Caring Beyond Measure: Scoping Review of the Experiences of Informal Caregivers of Lung Transplant Recipients

Document Type

Conference Proceeding

Publication Date

4-25-2025

Publication Title

J Heart Lung Transplant

Abstract

Purpose: Informal caregivers are essential in supporting patients after lung transplantation (LT). With a growing emphasis and recognition of the multiple demands placed on caregivers, the objective of this scoping review was to systematically map the literature surrounding informal caregiving experiences after LT and identify knowledge gaps. Methods: The protocol was developed a priori following guidelines for conducting scoping reviews recommended by Joanna Briggs Institute. Two health sciences librarians developed the search strategy and searched multiple databases from January 2010 to January 2024 based on a combination of keywords and controlled vocabulary related to “caregiver” and “lung transplant recipients”. Using Covidence©, two independent reviewers screened titles and abstracts of the retrieved articles using the inclusion criteria for the review. Disagreements were resolved by a third reviewer before data extraction. Results: A total of 362 records were screened after the removal of duplicates. Among these, 16 sources met the inclusion criteria with 75% classified as full publications (n=12), 19% peer-reviewed conference abstracts (n=3), and a poster presentation (n=1). Most studies were based in North America (11/16 = 69%) with the remainder from Europe or Australia. Only 19% (3/16) of sources were published within the past 5 years. There were 7 qualitative studies (44%); 6 quantitative (38%); 2 mixed methods (13%); and 1 literature review. Informal caregivers described a wide variety of challenging experiences ranging from high levels of caregiver stress burden, psychological symptoms, knowledge deficits, handling multiple daily practicalities, and the need for more education and support. Positive aspects of the informal caregiver role include increased levels of life satisfaction, rewarding responsibilities, improved coping, and benefitting from mindful-based stress reduction, multi-media education programs, and hospitality houses. Conclusion: Informal caregivers remain an integral resource in supporting patients after LT. Unfortunately, the literature related to the informal caregiver experiences after LT is scarce and outdated, suggesting that additional studies are needed to further examine the topic, and design interventions to support this population.

Volume

44

Issue

4

First Page

S322

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