Löfvenmark Inka, Norrbrink Cecilia, Nilsson Wikmar Lena, Löfgren Monika
a Department of Neurobiology, Care Sciences and Society , NVS, Division of Physiotherapy, Karolinska Institutet , Huddinge , Sweden ;
b Spinalis , Rehab Station Stockholm , Solna , Sweden ;
Disabil Rehabil. 2016 Jul;38(15):1483-92. doi: 10.3109/09638288.2015.1106596. Epub 2015 Dec 22.
When suffering a spinal cord injury (SCI), the patient and family face numerous challenges regardless of socio-economic level. The stigmatisation of persons with disabilities has been reported, however, reports from Southern Africa are largely lacking.
To explore the experiences of living with a traumatic SCI in Botswana concerning perceived attitudes, obstacles and challenges.
A qualitative approach with semi-structured interviews was conducted. Thirteen community-dwelling persons who have lived with an SCI for at least two years participated.
A theoretical model was formed that illustrate the associations between the core category, Self, and the categories Relationships and Society. The model illustrates that personal resources, including a strong identity and a positive attitude, are crucial to the experience of inclusion in the community. A supportive family, a source of income, and faith were strong facilitators, while inaccessibility and devaluing attitudes were barriers. Having a disability led to increased risk of poverty and social exclusion.
This study emphasised the importance of personal resources, family support, and improved accessibility to facilitate inclusion in the society. Informants requested legislation to advocate for the rights of persons with disabilities to be respected, with the aim of moving towards an equal accessible society. Implications for Rehabilitation Reclaiming or restructuring one's identity after a SCI is crucial for the person's ability to move on and develop beneficial coping strategies. Support from family and friends, staff and peer support are crucial parts in that process. Spirituality, values, needs and coping strategies vary profoundly among persons sustaining disabling injuries. In striving to optimise care, rehabilitation staff needs to be attentive to the personal resources and preferences to be able to individualise care, encounter, and facilitate transition back to the community. Family members play a crucial part in rehabilitation. It is essential for the patients' well-being and care that they get explicit descriptions of the patient's abilities. Living in a well-adapted home will facilitate well-being, independence, and return to work. Rehabilitation staff needs to focus their efforts on making this successful prior to discharge from hospital.
脊髓损伤(SCI)患者及其家人无论社会经济水平如何,都面临诸多诸多挑战。虽然已有关于残疾人受污名化的报道,但南部非洲的相关报道却极为匮乏。
探讨博茨瓦纳创伤性脊髓损伤患者在感知到的态度、障碍和挑战方面的生活经历。
采用半结构化访谈的定性研究方法。13名脊髓损伤至少两年的社区居民参与了研究。
形成了一个理论模型,该模型阐述了核心类别“自我”与“人际关系”和“社会”类别之间的关联。该模型表明,包括强烈的身份认同和积极态度在内的个人资源对于融入社区的体验至关重要。支持性的家庭、收入来源和信仰是有力的促进因素,而无障碍环境的缺失和贬低性态度则是障碍。残疾会增加贫困和社会排斥的风险。
本研究强调了个人资源、家庭支持以及改善无障碍环境对于促进融入社会的重要性。受访者要求制定立法,倡导尊重残疾人权利,以期迈向一个平等且无障碍的社会。康复的意义脊髓损伤后重塑或重构个人身份对于患者继续前行并制定有益应对策略的能力至关重要。家人、朋友、工作人员和同伴的支持是这一过程的关键部分。遭受致残性损伤的患者在精神信仰、价值观、需求和应对策略方面差异极大。为了努力优化护理,康复工作人员需要关注个人资源和偏好,以便能够实现个性化护理、接触并促进患者顺利回归社区。家庭成员在康复中起着至关重要的作用。明确向他们描述患者的能力对于患者的福祉和护理至关重要。生活在适应性良好的家中将促进福祉、独立性和重返工作岗位。康复工作人员需要在患者出院前集中精力促成此事。