Department of Psychology, Royal Holloway, University of London, Egham, Surrey, UK.
Disabil Rehabil. 2012;34(24):2095-102. doi: 10.3109/09638288.2012.672539. Epub 2012 Apr 13.
Care home residents with multiple sclerosis (MS) are more physically dependent than the average residents. However, little is known about their quality of life (QoL). We investigated the experiences of residents with MS using qualitative research methods and developed a conceptual model of QoL.
Twenty-one people with MS (age range 43-80 years) residing in a range of care homes were interviewed. The interviews were transcribed verbatim and analyzed using the constant comparative method.
Four core model domains identified were as follows: (i) What the care home means to the residents, (ii) Self, (iii) Environment and (iv) Relationships. Some residents reported that care homes can relieve the burden on family, address specific environmental issues regarding safety and act as a form of social support. However, some reported isolation and difficulties adjusting to life in the care home. Having access to rehabilitation strengthened the feelings of independence within the care home.
QoL is a broad, multidimensional construct for residents with MS. QoL measures for residents with MS should incorporate broad domains, including environmental factors. The conceptual model highlighted several areas for improving QoL of residents with MS, including more involvement of family members, encouraging independence by providing access to rehabilitation and providing support in the transition process.
患有多发性硬化症(MS)的养老院居民比一般居民身体依赖性更强。然而,人们对他们的生活质量(QoL)知之甚少。我们使用定性研究方法调查了多发性硬化症患者的体验,并开发了一个 QoL 的概念模型。
对居住在各种养老院的 21 名多发性硬化症患者(年龄 43-80 岁)进行了访谈。访谈逐字记录并使用恒定性比较法进行分析。
确定了四个核心模型领域:(i)养老院对居民的意义,(ii)自我,(iii)环境和(iv)关系。一些居民报告说,养老院可以减轻家庭的负担,解决有关安全的特定环境问题,并作为一种社会支持形式。然而,一些居民报告说他们感到孤立,难以适应养老院的生活。获得康复治疗增强了他们在养老院中的独立感。
QoL 是多发性硬化症患者的一个广泛的多维结构。多发性硬化症患者的 QoL 测量应该包括广泛的领域,包括环境因素。该概念模型突出了改善多发性硬化症患者 QoL 的几个方面,包括让家庭成员更多地参与、通过提供康复治疗来鼓励独立性以及在过渡过程中提供支持。