a National Institute of Public Health , University of Southern Denmark , Copenhagen , Denmark.
b Department of Anthropology , University of Copenhagen , Copenhagen , Denmark.
Disabil Rehabil. 2019 Jun;41(11):1275-1286. doi: 10.1080/09638288.2018.1424949. Epub 2018 Jan 22.
We explored which shared aspects of social relations were considered important to the quality of life of persons between the ages of 10 and 40 years living with a disability. We examined how social relations were experienced as affecting quality of life and social participation.
Fifteen focus groups involving 48 persons with disabilities were conducted using photo elicitation, preference ranking and props. Focus group interviews were supplemented with seven individual interviews with individuals unable to participate in focus groups. All focus group interviews and individual interviews were audiotaped, transcribed, and thematic data analysis was conducted.
We identified caregiving, dependency, and understanding as essential for quality of life. Acceptance from society, discrimination and prejudice, and the ability to participate in society were also highlighted as affecting quality of life. The use of social tactics to avoid confrontation with certain aspects of their disability was common among participants.
Across disabilities, caregiving, dependency, understanding and acceptance, and discrimination and prejudice were all important aspects for the quality of life of the individuals. Social relations were closely related to social participation, and the latter affected the quality of life of the participants. Social tactics were used to navigate social relations. Implications for rehabilitation We suggest to formalize the concept of social tactics and use it in patient education to enhance quality of life in individuals living with disabilities. People may accept and learn to cope with the impact of their disability, but how they maintain their social participation and social relations also impact on their quality of life. In their assessment, professionals working with individuals with disabilities should, therefore, give more priority to analyze the impact of social relations. When intervening, an effort to establish and maintain social relations should be considered along with psychological help, allocation of aids and economical support aiming to enhance quality of life and social participation among individuals with disabilities. When evaluating efforts to improve quality of life, it is important to investigate whether the intervention has improved the social relations.
我们探讨了对于 10 至 40 岁之间残疾人士的生活质量而言，哪些共同的社会关系方面被认为是重要的。我们研究了社会关系如何影响生活质量和社会参与。
使用照片诱发、偏好排序和道具，我们进行了 15 个焦点小组，共涉及 48 名残疾人。焦点小组访谈辅以 7 名无法参加焦点小组的个体的个人访谈。所有焦点小组访谈和个人访谈均进行录音、转录，并进行主题数据分析。
我们确定了照顾、依赖和理解是生活质量的关键。社会的接纳、歧视和偏见以及参与社会的能力也被强调为影响生活质量的因素。参与者普遍采用社交策略来避免与残疾的某些方面发生冲突。
在各种残疾中，照顾、依赖、理解和接纳以及歧视和偏见都是个体生活质量的重要方面。社会关系与社会参与密切相关，后者影响参与者的生活质量。社交策略被用来处理社会关系。
我们建议正式确定社交策略的概念，并将其用于患者教育，以提高残疾人士的生活质量。人们可能会接受并学会应对残疾的影响，但他们如何维持社会参与和社会关系也会影响他们的生活质量。因此，从事残疾人士工作的专业人员在评估时应更加重视分析社会关系的影响。在进行干预时，应考虑建立和维持社会关系，同时提供心理帮助、辅助器具的分配和经济支持，以提高残疾人士的生活质量和社会参与度。在评估改善生活质量的努力时，重要的是要调查干预措施是否改善了社会关系。
