A Literature Review of Studies Using Qualitative Research to Explore Chronic Neuromuscular Disease

Abstract

Although most neuromuscular disease research articles reflect traditional quantitative approaches, qualitative methods are becoming more prevalent in the neuromuscular literature. Arguably, qualitative research provides rich data that may be used to generate patient-centered outcome measures or influence current standards of care. The purpose of this article is to explore the qualitative literature pertaining to individuals and families living with chronic neuromuscular disease in order to suggest implications for practice. Fifty-six qualitative articles addressing seven research themes including Illness Experience; Work, Recreation, and Services; Assisted Ventilation; Caregiving; Genetics; Communication and Information Seeking; and Palliative Care were identified.

It’s not just physical: a qualitative study regarding the illness experiences of people with facioscapulohumeral muscular dystrophy

“…[41,42] However, this often concerns people with rapidly progressive NMDs, such as ALS or DMD, who highly depend on healthcare. [13] For slowly progressive NMDs, care is, just as in our study, less explicitly discussed in the context of illness experiences. [15] A second difference concerns the impact of the diagnosis.…”

“…[19,31,32] Mainly the uncertainty about the future, regarding physical state and abilities, and the heredity of the disease are often mentioned in the literature about NMDs. [13,33,34] Besides, becoming gradually more dependent was addressed in the context of the spousal relationship and with regard to the use of assistive devices. The continuous behavioral adaptation addressed by the participants of this study is recognized in other progressive diseases as well.…”

“…Usually, this is, according to the Disablement Process Model, one of the main extra-individual factors that influence the physical impairments and, thereby, the disability of people. [13] Other studies showed that care can play a vital role in the lives of people with NMDs, as people gradually become dependent on care as a result of the progressive nature of the NMD. [41,42] However, this often concerns people with rapidly progressive NMDs, such as ALS or DMD, who highly depend on healthcare.…”

“…This has to do with physical aspects, such as deterioration of the muscles, excessive fatigue and pain, as well as with social aspects, such as increased dependency, stigmatization and the need for constantly making (physical and psychological) adaptations. [12][13][14] have been studied to a much lesser extent. [15] This is remarkable, as different types of NMD have their own characteristics leading to unique problems and illness experiences.…”

Identifying gaps in knowledge: A map of the qualitative literature concerning life with a neurological condition

“…A qualitative study of the transition to adulthood for youth with physical disabilities. Physical and Occupational Therapy in Pediatrics, 21(4), [3][4][5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21] …”