Of the 73 patients approached to participate in the study, twenty-four participants (33%) who had received reconstructive surgery for their LTS at the National Centre for Airway Reconstruction were recruited. Five focus groups with 22 participants and 2 semi-structured Skype interviews were completed between January 2019 and August 2019. Participant demographics are presented in Table 1. Analysis of responses from the focus groups and interviews revealed three overarching themes (see Fig. 1). The themes captured from the focus groups were consistent with those identified from the interviews. The first theme focussed on the physical experience of LTS and the surgery, symptoms and their management: physical journey. The second theme explored the impact of LTS on identity and its influence on social/personal and professional experiences: emotional journey. The last theme related to the experience of diagnosis, treatment and surgery as a patient: medical journey. Each of these themes encompassed multifactorial sub-themes (see Fig. 2).
Table 1 Demographics of participants (n = 24) Whilst every participant acknowledged they would always “choose to breathe” and have reconstructive surgery, there was a unifying thread that other aspects of their lives were affected by that choice as well as the underlying condition. This paper focuses on swallowing and how this was experienced by patients with LTS and their management. Table 2 presents the self-reported symptoms of dysphagia from the study participants and Table 3 the available clinical details of dysphagia assessment for the cohort. Consistent with these findings and individual phenomenology, there was variability between participants in their experience of dysphagia. However, due to the use of a consistent topic guide all participants expressed opinions and attitudes that related to their personal experiences of swallowing. Each theme and sub-themes are supported by quotations from patients. These are presented with the code M/F to indicate gender (male/female), age and FG (Focus Group) or I (Interview) along with a number for each focus group (1–5), for example F, 45, FG3 or M, 27 I1.
Table 2 Patient reported dysphagia characteristics of cohort Table 3 Available details of dysphagia assessment for cohort Theme 1: The Physical Journey
Presence of Symptoms and Adaptation
The physical experience of dysphagia was an acknowledged aspect of both LTS, and the reconstructive surgery required to manage the condition. Participants reported symptoms of choking, coughing and food sticking throughout the trajectory of their illness and treatment. The need to adapt how, when and what you eat in order to manage these symptoms was repeatedly referred to.
Depending on how many furball moments I have had in a day, is how I then have to think about what I am eating, and how I am eating. So, if I had had three or four already in the day I’ll think, ‘Actually, I’ll probably be alright if I eat my dinner now because I have shifted it,’ but if I haven’t had many furball moments then I know it is going to be a little bit more difficult.2 (F, 78, FG5)
Benefits of Therapy
For some participants these difficulties resulted in instrumentally identified dysphagia, particularly following surgical intervention. This required therapeutic assessment and management by Speech-Language Pathologists and was acknowledged as a positive experience.
I was still on tube feed after the operation…I kept having swallowing tests and doing a hundred tongue exercises a day and they worked! They really did. (F, 58, FG1)
Importance of Self-management and Control
However, a strong sub-theme of coping with dysphagia as part of the physical journey of LTS was the ability to be able to self-manage difficulties, without professional intervention. Unlike other symptoms, for example dyspnea, dysphagia was frequently rationalised despite potentially meeting the criteria of a disordered swallow. Participants defined swallowing difficulties in a covert way. They reported their ability to hide them with simple actions or behaviours. For example, they described the need to have water with them all the time to alleviate the sensation of dryness they experienced and mitigate the symptoms and associated difficulties with certain food groups.
It’s not a straightforward swallow. There’s definitely something which causes it to lodge. And then I have a drink of water and it does go. (M, 80, I2)
This sense of being able to manage the physical symptoms of dysphagia seemed important for participants as it was an aspect of their condition that they were able to exert a degree of control over. As one participant (F, 75, FG5), who had dysphagia therapy in the past but did not wish to continue with it, described “It’s making something [swallowing] that we mostly do naturally, to make it quite deliberate, isn’t it? It’s learning how to make things deliberate, that we already in the past have learnt, you know quite intuitively”.
Theme 2: The Emotional Journey
Fear and Anxiety/Lifelong Condition
The emotional aspects of dysphagia were embedded within the psychosocial impact of living with LTS. Patients reported fear and anxiety that related to living with a rare, lifelong condition. They described the way their lives were negatively impacted. This included significant worries related to swallowing. For some participants the dysphagia associated with their dyspnea was a major cause of their distress:
Before I had my first reconstruction I could hardly breathe whatsoever. I couldn’t eat, because I was choking on everything and I literally thought I was dying basically. (F, 57, FG5)
Mental Adjustment and Autonomy
Other participants acknowledged the existence of dysphagia but used practical language that reframed and normalised their difficulties. For the majority they could live with their dysphagia symptoms without needing to disclose them to others as part of their condition or receive extra formal treatment. This indicated mental adjustment to the impact that dysphagia had on their lives:
After the reconstruction I had swallowing tests and I mean I can swallow, its fine. I just find sometimes it makes me cough if I, probably if I rush or drink something that goes down the wrong way. (F, 53, FG1)
Participants’ autonomy in managing the condition was a key sub-theme within the emotional journey. It demonstrates the importance of robust internal coping mechanisms to be able to live with LTS successfully. This was a key aspect to the experience of dysphagia for most participants. While they acknowledged an alteration in their swallowing compared to “normal,” they were able to reframe the experience so that it did not cause them emotional distress. This was supportive of the sense of control necessary when considering the physical aspects of the dysphagia.
And I got so fed up [of the puree menu], I knew I’d be alright if I could just eat some soup… in the end I wrote to the dietitian ‘I’m not daft, I’m not going to push it. The puree diet is awful, can I just have some soup. I’ve weaned a baby, I know what I’m doing, I’ll be alright’…And once it was officially on the wall then they’d give me soup. And then I could eat soup, I could eat ice cream and I could eat the middle of a baked potato, mashed up with tuna or cheese. Not a lot of it, but I could at least eat a little bit…so that was what I lived on for two weeks. But I didn’t have to have the feeding tube put back in. (F, 43, FG1)
Support Network
For other participants, their external support network was key to helping them cope with both their dysphagia and their LTS. They reported the importance of family and friends who understood their condition and had been part of their journey, as well as the safety net they presented.
I worry now that I might choke one day, that I can't get up what’s there, it’s a big lump and I can't get it out. And, I always say to my husband, ‘If I’m choking and it’s really not shifting, you are going to have to ring 999 very quickly, because there is no way I’m going to get this out (F, 60, FG5)
Social Limitations
There was also an acknowledgement of the limitations dysphagia and LTS placed on social activities and the altered routines that became necessary as a result. This included the choice to avoid eating out, or eating with strangers, because of worries associated with the stigma of dysphagia symptoms. This presented a limitation to life that was shared by both participants and their families.
Yeah, I mean, well, I have trouble with eating I mean I haven’t been into a restaurant …with the wife for many, many, many years because I daren’t go into a restaurant because if I start choking that’s it (M, 68, FG3)
Theme 3: The Medical Journey
Most participants referred to the medical aspects of their LTS diagnosis and treatment, and the way their swallowing was managed as a result of this. A key context to this theme is the need for patients to have a nasogastric tube (NGT) inserted during surgery due to the impact on the swallowing mechanism. Formal swallowing assessment is completed in the days following surgery to allow patients to recommence oral intake as quickly, and safely as possible. However, for some patients a period of nil-by-mouth (NBM) is required. Sub-themes included the benefits and pitfalls of staff expertise, medicalisation of swallowing and the importance of information provision and explanations, for example in relation to surgical protocols and usual care.
Expertise Versus Complacency
Participants were relieved to be treated at a centre of excellence, by staff who had experience of LTS, but expertise also led to complacency and lack of information and compassion about the surgical protocol. This included key aspects of their care that related to management of their swallowing:
I didn’t know I was going to have a feeding tube. That was the first thing I remember, the only thing I remember waking up was being pushed forward on the ward so they could X-ray me to check that the feeding tube was down the right hole…I had a bit of a shock (F, 46, FG4)
Medicalisation
Participants discussed the medicalisation of eating and drinking, the need for graded return to oral intake following surgery, and the cautious approach of their clinicians. This was often felt to be unnecessary by participants who had no concerns relating to their ability to swallow:
The only thing I found absolutely awful was the food, well, I never had a problem with the swallowing and as soon as I could I got off that bloody liquid diet stuff…and then…after two days of soft food… I then went on to the harder stuff because I thought I can’t eat this [the modified diet] (F, 69, FG3)
Participants were frustrated by the lack of trust placed in them by healthcare professionals to make sensible choices in relation to dietary modification.
Information Provision and Protocol
A key sub-theme was that they were unaware or confused about the process of swallowing assessment and the clinical rationale for recommendations. Participants could recall being kept nil by mouth (NBM) following their surgery and waiting for swallowing tests but were often unsure about why; or which healthcare professionals were responsible.
I do remember a few people stood around trying to assess whether I could eat or not, but I can’t remember if they were doctors or speech therapists, and I think they gave me a yoghurt, or something, and just stood and watched me eat it. (F, 31, FG2)
Participants who had been provided with clearer information relating to surgical protocols and explanations of swallowing assessments and management expressed more satisfaction about their hospital experience, even if they had experienced more significant dysphagia symptoms.