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

Abstract

Objective

To investigate the experience of being the next of kin to patients with amyotrophic lateral sclerosis who use invasive ventilation via tracheostomy.

Methods

Semi-structured interviews with eight next of kin were conducted and analysed using qualitative content analysis.

Results

Three main themes comprising a total of nine subthemes emerged from the analysis: A turbulent care process aiming to extend life, Struggling to cope with the strains of everyday life, and Conflicting roles as next of kin and carer.

Conclusion

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 REHABILITATION

• It 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.

Keywords:

• Amyotrophic lateral sclerosis
• caregiver experience
• invasive ventilation
• tracheostomy
• qualitative content analysis

Acknowledgements

We acknowledge neurologists Anne Zachau, Rayomand Press, Jan Weinber, Caroline Ingre and Lars-Olof Ronnevi for help with the recruitment of ALS patients and Professor Lotta Widén Holmqvist for valuable comments on the manuscript.

Disclosure statement

The authors report no conflict of interest.

Additional information

Funding

This work was supported by the Swedish Research Council; under Grant [521-2014-3196]; Neuro Sweden; KID funding, Karolinska Institutet under Grant [3-1233/2013]; and the Strategic Research Programme in Care Sciences, Karolinska Institutet.