Journeys and experiences of life after tracheostomy: a case study of patients, their kin/friends and health care professionals.
Advances in critical care mean more people than previously reported are surviving critical care events such as stroke with the support of a tracheostomy. Research to date predominantly focuses on the clinical rationale for tracheostomy insertion or the technical and clinical problems associated with removal. Little research has looked at the longer-term impact of temporary tracheostomy experiences on patient lives. Additionally, most literature on this group comes from the USA and Asia: little is known about UK populations in respect to prevalence, demographics, outcomes, experiences or quality of life. The aim of this study was to explore the journeys and experiences of people after tracheostomy and stroke/other critical illness residing in the UK, examining both clinical data and outcomes, as well as patient/kin/friend/healthcare professionals' experiences and perceptions, to determine who these people are (the population), what they experience and what matters to them. This was a mixed methods case study underpinned by pragmatism. It involved three sources of data: 1) A systematic literature review and synthesis of qualitative study findings pertaining to people with tracheostomy after a critical illness, and their kin/friends; 2) A cross-sectional descriptive study, secondary analysis of an existing UK dataset of people with stroke and tracheostomy (n=211); 3) A qualitative study using semi-structured interviews for data collection (n=18). Participants were survivors of stroke and/or acute critical illness/event who had required a tracheostomy (n=7) (between 1 and 4 years after critical incident/tracheostomy insertion), connected kin/friends (n=6) and primary care health care professionals (n=6). Initial analysis was inductive. Data were then considered deductively using two recent theories of critical illness survivorship as frameworks for analysis. This case study presents a patient group vulnerable to iatrogenic illness/events and ongoing chronic health. The literature review identified that people with tracheostomy typically have negative memories of their time in hospital. Much less is known about the experiences of patients, their kin/friends and supporting health care professionals once out of the acute hospital environment. The secondary analysis of a UK dataset identified that those who required tracheostomy to support stroke survival in the UK form part of a larger group of patients who have required tracheostomy because of critical illness. These patients face a prolonged hospital stay, considerable morbidity and uncertain outcomes. The most positive clinical outcome for patients with an acute event such as stroke and tracheostomy is removal of the tracheostomy and discharge home. The qualitative data highlighted that stroke or other critical illness event and tracheostomy can be considered both discrete parts of the early stages of a critical care journey and a trigger for long-term disruption influencing quality of life. Tracheostomy removal represents the end to one phase of recovery, with going home the start of another. Beyond a year of the event, survivors, their kin/friends and healthcare professionals are left frustrated by ongoing unresolved physical, social and psychological problems resulting from the stroke/critical illness event, tracheostomy, other co-morbidities and/or chronic illness. The study concluded that ongoing unresolved or chronic health problems and a lack of prognostic/diagnostic information mean survivors of stroke and/or critical illness who have required a tracheostomy continued to struggle to adapt and adjust several years after their time in critical care. This research highlights how they and their carers try to seek help from others to move on with life by trying to understand more about what happened while focusing on adjusting to life change but looking to the future rather than the past. This study adds to knowledge by describing a UK patient population of which little was previously known and exploring their journeys and experiences over time. It extends existing theory by highlighting that patients and their relative/friends continue to struggle to regain control, stabilise and recode life well beyond a year of stroke and/or critical illness and tracheostomy. Further research is required to understand how best to meet the longer-term needs of patients and their families as the health care system and workforce comes under increasing strain.
Tracheostomy, Stroke, Critical illness, Patient experience, Patient perspectives, Lived experience, Health care professionals, Health care staff, Health care teams, UK
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