Recruitment

Purposive sampling was used. Mesothelioma UK, regional asbestos support groups and veterans’ support organisations disseminated information about the study on social media. Those interested in participating were asked to call the Mesothelioma UK helpline to obtain further information. They were then contacted by the researchers and sent a participant information sheet.

To participate, caregivers had to be:

Six participants were recruited. Two were daughters and the other four were spouses, one of whom was a veteran themselves. Participants were in their early 40s to late 70s and their relatives were in their late 40s to late 80s. Participants lived in England or Wales.

Data collection

Each participant took part in an individual semi-structured interview with the lead author (VS). To develop the interview schedule, VS drew on the literature about the lived experience of mesothelioma – including Ejegi-Memeh et al (2020) – and consulted patient and public involvement (PPI) representatives. Box 1 shows the interview schedule.

During the interviews, VS also used prompts and probes as needed, for example ‘What was that like for you?’, ‘What did that mean to you?’, ‘Tell me more about…’

The interviews took place between September 2020 and March 2021 via an online videoconferencing platform and lasted between 58 and 115 minutes. VS and the participants did not know each other before the study. The interviews were digitally audio recorded and field notes were taken afterwards. Verbatim transcripts of the interviews were made and anonymised.

VS is an experienced qualitative researcher and a counsellor with expertise in trauma and bereavement. In the context of this study, VS held two statuses – she was a civilian (an ‘outsider’) and a lung cancer survivor (an ‘insider’). To ensure self-care, VS accessed counselling for the duration of the study. To manage potential bias, VS practised narrative reflexivity and consulted PPI representatives at various stages of the study.

Data analysis

VS analysed the data following the six IPA steps (Smith et al 2009) in a rigorous immersive and iterative process aimed at developing themes. VS and the other researchers (AT and BT) met regularly to consider the themes’ credibility and grounding in the data. A software programme was used for sorting and storage of data.

Ethical considerations

The University of Sheffield provided ethics endorsement. This covered issues such as obtaining written informed consent and avoiding harm to participants. UK Health Research Authority approval was not required as participants were recruited and the study was conducted without involving NHS staff or systems. Before each interview, VS explained to participants that their anonymity and confidentiality would be protected, and that the data would be published, and asked them to give written informed consent.

Going the extra mile

This theme covered how veterans and caregivers reacted to the diagnosis and prognosis, how they managed daily tasks and how they experienced other people’s support.

Staying the same person

The focus of this theme was on identity issues and how mesothelioma changed the ways veterans saw themselves and others saw them. There was often a clear underlying influence of their military background. Psychological benefits were derived from a stoic outlook, humour, being goal-oriented and putting others first. However, holding to high military standards such as loyalty sometimes led to broken trust, resentment and despair.

Needing to know

This theme covered information sharing within the inner circle of family and friends, the exchange of information with professionals and the desire to raise awareness about the risks of exposure to asbestos. In the armed forces, straightforward ‘need to know’ communication is a priority and this influenced caregivers’ and veterans’ experiences.

Pain and the militarised body

Pain is a major symptom of mesothelioma and increases the burden on patients and caregivers (Hoon et al 2021). The study found that both the veterans’ and their caregivers’ responses to pain were influenced by their military background. Veterans may tolerate intense pain without seeking help (Engward et al 2018). Hitch et al (2020) identified that help-seeking among veterans could be hampered by pride and that their use of humour as a way of coping with pain could prevent healthcare professionals from identifying their needs, for example in relation to pain management.

All participants referred to the fact that their relative’s pain was sometimes challenging to control. Having to manage medicines at home can put great pressure on caregivers (Wilson et al 2021). Furthermore, caregivers who identify closely with military customs may experience shame when they fail to maintain their physical fitness. Caregivers of veterans tend to de-prioritise their own well-being, with negative implications for their psychological health (Royal British Legion 2021).

After their time in service, veterans often keep exercising. Maintaining a highly-trained militarised physicality and remaining physically active can be important aspects of their transition to civilian life and their retirement (Grimell 2019, Williamson et al 2019). Older patients with mesothelioma are less likely to receive active treatment than younger patients (Warby et al 2019, Freudenberger and Shah 2021), which may leave older veterans feeling that they have been ‘written off’. This can be counterbalanced by offering rehabilitation, which encourages physical fitness, self-management of symptoms and social interaction, and can benefit patients from diagnosis onwards (NIHR Applied Research Collaboration South London 2019).

Influence of secrecy and comradeship

The study showed a wide spectrum of how veterans and their caregivers exchanged information. The military’s inbuilt secrecy was mentioned by participants as an influence on people’s habits regarding talking about emotions. Protective buffering – when a person avoids open communication to avoid distressing the other – is an approach employed by military couples coping with illness (Thandi et al 2017). This may have negative effects, such as feelings of isolation and worsening mental well-being (Thandi et al 2017).

However, comradeship within the military can be experienced as intensely intimate (Brewster et al 2021), so a couple can feel very close if the veteran views the spouse caregiver as on the same ‘team’ as them, enabling optimal adjustment and planning. This idea matches Thandi et al’s (2017) message that veterans and their caregivers may overcome challenges by collaborating, viewing physical ailments as hazards ‘to defeat together’.

Discussing prognosis and fostering hope

The study’s focus on individual experience enabled the researchers to draw out differences in the way veterans and caregivers experienced mesothelioma. An important difference concerned their coping strategies and their desire for prognosis-related information. Veterans immediately engaged in a way of coping that focused on achieving tasks and solving issues. This matched the MiMES findings (Ejegi-Memeh et al 2021). The armed forces work by deploying a certainty-based frame of reference to handle unpredictable situations. When veterans find themselves faced with a life-threatening illness, task-oriented activities such as finding facts and making plans give them a sense of security. For civilians, however, an avoidant coping style may make more sense.

Lelorain (2021) researched how healthcare professionals could best discuss prognosis with patients diagnosed with cancer and recommended that they start by developing a rapport with the patient and assessing their information needs, avoid discussing the prognosis unless they already know the patient and postpone discussing the prognosis if the patient seems highly distressed. Healthcare professionals should also ask patients and family caregivers how much prognostic information they want. In a palliative care context, seeing patients and caregivers separately enabled healthcare professionals to meet different information needs (Swetenham et al 2015).

Taylor et al’s (2019) study highlighted that, since breaking bad news can have lasting negative psychological effects on patients, a balance must be achieved in the communication of such information. The researchers also found that most participants preferred information delivered directly and honestly but also allowing hope (Taylor et al 2019). Henson et al (2019) showed that, among all patients with cancer, those with mesothelioma had the highest risk of suicide in the six months after diagnosis. Negative messages from healthcare professionals can result in hopelessness (Ball et al 2016, Girgis et al 2019). Fostering hope is important when giving a diagnosis of incurable cancer and is possible if couched in terms of achieving short-term goals, which may be particularly relevant for people with a military background.

Limitations

The sample size was small. However, IPA is designed to generate in-depth understanding from small samples, since it allows focus on individual nuance and since every participant brings a unique, useful perspective (Smith et al 2009).

VS’s status as an ‘outsider’ may have compromised communication with participants. However, an outsider may take less for granted and participants from a masculinised military background may feel more comfortable talking about challenging topics with a female civilian researcher. VS’s status as an ‘insider’ may have made it more difficult for her to stay open to different possibilities in the data but may also have brought deeper insight.