Experiences of patients with facioscapulohumeral dystrophy with facial weakness: a qualitative study
| Autor: | Karlien Mul, Nicol C. Voermans, Edith H. C. Cup, Sümeyye Sezer, Ton Satink, Lieve M. Roets-Merken, Janneke G. Weikamp, Baziel G.M. van Engelen, Anke Lanser, Ietske Siemann |
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| Rok vydání: | 2022 |
| Předmět: |
Weakness
Facial expression medicine.medical_specialty Self-management Rehabilitation Facial weakness Disorders of movement Donders Center for Medical Neuroscience [Radboudumc 3] medicine.disease Muscular Dystrophy Facioscapulohumeral Grounded theory Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] Reconstructive and regenerative medicine Radboud Institute for Health Sciences [Radboudumc 10] Physical medicine and rehabilitation medicine Humans Facioscapulohumeral muscular dystrophy medicine.symptom Psychology Psychosocial Qualitative Research Fatigue Qualitative research |
| Zdroj: | Disability and Rehabilitation, 44, 22, pp. 6775-6782 Disability and Rehabilitation Disability and Rehabilitation, 44, 6775-6782 |
| ISSN: | 0963-8288 |
| Popis: | This study focuses on the functional and psychosocial consequences of facial weakness of patients with facioscapulohumeral muscular dystrophy (FSHD) and how they manage their daily lives. We conducted a qualitative study. Sixteen FSHD patients with varying degrees of facial weakness were interviewed using a semi-structured interview guide. Data were analyzed using the constant comparison approach based on the Straussian Grounded Theory. Reduced facial expression affected different aspects of a participant’s life, which is reinforced by fatigue. Particularly the younger participants described the confrontation with reduced facial expression as upsetting. The unpredictability of the progression of facial weakness makes many participants insecure and concerned. They generally tend to avoid discussing facial weakness with loved ones as well as with strangers. Patients would like the expert teams to shed more light on effective skill training and psychosocial support, especially for the younger patient group. A multidisciplinary approach is needed in addition to programs focusing on the individual aspects of facial weakness. As the experienced psychosocial effect is not commonly equal to the objective degree of facial weakness, we recommend a tailored approach. Finally, these programs should point out the importance of the patient’s own ingenuity.Implications for RehabilitationFacial weakness affects both activities and social participation in patients with facioscapulohumeral muscular dystrophy (FSHD), which is reinforced by fatigue.Many participants try to stay down to earth and focus on their ability to self-manage their obstacles regarding facial weakness.Thus, future treatment programs should have a multidisciplinary approach and should point out the importance of the patient’s own ingenuity. Facial weakness affects both activities and social participation in patients with facioscapulohumeral muscular dystrophy (FSHD), which is reinforced by fatigue. Many participants try to stay down to earth and focus on their ability to self-manage their obstacles regarding facial weakness. Thus, future treatment programs should have a multidisciplinary approach and should point out the importance of the patient’s own ingenuity. |
| Databáze: | OpenAIRE |
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