Heart or lung transplanted patients' retrospective views on information and support while waiting for transplantation

Aims and objectives To describe the patients' retrospective experiences of the information and support they received while on the heart or lung transplant waiting list. Background 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. Design Qualitative descriptive design. Methods 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. Results 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. Conclusions 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. Relevance to clinical practice 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.