Heart or lung transplanted patients' retrospective views on information and support while waiting for transplantation
Article first published online: 8 OCT 2012
© 2012 Blackwell Publishing Ltd
Journal of Clinical Nursing
Volume 22, Issue 11-12, pages 1620–1628, June 2013
How to Cite
Ivarsson, B., Ekmehag, B. and Sjöberg, T. (2013), Heart or lung transplanted patients' retrospective views on information and support while waiting for transplantation. Journal of Clinical Nursing, 22: 1620–1628. doi: 10.1111/j.1365-2702.2012.04284.x
- Issue published online: 10 APR 2013
- Article first published online: 8 OCT 2012
- Manuscript Accepted: 2 JUN 2012
- chronic illness;
- end-stage disease;
- transplantation team;
- waiting list
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.
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.
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.