‘You Can't Muck Around With Transplant’: Young People's Experiences of Clinical Care Following Lung Transplant

Abstract

Background

Lung transplantation improves survival and quality of life in young people with end-stage lung disease. Few studies have investigated the clinical care experiences of young people after lung transplantation.

Design

This qualitative study aimed to explore the experiences of young people who underwent lung transplantation. Semi-structured interviews were conducted with 16 lung transplant recipients (< 25 years at transplant). Interviews were analysed to identify themes and categorize and describe the experience of young lung transplant recipients.

Results

The themes that emerged were (1) Hope and spectre: The transplant dilemma; (2) Information delivery and comprehension; (3) Independence and navigating care; and (4) Continuity and youth-appropriate care. Findings suggest that young people have distinct care needs that consider the many parallel life transitions that occur in addition to transplantation. They value consistent and familiar teams, which nurture autonomy and independence in the context of post-transplant survivorship and highlight the importance of feeling that they can relate to the healthcare process.

Conclusion

The results highlight key areas where adolescent lung transplant recipients can be supported by clinicians, enabling the development of youth-friendly services that cater to this group's healthcare and psychosocial needs.

Patient or Public Contribution

Sixteen lung transplant recipients participated in the study by completing a semi-structured interview. Two additional lung transplant recipients who received lung transplants as adolescents and one parent of an adolescent lung transplant recipient participated in a Project Advisory Group (PAG) with six clinicians representing paediatric, adolescent, and adult healthcare experience. They provided advice on research design including the development and revision of the interview guide and recruitment methods. They additionally provided feedback on the preliminary findings and outline of the manuscript. A summary of results was presented to the PAG who in conjunction with the writing group developed a list of recommendations based on the themes identified and the tenets of youth-appropriate care as set out by the World Health Organization. One lung transplant recipient was an author on the manuscript contributing to its writing and review before submission. The clinicians who participated in the PAG did not have direct healthcare relationships with the study participants.