Engelsk titel: Family caregiver perceptions of life-prolonging treatment for patients with ALS
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Författare:
Brandt Lassen, Birgitte
;
Sehested, Pia
Email: birgittebrandt@hotmail.com
Språk: Dan
Antal referenser: 8
Dokumenttyp:
Artikel
UI-nummer: 15043650
Sammanfattning
In Denmark, persons diagnosed with Amyotrophic Lateral Sclerosis (ALS) have for the past two
decades been offered home ventilator treatment.
Persons with ALS have a viable option of electing for or declining the offer of life-prolonging
treatment, but how does this affect the family caregivers, whose lives are greatly affected by the
patient's decision?
Interviews with the family caregivers to persons with ALS receiving home ventilator treatment
indicate that perceptions depend on the effectiveness of the 24-hour help service.
Several family caregivers expressed joy over a positive period with the person with ALS on a
respirator, with the initial one to two years especially regarded as good.
Others were in doubt about which option made most sense.
Some family caregivers reported that once the person with ALS was on a ventilator, life suddenly
seemed relentless and interminable. Interviews of family caregivers to persons with ALS show that
this service impacts the family structure, and confirm the necessity of maintaining a keen focus on
how to prepare family caregivers for, and support them through, the challenges that arise when a
person with ALS elects to receive home ventilator care.