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

被引：6

作者：

Gottberg, Kristina ^{[1
]}

Ytterberg, Charlotte ^{[1
,2
]}

Sandstedt, Petter ^{[1
,3
]}

Johansson, Sverker ^{[1
,2
]}

Kierkegaard, Marie ^{[1
,2
,4
]}

机构：

[1] Karolinska Inst, Dept Neurobiol Care Sci & Soc, Huddinge, Sweden

[2] Karolinska Univ Hosp, Funct Area Occupat Therapy & Physiotherapy, Huddinge, Sweden

[3] Karolinska Univ Hosp, Funct Area Ageing Hlth & Functioning, Huddinge, Sweden

[4] Stockholm Hlth Serv, Acad Specialist Ctr, Stockholm, Sweden

来源：

DISABILITY AND REHABILITATION | 2021年 / 43卷 / 17期

基金：

瑞典研究理事会;

关键词：

Amyotrophic lateral sclerosis; caregiver experience; invasive ventilation; tracheostomy; qualitative content analysis; MOTOR-NEURON DISEASE; MECHANICAL VENTILATION; ALS PATIENTS; NONINVASIVE VENTILATION; LIFE; CAREGIVERS; CARE; SURVIVAL; JAPANESE; PEOPLE;

D O I：

10.1080/09638288.2019.1700561

中图分类号：

R49 [康复医学];

学科分类号：

100215 ;

摘要：

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.

引用

页码：2403 / 2410

页数：8

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