi: 10.1002/nur.20362.
   PubMed Web of Science ®Google Scholar
• Sandelowski M. Sample size in qualitative research. Res Nurs Health. 1995;18(2):179–183. https://onlinelibrary.wiley.com/doi/full/10<?sch-permit JATS-0034-007?>.1002/nur.4770180211
   PubMed Web of Science ®Google Scholar
• Clarke A. Focus group interviews in health-care research. Prof Nurse. 1999;14(6):395–397. https://pubmed.ncbi.nlm.nih.gov/10205536/
   PubMedGoogle Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi: 10.1191/1478088706qp063oa.
   Google Scholar
• Montesó-Curto P, Cubí-Guillen MT, Llàdser Navarro AN, et al. Family perceptions and experiences of living with patients with fibromyalgia syndrome. Disabil Rehabil. 2022;44(20):5855–5862. https://pubmed.ncbi.nlm.nih.gov/34232795/ doi: 10.1080/09638288.2021.1948620.
   PubMed Web of Science ®Google Scholar
• Fernández Ortega MA. El impacto de la enfermedad en la familia. Revista de la Facultad de Medicina UNAM. 2004; [cited 2023 Jun 7]. Available from: https://www.medigraphic.com/pdfs/facmed/un-2004/un046f.pdf.
   Google Scholar
• Grau C, Fernández Hawrylak M, Claudia Grau Rubio C. Familia y enfermedad crónica pediátrica. An Sist Sanit Navar. 2010;33(2):203–212. https://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S1137-66272010000300008&lng=es&nrm=iso&tlng=es
   Google Scholar
• Dionne-Odom JN, Azuero A, Taylor RA, et al. Resilience, preparedness, and distress among family caregivers of patients with advanced cancer. Support Care Cancer. 2021;29(11):6913–6920. https://pubmed.ncbi.nlm.nih.gov/34031751/ doi: 10.1007/s00520-021-06265-y.
   PubMed Web of Science ®Google Scholar
• Vicente MA, De la Cruz C, Morales RA, et al. Cansancio, cuidados y repercusiones en cuidadores informales de adultos mayores con enfermedades crónico degenerativas. Eur J Investig Health Psychol Educ. 2022;4(2):151. https://formacionasunivep.com/ejihpe/index.php/journal/article/view/66
   Google Scholar
• Bazo MT, Domínguez C. Los cuidados en salud en las personas ancianas y las políticas familiares. 1998; [cited 2022 Sep 30]. Available from: http://reis.cis.es/REIS/PDF/REIS_073_05.pdf.
   Google Scholar
• García Calvente M, del Río Lozano M, Marcos Marcos J. Desigualdades de género en el deterioro de la salud como consecuencia del cuidado informal en españa. Gac Sanit. 2011;25(SUPPL. 2):100–107. http://www.gacetasanitaria.org/es-desigualdades-genero-el-deterioro-salud-articulo-S0213911111002998 doi: 10.1016/j.gaceta.2011.09.006.
   PubMedGoogle Scholar
• Piolli KC, Decesaro M das N, Sales CA. Not) taking care of yourself as a woman while being a caregiver of a partner with cancer. Rev Gaucha Enferm. 2018;39(1):e2016–69–e2069. https://pubmed.ncbi.nlm.nih.gov/29846475/
   PubMedGoogle Scholar
• Garcia-Ptacek S, Dahlrup B, Edlund AK, et al. The caregiving phenomenon and caregiver participation in dementia. Scand J Caring Sci. 2019;33(2):255–265. https://pubmed.ncbi.nlm.nih.gov/30488971/ doi: 10.1111/scs.12627.
   PubMed Web of Science ®Google Scholar
• Briones E, Vives C, Goicolea I. “I’m not the woman I was”: women’s perceptions of the effects of fibromyalgia on private life. Health Care Women Int. 2016;37(8):836–854. doi: 10.1080/07399332.2016.1178265.
   PubMed Web of Science ®Google Scholar
• Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Illn. 1983;5(2):168–195. http://www.ncbi.nlm.nih.gov/pubmed/10261981 doi: 10.1111/1467-9566.ep10491512.
   PubMedGoogle Scholar
• Metzing S, Schnepp W. [The impact of caring on young carer’s lives. An international literature review (1990–2006)]. Pflege. 2007;20(6):331–336. https://pubmed.ncbi.nlm.nih.gov/18357746/ doi: 10.1024/1012-5302.20.6.331.
   PubMedGoogle Scholar
• Breen R, Cooke L. The persistance of the gendered division of domestic labour. European Sociological Reviews. 2005;21(1):43–57. doi: 10.1093/esr/jci003.
   Web of Science ®Google Scholar
• Hellström I, Håkanson C, Eriksson H, et al. Development of older men’s caregiving roles for wives with dementia. Scand J Caring Sci. 2017;31(4):957–964. https://onlinelibrary.wiley.com/doi/full/10<?sch-permit JATS-0034-007?>.1111/scs.12419.
   PubMed Web of Science ®Google Scholar
• Mutti GW, de Quadros M, Cremonez LP, et al. Fibromyalgia and sexual performance: a cross-sectional study in 726 Brazilian patients. Rheumatol Int. 2021;41(8):1471–1477. https://pubmed.ncbi.nlm.nih.gov/33725132/ doi: 10.1007/s00296-021-04837-z.
   PubMed Web of Science ®Google Scholar
• Bazzichi L, Giacomelli C, Rossi A, et al. Fibromyalgia and sexual problems. Reumatismo. 2012;64(4):261–267. https://pubmed.ncbi.nlm.nih.gov/23024970/
   PubMedGoogle Scholar
• Kalichman L. Association between fibromyalgia and sexual dysfunction in women. Clin Rheumatol. 2009;28(4):365–369. http://link.springer.com/10<?sch-permit JATS-0034-007?>.1007/s10067-009-1093-3
   PubMed Web of Science ®Google Scholar
• García J, Alda M. La vivencia de la sexualidad en pacientes con fibromialgia: estudio cualitativo. Archivos de Psiquiatría. 2004;67(3):157–168. http://psycnet.apa.org/record/2004-21023-001
   Google Scholar
• Larsson B, Balogh I. Is there a relationship between fibromyalgia syndrome and work conditions? J Musculoskelet Pain. 2008;13(4):5–14. doi: 10.1300/J094v13n04_03.
   Google Scholar
• Kivimäki M, Leino-Arjas P, Virtanen M, et al. Work stress and incidence of newly diagnosed fibromyalgia: prospective cohort study. J Psychosom Res. 2004;57(5):417–422. https://www.sciencedirect.com/science/article/pii/S0022399903006202 doi: 10.1016/j.jpsychores.2003.10.013.
   PubMed Web of Science ®Google Scholar
• Henriksson C, Liedberg G, Gerdle B. Women with fibromyalgia: work and rehabilitation. Disabil Rehabil. 2005;27(12):685–694. http://www.ncbi.nlm.nih.gov/pubmed/16012061
   PubMed Web of Science ®Google Scholar
• Briones E, Vives RE. C. Percepciones de pacientes con fibromialgia sobre el impacto de la enfermedad en el ámbito laboral. Aten Primaria. 2015;47(4):205–212. https://www.sciencedirect.com/science/article/pii/S021265671400208X
   PubMedGoogle Scholar
• Rakovski C, Zettel-Watson L, Rutledge D. Association of employment and working conditions with physical and mental health symptoms for people with fibromyalgia. Disabil Rehabil. 2012;34(15):1277–1283. https://pubmed.ncbi.nlm.nih.gov/22324423/ doi: 10.3109/09638288.2011.641658.
   PubMed Web of Science ®Google Scholar
• Gayà TF, Ferrer CB, Mas AJ, et al. Prevalence of fibromyalgia and associated factors in Spain. Clin Exp Rheumatol. 2020;38(1):S47–S52. https://www.clinexprheumatol.org/abstract.asp?a=14409
   Web of Science ®Google Scholar