Heart or lung transplantation from patient's and next of kin's perspective

Project: Research

Research areas and keywords

UKÄ subject classification

  • Clinical Medicine



During the last 10 years we have studied how patients and their next of kin experience the information given by the health care system and the support they receive in connection to cardiac surgery. Studies on patient reactions when planned cardiac surgery were postponed or cancelled have been published. Our group has described factors with positive and/or negative influence on the patients’ situation. The significance of good communication, reception and information has been described. Improved methods for information and support programmes can considerably gain several groups of patients.

The problems described above regarding “ordinary” cardiac patients, are much more significant concerning patients within the field of heart and/or lung transplantation. For these patients insecurity and uncertainty are more accentuated.


The aim with this research project, which includes several studies, is to investigate how patients waiting for a heart and/or lung transplantation, and their next of kin, experience information, support and psychosocial issue before the transplantation and during a long period after the transplantation.


Socio-demographic and medical variables, coping strategies, anxiety, depression, stress and quality of life are measured as well as experiences and need of information and support. The experiences and burden on the next of kin will also be studied in this project. One goal with this research is to reveal the weak points of today’s care and to develop programs for an optimized support organization to match the actual need expressed by this group of patients and their next of kin.

The project, which includes both quantitative and qualitative studies, started in 2009 and has received permission from the Ethical Review Board in Lund, Sweden (LU 638/2008) .


Beside socio-demographic and situational data a battery of well-established questionnaires will be used both before and after transplantation:

Coping, the 7-item Mastery Scale; Pearlin & Schooler 1978;

Job demand-job control mode (11-item); Karasek & Theorell, 1990

QoL, the 5-item Euro-QoL [EQ-5D]; Kind 1996;

HAD the 14-item Hospital Anxiety and Depression Scale; Zigmond & Snaith 1983

IES: The impact of event scale (15-item); Horowitz M, Wilner N, Alvarez W 1979

Caregiver Burden Scale (CBS) (22-item): Elmståhl S, Malmberg B, Annerstedt L 1996

as well as qualitative interviews, before and after transplantation, comprising different qualitative analysis approaches as, content analysis (Graneheim & Lundman 2004), critical incident analysis (Flanagan 1954), open structured questions focusing on the experiences of heart or lung transplantation from both patient’s and next of kin´s perspectives.

Pågående projekt

-Patients' self-perceived health, coping, anxiety, depression and stress before and up to two years after a heart or lung transplantation.

-Psychosocial impact in family members before and up to two years after heart or lung transplantation.

Patient’s and next of kin’s experiences of supportive care when waiting for lung re-transplantation.
Effective start/end date2007/01/01 → …


Related research output

Bodil Ivarsson, Björn Ekmehag & Trygve Sjöberg, 2014, In: Heart & Lung. 43, 3, p. 198-203

Research output: Contribution to journalArticle

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