1School of Social Work and Social Policy, Trinity College Dublin, Dublin, Ireland.
Palliat Med. 2014 Apr;28(4):318-25. doi: 10.1177/0269216313512013.
People with motor neurone disease access healthcare services from disease onset to end-of-life care, but there has been paucity of research on how people with motor neurone disease understand and use healthcare services.
To identify key psycho-social processes that underpin how people with motor neurone disease engage with healthcare services.
Grounded theory approach comprising in-depth qualitative interviews was used in this study. Data were collected and analysed using open, axial and selective coding procedures.
SETTING/PARTICIPANTS: A total of 34 people with motor neurone disease were recruited from the Irish motor neurone disease population-based register.
We identified that control, reassurance, resignation and trust are key variables that shape how people with motor neurone disease engage with healthcare services. Participants exerted control in care to cope with loss. Most participants were resigned to death and sought reassurances from healthcare professionals about end-of-life care. Participants questioned the benefit of life-sustaining interventions in motor neurone disease and few of them associated life-sustaining interventions with palliative care. Participants trusted healthcare professionals who reassured them about their care and who were attuned to how they were coming to terms with loss.
This study identified new and important aspects of control, trust and reassurance which shed light on how people with motor neurone disease engage with healthcare professionals and approach end-of-life care. People with motor neurone disease exert control in care and meaningful relationships with healthcare professionals are important to them. Some people with motor neurone disease prefer to die without life-sustaining interventions.
肌萎缩侧索硬化症患者从发病到临终关怀都在接受医疗保健服务，但对于肌萎缩侧索硬化症患者如何理解和使用医疗保健服务，研究甚少。
确定支撑肌萎缩侧索硬化症患者参与医疗保健服务的关键心理社会过程。
本研究采用扎根理论方法，包括深入的定性访谈。使用开放式、轴向和选择性编码程序收集和分析数据。
设置/参与者：共招募了 34 名来自爱尔兰肌萎缩侧索硬化症人群登记处的肌萎缩侧索硬化症患者。
我们发现，控制、安心、顺从和信任是影响肌萎缩侧索硬化症患者参与医疗保健服务的关键变量。参与者在护理中施加控制以应对丧失。大多数参与者对死亡感到顺从，并向医疗保健专业人员寻求临终关怀方面的保证。参与者质疑生命维持干预在肌萎缩侧索硬化症中的益处，很少有人将生命维持干预与姑息治疗联系起来。参与者信任那些让他们安心并了解他们如何接受丧失的医疗保健专业人员。
这项研究确定了控制、信任和安心的新的和重要方面，这些方面阐明了肌萎缩侧索硬化症患者如何与医疗保健专业人员互动并接近临终关怀。肌萎缩侧索硬化症患者在护理中施加控制，与医疗保健专业人员建立有意义的关系对他们很重要。一些肌萎缩侧索硬化症患者宁愿在没有生命维持干预的情况下死亡。
