'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 Total Laryngectomy and Their Families.
Laura-Jayne Watson, Linda Sharp, David W Hamilton and 2 others
People with a laryngectomy and their spouses describe feeling unprepared and unsupported after discharge.
Community staff lack laryngectomy knowledge, the system feels disjointed, and spouses take on the care burden. Participants wanted more support at home, including speech therapy.
Key findings
1In the early weeks after discharge, PwL and spouses describe fear about breathing and communication, feeling overwhelmed by equipment they did not understand, and a strong sense of being on their own.
2Community healthcare staff are perceived as lacking laryngectomy knowledge. People describe uncertainty about who to contact, a disjointed system, and a default to the specialist centre because it is the only place they trust.
3Spouses take on the role of managing communication with healthcare professionals, including making phone calls on behalf of the PwL, and describe this as unsustainable and personally costly.
Still to come
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The sample was predominantly White British males (13 of 17 PwL), with limited ethnic and gender diversity. No females living alone participated. All family member participants were spouses. Views of children, parents, and friends were not captured. All participants were recruited from specialist hospital centres, so the views of PwL who do not engage with specialist services after discharge may be missing. Nine PwL and five family members had a prior clinical relationship with the lead author, an SLP, which may have shaped the data. Findings come from three UK centres. Local service models and staffing vary, so applicability to other settings is uncertain.
Declared interests
The authors declare no conflicts of interest. The study was funded by the National Institute for Health and Care Research.
The easy way to misread this
Do not read the participants' request for more speech therapy as a validated recommendation. This is a qualitative study of 17 people's experiences in three UK centres, not a trial of speech therapy intensity. The finding is that people felt unsupported, not that a specific dose of therapy was shown to help.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →