Novel insights into abdominal wall hernia (AWH) and its negative impact on patients’ finances: “Doing my job was pretty impossible”

Unemployment is strongly correlated with ill health [ 1 ]. Health reasons are one reason people can become unemployed [ 2 , 3 , 4 ]. Indeed, people with pathology are more likely to be unemployed [ 5 ] or absent from work for prolonged periods [ 6 ]. Furthermore, job loss, or the feeling of not being able to perform one’s job, is associated with financial disruption, loss of assets, social withdrawal [ 7 ], and family disturbance. Such disturbance can often contribute to declines in psychological [ 8 ] and physical well-being [ 9 , 10 ], which not only diminish life satisfaction but can serve to prolong unemployment, perpetuating a vicious cycle. The importance of contextual factors, such as societal norms regarding work and gender expectations, which influence the severity of unemployment’s impact on psychological outcomes has also been shown [ 11 ]. Complex abdominal wall hernia (CAWH) is increasingly recognised as a condition with wide-ranging consequences extending beyond physical symptoms. While research has explored pain [ 12 ], body image [ 13 ], sexual dysfunction [ 14 ], functional restriction and mental health [ 15 ] in this population, the socioeconomic dimensions remain largely underexamined. Despite evidenced links between health and unemployment, there is a paucity of literature examining the effect of CAWH on employment. No qualitative study to date has explored in depth how CAWH shapes patients’ employment trajectories, financial security, occupational identity, and perceived role within the family unit. Understanding the experiences of CAWH patients is particularly relevant with respect to Quality of Life, as their significant physical limitations and surgical recovery can disrupt employment, potentially creating cycles of financial and psychological strain. Therefore, this study is the first to qualitatively examine CAWH patients’ experience of employment and financial disturbance. This study seeks to address this gap by using a phenomenological methodology to examine how individuals living with CAWH understand and experience the financial and employment-related consequences of their condition. By foregrounding patients’ narratives, this work aims to illuminate neglected aspects of disease burden and inform more holistic preoperative counselling, postoperative support, and broader models of care. This study adopted a phenomenological approach, qualitatively exploring human issues and subjects which can be emotionally laden. This approach suited our research focus and aim, to examine a patient’s lived experience of CAWH. Therefore, we used Interpretative Phenomenological Analysis (IPA) to examine participants’ lived experiences of the financial and employment disturbances CAWH can cause [ 16 ]. This research received study approval from the Hull York Medical School (HYMS), Integrated Research Approval System (IRAS) and Health Research Authority (HRA). It was conducted in accordance with the Declaration of Helsinki and has been reported according to COnsolidated criteria for REporting Qualitative (COREQ) guidelines [ 17 ]. The study protocol, patient information leaflet, consent forms, topic guide and interview schedules were designed and subject to an iterative approval process. All patients provided written and verbal informed consent. Participants were identified from the CAWH clinic at the York Abdominal Wall Unit. The sample was purposive, allowing for variation amongst participants, and included patients of all Ventral Hernia Working Group (VHWG) grades, those with previous cancers, previous wound infection, stoma, intestinal fistula, COPD, diabetes, smokers and obesity. A letter of invitation, along with an information sheet pertaining to the study, was sent to participants by the York Abdominal Wall Unit research team. Purposive sampling was used to capture a broad range of lived experiences across age, sex, employment status, comorbidity burden, and surgical stage. This approach aligns with phenomenological methodology, which seeks depth and diversity of personal meaning rather than statistical representativeness. CAWH is a heterogeneous condition encountered across working-age and older adults, and our sampling strategy was designed to reflect the demographic and clinical variation present in routine clinical practice. Selection sought to capture a breadth of lived experiences and disease severity rather than statistical representativeness, consistent with phenomenological methodology. The inclusion of preoperative and postoperative patients reflected the natural distribution of clinic attendance during the study period rather than an a priori decision to construct two comparison groups. The intention was not to contrast pre- and postoperative cohorts, but to ensure representation of both experiences within the overall phenomenon of living with CAWH. Semi-structured interviews were conducted by a Surgical Research Fellow (OS), using a topic guide, conducted between January and July 2020. The topic guide and interview schedule were tested in a small pilot study and refined (Supplementary File 1 and 2). Questions relating to finance and employment were contained within the topic guide and facilitated semi-structured discussion of these topics. For participants in paid employment, the semi-structured topic guide also included prompts relating to workplace functioning (e.g., ability to meet physical or cognitive demands), sickness absence, relationships with colleagues or employers, job security, and any adjustments or role changes necessitated by the hernia. For participants who were retired or not engaged in paid employment, interview questions were adapted to explore the impact of CAWH on functional independence, ability to undertake household tasks, caregiving responsibilities, social participation, and perceived role within the family unit. All participants were asked to reflect on their current lived experience rather than recollections from earlier life stages, ensuring that accounts centred on the contemporary impact of CAWH. Three interviews were face to face interviews and the rest were telephone interviews due to the Covid-19 pandemic. Each interview lasted between 45 and 90 min, and was recorded by dictaphone. Steps were taken to ensure trust worthiness of process by asking open questions, clarity check of answers, using prompts and probes. The interview recording was transcribed verbatim by a medical secretary independent of the research team. Pseudonyms were used to ensure anonymity and confidentiality. OS engaged in reflexivity and field notes were made throughout the data collection process. Data analysis was an iterative process until thematic saturation. Participant transcripts were analyzed using IPA within NVivo v12 ( https://www.qsinternational.com/nvivo/home ). Transcripts were analysed line by line to identify codes that may be grouped into a certain theme. Emergent themes were discussed with two gastrointestinal surgeons and two plastic surgeons who specialized in CAWR as well as an independent academic qualitative researcher, who does not have a surgical background (MM). This allowed triangulation of the findings as well as plausibility of results. Participants included 8 men and 7 women aged between 36 and 85 years (median = 65 years) covering all VHWG grades (Supplementary File 3 details their biographies). Participant social, biological, and clinical characteristics (with pseudonymised names) are summarised in Table 1 . "Employment and Finance" and its relevance to participants emerged as a theme on phenomenological interpretation of the transcripts. Three key themes pertaining to ‘employment and finance’ were identified: ‘financial pressure’, ‘return to work issues’ and ‘costs to family’; together visually represented in Fig. 1 . Employment and Financial impact of AWH Financial pressure emerged as a significant theme concerning employment. Many participants described challenges such as unpaid sick days, hospital visits and, in some circumstances, job loss. These financial pressures contributed to, and compounded, the psychological toll of navigating employment disruptions and changes to personal identity. George, a labourer and digger driver, shared his experience of eventually losing a job due to frequent sick days caused by his hernia. He described his symptoms of pain and increased bowel frequency as being impractical for his work environment. This situation profoundly impacted his mental health and motivation, with him stating, “I’ve lost a lot of interest in work. Work is hard at the moment.” George’s condition also created a sense of vulnerability and panic, especially regarding access to toilets whilst at work: “It has affected my work a lot as well, because I worry now if there’s going to be a toilet where I’m working. With being a digger driver, I could be in the middle of anywhere…we dig a lot of driveways out, and if the customer isn’t in (to use their toilet), I panic…I panic now going to work. I should maybe change jobs. I don’t know, I don’t know what to do.” Although George expressed a desire to seek alternative employment, he took pride in being good at his current job when able and acknowledged the significant financial repercussions of changing jobs. “I think I’m at the top of my game with digger driving, if I change and go somewhere else I’m at the bottom of the ladder and money won’t be as good. I won’t enjoy it. … I’m stuck.” A loss of finances and fiscal pressure were experiences also shared by Lisa and Marge. However, these experiences could contrast between those self-employed and those entitled to “sick pay”. Lisa, for example, noted whilst experiencing decreased income, “I’m quite lucky in that sense that as a teacher and I’m not self-employed, so I do have time allowed for sick pay.” These narratives highlight the dual burden of financial strain and identity disruption that many patients experienced. While George and Lisa provide vivid examples of employment-related disruption, variations of financial pressure were reported across the cohort. For some (particularly older or retired participants) the burden related to increased dependence on family, travel costs to hospital appointments, or managing household expenses on fixed incomes. Thus, although manifesting differently, financial strain was a recurrent concern expressed by the majority of participants. Participants reported two forms of struggle in the workplace; difficulties undertaking the required physical tasks and subsequent feelings of “inadequacy” and “letting teammates down”. As such, those employed in more physically intensive jobs disproportionately reported struggling in the workplace. This narrative was particularly true for Harry, Lisa and Marge who work in fitness, and became burdened by pain and restricted movements. Again, such struggles left participants feeling increasingly vulnerable, highlighted by Marge, a 36 year old woman who works with young offenders as well as a part-time personal trainer: “ I work with offenders, I felt a little bit more vulnerable than I would generally have done… if they kicked off I felt more vulnerable. Normally…I’m the sort of person where I would go straight in and try and sort out the problem, but…I’d step back a bit and I was a bit more cautious because I thought well, it would be harder if they come to attack me. I just felt vulnerable. I just thought it (the hernia and pain related to it) could go at any time.” Having given up fitness classes because of her hernia, it was important for Marge to retain her identity in the workplace even though it led to feelings of loneliness, alienation and inadequacy in the workplace. George expressed frustration, feelings of failure and guilt for “letting his team down” , explaining : “We do a lot of demolitions and I can’t go on demolitions now and pick , you know , pick pieces of wood out or anything. My boss understands…it’s just frustrating that I can’t do anything like that anymore”. Expressing similar concerns, Lisa stated: “I’m a PE teacher actually doing my job was pretty impossible. I wasn’t able to even physically get into a position to be able to support students safely. In terms of my job I just had to stop doing certain things… I had to stop actually teaching certain things and I really adapted the way I taught , which is not ideal really , when it is quite a physical job.” “it made me feel was incredibly guilty for the team that I was working in , I felt like I was letting them down. I hate taking time off work , because then they have to cover or someone has to come in and teach the groups and , the groups of children didn’t get the stability (of teachers)”. Demonstrating a shift from their norms, possible momentary identity disruption and the subsequent feelings associated with this induced shift, Lisa, Harry, and Marge appeared to experience inner conflict, questioning their abilities to perform their job functions, and therefore their role as a financial provider within their family units. The experiences shared by George and Lisa illustrate this theme, but similar concerns were articulated by participants across a range of occupations. For example, participants working in fitness, manual labour, and public-facing roles described guilt, frustration, and perceived inadequacy when unable to meet workplace expectations. These narratives were consistent across pre- and postoperative participants and across age groups. Participants’ concern and negative experiences often centred on threats to their role as a provider within their family units that their CAWH had initiated. This was true for males and females, regardless of age. Whilst most had not experienced job loss before and were in “professional” careers such as teaching, those experiencing financial difficulties were non-discriminate in terms of gender and age. Initially not ready to accept changes in employment, participants, like George, confessed to finding it difficult to taper their negative emotions associated with their employment issues and changes, largely due to the removal of their financial independence. Reflecting on their capacity to seek new perspectives related to their position as a financial provider, Lisa, Marge, and Harry turned to problem-focused strategies. For example, referring to potentially changing career even though it felt like a compromise and personal sacrifice, Lisa quoted: “I started to seriously contemplate well maybe I shouldn’t be a PE teacher, maybe I should start thinking about teaching another subject.” Furthermore, whilst Lisa stopped being a skiing instructor and personal trainer as she struggled to undertake these tasks, she retrained as a yoga instructor, strengthening her psychological and physical health, whilst providing necessary additional income to regain her sense of purpose and role as a provider. Lisa’s transition from skiing instruction and PE teaching to yoga instruction reflected her search for a role that allowed greater control of pace, reduced physical strain, and the ability to adapt movements around her hernia. Although yoga is a physical discipline, she described it as less demanding on the abdominal wall and more compatible with her symptoms than her previous roles. Other participants cultivated different strategies such as helping others through volunteering and Norman considered downsizing his house to lower expenditure. To move forward, some participants demonstrated openness to new ways of thinking and to new situations to help with their role as a provider. For participants above retirement age, the impact of CAWH manifested less through employment loss and more through reduced functional autonomy, difficulty performing household or caregiving roles, and increased reliance on partners or family members. Several older participants described discomfort, reduced mobility, and fear of sudden hernia-related symptoms as limiting their independence in daily activities. Although financial strain was less often linked to income loss in this group, indirect costs - such as reliance on others, travel expenses, and reduced ability to engage in valued activities - were frequently described as sources of frustration and emotional burden.