Experiences of next of kin to patients with amyotrophic lateral sclerosis using invasive ventilation via tracheostomy.

Abstract

To investigate the experience of being the next of kin to patients with amyotrophic lateral sclerosis who use invasive ventilation <i>via</i> tracheostomy. Semi-structured interviews with eight next of kin were conducted and analysed using qualitative content analysis. Three main themes comprising a total of nine subthemes emerged from the analysis: <i>A turbulent care process aiming to extend life</i>, <i>Struggling to cope with the strains of everyday life,</i> and <i>Conflicting roles as next of kin and carer</i>. The results highlight the importance of involving next of kin throughout the whole care process and considering their specific needs. Furthermore, the development of specific support interventions to facilitate the everyday life for next of kin and to ease their burden are much needed.IMPLICATIONS FOR REHABILITATIONIt is important to involve next of kin and consider their needs throughout the whole care process regarding invasive ventilation via tracheostomy.Specific support interventions need to be developed to facilitate the everyday life for next of kin and to ease their burden.