Department of Cardiothoracic Surgery, Lund University and Skåne University Hospital, Lund, Sweden.
J Clin Nurs. 2013 Jun;22(11-12):1620-8. doi: 10.1111/j.1365-2702.2012.04284.x. Epub 2012 Oct 8.
To describe the patients' retrospective experiences of the information and support they received while on the heart or lung transplant waiting list.
Patients differ in the way that they cope with the time spent waiting for a heart or lung transplant. Patients must already before the transplantation be taught about a new lifestyle, risk factors, medication, food restrictions and exercise, so they can take an active role and responsibility for disease management after transplantation. Little is known about patients' experiences of information and support in these situations.
Qualitative descriptive design.
Sixteen patients (16-67 year) were strategically selected from one transplant centre in Sweden and interviewed six months after heart or lung transplantation. Using content analysis, transcribed data were organised into subcategories that reflected emerging categories.
Three categories that describe patients' experiences of information and support have been identified: 'Achieving confidence and trust by information and support', 'Experiencing a lack of input and understanding' and 'Struggling with a life-threatening illness and an insecure future'. Each category consists of different subcategories.
Information and support in connection to heart or lung transplantation are a complex and multifaceted issue involving patient-related, family-related, disease-related and treatment-related factors as well as experiences related to the social situation, the healthcare system and society. Transplant patients are very vulnerable, and a deeper understanding of patients' experiences should help healthcare providers in optimising the care for these very sick patients.
A holistic approach to the patient is necessary in meeting the needs of patients with chronic illness, especially patients with children at home, as well as the needs of their families. An important implication is the necessity to enhance awareness about transplant patients in society in general, in particular in other institutions, by sharing knowledge and by improving cooperation.
描述患者在等待心脏或肺移植期间获得的信息和支持的回顾性体验。
患者在等待心脏或肺移植期间的应对方式存在差异。患者在移植前必须接受有关新生活方式、风险因素、药物、食物限制和运动的教育，以便在移植后积极主动地承担疾病管理的责任。对于患者在这些情况下获得的信息和支持的体验知之甚少。
定性描述性设计。
从瑞典的一家移植中心进行策略性选择，选取了 16 名（16-67 岁）患者进行访谈，并在心脏或肺移植后六个月进行访谈。使用内容分析，将转录数据组织成反映新兴类别的子类别。
确定了描述患者对信息和支持的体验的三个类别：“通过信息和支持获得信心和信任”、“体验缺乏投入和理解”和“与危及生命的疾病和不确定的未来作斗争”。每个类别都包含不同的子类别。
与心脏或肺移植相关的信息和支持是一个复杂且多方面的问题，涉及患者相关、家庭相关、疾病相关和治疗相关因素，以及与社会状况、医疗保健系统和社会相关的经验。移植患者非常脆弱，更深入地了解患者的体验将有助于医疗保健提供者优化对这些重病患者的护理。
对患者进行整体评估对于满足患有慢性疾病的患者的需求至关重要，特别是对于家中有孩子的患者以及其家庭的需求。一个重要的含义是需要通过分享知识和改善合作，提高整个社会对移植患者的认识，特别是在其他机构。
