A total of 5% reported no problems. Logistic regression adjusted for age, gender, treatment, and tumor stage and site showed increased odds of reporting DM and DSE for chemo-radiotherapy (CRT) alone compared to surgery alone (odds ratio (OR): 4.7, 95% confidence interval (CI): 2.5–9.0; OR: 2.1, CI: 1.1–3.9), but decreased odds for HDS and PHN . Survivors with UICC stage IV at diagnosis compared to stage I had increased odds of reporting HDS . Laryngeal cancer survivors had reduced odds compared to oropharynx cancer survivors of reporting DM  but increased odds of HDS . This study provides evidence of the serious long-term problems among HNCS.The long-term problems of head and neck cancer survivors (HNCS) are not well known. In a cross-sectional international study aimed at exploring the long-term quality of life in this population, 1114 HNCS were asked to state their two most serious long-term effects. A clinician recorded the responses during face-to-face appointments. A list of 15 example problems was provided, but a free text field was also available. A total of 1033 survivors responded to the question. The most frequent problems were ‘dry mouth’ (DM) ( Of the estimated nearly 19.3 million new cancer cases diagnosed worldwide in 2020, approximately 932,000 ~5%) were head and neck cancer (HNC) cases, making it the seventh most frequent diagnosis for that year. In terms of mortality, in 2020 around 467,000 deaths were attributed to HNC % were he. The HRQThe “Late Toxicity and Long-time Quality of Life in HNC Survivors” project (EORTC 1629) is an international cross-sectional study aimed at assessing the long-term quality of life and toxicities present in survivors of HNC. To participate, survivors had to be five years or more post-diagnosis. Additional inclusion criteria included being at least 18 years old at the time the invitation to participate was sent, being able to understand questionnaires in the local language, and having no diagnosis of lymphoma or skin cancer in the head and neck.In the study’s case report form (CRF), a question was included that asked: “From the patient’s point of view, what are the top two most serious long-term effects the patient is currently experiencing?”, (hereafter referred to as the ‘long-term effects question’). The question was followed by a list of 15 possible long-term effects to help explore potential problems with the patients, but patients were also permitted to state problems that were not listed. The list of 15 problems was established collaboratively a priori among clinicians in the study as part of the development of the CRF and included ‘pain in the head and neck region’, ‘pain at flap donor site’, ‘difficulty swallowing/eating’, ‘difficulty breathing’, ‘hoarseness or difficulty speaking’, ‘dry mouth’, ‘numbness in the face and/or neck’, ‘neck stiffness’, ‘fatigue’, ‘social isolation’, ‘sialorrhea’, ‘trismus’, ‘osteonecrosis’, ‘fistula’, ‘dissatisfaction with facial appearance’, and ‘other’ followed by a free text field.If the survivor agreed to participate, he/she was invited for a one-time assessment at the local clinic. The clinician recorded the patient’s response to the long-term effects question in the CRF. The data at each site were collected in paper form and then either scanned and sent electronically or sent in paper form by post to the coordinating center in Mainz, Germany, where it was entered into a web-based database created by the Evaluation Software Development company ; the onlThe content of the free text field was examined manually, and new categories of side effects were created as required. This was done by first listing all the free text entries and then grouping similar entries together or assigning entries to one of the 15 options already listed.Categorical data are presented as absolute values and percentages and continuous data as means with standard deviations and/or ranges. Logistic regressions were performed to explore characteristics associated with the top four most commonly reported problems adjusted for age as a categorical variable, diagnosis group, treatment group, gender, and UICC  stage. Before the logistic regressions, the variables were examined for polychoric correlation to investigate multicollinearity as all variables in the model were ordinal or nominal. All confidence intervals (CI) reported are 95%. No ranking of the problems was considered as the survivors were not asked to indicate which of the two problems was the more serious or if they were equally serious. All analyses were carried out using SAS  version 9.4.The EORTC 1629 project enrolled survivors at 26 sites in 11 countries; most countries were in Europe, but sites in Japan, Israel, and Brazil also participated. The first survivor was enrolled in October 2018 and the last in November 2021. Among the 1114 participants, 1033 responded to the long-term effects question. The majority were male and had oropharyngeal, oral cavity, or laryngeal cancer . Most sun = 476, 46%), followed by ′difficulty swallowing/eating′ , ′hoarseness/difficulty speaking′ , and ′pain in the head and neck′  ; ′dental problems′ ; ′coughing/sticky saliva′ ; ′problems with hearing (not tinnitus)′ ; ′tinnitus′ ; ′mental/memory problems′ ; ′nose problems (not trouble smelling)′ ; ′sexuality problems′ ; and ′arm/shoulder/hand problems′ .One hundred seventy-three survivors (17%) reported only one serious side effect, 770 (75%) reported two side effects, 32 (3%) reported three side effects, two (0.2%) reported four side effects, and 56 (5%) reported that they had no serious side effects. Although the survivors were only asked for two serious problems, a small portion wanted to state more than two, and this was permitted. ′Dry mouth′ was mentioned most often  . A totalFour survivors (0.4%) indicated they had a serious problem but did not give details ; these survivors were not excluded as recurrence or a second primary is also a reality for some patients who have survived more than five years since their first diagnosis. We looked at problems reported by these survivors on their own and found that two reported having no serious current problems. Their most frequent four problems were the same as the rest of the study population: 12 reported difficulty swallowing/eating, 11 had problems with pain, 9 with dry mouth, and 6 with hoarseness/difficulty speaking.A small percentage of survivors reportedly had current evidence of disease  reported in this section have been adjusted for age, gender, tumor subsite, UICC stage, and treatment received .A negative association with age was found for ‘pain in the head and neck’, with the two middle age groups (60–69 years and 70–79 years) compared to the survivors younger than 60 years old, with respective ORs of 0.6 (CI: 0.4–0.9) and 0.4 (CI: 0.2–0.6) . This waNo strong evidence was found for associations between ‘difficulty swallowing/eating’ , ‘hoarseness/difficulty speaking’ , or ‘pain in the head and neck’  and gender. However, some weak evidence for females being more likely than males to report ‘dry mouth’ as a serious problem was found In terms of tumor subsite groups, compared to oropharyngeal cancer survivors, survivors of hypopharyngeal , laryngeal , nasal cavity/paranasal sinus , and oral cavity cancer  were less likely to report ‘dry mouth’ as a serious problem. Survivors of nasal cavity/paranasal sinus cancer  and salivary gland cancer  were also less likely to note eating/swallowing as a main problem compared to oropharyngeal cancer survivors. Also as compared to oropharyngeal cancer survivors, considerably increased odds were found for reporting ‘hoarseness/difficulty speaking’ among survivors of hypopharyngeal  and laryngeal cancer  .Survivors whose tumor was UICC stage II or IV at diagnosis had increased odds of reporting eating/swallowing problems compared to those with a stage I tumor . Survivors of stage III tumors also had increased odds, but the evidence of association was weaker . There was no evidence of an association between the UICC stage and the other three most frequent problems .Some evidence was found for an association between the type of treatment received and all of the four most frequently reported problems. Compared to survivors who had been treated with surgery alone, there were increased odds of reporting ‘dry mouth’ as a serious problem for survivors who had chemo-radiotherapy (CRT) , radiotherapy (RT) , and ‘surgery and RT +/− CT’ . Increased odds for ‘difficulty swallowing/eating’ were found for survivors who had CRT  or ‘surgery and RT +/− CT’  compared to survivors with surgery only. All treatment groups had reduced odds of reporting ‘hoarseness/difficulty speaking’ as a serious problem compared to the surgery-only group. For ‘pain in the head and neck’, reduced odds were also found for survivors who had CRT  and RT .Our results showed that the most frequent serious long-term problems reported by HNC survivors were dry mouth, difficulty swallowing/eating, hoarseness/difficulty speaking, and pain in the head and neck, with a range of additional problems reported. In particular, we found evidence that oropharyngeal cancer survivors were more likely to report having a dry mouth as a main problem compared to nearly all other HNC sites. This is plausible as radiation doses to salivary glands are usually higher in the case of oropharyngeal cancer due to the vicinity of the oropharynx and involved nodal areas. Oropharyngeal cancer survivors also had increased adjusted odds of reporting difficulties in swallowing/eating as a main problem compared to nasal cavity/sinuses and salivary gland cancer survivors. The extent of these problems in oropharyngeal cancer patients treated with surgery or radiotherapy was investigated in a study from Denmark, reporting the highest symptom burden score for dry mouth at 12 months among radiation patients and sticky saliva scores for transoral surgery patients; however, the “problems with social eating scores” were not among the top problematic issues reported, but this study only included 44 patients and none of them were stage IV . Among aOur results suggest that a higher UICC stage is associated with the odds of experiencing ‘difficulty swallowing/eating’ as a serious problem, which perhaps was detectable in our data because of the larger proportion of more severe tumor stages. Of course, patients with higher-stage tumors can expect to also receive more aggressive therapy, but our analysis controlled for treatment and still identified an association. It is also possible that survivors who had the advanced disease already had more swallowing and eating problems at diagnosis. Our study did not find an association between UICC stage and dry mouth, which was also reported by a study on oropharyngeal cancer survivors at a median of six years post-treatment . InteresOur results for markedly increased odds of having difficulty speaking for laryngeal cancer survivors were not surprising given the core role of the larynx in speaking. Results from a prospective cohort study on laryngeal patients up to 1 year after laryngectomy showed the second highest symptom burden for trouble speaking at 1 year . A long-‘Pain in the head and neck’ showed some association with age in our study, with survivors younger than 60 being more likely than 60–69-year-olds or 70–79-year-olds to report pain as a serious problem. The extra look into the employment status of the survivors who reported pain versus those who did not revealed no notable difference in terms of distribution, so the current employment status does not seem to be an associated force behind this. A recent study from the United States reported an association between pain and adverse employment outcomes among cancer survivors, with survivors with moderate pain reporting early retirement and other reductions in employment more often . HoweverThe problems that were reported less frequently are nonetheless interesting and provided insight into problems that may not be captured on standard questionnaires. For example, the eye problems described by the survivors are not part of the European Organization for Treatment of Cancer (EORTC) core questionnaire or the head and neck module, and it is possible that issues related to survivorship are missing ,15. An eOne of the limitations of these results is that we cannot say anything about the number of problems that the survivors would consider serious as we specifically asked for two problems and not a list of all problems they may be experiencing. The study may also have a selection bias because the data collection was performed in the hospital, meaning that the survivors who had the most serious problems of all may not have been able to participate. Moreover, because we asked for the survivors’ most serious problems, it is possible that the problem is not particularly detrimental to them if the survivor, in general, is doing well but wanted to nonetheless provide an answer to what for them is the most serious problem. If survivors who truly did not have a serious problem felt compelled to nonetheless give an answer, the results may have been inflated. However, the aim of the analysis was not to document symptoms that are ‘serious’ as measured on an objective scale, but rather are considered serious by the patient, regardless of the extent, so this would have been difficult to mitigate. This reflects a fundamental difference between asking a patient to report the problems they feel are serious and systematically measuring a set of symptoms; what one patient considers serious may not be serious to the next. We also cannot rule out that additional health problems or current irritations had a greater influence on the responses than the effect of the HNC disease and treatment. In addition, while some clinicians noted in the free text field when a survivor reported having no problems, this was not specifically asked for, and it could be that some of the survivors who appeared to not have responded to the question actually did not have any problems to report; however, we cannot know this. The list of potential problems provided in the CRF may have steered the survivors towards specifically these problems; nevertheless, a framework for the discussion was wanted and at least with the list all clinicians had the same starting point. It is possible that the face-to-face setting had an influence on the patients’ responses, and that they may have been more forthcoming about more sensitive issues such as problems with sexuality in a written format. The strengths of this analysis include the large number of survivors included and the international setting with a range of diagnoses, tumor stages, and treatments. In addition, this study’s requirement to be at least five years’ post-diagnosis provides a more accurate picture of the main serious problems experienced by survivors in the long term compared to studies including up to 1 or 3 years of follow-up.The importance of long-term follow-up care and long-term assessment of problems is part of the recently published survivorship care recommendations of the European Head and Neck Society . We have


This research was designed to generate understandings of drivers and experiences of suicidal ideation and distress among Australian Construction Industry (ACI) workers, as well as what helped during these experiences.Fifteen participants, from a variety of ACI or closely associated roles, with an average age of 45 years (29–66), engaged in individual, semi-structured interviews. Interviews were audio-recorded with consent and analyzed using descriptive thematic analysis.Eight themes relating to what may drive the presence of suicidal ideation and distress were identified; 1) challenges of working within the ACI, 2) relationship and family issues, 3) social disconnection, 4) personal financial hardship, 5) perceived lack of support, 6) alcohol and drug use, 7) child custody/access and legal issues, and 8) experience of mental health challenges, trauma, or a significant adverse life event. Four themes relating to experience and expression of suicidal ideation and distress were identified: 1) suicidal thoughts, 2) impaired thinking, 3) observable expressions of suicidal distress, and 4) lack of observable expressions of suicidal distress. Six themes relating to what helped during experiences and well as what can be done by the ACI to help mitigate experiences, were identified: 1) presence of colleague and managerial support, 2) MATES in Construction, 3) engagement with non-work activities and social support, 4) personal skills and knowledge relating to suicide and mental health, 5) high level industry integration and engagement with support programs, and 6) work hours and expectations changes.Findings highlight several industry and personal related challenges that may drive experiences, with many potentially mitigatable by ACI changes and focused prevention strategies. Participant suicidal thought descriptions align with previously identified constructs deemed central in suicidal trajectories. While findings highlight several observable expressions of suicidal ideation and distress, challenges associated with identifying and assisting individuals in the ACI who may be struggling were also reported. Several factors that helped ACI workers during their experiences, as well as what the ACI can do to mitigate future experiences, were identified. Recommendations are made based on these findings, encouraging a more supportive work environment, as well as continued development and increased awareness of support and education systems. For exaGiven the developing nature of the area, reasons for increased CIW vulnerability to suicide remain open for debate. While recent reviews of the topic have shed some light on what may drive these outcomes, they also suggest further research, with a particular focus on understanding drivers from within the industry, is required , 7. AddiIn addition to the suggested utility of research focused on the drivers and experiences of suicidal ideation for CIW, as well as what helped during these times, recent reviews also propose the importance of a more nuanced, national direction within this research stream. These reviews indicate that driver relevance may be linked to a complex interplay between the individual and the cultural and socio-political context within which the industry functions . For exaThe Australian Construction Industry (ACI) has been repeatedly shown to experience increased suicide vulnerability . While p2.2.1.n = 2); their experience of supporting someone experiencing suicidal ideation who was working within the ACI at the time (n = 8), or a combination of the two (n = 5). All bar one individual was employed in the ACI, or within roles closely associated with the industry , during the time of experience, with majority of participants remaining employed within the ACI at the time of interview. Most participants also reported long term work histories within the ACI, with many highlighting changes to their roles during their time in the industry . The single participant not employed directly in the ACI had intimate knowledge of industry, both from personal relationships with those working within the industry, as well as direct, repeated, and regular engagement as a consultant to ACI employees, as part of their work role.Participants were all aged over 18 years and responded to questions based on either their personal experience with suicidal ideation while employed in the ACI  South Australia, as well as promotion via the various MIC social media platforms. A small number of participants were recruited via personal and professional contacts of the authors or support workers from MIC South Australia. Careful consideration was given to the way in which these participants were approached, with said participants only informed of study existence through provision of information flyers and no further contact being made unless requested, ensuring no coercion. All potential participants registered their interest via email contact with lead author (ST), and all interested participants were provided further information regarding the study requirements following contact. Any questions regarding eligibility or requirements were answered prior to the scheduling of interview at MIC South Australia offices.Participants were recruited using a multi-sampling method which employed both convenience and purposive strategies, to ensure those included in study were representative of the population of interest. Primary method of recruitment was distribution of study information flyers, that provided information regarding participation requirements, 2.2.Participation was voluntary and involved partaking in a semi-structured, face-to-face interview, which was audio recorded with participant consent. A semi-structured interview guide to allow participants to provide data on key research aims, with two examples of questions posed located in All interviews were conducted by ST, a male registered psychologist and early career academic, with personal experience working within the construction industry and training in qualitative research. Interviews lasted on average 38.28 min (times ranged from 25.37 to 78.20 min). Data was collected until saturation was achieved  . Field n2.3.Data were analyzed using descriptive thematic analysis, according to Braun and Clarke’s method . Transcr2.4.Participation was voluntary and interviews were audio-recorded with consent. To ensure participants were informed of requirements of engaging with study, they were provided a detailed participant information sheet upon expression of participation interest and any further questions were clarified by ST. As previously outlined, a Mental State Examination (MSE) was conducted pre and post interview to ensure participant safety. Participants were also provided with a list of relevant support services post interview. Additionally, all interviews were conducted by a registered psychologist, experienced in presentations of suicidality, to ensure safety within the interviews, with an extensive safety protocol developed should emotional distress arise. The study was approved by the University of South Australia Human Research Ethics Committee (protocol number 204232).3.M = 45.07, SD = 10.30). All bar one participant was employed in the ACI at the time of experience, as well as at time of interview, with current roles including general managers of private construction organizations, field officers providing placement and support to ACI apprentices and occupational health, safety, and environment managers.Fifteen participants agreed to take part in interviews with ages ranging from 29 to 66 years of age (n = 3), project/site management (n = 5), tradesman (n = 6), office management (n = 1), laborer/machine operator (n = 7), traffic management (n = 1), apprentice (n = 1), and small business owner (n = 1), resulting in broad representation of roles within the ACI. Most participants identified as being male (n = 10), a single participant reported migrating to Australia, and none reported being part of any minority groups . Most participants were employed by private organizations (n = 14), reported working more hours than receiving pay for (n = 13) and having engaged with an aspect of the MATES in Construction (MIC) suicide prevention and education training program (n = 14). Despite most participants current roles now in management, as mentioned significant work histories within the ACI were reported and several participants discussed personal experiences regarding earlier roles within the ACI . Additionally, where participants discussed experiences of supporting someone experiencing suicidal ideation while employed in the ACI, the individuals refereed to were all employed in various roles within the ACI including safety and compliance management .“You know, you have got hazardous work. We do demolition, asbestos, and civil challenges. There’s not…never ending. We do high risk. Everything we do is really considered high risk.” .Another example of a challenge stemming from ACI employment discussed by participants was work hours. Many participants highlighted how long work hours and expectations to be on site regularly, including weekends, played a significant role in driving experiences of suicidal ideation and distress while working in the ACI.“I’m still working like 60 h a week. But I was doing … kind of, 80, 90, 100-h weeks for a long time. Um, so, yeah, took its toll.” .Several participants also provided examples of how workplace transience and insecurity, including the shifting of workplace  and the subsequent changes to co-workers, was a challenge of ACI employment that played a significant role in driving experiences of suicidal ideation and distress.“You know, maybe a project goes for 2 years for instance. And you might be lucky enough to stay with the same supervisor and, you know, few of the people for the 18, 2 years … 24 months, maybe longer if you are lucky. But then you know it’s going to finish. And you kind of … it’s like you are continuously changing jobs.” .Many participants also highlighted the challenge of ACI workplace cultures as driving experiences of suicidal ideation and distress, providing examples of where perceptions of industry stigma towards someone experiencing suicidal thoughts or a mental health challenge was apparent, with such beliefs suggested as limiting help-seeking behaviors or discussion of challenges.“I think it’s just the stigma … If you have a broken arm people can see and touch and feel it. Right? You can see it, but it gets fixed. Right? Um, diabetes, okay similar, but mental health. You cannot touch it and feel it and, um, and it’s not, it’s not accepted yet.” .“Actually, one person in particular got me aside and wanted me to talk about it, but I just did not … I just did not feel comfortable with them, you know, discussing it. They were kind of like, you know, if you tell them something, they may be able to use it against you.” .Finally, many participants highlighted a lack of work-life balance as a challenge resulting from ACI employment that played a role in experiences of suicidal ideation and distress, including descriptions of the impact of work on ability to engage in life outside of work, such as spending time with family or being able to engage in activities important to wellbeing.“A lot of guys do not have work life balance. And … and if you do not have that, then that has to be, in my opinion, a contributing factor. That has to … that has to contribute towards how you are feeling. Um and for me, personally, that’s a trigger. That’s … that’s the start of a roller coaster that could go the wrong way.” .3.1.2.Many participants highlighted relationship or family issues as playing a role in driving experiences of suicidal ideation and distress, indicating challenges with a romantic partner, family, or the home environment, as apparent at the time of experience.“If you are home environment’s a happy, stable place. You know what I mean? You’re going to feel those vibes. You’re going to run with it. If your … home environment is, um, unhappy, depressed, quiet. Fuck it, let us not go anywhere … then, absolutely, that plays a factor.” .“When he was at work, had an argument with his partner on the phone. And he, in his words, he was either going to jump off the side of the building or take the hoist down.” .3.1.3.Several participants highlighted the role social disconnection played in experiences of suicidal ideation and distress, discussing that increased loneliness, remoteness, and isolation, was apparent during these times.“They lived rurally, they talked about the peace and quiet of being in the country. But I just felt like that also become a bit of an isolation for them.” .3.1.4.Many participants highlighted that facing personal financial hardship, and the pressure that occurs because of these challenges, played a role in driving experiences of suicidal ideation and distress while working in the ACI.“Um, we were going through a bit of financial hardship at the time. Like … and I’ve got a good job but like we were going through some financial stuff.” .“Yeah, financial stress. Yeah, so obviously you, ah, as somebody that wants to provide for their family, um, if then work drops off you do not know where the next job’s coming, but then you need to be able to provide that for your family, um, and then you have to have that conversation with them, going on, you know, and, you know, it’s going to be pretty rainy this week for example, and I know there’s probably not going to be as much hours because of this, and I’m not going to be paid. I think the financial bit is the huge part.” .3.1.5.Several participants discussed perceptions of a lack of support as playing a role in driving experiences. This lack of support was discussed in relation to both the workplace, as well as wider social support, such as limited access to mental health services.“Work has not supported him in that. Um, so then that impacts. It makes him more stressed. So, something that was keeping him a little bit more sane and keeping him busy and doing things has now become stressful.” .“Um and trying to get into services to get him support was probably the hardest, really, really hard thing because we could not get in anywhere. So even just getting into a GP … was hard.” .3.1.6.Several participants discussed the role alcohol or drug use played in experiences of suicidal ideation and distress, highlighting how use could lead to the presence or increase of thoughts of taking one’s life.“But, like, yeah, if I’d had a couple bottles of wine and I was tired, that was … that was where you are thinking about … Better off not being here.” .3.1.7.Several participants highlighted challenges relating to child custody, including dealing with associated legal issues or lack of access to their children, as playing a significant role in the experiences of suicidal ideation and distress.“Um, he’s got two young kids. Um, and he now has not seen them since January. Um, so there’s obviously custody issues there.” .3.1.8.Many participants highlighted the role of previous exposure to a mental health challenge, trauma, or a significant adverse life event, as playing a significant role in driving experiences of suicidal ideation and distress, with most participants suggesting that an occurrence of these challenges was the initial driver of experiences.“I…I…I think the trigger point was losing one of my…one of my mates to suicide.” .“I know that he had some health issues that then were freaking him out, and that was just like, I think that really was the tipping point for him.” .3.2.Four overall themes relating to the experience and expression of suicidal ideation and distress for those employed in the ACI were identified. As detailed in 3.2.1.Many participants described the suicidal thoughts experienced while working in the ACI, highlighting several common suicidal states that have previously been shown as central in leading one to think of taking their life. For example, several participants discussed thoughts of hopelessness, highlighting their presence in experiences of suicidal ideation and distress while working in the ACI.“Like, you know, now it’s hopeless. And like all the same stuff that you just hear about. You know, it’s hopeless. Um, I do not know what to do, you know. I cannot remember exactly what he said, but it was … it was words to that effect.” .Many participants also discussed thoughts of being trapped or overwhelmed and how these perceptions were a significant component of thoughts of suicide while working in the ACI.“That situation … to get me away from that situation, I was either going to take my life or I was going to quit.” .“And you feel like you are suffocating. Like, you know, how the fuck am I going to get out of all this?” .Additionally, thoughts of burdensomeness, including how one thought family or friends would be better off without them alive, were also discussed, with many participants highlighting how these perceptions influenced one’s thinking regarding ending one’s life during experiences.“And then, um, yeah, the most logical thing for me, like I was just in this dead set logical mindset that it was better for myself and my family if I wasn’t around.” .Several participants also discussed the fluctuating nature of suicidal thoughts, including how there were changes in prevalence and severity of thoughts, often dependent on the presence of drivers.“So, um … so yeah, to answer … answer your question, it was not a daily occurrence. It fluctuated depending on the load that I was under.” .“You know, you would have random thoughts about it. But then it got stronger. Like you’d think about it every day.” .Several participants discussed suicidal plans, including intentions of how to end their life and that if means had been available the likelihood of outcome occurring would have increased, that were apparent during experiences of suicidal thoughts and distress while working in the ACI.“If … if there was the means and method and it solved the problem and you did not have to feel anything anymore, you could probably do it pretty quickly if … if you were in that, you know … if you had that all-in front of … of you.” .3.2.2.Several participants discussed the presence of impaired thinking during experience of suicidal ideation and distress while working in the ACI, highlighting inability to think outside of suicidal distress, as well as decreased logic or judgment.“Um, you do start getting those thoughts on … because you are … because you are so caught up in yourself, you do not … you do not understand the repercussions it’s going to have.” .3.2.3.Many participants discussed how the experience of suicidal distress was expressed and provided examples from experiences. For example, several participants highlighted how during experiences total disengagement with, or decreases in motivation to perform, self-care activities were apparent.“Love me fishing … I know that’s my outlet. I got to a point where I could not even be fucked going fishing.” .Additionally, several participants highlighted that significant reductions or challenges with sleep were apparent during experiences of suicidal ideation and distress, suggesting this was an observable expression of this challenging time.“Waking up in the middle of the night and waking up repeatedly. So, I start off a little bit and then it repeated and then they were longer periods of being awake during the middle of the night. Some nights I had not slept for 2 days kind of thing. You know, and you feel terrible.” .Changes in workplace behavior during experiences of suicidal ideation and distress, including increased absenteeism and changes in appearance or regular presentation, was also highlighted by participants as an observable expression of suicidal distress.“I saw these people and I was going – saw they were normally like for a while, and then they just changed. There was this kind of weird. It was odd. It was like a feeling that they are not – that’s not their normal behavior, their normal look.” .“It contributed to significant absenteeism from work and something that I needed to manage, um, with a level of empathy that I would probably not give to most people.” .Several participants discussed the presence of self-harm and suicidal attempts as observable expressions, discussing presence, and at times increases, of these potentially life-threatening behaviors during experiences of suicidal ideation and distress while working in the ACI.“Um, initially he was scratching … his arm and then it just got progressively more and then it got worse and then he was cutting himself.” .Several participants discussed increases in interpersonal challenges, regarding workplace colleagues, as well as those from personal life, as observable expressions, highlighting the presence of these conflicts, suggested as different from normal behaviors, during experiences of suicidal ideation and distress while working in the ACI.“I like remember going up on the deck and say, hey man, like the task you are doing here, like, you are supposed to have some flags up, you know. You’re supposed to have like an exclusion zone, so – so people cannot come into your work area cause he’s doing dangerous stuff, you know. And he is like, fuck this. He just grabs like this 44 gallon and threw it down stairs. You know, and then we went for a walk. And that’s when he sort of started explaining everything to me.” .3.2.4.via either verbal expression, changes to behavior or help seeking behaviors, was apparent.In contrast many participants discussed the lack observable expression of suicidal distress, highlighting that in many experiences minimal communication of challenges experienced, “Some people you can tell. You think, oh jeez, he fires up easy or … or what the hell, he’s had a … he’s had a big weekend and he’s … he’s picking fights with people on site on a Monday. And you can sort of pick maybe a little bit, but, you know, this guy I just had no idea.” .3.3.Six themes relating to what helped during experiences of suicidal ideation and distress, as well as what can be done by the ACI to help mitigate these outcomes, were identified. As detailed in 3.3.1.Many participants discussed the important role played by workplace colleagues and managers in helping and supporting during experiences of suicidal ideation and distress while working in the ACI.“They needed the support of their work colleagues as a friend, but also as their manager to get them through, because possibly if they did not have the work side of things, we do not know where they could have ended up.” .3.3.2.via the practical support services the organization provides, such as a 24 h helpline.Many participants highlighted the significant role industry specific suicide prevention education and support service MATES in Construction played in assisting during experiences of suicidal ideation and distress while working in the ACI. This assistance was discussed in two ways, being reduction of stigma, therefore leading to reduced perceptions of judgment when seeking help for suicidal ideation and distress, as well as “Um, so MATES in Construction, the function they play is not just about destigmatizing that discussion, but it’s providing comfort that there is a number that is immediately going to be able to help you.” .3.3.3.Several participants discussed the important role played by engaging in activities outside of work and social support, whether that be friends and family, or mental health services, in helping during experiences of suicidal ideation and distress while working in the ACI.“You have to have an outlet outside of home, work. And it has to be about you.” .“And it got to a point where I ended up seeking professional help. My GP, um, referred me to a psychologist, um, who I saw off and on for about 6 months. Um, and they definitely helped.” .3.3.4.Several participants discussed how they felt that personal learnings and knowledge regarding suicide and mental health helped during experiences, with such skills and knowledge generated by lived experience or engagement with support services.“Second time around, I think, because I had the tools and I had the understanding, I was further educated in mental health. I think I — I stopped that progression.” .3.3.5.Many participants discussed the need for increased high level industry integration and engagement with support programs to mitigate experiences of suicidal ideation and distress, with many highlighting the importance of those in high level positions and organizations to incorporate support programs that provide education and training focused on drivers of suicidal ideation and distress into their workplaces.“Yeah, and what can we do to help, whether it’s a health programs, and you do target, you know, depression on, you know, you do depression, you could do drugs and alcohol, you could do gambling, you know, you could do your finances, offer budgeting, um, yeah, there’s so many snippets that could form a huge big program, that then everyone on, on a big project can do.” .3.3.6.Many participants discussed the need for changes to work hours and expectations surrounding these work hours, which are common within the industry, to mitigate experiences of suicidal ideation and distress for those employed in the ACI.“So, 5 day working weeks or limit hours at least. And you know, give people some time for life.” .“So I, personally, believe the industry, within themselves, should … and … and obviously it’s going to be organization by organization structure. But as a whole, I think they need a good hard look. Um, and also the … the support behind that is, like, say long weekends. Fucking shut the shop. Shut the site.” .4.This study explored the drivers and experiences of suicidal ideation and distress for those employed in the ACI, what helped during this challenging time, and what the ACI can do to mitigate experience of these challenges and further suicidal trajectories. Information was generated from perspectives of workers who have experienced it themselves, or supported someone in the industry through this challenging time.Several drivers of suicidal ideation and distress highlighted by participant accounts were the result of challenges arising from ACI employment. Participants highlighted challenges with job pressures and demands, sometimes seen as increasing in more recent times, in part drove experiences. Participants also highlighted that the work hours undertaken and regularly required in the ACI played a role in driving experiences. Additionally, participant accounts highlighted challenges with workplace transience and insecurity, including the shifting of workplace  and the subsequent changes to co-workers, as another significant driver due to ACI employment. These findings support previous investigations of CIW and ACI populations which suggests that industry drivers, such as psychosocial job adversity, are central in experiences of suicidal ideation and distress . HoweverAnother industry challenge highlighted by this study was workplace cultures that stigmatize suicide and mental health, potentially limiting help seeking and help offering behaviors. This is a significant concern for the ACI as many suicide prevention approaches in the area are reliant on people engaging in help seeking behaviors, an unlikely occurrence if one perceives they will be judged or dismissed by colleagues when doing so , 21. PreParticipants also highlighted the lack of work-life balance resulting from ACI employment has on driving experiences of suicidal ideation and distress while working in the ACI. This is a similar finding to that of a global review of drivers of suicide for CIW that stressed the potential crossover between industry and external drivers . This fiParticipant accounts also highlighted several other potential drivers of suicidal ideation and distress that can be viewed as external to the ACI. Relationship and family issues, whether with a romantic partner, friend, or family member, have long been known to drive suicidal trajectories, particularly in later stages, and the current study’s findings highlight the significant role they can play in earlier trajectories of suicide for those employed in the ACI , 7. SimiParticipants also highlighted a perceived lack of support, as well as social disconnection, as drivers of experiences. This finding is important for preventative groups to understand how they can potentially influence presence of suicidal ideation and distress by continued education around the importance of social connection, seeking support, and availability of services during these challenging times. Additionally, this finding highlights the role the ACI can play in mitigating the influence of these drivers. Increased social disconnection is potentially circumvented through workplace support and engagement with those experiencing such challenges, and as mentioned previously training and education so the workforce has the skills to support those in need is a recommended action. Similarly, wider ACI engagement with, and encouragement of available support service use, may also lead to mitigation of these drivers’ by reducing perceptions that there is a lack of social support available .Participant accounts highlighted that there are similarities in experiences of suicidal ideation and distress for those employed in the ACI, with many others outside of the industry. Many participants highlighted thoughts of hopelessness, being trapped/overwhelmed or burdensomeness were present during experiences. These psychological constructs have been identified as central in suicidal trajectories in many of the highly regarded theories and models of suicidality such as the Interpersonal Theory of Suicide (ITP) and the Integrated Motivational Volitional Model of Suicidal Behavior (IMV) , 23. TheParticipant accounts highlighted that in many of the experiences of suicidal ideation and distress discussed, there were observable expressions that someone was experiencing these challenges. Changes in desire to undertake or engage with usual self-care activities, impacts to sleep, variations in usual workplace behavior, engaging in self-harm behaviors or attempting suicide, as well as experiencing an increase in interpersonal challenges (home and workplace) were all highlighted as present in several accounts. This is vital information as it informs both the industry and prevention, support, and education programs that these are potential indicators that someone is experiencing suicidal ideation and distress, and that support is required. Additionally, education regarding presence of these challenges not only informs when one may need to offer help to a colleague but also creates knowledge that these may be early indicators that oneself may be struggling and engagement with support services is vital . HoweverParticipant accounts highlighted several areas, from both within the industry and from personal life, that helped during these experiences. These are important findings to inform the industry, as well as support, education, and prevention programs, on what may be required by those within the ACI experiencing suicidal ideation and distress. Colleague and managerial support were reported as helpful, and this aligns with recent research in broader Australian male populations of the protective role social support plays in male experiences of suicidal ideation . It has Participants also discussed what the ACI could do to help mitigate experiences and suggested the need for high level industry engagement with, and integration of, suicide support, education, and prevention programs. While programs such as MIC are apparent within the ACI, there are organizations who do not engage with MIC, or other services of this kind . With re4.1.This is the first study of its kind to utilize personal accounts of experiences from those with intimate and extensive knowledge of the ACI, to create better understandings of drivers and experiences of suicidal ideation and distress while employed in the industry, as well as what helped during these challenging times. The importance of allowing lived experience voices to inform understandings is vital in the development of effective prevention strategies that are required to mitigate future experiences . The mul4.2.Future research of a similar methodology using a broader range of CIW is recommended . As mentioned, previous research has highlighted workplace bullying as a significant driver of suicidal ideation and trajectories for construction industry apprentices . This suFuture research focused on deeper understanding on whether those in the ACI are more vulnerable to known drivers of suicidal trajectories, such as social disconnection or family issues, because of industry-specific factors, would prove beneficial. Minimal research has investigated the impact of industry drivers on those regularly perceived to be independent of the industry  despite previous research suggesting a likely interplay between industry and personal drivers. Additionally, further research is needed regarding how and why the ACI stigmatizes suicide and mental health. While previous research has alluded to the role adherence to self-reliance norms plays in impeding those within the ACI from seeking help, future research that focuses on whether there are other social constructs that limit help-seeking behaviors, whether adherence to these constructs is primarily the result of ACI culture or personal beliefs, and how best to mitigate their influence, is required .5.Despite regular reporting of CIW increased vulnerability to suicide, little research has been undertaken to understand what may drive these outcomes. Furthermore, little generation of knowledge regarding drivers and experiences of early suicidal states, suggested by scholars as an important area of investigation to mitigate further suicidal trajectories, has occurred , 14, 15.The findings highlight several ACI drivers of suicidal ideation and distress, as well as those from personal lives, which can potentially be mitigated by industry changes and focused prevention strategies. Results suggest similarities with previous understandings regarding descriptions of suicidal thoughts for those within the ACI, as well as highlighting several expressions of suicidal ideation and distress that were apparent during experiences. However, findings also indicate the challenges faced by the ACI in identifying those struggling with these challenges, due to a lack of recognizable outward expression, reinforcing the importance of driver mitigation, as well as de-stigmatization of suicide and mental health to encourage help seeking behaviors. Finally, findings indicate several factors, from both the industry and personal lives, that helped during experiences of suicidal ideation and distress while working in the ACI, as well as what the ACI can do to mitigate future experiences, with several recommendations made to create a better environment, as well as effective support systems, for those experiencing these challenges.simon.tyler@mymail.unisa.edu.au.The datasets presented in this article are not readily available because of ethical restrictions. Requests to access the datasets should be directed to The studies involving human participants were reviewed and approved by Ethics Committee of the University of South Australia. The patients/participants provided their written informed consent to participate in this study.Conceptualization was undertaken by ST, KG, BC, and NP. Methodology was developed by ST, KG, and NP with formal analysis developed and undertaken by ST, KG, and NP. Writing completed by ST, with review and editing by KG, BC, and NP. Supervision provided by KG, BC, and NP. All authors contributed to the article and approved the submitted version.The research is funded by MATES in Construction National and South Australia, Return to Work South Australia and the inaugural Allison Milner Memorial PhD Scholarship.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.The reviewer VR declared a shared reference group with the authors ST, NP to the handling editor.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Intimate Partner Violence (IPV) is a prevalent form of gender-based violence affecting one in three women globally. It is also a preventable cause of ill-health, disability, and death. Current research suggests that women with disabilities are at a significantly higher risk of experiencing violence throughout their lifetime. They are almost twice as likely to experience violence compared to men with disabilities or men and women without disabilities. Additionally, they experience higher rates of all types of violence. This increased vulnerability may be due to factors related to disability such as dependence on others for support, mistrust, and social and physical isolation. Although there is existing research on IPV against women in general, there is limited knowledge on IPV against women with disabilities. To address this gap in knowledge, this study aimed to explore women with disabilities’ perceptions and experiences of being victims/survivors of IPV in Sweden.This was a qualitative study conducted through in-depth interviews with eleven women with disabilities. The participants were aged eighteen years upwards. The collected data was analyzed using reflexive thematic analysis with a constructivist epistemological standpoint.We developed four themes. Theme one: “multiple abuse by multiple abusers, over time,” describes the participants’ experiences of various types of violence from different perpetrators for prolonged periods. Theme two: “psychological abuse—harmful, but neglected and difficult to prove,” explains how women with disabilities’ perceive psychological abuse as harmful, but not given the same level of seriousness as physical violence. It also expresses the difficulties they encountered in providing tangible evidence to prove instances of psychological abuse. Theme three: “abuse does not end with separation,” highlights how abuse can continue beyond separation/divorce. Theme four: “surviving abusive relationships” describes the different and evolving ways the participants used to navigate their abusive relationships.Women with disabilities face all forms of abuse. They find it challenging to prove psychological abuse, and the system is inadequate in addressing its harm. The abuse also continues after separation or divorce. The support system should consider the needs of women with disabilities who experience violence, both during and after the abusive relationship. Service providers should be better equipped to detect and handle all types of IPV, especially psychological abuse.The online version contains supplementary material available at 10.1186/s12905-023-02524-8. The World Health Organization (WHO) defines intimate partner violence (IPV) as a “behavior by a current or ex intimate partner that causes physical, sexual or psychological harm, including acts of physical aggression, sexual coercion, psychological abuse and controlling behaviors” . IPV is Worldwide, there are approximately 250 million women with disabilities, while in Europe about 16% of women are estimated to have disabilities . Recent In Europe, about 40% of women with disabilities have experienced violence, including IPV . ElsewheWhile women with disabilities experience abuse from family members and medical personnel, among others, the most common perpetrators of violence against women with disabilities are male (current or former) intimate partners , 15, 16.A review of the literature by Smith (2008) provided some explanations behind the higher rates of IPV among women with disabilities. For example, those with physical disabilities may need help with replacing the battery on a wheelchair, toilet operations, or dressing, among other intimate actions. This kind of dependence may lead to perpetrators taking advantage of the women’s vulnerability for instance, demanding a kiss before assisting, withholding medication, and removing the battery from the wheelchair are some examples of disability-related abuse experienced by women with disabilities . FurtherMoreover, women with intellectual disabilities may encounter challenges in identifying instances of violence, and they may face disbelief or lack of support from service providers when they attempt to report such incidents , 11, 20.Studies conducted in Sweden have reported varying rates of violence experienced by women. For example, Anderson (2015) found that 14% of women had experienced physical violence in their lifetime , AhnlundGenerally, in Sweden, we know little about the IPV experiences of women with disabilities. Olofsson et al. found that women with visual disabilities are at greater risk of exposure to both physical and psychological violence than women without such disabilities . Other aJust like in other regions of the globe, extensive qualitative research has been conducted in Sweden and other Nordic countries focusing on IPV against women in order to understand the beliefs, behaviors, and norms related to IPV against women . From thHowever, very few studies, if any, have specifically explored the perceptions and experiences of women with disabilities as victims or survivors of IPV. As described by the WHO and program for appropriate technology in health (PATH), qualitative research can help to “understand cultural norms, beliefs, and behaviors or to capture and analyze complex motivations” . TherefoTo fill this knowledge gap, this study’s aim was to explore women with disabilities’ perceptions and experiences of being victims/survivors of intimate partner violence in Sweden.This is a qualitative study, using in-depth interviews with women with disabilities who have been victims/survivors of IPV. The study adopted a constructivist epistemological standpoint—which recognizes that knowledge is shaped by social and cultural contexts, and that researchers’ own perspectives can influence how they interpret data. It acknowledges that reality is not a fixed concept but rather shaped by our own perceptions and experiences , 38. We We used purposive sampling , 40 to sThis study is a component of an ongoing research project that aims to examine the accessibility and utilization of IPV services. We conducted eleven in-depth interviews, using a semi-structured interview guide. The interview guide encompassed questions grouped into four broad categories: (1) accessibility and contact with IPV support and services, (2) quality of IPV support services and suitability, (3) competence development and recommendations, and (4) COVID-19 and IPV. For the purposes of this study, we primarily focused on materials related to the first category. For a detailed list of specific questions posed to the participants, please refer to the interview guide provided in additional file 1.A member of the project team conducted the interviews in Swedish, the participants’ preferred language. The interviews were conducted virtually due to the COVID-19 pandemic’s restrictions. Cognizant of the participants’ different disabilities, the interviewer moved at their pace. For instance, some interviews took longer because participants had to pause between questions or became distracted by other things. On such occasions, the interviewer engaged them in other topics until they were ready to resume the interview. The interviews lasted between 56 and 100 min, were recorded, transcribed verbatim, and then translated into English. Participants’ names were pseudonymized.We used reflexive thematic analysis (RTA) . RTA is This study obtained approval from the Swedish Ethical Review Authority [J. Reg no. 2019–05249].To ensure participants’ safety, we pseudonymized their names, personal information  was not included in the transcribed data, and the recorded videos/audios were stored separately from the transcribed data. To enhance voluntary participation, all the participants were informed that they had the right to withdraw at any point during the interview process, and they provided both written and oral informed consent. To guarantee participants’ confidentiality and anonymity, they made the decision to either have the video recorder on or off during the virtual interviews. Finally, following the ethical board’s guidelines and due to the sensitivity of the topic under study and the possibility that it might evoke negative emotions and stress, the interview information and invitation letter to the participants contained details of the project’s contact person in the community, who was familiar with IPV services and able to provide the participants with guidance and referral to available help and support as necessary.We strived to guarantee the quality of our study by following Braun and Clarke’s guidelines on ensuring quality when conducting a qualitative study , 43. FirOne of the fundamental aspects of RTA is reflexivity—critical reflection upon the researcher’s role in knowledge production . The guiHowever, our study has limitations. Due to logistical constraints, we did not share our preliminary results with the participants, which might have further illuminated other aspects. Another limitation was not being able to include the experiences of other women who face multiple forms of oppressions specifically from an intersectional perspective. This includes women who identify as queer, immigrant women, and women of color. Additionally, we acknowledge that women with the most severe disabilities may be the most vulnerable, but we were unable to reach them in our study. Furthermore, when it comes to disability, examining various disabilities within the same study may have hindered our ability to gain a deeper understanding of any specific disability.Altogether, we developed four themes that provide insight into the perceptions and experiences of IPV among women with disabilities who have been victims or survivors of IPV in Sweden.He never hit me in the face or body, but he is very harsh, manipulative, domineering, abusive, uses ugly words, taunts, and now financial violence […] I had been dependent on my ex-husband a lot due to my hearing impairment he took over everything about finances in general. (Ebba)Yes. I met a man I became pregnant with. He subjected me to attempted rape. (Ulla)For him [my ex], it [helping and supporting me] wasn’t important. I have a hearing aid, so it gets hot, and it itches. When I got stressed, it got even worse as I fiddled so much and couldn’t get it in, then it went too far into my ear […]. At night, I screamed in pain, I said to him: “Can you call [the healthcare center]? It hurts so much,” but he said: “No, it will be fine.” I said: “Call! help me.” He didn’t. (Ebba)The three quotes above are examples of how the women with disabilities in this study were exposed to multiple forms of abuse, comprising financial, sexual, and psychological forms. Financial abuse entailed, for example, intimate partners taking advantage of women’s disability status to bypass them, navigate the system, access their disability allowance, and “empty the accounts” without their consent. As Ebba’s first quote shows, partners took advantage of the women’s dependence on them as an avenue to control their finances.Although the women in this study experienced several forms of abuse from multiple abusers, psychological abuse, and neglect were especially common across their narrations, as the second quote from Ebba shows. Psychological abuse was exerted through gaslighting, invasion of privacy and violation of personal belongings. Neglect, on the other hand, was through refusal to help. The women interviewed vividly described instances of being subjected to “wrong treatment,” enduring “threats and intimidation,” being left alone without support at home and labelled as incapable of fulfilling their responsibilities due to their disabilities.As well as experiencing different types of violence, the women in this study also experienced abuse from different types of abusers:My god man treated me bad and exposed me to debts. After that god man, I got a 75-year-old man. He treated me bad too. He was so controlling […]. It didn’t work at all. It was completely crazy. (Ulla)When I was 16 years old, it was a friend of the family who sexually abused me […] and then later a male staff member told me to undress and so on, in my residence, and we were alone in the room, forcing me to hug several times. (Jenny)As Ulla describes in the quote above, her “god man,” who is an individual assigned by social services to assist people with disabilities in making decisions and navigating challenges related to their disabilities, can instead become controlling, inflicting bad treatment, abuse, and violence. The women interviewed were also exposed to violence from a wide array of people with whom they had close relationships, such as partners, ex-partners, and parents. Other people, such as friends and colleagues who accessed these women’s intimate spaces, also overstepped their roles, took advantage of these women’s disabilities, and ended up perpetrating abuse, as Jenny described in the quote above.Finally, the women described how their experiences of violence and abuse occurred over time.My mom did it. It had been, not punches, but slaps, being pushed into furniture very hard. When I was little, she held my arms so tightly that I got bruises. It stopped when I got older and could resist. (Pia)In the above quote, Pia described having experienced abuse from her mother, whom she expected to be her source of help and support. She was not an exception; among the participants, some women talked about experiences of violence that started when they were children and continued throughout their youth and adulthood.In summary, the women described experiences of multiple forms of violence by multiple perpetrators and for prolonged durations. Among the different forms of abuse, psychological abuse was perceived as particularly harmful, as well as being “hard to prove.” We turn to this in the next theme.I guess I could go to the police with them [episodes of psychological abuse], but as many say, it usually doesn’t get picked up or it’s not taken further and so on, and I’ve heard others who’ve said one should perhaps not compare and say that one [form of abuse] is worse, but there are some who’ve been more physically abused than I faced in that relationship, for that person it has just been taken seriously […] Yes, the physical, it’s like, it still heals like relatively often, maybe a little faster than the psychological, which can often be there. (Sofia)In terms of pervasiveness, the interviewed women perceived psychological abuse as more harmful than physical violence, which they said, “heals faster.” Psychological abuse was described as “invisible” and as having a greater impact on an individual’s health and well-being, as Sofia explained in the quotation above. In addition, psychological abuse was perceived as brutal and requiring “more help” because, in Ebba’s words, it makes one “not want to live.” Despite the perceived pervasiveness and severity of psychological abuse, the women in this study also perceived psychological abuse as neglected and/or not taken seriously by the services and support institutions. Services and support institutions here refer to the police, healthcare, and social services.When it came to my relationship, I never sought any support because he never hit me. So, I never had concrete examples. I knew it shouldn’t be like that. But he never crossed a line, to become clear for me to report [….] then I just realized that I shouldn’t tell everything. This is the typical situation that I hear many people are in. In my case, it was: “he never hits [you], so what’s the problem?” He just got a little angry. Yes, he broke the wall next to my head, but he didn’t hit me. He hit the wall. (Mona)When can you report to the police? Sometimes I said: “Beat me, so I can report you to the police,” but he never did. He knew it. That was the hardest part of it all. (Ebba)The above quotes describe how psychological abuse is not considered very important, while hitting, beating, and any other form of physical injury that is clearly visible was/is considered serious and qualified as having “crossed the line” and, most importantly, becomes a motivation for seeking support. If violence was not physical, there was the perception that it would not be taken seriously by the support institutions that had the liberty to decide whether a case had proof of abuse or not. This, in turn, discouraged the women from seeking help when they had not experienced that type of violence, as shared by Mona in the quote above. The frustration of psychological abuse not being taken seriously due to the lack of physical proof led the participants to seek such proof and question whether they should actually seek physical abuse. From Ebba’s quote above, we want to argue that this (asking to be beaten) reflects the frustrations of psychological abuse requiring proof.According to these women’s perspectives, Sweden lacks laws to prosecute psychological abusers; thus, the support institutions do not have legal frameworks consisting of laws and rules to punish such abusers. But it was not only a matter of lacking laws to punish this type of violence; the participants also perceived society at large as (in Lena’s words) “talking a lot about the physical violence but forgetting to talk about the psychological abuse which [society] considers quite a taboo.” They called for strategies to start a discussion on the importance of taking psychological abuse seriously as an important issue and not as a “taboo” as it is now viewed.Even though they were faced with suspicion and the need to prove psychological abuse, all the participants had managed to quit their abusive relationships. However, the violence continued after leaving their abusers, as we illustrate in the next theme.We have children together; things must be bought. Then I suggested to him that we can pay together and then I pay a percentage of my salary. “No, 50/50,” he insists, “I have no obligation to support you.” “It’s not about me, it’s about the children,” I said. He doesn’t understand anything. He won’t stop the harassment. (Ebba)Even though we’d agreed that I should have our boy, he’s kept the boy and gone underground. (Ingrid)All the women in this study had ended the abusive relationships, either through separation or divorce. However, despite the physical separation, they still faced ongoing psychological abuse from their former intimate partners. Those with co-parenting responsibilities and unstable financial situations endured continued financial frustrations and control, as the abusers exploited these circumstances to exert power and make them feel powerless. For instance, even though it was known that these women only worked part-time, their ex-partners insisted on a 50/50 financial arrangement for childcare as mandated by the law. However, it is worth noting that the same law allows parents to make special arrangements based on their mutual agreement to cater to their children’s needs. This situation gave the abusers more power to continue their financial control and intimidation, as described by Ebba above.Ex-partners made co-parenting difficult and continued to exert control and intimidation. As Ingrid stated above, she was denied the right to be with her child even after an agreement during separation, that co-parenting would be made possible as specified by the law. The perpetrators used co-parenting as an avenue to continue exercising psychological abuse.Some ex-partners continued to take advantage of the women’s disabilities. For example, they made it difficult to sustain a conversation. In Ebba’s case, as she shared her personal experience below, her ex-husband continued to take advantage of her hearing impairment, dominated the conversation, and never gave her an opportunity to be heard.So, I called him, and it was almost impossible to talk to him. It’s not possible to talk on the phone with him. He totally runs me over. (Ebba)The ex-partners without a disability positioned themselves as the ones with a superior voice and used this to exert power and control through communication, illustrated by their domineering manner during conversations. Other ex-partners could not handle rejection. They perceived that a disabled woman should not leave a relationship, and thus turned to digital abuse; sending out embarrassing and untrue online texts to close networks indicating that she was “single,” “looking for a boyfriend” (Jenny) or sharing her “phone number with other guys” (Jenny).Having experienced multiple forms of violence from multiple abusers for prolonged periods of time, faced with suspicion and the need to prove violence, managing to leave their abusive relationships, and then still having to endure abuse even after separation, the women in this study retrospectively recollected how they had coped, including attempts to resist such abusive partners. These women were doing something about their situation, both during and after the abusive process, which we explain in the next theme.I became more and more isolated because I didn’t want to tell [anyone]. I thought it was embarrassing. I had also moved from my city to this guy’s city. Then it was even more that I didn’t want to show [it], I didn’t want to be seen as a failure and that I would have to move back to my city. (Mona)When I ended up in deep depression, I found tools to process myself. These were the tools I was looking for online as well as, what does a healthy relationship look like? Is it me who’s crazy or this person [the perpetrator] who does things to me when I’ve said, “don’t do that,” and no one else knows that I’ve told him not to do those things? (Lena)In hindsight, the women narrated how they had survived and navigated through the violent and abusive environment. Their approaches to surviving violence also changed along the way; from their current situation, where they had left their abusive partners , they reflected upon the different ways in which they had tried to survive the violence.One way was to isolate themselves and to seek explanations and reasons for it. This way of surviving violence was related to the shame they felt about being a victim, a way to try to maintain appearances in front of others. Isolation was a way to avoid sharing abusive experiences because it was seen as “embarrassing,” as being a “failure” and different within society, as Mona described her personal experience in the quote above. This way of surviving took a toll on them because they had to continuously limit themselves, the activities they engaged in, and their social contacts. Retrospectively, these participants regretted such moments of isolating themselves and trying to endure the violence. As Ebba put it: “You blame yourself; how did I even allow it…. I’m still ashamed of how I could live with such a man.”One other way that they survived the violence was by trying to make sense of their situation. They began questioning and comparing information on their own to help them deal with the stress and trauma. They took the initiative to search for on-line resources to support their healing and to prevent themselves from ending up in similar abusive situations again. These resources included information on tools to process self and examples of what a healthy relationship should look like as Lena shared in her quote above.The women also mentioned a different way of surviving violence, which was through finding an escape from the space of violence, by engaging in activities they considered interesting that relieved the stress. Such endeavors included “writing music to let it flow out as such writing made me feel safe” (Sofia); or writing down the abusive experiences in a bid to just let it all out and get some relief. “Sometimes I went up and wrote a page and a half, just to write it down” (Ebba). Alcohol and other drugs were also a source of relief: “I knew I was drinking way too much. There has never been any doubt that I was aware of it because I used it as incorrect self-medication” (Mona).Some of the factors that the women described as having enabled them to step up and leave their abusive relationships included support from friends and family, having had enough, doing it for the children’s sake, and having shared experiences with other abused women who had since left their abusive relationships. For instance, Ebba shared her personal experience of how she left the abusive relationship for the sake of her children:I wanted us to be a family. I wanted us to. […] I didn’t want to divorce for the sake of the children, I protected them. But that wasn’t right, it was wrong. There was more violence. Then I realized that it wasn’t helping my children. I would perish, and the children would not feel good about seeing us use violence and abusive words.This study has shown that women with disabilities face multiple forms of abuse, including sexual, financial, physical, and psychological. The perpetrators of abuse are diverse, and the durations of these experiences is often prolonged. The findings highlight that the participants perceived psychological abuse as being overlooked by the support institutions, placing the burden of proof on the victims themselves. This form of abuse was described as more pervasive than physical abuse. This study’s results further indicate that leaving the perpetrator did not necessarily end the abuse; it continued beyond separation. To endure and survive the difficulties encountered during their abusive relationships, the women in this study turned to seeking out explanations and questioning the spiteful experiences they were going through, finding escape through other stress-relieving actions, and digging for information to make sense of their situation. Leaving the abusive relationships was facilitated by the support of friends and family, having had enough, doing it for the children’s sake, and drawing strength from the shared experiences of other women who had also left abusive relationships. We unpack these findings using the following topics.Women with disabilities may require support from different people to access resources and meet their daily needs. Thus, disability makes them more dependent on their close relations, which, unfortunately, leads to more vulnerability. In the present study, having more people occupying these women’s intimate spaces meant having available help and support, but it also increased the risk of exposure to more perpetrators. Increased dependence on abusers for care and assistance, and social isolation have been reported as among the reasons for increased vulnerability and higher levels of abuse experienced by women with disabilities . Our resIn this study, participants were faced with the heavy burden of proving that they were victims of psychological abuse. Such abuse, being (in)visible, was difficult to prove. Thus, because they did not present with visible signs of physical abuse, the women lacked institutional legibility. According to Sweet, legibility is “the ability to be recognized as legitimate and worthy of resources within the institutions” . Lack ofPsychological abuse being (in)visible and hard to prove, coupled with (dis)ability status, especially intellectual disabilities, meant that the women were faced with suspicion and mistrust when they claimed such abuse. Legibility demands also drove the women away from seeking help. In previous studies, the factors that increased the vulnerability to abuse of women with disabilities included not being trusted, and not being listened to, which applied especially to those with an intellectual disability , 11. FurThe legal system, along with other services and support institutions, seems to have created an array of demands for how victims of abuse should conduct themselves and report the abuse, and these demands shape their institutional experience . In SwedIn this study, participants described experiences of abuse that had continued from childhood into adolescence and adulthood, and after leaving their abusive relationships. This pattern depicts a life-course trend of violence. Women with disabilities might require help and support from others throughout their life course, depending on the nature of the disability, and this is also a risk factor for multiple forms of abuse from multiple abusers  extendedAll the women in this study had left their abusive partners and were leading a different life compared to when they had been in abusive relationships. Importantly, even before leaving, they were all doing something about their situation. These women dealt with pre- and post-abuse consequences in different ways. Before exiting the abusive relationships, the women “accepted” the violence and attempted to make sense of it by offering explanations as to why their partners were abusive in the hope that things might become better. This coping attitude of women tolerating violence is not unique to women with disabilities but is rather widespread among women without reported disabilities in different geographical contexts , 51. “AcThe findings of this study reveal that women do many things to survive; some of these things may be quite useful and healthy, while others might be harmful. It is important to underscore that some survival tactics might have consequences for how the women feel about themselves and might potentially influence the probability that they will seek help. It is imperative to support women in leaving abusive relationships, but at the same time to ensure that they do not feel ashamed or embarrassed for being a victim/survivor of IPV. It is noteworthy to mention that women usually do not stay in abusive relationships willingly. Their choices are often limited by many underlying forces, such as societal stereotypes and prejudices, financial dependence, cultural norms, and specifically dependence on the abuser for help and support in the case of women with disabilities .The results of the current study underscore the importance of ensuring that the services and support institutions are more responsible and proactive. This is crucial to enhance screening efforts for IPV among women with disabilities. These findings may also prompt discussions on policies and guidelines regarding how institutions should respond to vulnerability of women with disabilities. To better identify and support women with disabilities who experience IPV, education and sensitization interventions should be developed targeting not only women themselves, but also services and support providers across various institutions. This support should continue even after the women have left abusive relationships . Additionally, service providers’ capacity should be enhanced to better meet the needs of this population.The findings of this study show that women with disabilities experience multiple forms of abuse, including sexual, physical, financial, and psychological abuse. These abuses occur over time and may involve different perpetrators, not only intimate partners. Moreover, the results reveal that women with disabilities often face difficulties in proving psychological abuse, which they perceive as more detrimental than physical violence which often receive greater attention. The results of the study also highlight that abuse does not necessarily end with separation or divorce, as factors such as financial dependence and co-parenting enable the continuation of psychological abuse.In order to cope with abusive relationships, women employed a range of survival strategies. These strategies include reflecting on their own experiences of violence, engaging in stress-relieving activities, and actively seeking information to better understand their situations.Below is the link to the electronic supplementary material.Additional file: Interview guide