Ventilator Dependence and Expressions of Need : A Study of Patients with Amyotrophic Lateral Sclerosis in Japan  

Oleh:

Hirano, Yuko Mandai ; Yamazaki, Yoshihiko ; Shimizu, Junichi ; Togari, Taisuke ; Bryce, Thomas James

Jenis: Article from Journal - ilmiah internasional
Dalam koleksi: Social Science & Medicine (www.elsevier.com/locate/sosscimed) vol. 62 no. 6 (Mar. 2006), page 1403-1413.
Topik: multiple sclerosis; amyotrophic lateral sclerosis; hope; invasive mechanical ventilator. expression; psychosocial support; difficulties; japan

Ketersediaan

Perpustakaan Pusat (Semanggi) Nomor Panggil: SS53.2 Non-tandon: 1 (dapat dipinjam: 0) Tandon: tidak ada

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Isi artikel

This research examined the experience of amyotrophic lateral sclerosis (ALS) patients who depend on an invasive mechanical ventilator in Japan. We investigated their difficulties in expressing their needs, their desires and wishes and their sources of support and happiness. We examined the relationship between these factors and patient demographics, and hope as an indicator of successful adaption to the illness experience (assessed by the herth hope index). Interview results guided the formation of an anonymous questionnaire distributed to patients by mail. We interviewed 27 patients and their families and surveyed 157 respondents with a questionnaire. Most patients experienced multiple categories of difficulties, which correlated with reduced hope. More severe physical symptoms correlated with more emotional and social difficulties. Notable findings included a high prevalence of unalleviated pain, fear or experience of ventilator difficulties and fear of burdening others. Having more sources of psychosocial support and happiness was associated with greater hope. Living at home was associated with fewer social difficulties. No patients claimed additional sources of support without claiming family or professional caregiver support, suggesting their mediation may be crucial in maintaining other social conenctions. Users of computer communication reproted more sources of support and happiness and less frustration from difficulty expressing themselves. The most common reported desicres, following a cure for ALS, related to the happiness of the patients' families, and a desire not to burden them. We also found that invasive mechanical ventilation (IMV) had been initiated emergently in 30.1% of patients without patient or family consent. Our results provide an insight into the world of this challenged population, eludicating the difficulties they face and clarifying the role of support and other factors in maintaining hope. We identify concrete areas to which increased attention should be directed in patient care.

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