‘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
Laura‐Jayne Watson, Linda Sharp, David W. Hamilton, Vicky Thornton, Joanne M. PattersonABSTRACT
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.