Tracheostomy after Critical illness
Research type
Research Study
Full title
An exploratory study of the experiences and perspectives of people who required a tracheostomy to support their survival beyond six months of critical illness, and those of their kin/friend and professional carers.
IRAS ID
272217
Contact name
Flora Douglas
Contact email
Sponsor organisation
The Robert Gordon University
Clinicaltrials.gov Identifier
SERP, 19-30
Duration of Study in the UK
1 years, 4 months, 2 days
Research summary
Research Summary
A tracheostomy is the name given to describe a surgical opening in the front of the neck where a small tube is inserted to clear secretions, maintain an airway or help to reduce support from assisted breathing. Those who suffer a stroke and are unable to support their own airway, may need a tracheostomy. Little evidence has been found to explore their personal needs beyond six months of having a stroke.\nThis study aims to explore the experiences and perspectives of people who have required tracheostomy support following a stroke, along with the perceptions of their kin/friend and professional carers, beyond six months from stroke survival. This is to determine how having a tracheostomy impacts on the patient experience following a stroke from the perspectives of those with first hand experience. This will be achieved through the use of qualitative research methods; semi structured interviews, observation of stroke participants and retrospective case note analysis. Three to six case studies will be based around three to six stroke participants (person with stroke diagnosis who required tracheostomy support), each case will include the perspectives of key supporting agents in the stroke participants life. This will include one kin/friend participant (friend, spouse, relative and/or informal carer of the stroke participant) and up to three health care participants (Health or social care professionals involved in their care at the time of study recruitment). Stroke participants will be located through electronic records held within the hospitals where they were initially admitted. Data collection is expected to last six to ten months depending on the success of recruitment and data collection. \nIt is envisaged that the findings of this study will help to inform, aid, tailor and plan future care for a patient group whose needs have not been previously examined.
Summary of Results
The recruitment process was slow but effective. In total 19 participants were recruited (seven primary patient participants, six kin/friend participants and six health care professional participants with 18 interviews conducted by the primary researcher via video software or face to face. It was found to be more problematic to recruit secondary participants (kin/friends or HCP participants). Those who declined to participate quoted lack of time or concern with undertaking an interview as their reason for not engaging. Others gave no reason but were lost to further follow up after initial engagement.
At the time of recruitment, time since admission to critical care and tracheostomy insertion varied across the group from between 12 to 39 months. All were living at home without tracheostomy. Two patient participants were recruited who had also experienced stroke, of those the time since critical illness varied by two years. Another influential difference, serendipitous of the time study recruitment commenced and not purposefully found, was that some participants were in hospital during the SARS-CoV2 pandemic whereas some had passed through this stage of their journey and had been discharged home prior to the pandemic. It was important to recognise these differences during the analysis process to determine any influence on patient experience.
Prior to the event that took them to the critical care unit some of the primary participants been living with chronic conditions including diabetes, asthma and hypertension.
Three main themes and seven related subthemes were identified in the data; Main Theme 1: The critical event
* Memories and/or knowledge of the critical illness experience.
* Tracheostomy experience.
* Going home.
Main Theme 2: Facing challenges and setting goals
* Addressing the past.
* Trying to overcome challenges.
Main Theme 3: Quality of life.
* Life disrupted.
* Adjustment.
These themes were associated with the journeys of patient participants (those people who had tracheostomy), their experiences and perspectives, as well as the experiences and perspectives of their kin/friends and HCPs.
The finding from the thematic analysis suggests, those people who had tracheostomy may be vulnerable to further mental and physical illness as well as financial deprivation having survived a critical event following which they and their families experienced prolonged distress and uncertainty.
The lives of both the people who had tracheostomy and their kin/friends were found to have been disrupted. People who had tracheostomy were potentially psychosocially affected by the trauma from their time in hospital and recognised changes in their physical selves were impacting on their quality of life.
Kin/friends observed times where their loved one’s survival was in question and were psychologically affected by the trauma of their loved ones falling ill, their fear of losing them and then the fear that they might never be the same.
Despite those people who had tracheostomy meeting many goals and challenges, most prominently surviving near death, tracheostomy removal and returning home, the process to get to this stage had not been straightforward. People who had tracheostomy described the reality of being unable to undertake activities of daily living once home, kin/friends struggled to juggle caring roles alongside other commitments such as work and children.
Those people who had tracheostomy survived but were left dissatisfied with aspects of their lives and selves. Influencing this appeared to be a lack of prognostic or diagnostic information about their condition, access to further treatment including psychological support and/or specialist rehabilitation, an inability to work and concerns over financial security. Some appeared to feel forgotten or ignored due to what would appear a lack of connection and continuity between current HCPs and/or health care systems.
Of those three people who had tracheostomy still actively seeing and being treated by HCPs, the HCPs interviewed were surprised by the recovery made suggesting they perceived this was a successful recovery outcome. However, they were also aware of continuing health issues which they were unable to address due to a lack of NHS services availability and resource constraints. For this patient group this appeared to specifically include physiotherapy, speech and language therapy and ear nose and throat services. Without knowledge of past experiences, continuity between HCPs and building a relationship with their patients, they struggled to recognise and address their patients’ psychological needs. Unaware of what the future may hold they could see the benefits in their patients privately resourcing therapies or making home improvements.
Still seeking further information, diagnostic/prognostic procedures and/or further recovery some patient participants were left with unmet needs, still waiting for rehabilitation, diagnostic/prognostic procedures or further medical treatment. They appeared in a state of limbo uncertain if they would experience further recovery. For those patient participants and their kin/friends who were able to, they sought what help they could to meet their needs through charity organisations, private resources and other serendipitous avenues.
Those patient participants appeared to still be struggling to accept and adjust to some aspects of their changed lives trying to gain independence. Kin/friends and HCPs were attempting to help them to adjust and adapt through motivation, positivity, encouragement and trying to promote independence. However, uncertainty for further recovery challenged this. This uncertainty left those patient participants with some hope which current HCPs were wary of addressing at risk of the impact it may have on their patient’s psychological wellbeing.
What mattered most to those patient participants and their kin/friends appeared to be to receive clear, honest but empathetic communication, prognostic and diagnostic information and access to rehabilitation support services. This included treatments such as physiotherapy, occupational therapy, speech and language therapy, ear nose and throat and psychological support including counselling.
Tracheostomy removal appears impactful on the memories of those people who had tracheostomy with most describing not knowing what was happening to them or being unclear about the process. It also appeared to influence positive outcomes with return of voice, reconnection with loved ones and progression towards home or specialist rehabilitation centres. However, all people who had tracheostomy and their kin/friends recognised a voice change thereafter. However the only long term impact from the tracheostomy appeared to be for those people who were left with voice weakness, change and projection. They themselves, their kin/friends and HCPs all questioned whether the tracheostomy had caused damage which could not be recovered from. For those people who'd had tracheostomy who also experienced stroke the question remained as to whether their voice change was due to damage caused by the stroke or the tracheostomy. Due to the lack of diagnostic procedures being carried out in advance of hospital discharge all participant groups were left questioning what was wrong.
Without a clear diagnosis/prognosis treatment plans could not be made. This appeared to add to the uncertainty and frustration experienced by two of those people who had tracheostomy as they struggled to adjust to the change they noticed in their voices, still hoping for further recovery.
This study provides evidence to suggest that this patient groups lives were saved through the support of Scottish NHS critical care services. However, this had left them recalling traumatic experiences and life was no longer the same. Their ongoing quality of life was now dependent on their families and friends help and support, their finances, what resources they could source and what diagnostic procedures and referrals had been made during their time in the acute hospital to enable timely follow up and/or treatments.
It would appear to fully meet those unmet needs it could have financial implications for those people and their families or require the support of charity organisations or social services. No clear pathway towards appropriate sign posting to support the unmet needs of those people who had tracheostomy was apparent through these findings with all describing different avenues taken to try and find solutions.
These findings may also be negatively exacerbated by the impact of the SARS-CoV-2 pandemic at a time where primary care services were restricted in what they could offer to their patients. Those with stroke appeared to describe greater support when first home from hospital than those who had become critically ill following SARS-CoV-2 or Sepsis. This suggests clearer pathways of care and sign posting may have been established for those with a diagnosis of stroke than those people who become critically ill and required tracheostomy due to other conditions including SARS-CoV-2.REC name
North of Scotland Research Ethics Committee 1
REC reference
20/NS/0137
Date of REC Opinion
30 Nov 2020
REC opinion
Favourable Opinion