The unsung heroes: A scoping review of the experiences of lung transplant informal caregivers

TL;DR

This review explores the experiences of informal caregivers for lung transplant patients, highlighting both challenges and positive aspects of their role.

Contribution

The study systematically maps the literature on informal caregiving after lung transplantation using JBI guidelines.

Findings

Caregivers face challenges like high burden, emotional stress, and knowledge gaps.

Positive experiences include improved quality of life and support from networks.

Most studies are outdated, with 80% published before 2020, limiting current relevance.

Abstract

Informal caregivers support patients after lung transplantation (LTx). With growing recognition of the multiple demands placed on caregivers, this scoping review aimed to systematically map the literature surrounding informal caregiving experiences after LTx using JBI guidelines. Multiple databases were searched from January 2010 to May 2025 based on a combination of synonyms and controlled vocabulary related to “caregiver” and “lung transplant recipients”. A total of 404 records were screened after the removal of duplicates. Among these, 16 sources met the inclusion criteria with 12 (75%) classified as full publications, 3 (19%) peer-reviewed conference abstracts, and 1 poster presentation. Most studies were based in North America (11/16 [69%]) with the remainder from Europe or Australia. Only 19% (3/16) of the sources were published within the past 5 years. There were 7 qualitative studies (44%), 6 quantitative (38%), 2 mixed methods (12%), and 1 literature review. Informal caregivers described a wide variety of challenges ranging from high levels of caregiver burden, psychological and emotional impacts, handling multiple daily practicalities, knowledge deficits, and the need for more support. Positive experiences of the informal caregiver role include positive adjustment, presence of support networks and relationships, improved quality of life, and benefiting from educational support and preparation. Informal caregivers remain an integral resource in supporting patients after LTx. However, most available evidence predates recent advances in transplantation practice—with 80% published before 2020—limiting its current relevance and highlighting the need for further research and targeted interventions to support this population.

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