Waiting for a heart or lung transplant: Relatives’ experience of information and support

Abstract

Waiting for a heart or lung transplant: Relatives' experience of information and support.Ivarsson, Bodil; Ekmehag, Björn; Sjöberg, Trygve Link to publication Citation for published version (APA): Ivarsson, B., Ekmehag, B., & Sjöberg, T. (2014). Waiting for a heart or lung transplant: Relatives' experience of information and support. Intensive & Critical Care Nursing, 30(4), 188-195. DOI: 10.1016/j.iccn.2014 General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.• Users may download and print one copy of any publication from the public portal for the purpose of private study or research.• You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal 1 WAITING FOR A HEART OR LUNG TRANSPLANT: RELATIVES' EXPERIENCE OF INFORMATION AND SUPPORT Abstract ObjectivesTo describe the relatives' experiences of information and support while the heart or lung transplant candidates were waiting for a heart or lung transplantation. Methodology/designThe critical incident technique was used. Incidents were collected via interviews with 18 relatives (28-73 years old) of heart or lung transplant patients within four weeks of the patients being accepted onto the transplant waiting list. FindingssA total of 286 important events, both positive and negative, were identified and divided into two main areas: "Experiencing information and support" and "Reflecting upon information and support." "Experiencing information and support" was associated with "dissatisfaction with the health-care system", "being relatively satisfied", "supporting patients" and "the role of social networks." "Reflecting upon information and support" was associated with "finding strength" and "uncomfortable with emotions". Relatives experiences suggest that needs can be met through specific targeted information and support for them as well as mediating contact to previously transplanted persons. ConclusionThe findingss indicate a gap between the information and support that relatives need and receive, and that more attention should be paid to information and support for this group. By increasing awareness among healthcare professionals and the community, interventions can be developed that benefit relatives.

The meaning of being in uncertainty after heart transplantation – an unrevealed source to distress

“…Perhaps there is a need to redefine the meaning of recovery after a HTX, because recovery generally implies a return to 'normal'. 26 We know from previous research 27,28 that being a relative of a HTR is very stressful. Even though it was not the aim of this study, the informants described their concern for their relatives in terms of a lack of information and a need for support.…”

“…We know from previous research 27,28 that being a relative of a HTR is very stressful. Even though it was not the aim of this study, the informants described their concern for their relatives in terms of a lack of information and a need for support.…”

Muslim transplant recipients’ family experiences following organ transplantation

“…Research also reveals that religious beliefs and cultural values can influence transplant recipients’ experiences with organ transplantation and their expectations of its outcomes (Ivarsson et al., 2014). Among Muslims, faith, religion and spirituality are not viewed in isolation, but rather they are part of the lived experience of being Muslim (Salman and Zoucha, 2010).…”

Exploring support persons' narrative accounts of waiting for lung transplant

“…There was no current research found implementing or evaluating supportive interventions for support persons despite the fact that a number of authors discussed the need for healthcare professionals to attend to family caregivers' experiences (Kurz, 2002;Rodrigue & Baz, 2007) and provide added informational and psychological support to them (Meltzer & Rodrigue, 2001;Stubblefield & Murray, 2002). There was only one recent qualitative descriptive study exploring relatives' perceptions of information and support received during the waiting period (Ivarsson et al, 2014). Ivarsson et al found that family members reported dissatisfaction with the amount and timing of information received from the healthcare team, and indicated a need for more assistance with the patient's daily activities.…”