1,529
Views
2
CrossRef citations to date
0
Altmetric
Research Papers

Experiences of patients with facioscapulohumeral dystrophy with facial weakness: a qualitative study

ORCID Icon, ORCID Icon, ORCID Icon, , ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon show all
Pages 6775-6782 | Received 27 Apr 2021, Accepted 23 Aug 2021, Published online: 16 Sep 2021

References

  • Bakker M, Schipper K, Geurts AC, et al. It's not just physical: a qualitative study regarding the illness experiences of people with facioscapulohumeral muscular dystrophy. Disabil Rehabil. 2017;39(10):978–986.
  • Lanser A. FSHD heb je niet alleen. Amsterdam: Spierziekten Nederland; 2011.
  • Lanser A. FSHD in beeld, onmacht en veerkracht. Amsterdam: Stichting Pictoright; 2015.
  • Corbin J, Strauss A. Basics of qualitative research (3rd ed.): techniques and procedures for developing grounded theory. Thousand Oaks (CA); 2008. Available from: https://methods.sagepub.com/book/basics-of-qualitative-research
  • Boeije H. Analysis in qualitative research. New York (NY): Sage Publications; 2009.
  • Tong A, Sainsbury P, Craig J. Consolidated Criteria for Reporting Qualitative Research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357.
  • Lamperti C, Fabbri G, Vercelli L, et al. A standardized clinical evaluation of patients affected by facioscapulohumeral muscular dystrophy: the FSHD clinical score. Muscle Nerve. 2010;42(2):213–217.
  • Knuijt SK, Gerven M, Kocken J, et al. Nederlandstalig dysartrieonderzoek volwassenen (NDO-V). Houten, Utrecht: Springer Media B.V.; 2018.
  • van den Engel-Hoek L, Erasmus CE, van Bruggen HW, et al. Dysphagia in spinal muscular atrophy type II: more than a bulbar problem? Neurology. 2009;73(21):1787–1791.
  • Giacomini MK, Cook DJ. Users' guides to the medical literature: XXIII. Qualitative research in health care A. Are the results of the study valid? Evidence-Based Medicine Working Group. JAMA. 2000;284(3):357–362.
  • Shenton A. Strategies for ensuring trustworthiness in qualitative research projects. Educ Inform. 2004;22(2):63–75.
  • Ricci G, Ruggiero L, Vercelli L, et al. A novel clinical tool to classify facioscapulohumeral muscular dystrophy phenotypes. J Neurol. 2016;263(6):1204–1214.
  • Knuijt S, Kalf JG, de Swart BJ, et al. Dysarthria and dysphagia are highly prevalent among various types of neuromuscular diseases. Disabil Rehabil. 2014;36(15):1285–1289.
  • Mul K, Berggren KN, Sills MY, et al. Effects of weakness of orofacial muscles on swallowing and communication in FSHD. Neurology. 2019;92(9):e957–e963.
  • Bogart KR, Tickle-Degnen L, Ambady N. Compensatory expressive behavior for facial paralysis: adaptation to congenital or acquired disability. Rehabil Psychol. 2012;57(1):43–51.
  • Ishii L, Godoy A, Encarnacion CO, et al. Not just another face in the crowd: society's perceptions of facial paralysis. Laryngoscope. 2012;122(3):533–538.
  • Ishii LE, Godoy A, Encarnacion CO, et al. What faces reveal: impaired affect display in facial paralysis. Laryngoscope. 2011;121(6):1138–1143.
  • Hemmesch AR. The detrimental effects of atypical nonverbal behavior on older adults' first impressions of individuals with Parkinson's disease. Psychol Aging. 2014;29(3):521–527.
  • Schwartz R, Pell MD. When emotion and expression diverge: the social costs of Parkinson's disease. J Clin Exp Neuropsychol. 2017;39(3):211–230.
  • Walshe M, Miller N. Living with acquired dysarthria: the speaker's perspective. Disabil Rehabil. 2011;33(3):195–203.
  • Dickson S, Barbour RS, Brady M, et al. Patients' experiences of disruptions associated with post-stroke dysarthria. Int J Lang Commun Disord. 2008;43(2):135–153.
  • Tickle-Degnen L, Zebrowitz LA, Ma HI. Culture, gender and health care stigma: practitioners' response to facial masking experienced by people with Parkinson's disease. Soc Sci Med. 2011;73(1):95–102.
  • Hemmesch AR, Tickle-Degnen L, Zebrowitz LA. The influence of facial masking and sex on older adults' impressions of individuals with Parkinson's disease. Psychol Aging. 2009;24(3):542–549.
  • Goselink RJM, Schreuder THA, van Alfen N, et al. Facioscapulohumeral dystrophy in childhood: a nationwide natural history study. Ann Neurol. 2018;84(5):627–637.
  • Bradbury E. Meeting the psychological needs of patients with facial disfigurement. Br J Oral Maxillofac Surg. 2012;50(3):193–196.
  • Huang B, Xu S, Xiong J, et al. Psychological factors are closely associated with the Bell's palsy: a case-control study. J Huazhong Univ Sci Technolog Med Sci. 2012;32(2):272–279.
  • Krane NA, Genther D, Weierich K, et al.  Degree of self-reported facial impairment correlates with social impairment in individuals with facial paralysis and synkinesis. Facial Plast Surg Aesthet Med. 2020;22(5):362–369.
  • Corbin JS. Unending work and care: managing chronic illness at home. San Francisco: Jossey-Bass; 1988.
  • van Hees SGM, Knuijt S, Dicke H, et al. Meet and eat, an interdisciplinary group intervention for patients with myotonic dystrophy about healthy nutrition, meal preparation, and consumption: a feasibility study. Disabil Rehabil. 2020;42(11):1561–1568.
  • Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–112.