‘We Needed a Hell of a Lot More Support, the Emotional Side of It, the Physical Side of It. Every Side of It, We Just Didn't get It.’ A Qualitative Study Exploring the Lived Experiences of Healthcare Services Following Discharge for People With a Tot

ABSTRACT Introduction People with a laryngectomy (PwL) and their families commonly require sustained support from healthcare professionals. But the needs of PwL and their families once they return home following hospital discharge are not well understood. Moreover, community healthcare professionals are not specialists in laryngectomy; they work in pressurised environments and lack time and access to education and training. This could impact safety of care and overall adjustment to life after laryngectomy. To better support healthcare professionals in the community to offer a more tailored approach, we first need to understand the needs of PwL and their families. Aim This study aimed to understand the lived experience of healthcare services following discharge, including how services could improve, from the perspective of PwL and their families. Methods Semi‐structured dyadic and individual qualitative interviews were conducted with PwL±family members. Participants were recruited purposively by clinicians from three head and neck centres in the UK. Interviews were audio‐recorded, transcribed verbatim and analysed using Braun and Clarke's approach to reflexive thematic analysis. Results Nineteen interviews were conducted with seventeen PwL and thirteen family members. Three inter‐related themes were established: ‘Immediate Practical and Emotional Demands of Post‐Discharge Life, ‘I had no idea what to do…you don't know anything. What do I do?’; ‘Learning to Cope and Find Acceptance in Everyday Home Life, ‘It was just a matter of coming to terms with the fact that socially and physically I was not the same person I was… I cannot change this, so I don't worry about it, I just accept it.’; and Navigating Healthcare Services in the Post‐Laryngectomy Journey, ‘I understand it's, you know, it's exceptionally difficult to put it all together because there are so many different things…so many different departments all involved in everything.’ Conclusion This study has highlighted a greater need for better support and intervention for PwL, and their families once discharged home after laryngectomy. Improved collaboration between healthcare professionals and services is needed, as well as better laryngectomy education and training for community healthcare professionals. Future research should focus on exploring how best to achieve this. WHAT THIS PAPER ADDS What is already known on this subject People with a laryngectomy and their families experience devastating permanent changes to everyday life because of the long‐term side effects of surgery. As such, they often require ongoing care following hospital discharge, however their needs are not well understood. What this study adds to existing knowledge This study improves understanding of the specific needs of people with a laryngectomy and their families following discharge after laryngectomy. Overall, people feel alone, anxious about equipment and safety and concerned about the need to carry out specialised care at home without specialist support. As such, they have identified a need for better collaboration between healthcare professionals and services involved in their care after laryngectomy. What are the potential or actual clinical implications of this work? There is a clear need for ongoing education and training for community healthcare professionals to build confidence and competence in managing people with a laryngectomy, particularly in non‐specialist settings. Strengthening communication between acute, primary, and community care teams is also essential to ensure continuity of care and reduce gaps in service provision. Clinicians could seek to establish these networks within their local teams.