qualitative research psychological distress

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• Published: 01 February 2022

Researching the researchers: psychological distress and psychosocial stressors according to career stage in mental health researchers

• Nicole T. M. Hill 1 , 2 , 3 ,
• Eleanor Bailey 4 , 5 ,
• Ruth Benson 6 , 7 ,
• Grace Cully 6 , 7 ,
• Olivia J. Kirtley 8 ,
• Rosemary Purcell 4 , 5 ,
• Simon Rice 4 , 5 ,
• Jo Robinson 4 , 5 &
• Courtney C. Walton 4 , 5  

BMC Psychology volume  10 , Article number:  19 ( 2022 ) Cite this article

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Although there are many benefits associated with working in academia, this career path often involves structural and organisational stressors that can be detrimental to wellbeing and increase susceptibility to psychological distress and mental ill health. This exploratory study examines experiences of work-related psychosocial stressors, psychological distress, and mental health diagnoses among mental health researchers.

This international cross-sectional study involved 207 mental health researchers who were post-graduate students or employed in research institutes or university settings. Work-related psychosocial stressors were measured by the Copenhagen Psychosocial Questionnaire III (COPSOQ III). Psychological distress was assessed using the Depression-Anxiety-Stress Scale-21 (DASS-21). Thoughts of suicide was assessed using an adaptation of the Patient Health Questionnaire-9 (PHQ-9). History of mental health diagnoses was assessed through a custom questionnaire. Pearson’s chi-square test of independence was used to compare mental health diagnoses and suicidal ideation across career stages. The association between work-related psychosocial stressors and psychological distress was conducted using multivariate linear regression controlling for key demographic, employment-related and mental health factors.

Differences in ‘demands at work’ and the ‘work-life balance’ domain were lowest among support staff ( p  = 0.01). Overall, 13.4% of respondents met the threshold for severe psychological distress, which was significantly higher in students compared to participants from other career stages ( p  = 0.01). Among the subgroup of participants who responded to the question on mental health diagnoses and suicidal ideation ( n  = 152), 54% reported a life-time mental health diagnosis and 23.7% reported suicidal ideation since their academic career commencement. After controlling for key covariates, the association between the ‘interpersonal relations and leadership’ domain and psychological distress was attenuated by the mental health covariates included in model 3 ( β  = −0.23, p  = 0.07). The association between the remaining work-related psychosocial stressors and psychological distress remained significant.

Conclusions

Despite working in the same environment, research support staff report experiencing significantly less psychosocial stressors compared to postgraduate students, early-middle career researchers and senior researchers. Future research that targets key modifiable stressors associated with psychological distress including work organization and job content, and work-life balance could improve the overall mental health and wellbeing of mental health researchers.

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Introduction

The mental health and wellbeing of academic staff and students at higher education institutions (including universities) has become a prominent concern in the research community [ 1 , 2 ]. Although there are many benefits and privileges associated with working in academia including knowledge gain, personal fulfilment, flexibility, and comparatively high salaries at senior levels, this career path often involves a range of structural and organisational stressors that may potentially compromise well-being and increase stress. Examples of academic-specific stressors identified in previous studies include being regularly evaluated and ‘benchmarked’ against output metrics, cyclical competition for funding (including salary support), job insecurity and uncertainty, and balancing multiple roles (teacher, mentor, researcher, writer, reviewer, manager, and administrator) [ 2 , 3 , 4 , 5 ]. These work commitments regularly interfere with personal life [ 5 , 6 ] and have been shown in previous meta-analyses to be associated with increased psychological distress, and poor mental health outcomes such as depression and anxiety and suicidal ideation across occupations [ 7 , 8 , 9 ].

In response to increased international scrutiny of the academic work culture, several reports have been produced that highlight key work-place stressors experienced by researchers in academic settings [ 3 , 10 , 11 ]. For example, a report published by Wellcome Trust in the United Kingdom [ 3 ] highlighted concerns about career uncertainty and longevity, including a culture of long working hours, and continually changing goalposts with overwhelming and unrealistic expectations on productivity. Furthermore, a third of participants (34%) described accessing support from a mental health professional for depression or anxiety since working in academia [ 3 ]. This proportion was higher for females (38%) and non-binary respondents (66%), than males (25%). However, estimates of symptom prevalence and severity using validated clinical scales (e.g. DASS21) [ 12 ] were not collected nor was the association between symptom severity and work-related psychosocial stressors investigated.

To date, much of what is known about the mental health of academics stems from studies conducted among graduate student populations [ 13 , 14 ]. However, it is often unclear what proportion of these samples conduct research, with many enrolled in applied study (e.g., medical training) that may not generalise to academics in research roles. Using the Generalized Anxiety Disorder Scale and Patient Health Questionnaire, Evans and colleagues [ 13 ] showed graduate research students were more than six times more likely to report experiencing symptoms of mental ill health including anxiety or depression than the general population, with rates of 39% and 41% respectively scoring in the ‘moderate’ or ‘severe’ range. Furthermore, psychosocial work-related factors such as poor work-life balance and poor mentoring relationships were revealed as being more common in those with a mental health disorder. Another study examined psychological distress [ 15 ] using the General Health Questionnaire, as well as job satisfaction, in a large sample of Australian university staff and found that 43% of academic staff scored above the cut-off [ 6 ], indicating increased risk of a possible mental health disorder [ 6 , 16 ]. Together these findings suggest that the severity of psychological distress among academics, relative to the general population, may be related to modifiable work-related psychosocial stressors. Given psychological distress is characterised by depressive and anxiety symptoms, and is an indicator of mental ill health conditions such as depression and anxiety disorders [ 17 ] research that seeks to identify the association between work-related stresses and psychological distress may have upstream benefits that reduce the progression of a later mental health diagnosis.

Though there is now a growing concern about the mental health of researchers, particularly in early stages of their careers, the majority of work to date has focussed on assessment of stress, environmental factors, or relied on non-clinical instruments to measure researchers’ mental health [ 18 ]. Additionally, differences in psychological distress and mental health outcomes that are experienced at different career stages (e.g., postgraduate students versus senior researchers) has not been investigated. This gap in evidence is noteworthy since different modifiable work-related stressors may be more or less prevalent at different career stages. Given the link between job stress and the prospective development of psychological distress, mental ill health (e.g., depression and anxiety) and organisational productivity (e.g., sickness, absence rates, and workers compensation claims) [ 19 ], understanding the burden of psychological distress and mental ill health, including suicidal ideation, and work-related psychosocial stressors across different career stages has important implications for employees, as well as occupational health, safety regulators, insurers, unions and employers [ 20 ].

The current study was undertaken as part of the International Association for Suicide Prevention taskforce on emotional health and wellbeing. It is exploratory in nature, with the aim of investigating the work-related psychosocial stressors experienced by mental health researchers across different career stages, the prevalence of psychological distress and mental ill health, and the association between work-related psychosocial stressors and psychological distress within this population. In doing so, we seek to expand on the existing evidence-base in order to better identify the possible modifiable work-related psychosocial stressors that impact mental health researchers and identify possible opportunities for intervention and prevention of psychological distress and mental ill health among mental health researchers.

Material and methods

Data and sampling.

This exploratory cross-sectional study used data from an online survey examining the association between work-related psychosocial stressors and psychological distress in an international sample of specific to mental health researchers. The study was approved by the University of Melbourne Human Research Ethics Committee (ID 1954670). All methods were performed in accordance with the relevant guidelines and regulations and all participants provided informed consent. The survey was available between 28 October 2019 and 1 March 2020. Participants were recruited via a number of targeted strategies including the email distribution lists of universities and mental health organisations, together with advertisements on the social media platform, Twitter. Recipients were invited to share the link to the study to their potentially eligible colleagues.

Eligible participants included those who were: (1) employed (full time, part time or casually) by a university or research institution (including research assistants, project managers, lecturers, and other academic staff), or; (2) enrolled as a postgraduate student (full-time or part-time Master’s or Ph.D. candidate), and; (3) the person’s main field of research related to mental health (e.g., psychology, psychiatry, social work). There were no restrictions on geographic location. All participants were screened against the eligibility criteria using an automatic skip-logic algorithm embedded within Qualtrics survey platform [ 21 ]. Participants who did not meet the eligibility criteria were not permitted to proceed to the study survey. The survey was formatted so that participants could not complete the survey more than once. Participation was anonymous and participants were not provided any incentive for taking part in the research.

A total of 357 participants provided consent, of whom 207 completed both the Copenhagen Psychosocial Questionnaire III (COPSOQ III) [ 22 ] and the Depression Anxiety and Stress Scale (DASS-21), representing 57.2% of the initial sample. Additional exploratory analyses were conducted on a subsample of 152 participants who answered questions about their history of mental health diagnoses.

Sociodemographic and work-related characteristics

Sociodemographic variables were assessed in a customised survey developed for the purpose of this study and included age, gender (male/female/other), relationship status (entered as a binary variable indicating the presence or absence of a relationship/spouse), dependents (e.g., children including biological and step-children; entered as binary variable representing the presence or absence of dependents), employment status (casual, full-time, part-time), type of work contract (fixed term/permanent) and clinical (e.g., registered psychologist or doctor) status (yes/no). Participants were classified according to their self-reported career stage. Participants who were employed as a research assistant or project officer were combined into a single category representing support staff. Participants who were enrolled in a Postgraduate degree (PhD or Master’s degree) were categorised as students. Participants who were employed at postdoctoral level or as a lecturer, were categorised as EMCRs. Lastly, senior researchers were participants who were employed as associate professor or above.

Work-related psychosocial stressors

Work-related psychosocial exposures were assessed using the COPSOQ III [ 22 ]. The COPSOQ III was selected because it has been validated in over 14 countries worldwide [ 23 ] and assesses relevant dimensions (e.g., work-life balance) that have been identified as key work-related psychosocial stressors experienced by academics in research settings [ 3 , 5 ]. Questionnaire items were obtained from the COPSOQ III middle and core items [ 24 ]. The questionnaire used in this study comprised 60 items, encompassing 25 psychosocial dimensions and five domains (Table 1 ) [ 22 ]. Each item is rated on a 5-point Likert scale. All items were transformed to a value ranging between zero (minimum value) to 100 (maximum value) with lower scores representing the lowest probable exposure (never/hardly ever) and 100 representing the highest probable exposure (always or to a very large extent). Higher scores indicated positive outcomes for the work organization and job content, interpersonal relations and leadership, social capital, and general health domains. Whereas higher scores indicated negative outcomes for the demands at work and work-life balance domains. Mean values were summarised according to the five core domains established previously in a previous international validation study that showed acceptable to good reliability with a Cronbach α > 0.7 [ 22 ] and good construct validity [ 25 ]. No adaption was made for this study.

General psychological distress

General psychological distress was assessed using the DASS-21 [ 12 ], a self-report measures of depression, anxiety and stress. The DASS-21 is an internationally validated instrument for measuring psychological distress [ 26 ] and has been shown as a valid and reliable tool for predicting the development of a possible mental health disorder in clinical settings [ 27 ]. Participants were asked to score each item on a 4-point Likert scale from 0 (did not apply to me at all) to 3 (applied to me very much). Total scores were computed by adding each item and multiplying the score by a factor 2 [ 12 ]. Total scores for the DASS-21 [ 12 ] range between zero and 120. Cut-off scores of 60 were labelled high distress [ 12 ]. Good inter-rater reliability, test–retest reliability, and validity of the DASS-21 have been reported previously in both clinical and non-clinical populations [ 28 , 29 , 30 ].

Self-reported diagnosed psychological disorder

Self-reported history of diagnosed mental ill health was assessed using two questions developed specifically for this study: (1) Prior to beginning your research career (including your Ph.D.), have you ever been diagnosed with a psychological disorder? (2) Since beginning your research career (including your PhD), have you ever been diagnosed with a psychological disorder? Participants were provided with the response options ‘yes’, ‘no’, and ‘I have not been diagnosed, but I probably could have been’.

Suicidal ideation

Self-reported suicidal ideation was assessed using three questions adapted from item 9 in the Patient Health Questionnaire-9 (PHQ-9; 31). Item 9 in the PHQ-9 [ 31 ] evaluates the frequency of suicidal ideation over the preceding two weeks and has been used as a single scale in studies reporting the prevalence of suicidal ideation [ 32 , 33 ] and has shown to be a valid measure of suicidal ideation in studies comparting results with those from detailed clinical interviews [ 34 , 35 , 36 ]. In the present study, participants were asked: (1) Over the past two weeks, how often have you been bothered by thoughts that you would be better off dead, or thoughts of hurting yourself in some way? Response options were: Not at all, more than half the days, nearly every day and several days. Items were collapsed into a binary variable representing the presence (consisting of the responses: “more than half the days”, “nearly every day” and “several days” or absence (consisting of the response: “not at all”) of suicidal ideation for each item. Additionally, participants were asked: (2) Over the past year, have you experienced thoughts that you would be better off dead, or thoughts of hurting yourself in some way? and (3) Since beginning your research career (including during your Ph.D.), have you ever experienced thoughts that you would be better off dead, or thoughts of hurting yourself in some way? Participants responded ‘yes’ or ‘no’, indicating the presence or absence of suicidal ideation.

Descriptive analysis was conducted to determine the sociodemographic characteristics of the study participants and their history of mental health diagnoses, suicidal ideation, work-related psychosocial exposures and psychological distress. Pearson’s chi-square test of independence was used to compare mental health diagnoses and suicidal ideation across career stages (research support staff, postgraduate students, EMCRs, and senior researchers). Group comparisons of work-related psychosocial exposures, DASS-21 [ 12 ] psychological distress and related sub-scores were conducted using ANOVA. Multiple pairwise comparisons were performed using the Tukey post hoc test, stratified by career stage.

Multivariate linear regression models [ 37 ] were used to estimate the association between the five work-related psychosocial stressor domains and psychological distress, controlling for age, sex, career stage, employment type (fulltime, part-time, casual) and the presence of a mental health policy at work (yes, no, unsure) lifetime mental health-diagnoses (present, absent), suicidal ideation in the past two-weeks (present, absent) for the subsample of 152 participants with complete data. In model 1 the association between work-related psychosocial stressors and psychological distress was adjusted by age and sex (male, female). Model 2 was adjusted for age, sex career stage, hours of employment, employment type, and the presence of a mental health policy at work. Model 3 was adjusted for the covariates included in Model 1 and 2 as well as lifetime mental health diagnosis and suicidal ideation in the past 2 weeks. Coefficients of linear regression ( β ) are calculated and displayed along with their 95% confidence intervals. To identify differences across models we compared coefficients and confidence intervals to examine whether the models were statistically different. All analyses were conducted in R v 4.1.2.

Sociodemographic and employment characteristics

Among the 357 participants who provided consent, 207 participants completed the full COPSOQ III [22). survey and DASS-21 [ 12 ]; a completion rate of 57.2%. Participants were from Australia (63.7%), Europe (29.9%), North America (5.3%), and South East Asia (< 1%). Most participants were female (82.1%) and over half (56.5%) were aged 18–34 years. Table 2 displays the sociodemographic and employment characteristics of participants according to career stage. The largest group of participants were postgraduate students (34.3%), followed by EMCRs (28.5%), senior researchers (20.3%), with research support staff constituting the smallest group (16.9%). One third (31%) of participants reported the presence of a mental health policy at their research institution, however relatively few had read the policy or were aware of its contents (15%).

Work-related psychosocial exposures

Table 3 shows the work-related psychosocial exposures according to career stage for the five work-related COPSOQ III [ 22 ] domains (see Table 1 ). Differences between career stages were observed for the domains: ‘demands at work’, ‘work-life balance (termed hereafter as work-life balance) ‘social capital’ and ‘health and wellbeing.’ Tukey’s post-hoc analysis revealed that the differences in the ‘demands at work domain’ were driven by lower (i.e., better) scores among research support staff relative to other career stages ( p  < 0.001 for postgraduate students, EMCRs and senior researchers, respectively). A similar trend was observed for the ‘work-life balance’ domain ( p  < 0.001 for postgraduate students; p  = 0.002 for EMCRs and p  = 0.04 for senior researchers). Differences in social capital were driven by higher scores among research support staff compared to senior researchers ( p  = 0.004). Lastly, differences in health and wellbeing were driven by higher scores in research support staff compared to postgraduate students ( p  = 0.003) and in senior researchers compared to students ( p  = 0.03).

Figures 1 , 2 and 3 show sub-scores for depression, anxiety, stress, and total psychological distress measured by the DASS-21 [ 12 ], stratified by career stage. Post-hoc comparisons revealed postgraduate students reported experiencing significantly greater anxiety and stress, and total psychological distress compared to research support staff ( p  = 0.01), EMCRs ( p  = 0.01) and senior researchers ( p  = 0.01; Table 4 ). A total of 27 (13.4%) participants reported DASS-21 [ 12 ] scores ≥ 60, indicating severe distress. Severe distress was most frequently reported among postgraduate students ( n  = 16), followed by research support staff ( n  = 4), EMCRs ( n  = 3) and senior researchers ( n  = 4). Fisher’s exact test revealed these differences were statistically significant ( p  = 0.02).

DASS-21 depression subscores by career stage

DASS-21 anxiety subscores by career stage

DASS-21 stress subscores by career stage

Self-reported history of mental health diagnoses and suicidal ideation

Of the 152 participants who responded to the question on self-reported mental health diagnoses, over half (54.6%) had received a mental health diagnosis at some point during their lives and a further 46 (30.1%) reported a suspected mental health disorder (i.e., did not receive a diagnosis but thought they should have; Table 5 ). The proportion of participants who had a diagnosed mental health disorder prior to their academic career was over one-third (37.5%), while just under one-third (31.6%) of participants received a psychological diagnosis since commencing their academic career. Senior researchers were significantly less likely to report having received a mental health diagnoses prior to their career in academia, compared to research support staff, postgraduate students, and EMCRs. Of the 80 (52.0%) participants who reported suicidal ideation since embarking on their academic career, 36 (17.4%) reported experiencing suicidal ideation in the past fortnight and 69 (33.3%) reported experiencing suicidal ideation in the past year. All measures of suicidal ideation were comparable across career stages.

Association between work-related psychosocial stressors and psychological distress

Table 6 shows the results of the regression models examining the relationship between work-related psychosocial exposures and psychological distress. A comparison of the confidence intervals for each of the models included in the analysis did not reveal statistically meaningful differences. After adjusting for all covariates, the association between ‘interpersonal relations and leadership’ and psychological distress was attenuated by the mental health covariates included in model 3 ( β  = −0.23, p  = 0.07). The association between the remaining work-related psychosocial domains and psychological distress remained significant. Based on the standardised β coefficients from the fully adjusted model (model 3), the strongest associations were observed for ‘work organisation and job content’ ( β  = −0.27, p  < 0.001) and ‘work-life balance’ ( β  = 0.23, p  = 0.01) domains. The weakest association was observed in the social capital dimension ( β  = −0.10, p  = 0.03).

Post-hoc power analysis

The post-hoc power analysis revealed that with 4 groups, a medium effect size 0.3, and a power of 0.8, the recommended sample size for the ANOVA was 44 for each group. The estimated power for the regression analysis was 0.9, based on 152 participants, 8 covariates, and a medium effect size of 0.3.

This study sought to describe the psychological distress, mental health and work-related psychosocial stressors experienced by mental health researchers according to their career stage and to identify the association between general psychological distress and work-related psychosocial stressors within the academic settings. Results of the regression analysis provide some insight into the potential modifiable work-related stressors associated with psychological distress among mental health researchers. For example, the strongest associations between psychological distress and work-related psychosocial stressors occurred in the ‘work organization and job contents’ and ‘work-life balance’ domains. The ‘work organization and job contents’ domain include factors such as influence at work, possibilities for development and control over working time, whereas the ‘work-life balance’ domain comprises commitment to the workplace, work engagement, job insecurity, insecurity over working conditions (e.g., office and desk space availability), quality of work, job satisfaction, and work-life-conflict. The current findings corroborate and extend on those reported in a previous survey involving 4,267 researchers in the UK that showed long-working hours, competing demands which reduce capacity to conduct research, and lack of job security as key concerns faced by academics [ 3 ]. Our study extends these findings by showing that after controlling for demographic, employment, and mental health factors, the same work-related psychosocial stressors are associated with increased psychological distress.

Results of the descriptive analysis of mental health and suicidal ideation outcomes revealed that over half of participants had either received a mental health diagnosis in their lifetime or had a suspected mental health diagnosis, compared to approximately 18% to 36% reported in previous studies in the general population [ 38 , 39 ]. Moreover one-third of participants had received a mental health diagnosis since commencing their academic careers. Similarly, rates of suicidal ideation were reported among 52% of participants, compared to approximately 10% reported in a previous cross-sectional study of suicidal ideation in the general population [ 40 ]. Taken together, these findings suggest that many mental health researchers have lived experience of mental ill health themselves, and that the work-place environment remains an important setting for primary and secondary prevention of mental-ill health.

This study showed that rates of self-reported mental health diagnoses and suicidal ideation were comparable across career stages for those in employment and the post-hoc power analysis demonstrated that these findings are unlikely to be driven by power limitations. However, postgraduate students reported notably higher scores for psychological distress, as well as anxiety, depression, and stress sub-scores, compared to research support staff, EMCRs and senior researchers. Potential explanations include financial strains experienced by many postgraduate students, which may include the need to also engage in paid employment leading to multiple role commitments [ 41 ]. Another possibility is that postgraduate students may face greater uncertainty regarding future employment [ 14 , 41 ]. Indeed, previous studies have shown that although the number of PhD graduates from science, technology engineering and mathematics has increased substantially over the past 20-years [ 42 ], the number of post-graduate research positions has remained constant, resulting in fewer job prospects among recent graduates [ 43 ]. Due to missing data on mental health outcomes it was not feasible to investigate the association between work-related psychosocial stressors and self-reported mental health diagnoses. However previous meta-analytic evidence across occupation groups found factors such as effort-reward imbalance and job insecurity were associated with a 1.81 and 1.91 increased odds of suicidal ideation [ 8 ], whereas factors such as long working hours and job insecurity were associated with 1.31–1.77 increased odds of developing an anxiety disorder [ 8 ].

It is noteworthy that senior researchers in this study were also significantly less likely to have received a mental health diagnosis prior to their career in academia compared to postgraduate students and EMCRs. On the one hand, it is possible that mental health researchers who stay in academia and transition to senior roles with tenure are those who are less likely to face ongoing work-related stressors that may contribute to their risk of psychological distress or mental ill health [ 44 ]. It is also possible that students and EMCRs experience significant differences in career pressure and funding success decline that senior researchers did not experience, to the same extent [ 45 ].

It has been argued that key structural changes within University institutions such as the marketisation of university education; increased competition between institutions; changes to higher education consumption patterns; the commodification of education; and the growth of managerialism is associated with negative work culture and reduced mental health and wellbeing in recent decades [ 5 ]. These structural changes have corresponded with increased student numbers, more demanding students, increased teaching demands, and a shift towards metrics-based performance management [ 5 ]. Similar findings were reported in the recent Wellcome trust report into academic work-place culture which identified the tendency for risk aversion and short termism among research institutions, manifested by short term contracts, job insecurity, increased competition to secure limited funding as significant concerns among academic researchers [ 3 ]. Moving forward, it is imperative that academic institutions reflect on the impact that structural barriers have on the workplace culture among academics and invest in strategies that have the potential to mitigate the adverse effects associated with psychological distress and wellbeing.

Despite the current recommendations, changes to the institutional structures require time and strategic investment, both of which are unlikely to occur rapidly. Thus it is important that the sector consider interventions that can be implemented in the interim, to bridge the gap between existing work-related psychosocial stressors and wellbeing among academics. Whilst evidence regarding the effectiveness of interventions targeting mental ill health in the workforce is limited, previous studies have shown that screening employees for mental ill health symptoms, proactive outreach, and providing opportunities for therapeutic counselling in the workplace, is both cost effective and associated with improved individual mental health outcomes and workplace productivity [ 46 , 47 ]. Furthermore, secondary interventions such as stress management, coping, resilience training, mindfulness-based stress reduction, problem solving, physical activity and cognitive behavioural therapy have been efficacious at increasing productivity and reducing distress in other occupational settings [ 48 , 49 , 50 , 51 , 52 ]. Given less than half of participants in the current study indicated having knowledge of a mental health and wellbeing policy or strategy at their place of employment, an important next-step forward for research institutions is to assess for the presence or absence of mental health and wellbeing policies within the workplace. This includes ensuring that mental health researchers have both access to and knowledge of help-seeking pathways at their institution or place of employment [ 53 ] and having policies in place that facilitate employees return to work following an episode of mental ill health [ 54 ]. Importantly these policies should include proactive strategies to reduce stigmatizing attitudes and cultures of non-disclosure that have been shown to impact individuals help-seeking behaviours in the workplace [ 55 ].

Lastly, data reported in the present study were collected prior to the onset of the COVID-19 pandemic. Factors such as social-distancing restrictions and the transition from office-based to home-based work environments have been linked to disruptions in productivity across disciplines [ 56 ]. As such, it is likely that the psychosocial stressors experienced by mental health researchers, such as those involving the work-life balance have increased as a result of COVID-19 restrictions. These effects may be particularly pronounced among specific groups, such as academics with young dependents [ 57 , 58 ] as well as postgraduate students who may have experienced significant disruptions in their social support networks whilst working remotely during their studies. Moving forward, future research that examines the impact of the COVID-19 pandemic on the mental health of mental health researchers and academics, more generally, should be prioritised so that decision makers within research institutions can embed timely and appropriate primary and secondary harm minimization strategies, accordingly.

Limitations

Limitations exist within this study. First, the majority of the sample were from western countries including Australia, UK and USA, with less than 1% from South East Asia and surrounding geographies. Significant cultural differences may exist in geographic regions not captured by the present survey and remain an important consideration for future studies. Second, the present study was limited to the 57% of participants who had completed the COPSOQ III [ 22 ] questionnaire and selection bias arising from missing data, particularly on suicide ideation outcomes, meant that it was not possible to investigate the association between mental health outcomes and work-related psychosocial stressors such as job insecurity and suicidal ideation, which have been reported in previous workplace studies [ 59 ]. Because attrition was greater than 40% it was not considered methodologically valid to use statistical adjustments such as multiple imputation on missing data [ 60 ]. For this reason the results of the present study should be interpreted in the context of generating hypotheses for future research [ 60 ].

Third, participants included in this study were self-selected and did not represent a random sample, nor did we sample participants for maximum variation. Furthermore, since participants were recruited via multiple email distribution links and via social media, it was not possible to identify the number of people who were contacted or reached, nor was it possible to calculate rates of refusal. This limitation is means that the study findings may be prone to selection bias and should be interpreted accordingly.

Lastly, previous studies have shown that occupation-based surveys may be susceptible to response biases reflecting higher rates of psychological distress compared to outcomes reported in population-based surveys [ 61 ]. This is considered to be a reflection of employees being consciously or unconsciously more inclined to vent their frustrations at their current work [ 61 ]. However, Winefield, Gillespie [ 6 ] found evidence to suggest that respondents to a university-based survey on stress and psychological distress were neither more nor less likely to display bias in their response based on their current distress. Given the current sample comprises mental health researchers who, by virtue of the academic and mental health training, may be more aware of response biases compared to the general population, we do not expect the results on general psychological distress to be significantly impacted by individual response biases. Nonetheless, as with any self-reported outcomes, results of the present study should be interpreted with caution.

Over half of mental health researchers have experienced mental ill health during their lives and this figure is greater than those reported in the general population and this warrants concerted efforts to validate these findings against larger, representative samples within academia. Despite working in the same environment, research support staff experience significantly less psychosocial stressors compared to postgraduate students, early-middle career researchers and senior researchers. In contrast, students are significantly more likely to experience mental ill health and suicidal ideation relative to mental health researchers at different career stages. Future research that targets the modifiable stressors at each career stage, including key systemic issues linked to work organization and job content and those that impact work-life balance has the potential to improve the overall mental health and wellbeing of mental health researchers and that these differences ought to be reflected in mental health and wellbeing policy and practice within research institutions.

Availability of data and materials

The dataset used and analysed during the current study available from the corresponding author on reasonable request.

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NTMH is funded by a Forrest Research Foundation Prospect Fellowship. GC is funded by the European Council: 101018325, EU 3rd Health Programme and the Health Research Board, Ireland: EIA-2019-005. OJK is supported by a Senior Postdoctoral Fellowship from Research Foundation Flanders (FWO 1257821 N). SR is funded by a Career Development Fellowship from the National Health and Medical Research Council of Australia (GNT1158881), and a Dame Kate Campbell Fellowship from the Faculty of Medicine, Dentistry and Health Sciences at The University of Melbourne. JR is funded by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1142348) and the University of Melbourne Dame Kate Campbell Fellowship. CCW is supported by a McKenzie Postdoctoral Research Fellowship at the University of Melbourne (MCK2020292).

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NTMH, EB, RB, GC, CW conceived of the research. CG and RB conceived the demographic questionnaire. NTMH, EB and CW were responsible for recruitment. NTMH conducted all data analysis. NTMH, EB, RB, GC, OK, SR, RP, JR, CCW contributed to the manuscript. All authors read and approved the final manuscript.

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Hill, N.T.M., Bailey, E., Benson, R. et al. Researching the researchers: psychological distress and psychosocial stressors according to career stage in mental health researchers. BMC Psychol 10 , 19 (2022). https://doi.org/10.1186/s40359-022-00728-5

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The effects of psychological distress and its interaction with socioeconomic position on risk of developing four chronic diseases

Kyle j.j. mclachlan.

a Edinburgh Medical School, College of Medicine and Veterinary Medicine, University of Edinburgh, Edinburgh, UK

b Department of Psychology, University of Edinburgh, Edinburgh, UK

Catharine R. Gale

c Centre for Cognitive Ageing and Cognitive Epidemiology, Department of Psychology, University of Edinburgh, Edinburgh, UK

d MRC Lifecourse Epidemiology Unit, University of Southampton, Southampton, UK

To examine the relationship between psychological distress and risk of developing arthritis, cardiovascular disease, chronic obstructive pulmonary disease and diabetes across the range of distress severity, investigate the mediating roles of health behaviours and explore whether the associations vary with socioeconomic position.

Participants were 16,485 adults from the UK Household Longitudinal Study We examined prospective relationships between psychological distress at baseline (measured using the 12-item General Health Questionnaire) and incidence of arthritis, cardiovascular disease, chronic obstructive pulmonary disease and diabetes (measured using self-report) over 3 years using logistic regression. We then examined the mediating effects of health behaviours and investigated whether the associations varied with socioeconomic position.

Distress significantly increased risk of incident arthritis, cardiovascular disease and chronic obstructive pulmonary disease in a dose-response pattern after controlling for age, sex, socioeconomic position, neighbourhood cohesion, marital status, BMI and baseline disease. High levels of distress (GHQ ≥ 7) increased risk of arthritis (OR 2.22; 1.58–2.13), cardiovascular disease (OR 3.06; 1.89–4.98) and chronic obstructive pulmonary disease (OR 3.25; 1.47–7.18). These associations were partially mediated by smoking status but remained significant after controlling for smoking status, diet and exercise. Distress significantly predicted incident diabetes in manual socioeconomic groups only. Effect sizes did not vary with socioeconomic position for arthritis, cardiovascular disease and chronic obstructive pulmonary disease.

Psychological distress increases risk of incident arthritis, cardiovascular disease and chronic obstructive pulmonary disease in a dose-response pattern, even at low and moderate distress levels. Future research should investigate the mediating role of inflammatory biomarkers.

• • Increasing levels of psychological distress raises risk of future chronic disease.
• • Risk of arthritis, lung disease and cardiovascular disease rose as distress increased.
• • Smoking habits explained a small part of these associations.

1. Introduction

Clinical depression and anxiety have been linked with the development of a variety of chronic diseases. There is evidence from several longitudinal studies that depression and anxiety increase risk of incident arthritis [ 1 , 2 ], cardiovascular disease (CVD) [ [3] , [4] , [5] , [6] , [7] , [8] ], chronic obstructive pulmonary disease (COPD) [ 1 , 9 ] and diabetes mellitus [ [10] , [11] , [12] ]. However, the health effects of less severe symptoms of depression and anxiety are poorly understood.

The symptoms of depression and anxiety are collectively termed psychological distress. Psychological distress encompasses a much wider range of experiences than mental illness, ranging from mild symptoms to severe psychiatric disease [ 13 ]. The 12-item General Health Questionnaire (GHQ-12) [ 14 , 15 ] is commonly used to measure psychological distress in population studies [ 16 ]. Clinically significant levels of distress (i.e. a GHQ-12 score of four or greater [ 14 , 17 ]) have been found to increase risk of incident CVD [ 18 ], COPD [ 19 ] and diabetes [ 20 ]. To our knowledge, no study to date has used GHQ-12 scores to examine the relationships between psychological distress and incidence of chronic diseases across the whole range of distress severity (i.e. comparing the effects of subclinical, moderate and high distress).

Recent studies have found a dose-response relationship between psychological distress and risk of mortality from all causes [ 21 , 22 ], colorectal and prostate cancers [ 23 ] and CVD [ 24 , 25 ] across the whole range of distress severity. Chronic diseases, and particularly cardiovascular diseases, are undoubtedly the most common causes of all-cause mortality in these studies [ 26 ]. It is therefore plausible that the risk of developing chronic disease will increase with increasing levels of distress severity in a similar fashion.

Lazzarino et al. [ 22 , 25 ] found that the effects of distress on mortality were stronger in people with lower socioeconomic position (SEP). It is unclear why psychological distress has greater consequences for health in people with low SEP. Investigating whether distress and SEP also interact to increase risk of incident chronic diseases and examining potential mediators of any associations will improve understanding of the relationship between psychological distress, SEP and health.

In this study, we will focus on arthritis, COPD, CVD and diabetes because although the relationship between significant distress and onset of these conditions is well-established [ 1 , 4 , 7 , 9 , 10 ], the impact of subclinical levels of distress on disease incidence remains a significant gap in knowledge. The evidence is less conclusive for other common conditions such as cancer [ 21 , 23 , 27 ] and liver disease [ 28 ] and further research into the effects of significant psychological distress on incidence of and mortality from these diseases is required before investigating the effects of lower levels of distress.

We used data from the UK Household Longitudinal Study (UKHLS) to investigate the prospective relationships between psychological distress and incidence of four chronic diseases (arthritis, CVD, COPD and diabetes mellitus) in participants aged 18 and over. We then examined whether the strengths of these associations varied with SEP category. In both analyses, we controlled for age, sex, SEP, marital status, neighbourhood cohesion, body mass index and chronic disease at baseline and then examined the potential mediating roles of unhealthy behaviours (smoking, poor diet and physical inactivity).

The UK Household Longitudinal Study (UKHLS) is a stratified clustered random sample of households representative of the United Kingdom population. It began in 2009 and gathers data annually from a population sample selected from 39,802 UK households [ 29 ]. All members of selected households over the age of ten are included in the study, amounting to 101,086 participants from diverse socioeconomic and ethnic backgrounds [ 29 ]. Data on health, psychological, social and economic variables is gathered once a year from adults using interviews and written questionnaires. In the current study we used data from the General Population Sample from wave 1 (2009–2010), wave 2 (2010−2011) and wave 3 (2011−2012) [ 30 ]. Ethical approval was granted by the University of Essex Ethics Committee. Participants gave written informed consent.

3. Measures

3.1. incident disease.

Participants were interviewed to find out whether they had been diagnosed with chronic disease at baseline using the question: “Has a doctor or other health professional ever told you that you have any of the conditions listed on this card?” At waves 2 and 3, participants were asked to report any newly diagnosed conditions from the same list. For the purpose of our analyses, we grouped the diagnoses of coronary heart disease, myocardial infarction, angina and stroke under the category of cardiovascular disease (CVD) and bronchitis and emphysema under the category of COPD. Incident disease variables were created for arthritis, COPD, CVD and diabetes by coding participants who reported a new diagnosis of the condition at wave 2 or wave 3 as “1” and participants who did not report a new diagnosis of the specific condition as “0”. These four incident disease variables were used as the main outcomes in our analyses.

3.2. Predictors

Psychological distress at baseline was measured using the 12-item version of the General Health Questionnaire (GHQ) [ 14 ]. The GHQ is used frequently in population studies to measure the extent to which individuals experience symptoms of depression, anxiety and other negative mental health states [ 31 ]. Participants are asked to indicate how frequently they experience 12 common symptoms (e.g. loss of sleep, loss of confidence). We recoded the response scores for each item using the bimodal method used by other researchers [ 21 , 22 ] as follows: 0 = ‘ not at all’ , 0 = ‘ no more than usual ’, 1 = ‘ more than usual’ , 1 = ‘ much more than usual ’. Using this method of interpretation, participants with a total GHQ-12 score of four or greater are considered to be a case of psychological distress. This threshold has been validated against standard psychiatric interviews and was found to correspond to clinical depression [ 17 ]. In order to investigate the effects of distress across the whole range of symptom severity, we divided total GHQ scores into four distinct groups: “ asymptomatic ” (0), “ low distress ” [ [1] , [2] , [3] ], “ moderate distress ” [ [4] , [5] , [6] ] and “ high distress ” [ [7] , [8] , [9] , [10] , [11] , [12] ]. Russ et al. [ 21 ] categorised GHQ scores using the same four groups.

Socioeconomic position (SEP) was measured at baseline using occupation. Each participant's current job, or most recent job for unemployed participants, was categorised according to Registrar General's Social Class. There were six categories of occupational social class: “professional occupation” [ 1 ], ‘managerial and technical occupation’ [ 2 ], “skilled non-manual” [ 3 ], “skilled manual” [ 4 ], “semi-skilled occupation” [ 5 ] and “ unskilled occupation” [ 6 ]. For the purposes of analysing the interaction between distress and SEP, we recoded these occupational classes into two broad categories: 1 = “ non-manual ” [ [1] , [2] , [3] ] and 2 = “ manual ” [ [4] , [5] , [6] ].

3.3. Potential mediators

The potential mediators included in analyses were smoking status, diet and exercise, all measured at wave 2. Smoking status was measured by asking participants “Have you ever smoked a cigarette, a cigar or a pipe?” (ever smoked) and “Do you smoke cigarettes at all nowadays?” (current smoker). The responses to these two questions were recoded to create a smoking status variable, where 0 = “ never smoked ”, 1 = “ ex-smoker” and 2 = “ current smoker ”. Level of exercise was measured by asking participants “On how many days in the last four weeks did you spend 30 minutes or more walking?” Quality of diet was measured by asking participants “On a day when you eat fruit or vegetables, how many portions of fruit and vegetables in total do you usually eat?”

3.4. Other covariates

Age, sex, body mass index (BMI), chronic disease at baseline, SEP, and social support, as indicated by marital status and neighbourhood cohesion at wave 1, were included as potential confounding variables in analyses. Neighbourhood cohesion was measured at baseline using eight items form the ‘Neighbourhood Cohesion Scale’ [ 32 ] which assesses the availability and quality of local social support [ 33 ]. Participants were asked to indicate the extent to which they agree with statements (e.g. “I talk regularly to my neighbours”) on a 5-point Likert scale ranging from 1 = “ strongly disagree ” to 5 = “ strongly agree ”. This eight-item questionnaire has been found to be unidimensional and have high levels of internal consistency (α = 0.87) [ 34 ]. Item scores were added to give a total score for neighbourhood cohesion.

4. Statistical methods

Our analyses were conducted using 16,485 participants aged 18 or over who had complete data on all variables. This sample amounts to 41.7% of the 39,573 people aged 18 and older who participated in the study between waves 1 and 3.

We used binary logistic regression to investigate the relationships between psychological distress at baseline and incidence of arthritis, CVD, COPD and diabetes. Participants diagnosed as having the disease of interest at Wave 1 were excluded from the analysis. The disease risks associated with low, moderate and high levels of distress were examined using asymptomatic participants as a reference group. Conducting analyses with men and women separately led to a very low number of disease events in some groups so we analysed men and women together, adjusting for age and sex (Model 1), further adjusting for SEP, neighbourhood cohesion and marital status (Model 2), and then adding BMI and other chronic diseases at baseline to the model (Model 3). We further adjusted for diet, exercise and smoking status (Model 4) and used Sobel-Goodman and boot-strapping tests to examine whether or not these health behaviours were significant mediators. 25% of the participants who had complete data on incident disease were excluded from our analyses because of missing data on one or more of the covariates. In order to investigate whether excluding these cases biased the results of this study [ 35 ], we carried out multiple imputation for missing covariate data on cases with compete incident disease data and repeated analyses with the 18 imputed data sets that we generated. The proportion of imputed values ranged from 1.78% for smoking status to 17.35% for exercise. Finally, we investigated whether the effect of psychological distress on incidence of arthritis, CVD, COPD and diabetes varied with SEP after controlling for age, sex, BMI and chronic disease at baseline. Statistical analyses were carried out using SPSS (Statistical Package for the Social Sciences) for windows (v. 22.0.0.1) and STATA (v. 14).

Table 1 shows the characteristics of the sample according to psychological distress. Higher levels of psychological distress were significantly associated with higher BMI, poorer health behaviour (in terms of diet, exercise and smoking), lower SEP and lower neighbourhood cohesion. People with high levels of psychological distress were also significantly more likely to be younger, female and married or living with a partner and have arthritis and COPD at baseline. During the 3-year follow-up period, 410 (2.9%) participants developed arthritis, 173 (1.1%) developed cardiovascular disease, 55 (0.3%) developed COPD and 141 (0.9%) developed diabetes.

Characteristics of the sample according to level of psychological distress (n = 16,485).

Note: p value indicates significance of test for linear trend in continuous variables and significance of chi-square test for categorical variables.

Table 2 shows the odds ratios for incident disease associated with different levels of psychological distress compared to asymptomatic participants. After adjusting for age and sex, there were significant associations between psychological distress and risk of arthritis and CVD across the full range of distress severity. Risk of developing COPD was also significantly associated with moderate and high levels of psychological distress but not low levels of distress. The linear trends between level of psychological distress and risk of arthritis, CVD and COPD were significant in all models ( Table 2 ), indicating dose-response relationships between distress and risk of developing these conditions ( Fig. 1 ). There were no significant associations between psychological distress and risk of diabetes.

Age- and sex- adjusted odds ratios (ORs) for disease incidence associated with different levels of psychological distress.

Odds ratios (95% CI) for incident chronic disease according to level of psychological distress (n = 16,485).

The associations between psychological distress, across the full range of severity, and risk of arthritis and CVD remained significant after additional adjustment for SEP, neighbourhood cohesion, marital status, BMI, baseline disease and health behaviours ( Table 2 ). In the fully adjusted model, the association between distress and risk of COPD remained significant at high levels of distress but not moderate levels of distress. Sobel-Goodman mediation tests showed that smoking partially mediated the associations between psychological distress and risk of incident chronic disease. Smoking status accounted for 4.6% of the total effect of distress on risk of developing arthritis (p = .001), 6.8% of effect on COPD (p = .002), and 2.5% of the effect on CVD (p = .030). Diet and exercise had no significant mediating effects. Bootstrap tests of mediation confirmed these results.

In total, 25% of the participants who had data on incident disease were excluded from our analyses because of missing data on one or more of the covariates. In order to investigate whether excluding these cases biased the results of this study, we repeated analyses using imputed covariate data for participants with complete data on incident disease. The ORs for the sample with imputed covariate data were similar to the ORs for the restricted sample ( Table 3 ). The effect estimates were stronger in the imputed sample for COPD and diabetes, such that psychological distress significantly predicted risk of developing COPD and diabetes at both moderate and high levels of distress in the fully adjusted models ( Table 3 ).

Odds Ratios (95% CI) for incident chronic disease according to level of psychological distress using imputed covariate data (n = 25,733).

We examined whether the associations between psychological distress and chronic disease incidence varied according to socioeconomic position after controlling for age, sex, BMI and disease at baseline. We found that the relationship between psychological distress and risk of diabetes differs by SEP (OR 1.14; 1.01–1.29; p = .034) such that the effect of distress is significant in the manual group (OR 1.10; 1.02–1.18; p = .012) but not in the non-manual group (OR 0.96; 0.97–1.06; p = .40). All other interactions were not significant (p > .10) (results not shown).

6. Discussion

In this sample of 16,485 UK adults, higher levels of psychological distress were associated with increased risk of developing arthritis, COPD and CVD over a 3-year follow-up period. There were no significant associations between distress and risk of incident diabetes. Psychological distress was found to increase risk of incident arthritis, COPD and CVD across the whole range of symptom severity (i.e. low, moderate and high distress) in a dose-response pattern although the effects of low distress on risk of COPD were not significant. The strength of the associations between low, moderate and high distress and incidence of arthritis and CVD was only partially attenuated after full adjustment for covariates. The association between moderate distress and risk of COPD became non-significant after adjusting for all potential confounding or mediating variables, but that between high distress and risk of COPD persisted. Mediation tests showed that the effects of psychological distress on risk of incident arthritis, COPD and CVD were partially mediated through smoking status at baseline. Diet and exercise had no significant mediating effects. Our analyses using data with imputed covariate values led to similar ORs for arthritis and CVD and stronger effect estimates for COPD and diabetes. This suggests that restricting our sample to complete case resulted in us underestimating the true associations between distress and risk of developing COPD and diabetes. Perhaps this is because participants with poorer health and higher levels of distress are less likely to provide complete data [ [36] , [37] , [38] ], thus introducing a bias in our restricted sample towards people who are healthy and less distressed.

We found that the effect of psychological distress on risk of diabetes—but not on risk of the other chronic diseases studied—differed according to SEP, such that the effect was significant in people who had a manual SEP but not in those who had a non-manual SEP. However, the number of incident cases of diabetes was very small. There were as few as 13 new diabetes diagnoses in people with high distress in the manual group and 6 in people with moderate distress in the non-manual group, which is likely to lead to positive or negative bias [ 39 ]. We therefore conclude that there is no convincing evidence to suggest that the effects of psychological distress on risk of arthritis, CVD, COPD and diabetes vary according to SEP.

To the best of our knowledge, this the first longitudinal study to examine the relationship between incident arthritis, COPD, CVD and diabetes and psychological distress across the whole range of distress symptoms. Previous longitudinal studies have found that clinical depression – or high psychological distress (GHQ ≥ 4) – increases risk of arthritis [ 1 ], COPD [ 19 ] and CVD [ 7 , 8 ]. Here, we found a dose-response relationship between distress and risk of developing arthritis, COPD and CVD, which is consistent with studies which found a dose-response relationship between distress and mortality from cardiovascular disease and all causes [ 22 , 25 ].

We found no significant associations between psychological distress and risk of diabetes at low, moderate or high levels of psychological distress. Contrary to these findings, a meta-analysis of nine longitudinal studies found that clinical depression significantly increases risk of type 2 diabetes [ 10 ]. In another study, risk of developing type 2 diabetes was found to increase incrementally with increasing severity of depressive symptoms [ 40 ]. We repeated analyses with imputed covariate data for incomplete cases and found that risk of developing diabetes was significantly increased by moderate distress (OR 1.63; 1.10–2.42) and high distress (OR 1.60; 1.07–2.39) after adjusting for all potential confounding. This suggests that restricting our sample to complete cases is likely to be responsible for the discrepancy between results.

Previous studies have shown a stronger association between distress and mortality in people of lower socioeconomic position [ 22 , 25 ]. To our knowledge, it is not known whether there is a similar interaction between psychological distress and SEP as regards risk of chronic diseases. Here, we did not find evidence to suggest that the effects of psychological distress on the risk of incident arthritis, COPD and CVD vary according to SEP. It may be the case that the effects of distress vary according to SEP for prognosis of these diseases (i.e. mortality) but not onset of disease. We found that the effect of distress on risk of diabetes varied according to SEP but case numbers were very small. This study was underpowered to assess moderation and these negative findings could be due to type II error.

In this study, we found that the effects of distress on risk of developing arthritis, CVD or COPD were partially mediated by smoking status. This may reflect the fact that distressed individuals smoke to cope with or relieve psychological distress [ 41 , 42 ]. In this sample, people with high levels of distress were more likely to smoke ( Table 1 ) but, despite this, smoking only explained 4.6%, 6.8%, and 2.5% of the effect of distress on risk of arthritis, COPD, or CVD respectively.

Another possible explanation for the increased risk of arthritis, COPD and CVD associated with increasing levels of distress is the link between distress and inflammation. Chronic psychological distress leads to dysregulation of the hypothalamic-pituitary-adrenal axis and increased cortisol levels [ 43 , 44 ]. These changes bring about a heightened inflammatory response across the whole body [ 45 , 46 ], which is known to increase risk of arthritis [ 47 ], COPD hospitalisations [ 48 ] and CHD events [ 49 , 50 ]. The precise mechanisms of these associations are not clear but chronic inflammation is likely to increase disease risk by leading to hypertension, raised heart rate, raised cholesterol, insulin resistance, endothelial dysfunction and deposition of fat in the abdomen [ 43 , 44 , 51 ]. Future research should examine the mediating role of inflammatory markers.

Finally, the possibility of surveillance bias must not be overlooked. Higher rates of disease diagnosis in people with high distress may reflect the fact that people who have depression are more likely to consult their doctor and receive a diagnosis [ 52 ].

This study included a large sample (N = 16,485) that was highly representative of the UK adult population. The sample was culturally diverse and spanned the entire adult age range. Data was gathered by highly experienced interviewers who received extensive training to ensure all participants were interviewed in the same way [ 53 ]. However, our study also has a number of limitations associated with data collection. First, baseline disease cases and incident disease cases were determined using self-report of diagnoses and not objective medical records. However, there is generally a strong agreement between self-reports and medical records [ 54 , 55 ]. Second, the interview questions did not distinguish between different types of arthritis, diabetes and stroke. The different forms of each disease result from distinct pathological processes which may have different relationships with distress. Third, data on smoking, diet and exercise were gathered in wave 2 and not at baseline. However, longitudinal research provides evidence that engagement in these behaviours tends to remain stable over a period of 4 years [ 56 , 57 ]. Fourth, neighbourhood cohesion may not provide an accurate measure of social support in the UK because most significant social relationships occur beyond the local neighbourhood [ 58 ].

There were also limitations relating to statistical analysis and interpretation. First, a substantial proportion of participants (58.3%) were excluded from analyses due to missing data. To investigate the effect of this, we compared the results of our analyses with results using imputed covariate data and found that the bias introduced by restricting the sample led to an underestimation of effect sizes. Second, previous studies have found that the strengths of the associations between distress and incident disease differed between sexes (e.g. 19, 20, 45). We also conducted preliminary analyses by sex but there was a very low number of disease events in some groups so the results were vulnerable to bias [ 39 ]. Third, the possibility of reverse causality must not be overlooked. Psychological distress is a common consequence of COPD [ 59 ] and arthritis [ 60 ] in particular. This study excluded people who had disease at baseline but undiagnosed disease could give rise to symptoms of distress that feature in the GHQ-12 (e.g. loss of sleep). There can be significant delays between the onset of symptoms and diagnosis of arthritis [ 61 ] and COPD [ 62 , 63 ] so high levels of distress may be a consequence of undiagnosed disease processes. The potential influence of reverse causality could be minimised by following participants for a longer period of time and excluding disease events in the first two years of follow-up.

With the limitations discussed in mind, we conclude that psychological distress increases risk of developing arthritis, COPD and CVD in a dose-response pattern. These relationships are partially mediated by smoking status. There was no evidence for graded associations between distress and risk of diabetes. However, distress significantly increased risk of diabetes in manual SEP albeit the number of cases were very small. We found no evidence that the strength of associations varied according to SEP for arthritis, COPD and CVD. These findings have considerable clinical and public health implications. First, screening for distress may help to identify those at risk of developing arthritis, COPD and CVD. Second, interventions to improve distress may help to prevent and limit progression of disease, even for people with low levels of distress. A number of meta-analyses have found that psychological interventions serve to decrease pain and joint swelling in arthritis [ 64 ], improve exercise capacity in COPD [ 65 ] and reduce risk of recurrent cardiac events [ 66 ]. Our findings have particular significance for primary healthcare physicians as they have a leading role in preventing and managing chronic disease [ 67 ] and in diagnosing and managing psychological distress in patients [ 68 , 69 ]. Our findings are also highly relevant to the whole UK population since arthritis, COPD and CVD are among the most common causes of disability and death in UK adults [ 70 ]. Future longitudinal studies should examine the effects of psychological distress on risk of chronic disease over a longer follow-up period and investigate the mediating role of inflammatory biomarkers.

Conflicts of interest and sources of funding

The authors have no conflicts of interest to declare.

Acknowledgments

CRG is a member of the University of Edinburgh Centre for Cognitive Ageing and Cognitive Epidemiology, funded by the MRC and BBSRC part of the cross council Lifelong Health and Wellbeing Initiative (MR/K026992/1).

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A Systematic Review of Qualitative Research Focusing on Emotional Distress Among Adolescents: Perceived Cause and Help-Seeking

• Systematic Review
• Open access
• Published: 16 January 2023
• Volume 8 , pages 387–402, ( 2023 )

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• Alisha O‘Neill   ORCID: orcid.org/0000-0001-7042-857X 1 ,
• Neil Humphrey 1 &
• Emily Stapley 2  

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Causal attributions and help-seeking is not well explored among adolescents, despite evidence of perceived causes for difficulties influencing how adults engage with treatment and seek help. This study reviewed extant literature to understand what adolescents at increased risk of developing mental health difficulties and those with clinically significant symptoms perceive to be the cause of emotional distress; to determine the extent to which perceived cause influences help-seeking; and to identify potential differences/commonalities between these groups. A systematic review and qualitative thematic synthesis were conducted. 3,691 articles were identified, 18 were eligible to be included and were synthesized using thematic synthesis. Six main themes related to perceived cause are reported. Three of those themes were shared between the clinical and at-risk groups: (1) challenging social factors and perceived difference, (2) problematic family dynamics, and (3) cause is complex and multifaceted. Three themes were not: (4) unfairness and perceived lack of agency and (5) concern for self and others, were exclusive to the at-risk group, and (6) coping with a mental health difficulty was exclusive to the clinical group. Four main themes related to causal attributions and help-seeking were found, including: (1) cause and implications for self-preservation; (2) the degree of personal and wider knowledge and understanding of cause; (3) perceived extent of control in managing cause; and (4) cause having potential to affect others. The findings of this review demonstrate that perceived cause for emotional distress plays a role in help-seeking among adolescent groups and highlights likely differences in how adolescents at-risk of mental health difficulties and those with clinically significant symptoms attribute cause for their difficulties and subsequently seek help. This has important implications for how to support young people experiencing or at risk of mental health difficulties and presents a strong case for pursuing more research in this area.

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Introduction

Perceived cause for difficulties has been found to influence how adults engage with treatment and seek help (e.g., Houle et al., 2013 ; Stolzenburg et al., 2019 ); However, causal attributions and related help-seeking is less well explored among adolescents. Adolescence is a time of heightened emotional distress, a term referring to difficult affect responses, (e.g., feeling worried, angry, anxious or depressed) often experienced as a result of ineffective or burdensome adaptions to environmental demands (Matthews, 2016 ). Knowledge of the ways in which perceived cause for emotional distress might influence help-seeking during adolescence is essential to support young people who are struggling (O’Neill et al., 2021 ), and such insight may prove useful for the development of effective interventions to improve help-seeking. To aid the development of interventions to support young people’s help-seeking behavior, it is first necessary to understand the current evidence base (Divin et al., 2018 ); hence, an understanding of what extant literature can contribute to knowledge of emotional distress and help-seeking is useful. The present review considers what adolescents at increased risk of developing a mental health difficulty and those with clinically significant symptoms perceive to be the cause of their emotional distress; explores the ways in which causal perceptions might influence help-seeking; and highlights potential differences between at-risk and clinical adolescent’s causal perceptions and subsequent help-seeking behavior.

With half of all lifetime mental health conditions manifesting by age 14 (WHO, 2020 ), there is considerable interest in preventing onset during adolescence. One of the most significant challenges to early intervention and prevention is poor help-seeking (Rickwood & Thomas, 2012 ), particularly during this developmental period (Xu et al., 2018 ). Help-seeking lacks a universally accepted definition (Heerde & Hemphill, 2018 ). However, in the current study, the World Health Organisation’s definition is used (Barker, 2007 , p.2), which is as follows: “[a]ny action or activity carried out by an adolescent who perceives [themself] as needing personal, psychological, affective assistance or health and social services, with the purpose of meeting this need in a positive way.” Evidence suggests that multiple factors contribute to low uptake of help-seeking in adolescence, including limited mental health knowledge; stigma and embarrassment; trust and confidentiality; logistics (Radez et al., 2021 ); making sense of difficulties; problem disclosure, and ambivalence to seeking help (Radez et al., 2022 ). What is clear is that help-seeking is complex.

Adolescents face significant emotional, social, and physical changes (Zhao et al., 2015 ). While most successfully navigate associated challenges (Arnett, 1999 ) and emerge with a good general quality of life (Rapee et al., 2019 ), the overall prevalence of emotional distress increases significantly during this period (Cohen et al., 2018 ). If not managed successfully, this can increase the risk of mental illness (Gloria & Steinhardt, 2016 ). Mental health conditions are determined by strict diagnostic criteria, however, anyone can experience emotional distress. Indeed, for young people living with a mental illness, the extent of emotional distress can have implications for experience and management of illness (Cordell & Snowden, 2015 ). Therefore, it is not only imperative to explore ways to help adolescents manage emotional distress to prevent the onset of illness, but also to help those currently experiencing mental health difficulties.

Informal networks, such as friends, parents, and school staff, are well placed to help young people manage their difficulties as a valuable support system (Hom et al., 2015 ) and to help them access additional help (Radez at al., 2022 ). However, emotional distress is often problematically dismissed as “normal” for teenagers (Blakemore, 2018 ), and such rhetoric can inhibit significant others in the lives of young people from recognising the presence or emergence of mental illness (e.g., see Radez et al., 2022 ; Stapley et al., 2016 ). The likelihood that a certain emotional state may signify mental illness in one adolescent yet may be considered “normative” in another, demonstrates that understanding emotional experience during adolescence is imperative (Bailen et al., 2019 ). Thus, difficulties should not be dismissed as “normal” for teenagers (Blakemore, 2018 ); rather, steps should be taken to better understand and encourage help-seeking in the context of emotional distress.

Research suggests that perceived cause of difficulties may play a role in the ways in which adults engage with treatment and seek help for their difficulties (e.g., Houle et al., 2013 ; Stolzenburg et al., 2019 ). This may also be the case for adolescents. For instance, Midgley and colleagues ( 2017 ) suggested that young people diagnosed with depression who view their illness as part of themselves may struggle to believe their difficulties can be ameliorated, and thus be less inclined to seek help. Therefore, it is probable that perceived cause for emotional distress has implications for help-seeking in adolescence. Further work is needed to understand the extent to which this might be the case; particularly as such understanding may prove useful in the development of effective interventions that promote adaptive help-seeking and work to prevent mental illness/support those currently experiencing clinically significant symptoms.

Much of the work in help-seeking in adolescence focuses on clinical (e.g., Radez et al., 2021 ; Radez at al., 2022 ) or general population (e.g. Tharaldsen et al., 2017 ; Doyle et al., 2017 ) samples. At-risk groups – with risk being understood as a myriad of factors, including sociocultural and demographic factors (Kirby and Fraser 1997 ) that may negatively impact health outcomes (Romer, 2003 ) – have comparatively low research focus. There are likely differences in help-seeking behaviors in the context of perceived cause for emotional distress among clinical and at-risk groups, as research indicates that there may be differences in perceptions of cause of difficulties more generally (e.g., for at risk see O’Neill et al., 2021 ; for clinical see Midgley et al., 2017 ). However, to date no study has explored areas of convergence and divergence in relation to perceived cause for emotional distress and help seeking between these groups. Doing so can provide useful insight into how to better support young people based on their level of need, which may be particularly helpful for non-mental health trained professionals. It is imperative that these allied professionals can support young people effectively (Banwell et al., 2021 ), especially as adolescents may be more comfortable seeking help from informal sources, such as teachers and parents (Rickwood et al., 2005 ).

Current Study

Understanding adolescent help-seeking in the context of perceived cause for emotional distress is a valuable but under explored research endeavor. This study aimed to review qualitative and mixed-methods studies to address this gap. The first research question was concerned with what adolescents (at increased risk of developing a mental health difficulty and those with clinically significant symptoms who are undergoing/have undergone clinical treatment) perceive to be the cause of their emotional distress. The second research question addressed the ways in which perceived cause might influence help-seeking. The final research question was concerned with exploring potential differences in the ways in which at-risk and clinical adolescent groups engage with help-seeking in the context of perceived cause for emotional distress. The findings have been organized into two overarching categories, the first of which is “perceived cause of emotional distress in at-risk and clinical groups”, and the second being “causal perceptions and their influence on help-seeking: commonalities and differences among at-risk and clinical groups”.

A meta-synthesis using thematic synthesis was conducted, following an a priori review protocol which was developed in collaboration with co-authors and registered to PROSPERO Centre for Reviews and Dissemination (ID: CRD42019131247). The protocol followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA; Moher et al., 2009 ); see Fig.  1 . Progress updates were documented periodically.

PRISMA flow diagram outlining study identification

Eligibility Criteria

Inclusion and exclusion criteria were established to determine if a study was eligible for review (see Table  1 ).

Initial scoping of the literature on adolescent help-seeking indicated that studies may not focus explicitly on investigating links between perceived cause of emotional distress and help-seeking behavior, as this is still a relatively new and underdeveloped research area (Midgley et al., 2017 ). Therefore, an inclusion and exclusion criterion was created that allowed for articles that reported both help-seeking and causal beliefs in relation to emotional distress without making explicit links between them in the findings. This broad approach enabled us to explore what extant literature can teach us about this area whilst also providing a foundation for further necessary work. Examples of some of the aims of the included studies are as follows: to capture young people’s experience of living with obsessive-compulsive disorder (OCD) (Keyes et al., 2018 ); explore perceptions of young offender’s support-seeking (King et al., 2014 ); investigate unaccompanied minors views and perceptions of mental health services (Majumder et al., 2015 ); and, investigate adolescent sexual assault victims’ disclosure and help-seeking experiences (Campbell et al., 2015 ).

Search Strategy and Selection of Studies

Ovid PsycINFO, Embase, Ovid MEDLINE(R), Google Scholar, and Scopus were searched in June 2019, including articles published from 1999 to 2019. Search terms related to population of interest (e.g. “adolescent”; “teenager”), emotional distress (e.g. “emotional symptoms”; “emotional distress”), help-seeking (e.g. “help-seeking”; “support”), methods (e.g. “qualitative”; “interview”), and causal attributions (e.g. “cause”; “blame”) were utilised (exact research phrasing can be viewed in the protocol; PROSPERO reference ID: CRD42019131247). Search terms were adapted to suit the requirements of the specific database and studies were limited to publications in English. The population of interest were adolescents aged 10–19 in accordance with the World Health Organisation’s (WHO) definition of adolescence (WHO, 2022 ). In the case where study samples overlapped with the upper or lower limit of this age group, these were excluded, unless it was possible to extract the data within the specified age range. Titles and abstracts were screened to identify studies suitable for inclusion. Those identified as potentially suitable at this stage were then read in full, and those deemed suitable against the inclusion criteria were included in the present study.

Quality Appraisal

While the use of quality appraisal in qualitative research is contested (Mohammed et al., 2016 ), it is argued that quality needs to be determined for qualitative syntheses to be considered influential, particularly in relation to policy (Scantlebury et al., 2018 ). Further, transparency in reporting ensures the credibility of the synthesis (Mohammed et al., 2016 ). The quality assessment used in the current study was based on criteria outlined by Spencer et al., ( 2004 ). Inclusion was based on the four guiding principles of Spencer and colleagues ( 2004 ): contributory (advances knowledge), defensible in design, rigorous in conduct, and credible in claim. Studies that were found to meet these principles were included. Spencer and colleagues ( 2004 ) note the importance of professional judgement when determining the quality of qualitative research; thus, the studies were reviewed by the first and second author, both of whom have qualitative research experience, using the framework. Based on the criteria, each of the final studies were deemed to be a satisfactory level for inclusion on the assumption that they were of sufficient overall quality.

Data Extraction

Initial search results were stored on Endnote; duplicates from the Ovid search were removed during the search and care was taken to ensure additional duplicates were removed once the articles were transferred to Endnote. Titles, abstracts, and key words of all potential studies were screened for inclusion by the first author and those that appeared to match the criteria for inclusion were collated. To establish consistency, 10% were reviewed by the second author, and discrepancies and inconsistencies were reviewed and resolved via discussions. Then the first author read full texts against the inclusion criteria keeping those who fulfilled the criteria. Again, 10% were reviewed by the second author. Rejected studies at this point and reasons for rejecting were recorded.

Data Synthesis

As noted, research explicitly focusing on the extent to which causal attributions may influence how adolescents seek help is limited. However, it was found that numerous studies reported findings that encapsulated both cause and help seeking without explicit links. To successfully draw these ideas together, an interpretive framework that allowed for a close reading as well as a holistic overview of the research findings was required. Accordingly, the present review was conducted as a thematic synthesis, following the 3 stages outlined by Thomas & Harden ( 2008 ): 1) line-by-line coding; 2) developing descriptive themes; and 3) generation of analytical themes. Stages 1 and 2 provided a “close” analysis of the findings section of the included studies, and stage 3 provided an interpretive stage to go beyond the findings of the primary studies to generate the final themes (Thomas & Harden, 2008 ). Further, while thematic analysis (TA) was the most frequently used method of analysis in the included studies (see Table  1 ), it was important to be able to successfully analyse data from studies that used an alternative analysis. Thematic analysis has been described as a “ process that can be used with most, if not all, qualitative methods” (Boyatzis, 1998 p.4), further supporting the decision to conduct a thematic synthesis.

To begin the analysis, the first author split the included studies into “clinical” or “at-risk” categories based on the sample description; this allocation was discussed with the second author and any discrepancies were discussed and resolved. The first author then transferred the studies to NVivo under either “clinical” or “at-risk” project titles to be analysed independently, allowing for comparison between the two groups. The clinical group comprised studies with a sample of young people reporting clinically significant mental health difficulties/diagnosed with a MHD and engaged with/previously engaged with mental health services for treatment. The at-risk group was defined by studies who included young people exposed to a known risk factor in their sample (e.g., domestic violence, alcoholic parent, sexual assault); see Tables  2 and 3 for specific subgroup information.

With the assistance of the qualitative data analysis software, NVivo, the findings section of each study was analysed verbatim using line-by-line coding to create initial codes, these codes were used to create “descriptive themes”. The descriptive themes then acted as a catalyst for the final “analytical codes”, this ensured that the final codes were grounded in the data but that they were also able to answer the research questions effectively. The final themes were discussed and refined by the first and second authors and sent to the third author for discussion and feedback. An interpretive synthesis proved a useful way to pull together seemingly incongruent concepts from the findings of extant research to demonstrate the possibility of links between perceived cause for emotional difficulties and help-seeking. However, given the dearth of explicit research in this area, this review seeks to highlight the potential links and to lay the foundations for further necessary work in this area.

Study Selection and Characteristics

Through the review process, 18 studies from the 3,691 identified through initial searches were determined to be eligible for inclusion. Figure  1 illustrates the PRISMA flowchart which outlines the retention and exclusion of studies throughout the review process.

Table  2 (at-risk) and Table  3 (clinical) outline the characteristics of the 18 included studies. Six studies were conducted in the UK (33%), four in the USA (22%), two in Australia (11%), two in Canada (11%), two in Sweden (11%), and one each in Portugal (6%) and New Zealand (6%). Six studies used a clinical sample, and twelve used an at-risk sample. See Tables  2 and 3 for further details.

Category 1: Perceived Cause of Emotional Distress in at Risk and Clinical Groups

Six main themes were identified within this category: (1) challenging social factors and perceived difference; (2) problematic family dynamics; (3) cause is complex and multifaceted; (4) unfairness and perceived lack of agency; (5) concern for self and others; and, (6) coping with a mental health difficulty. Of these, challenging social factors and perceived difference, problematic family dynamics, and cause is complex and multifaceted were shared across both the at-risk group (ARG) and clinical group (CG). Several main themes were broad and captured the nuance of the content, some required subthemes for further clarification (see Fig.  2 ). The themes are presented to emulate the thematic map (see Fig.  2 ), with shared themes including ARG and CG findings, and divergent themes including findings only from the relevant group.

Thematic map of perceived cause of emotional distress for the at-risk and clinical groups

Shared theme 1: challenging social factors and perceived difference . This shared theme illustrates that social pressure related to acceptance and feeling/being made to feel different were factors that young people felt contributed to the onset of distress. This includes pressure to emulate body “ideals” and not being able to live up to perceived beauty standards (Sabiston et al., 2007 ); family non-acceptance and personal non-acceptance regarding sexual orientation e.g., “[r]ight now, I’m not really, I don’t really accept it … it feels like there’s a weight on me” (Diamond et al., 2011 P.139); and, judgments and prejudices held by others based on the previous actions of the adolescents (King et al., 2014 ) or their background, for instance, “it seems that most people is afraid, they must be thinking that I’m a thug or something like that. Then, a robbery happens, and who is to blame? Me, of course. [and I feel] Outraged” (Magalhães et al., 2018 , p.1809). Fear related to the judgments of others and the possible repercussions of those judgements, as well as fears for personal safety, worrying about others finding out, parents not being supportive, and being bullied were all noted as contributory factors for sexual minorities (Diamond et al., 2011 ). Other adolescents found that feeling alone (Majumder et al., 2015 ), being bullied/experiencing friendlessness as a result of being “different”, failing to feel “right” (Keyes et al., 2018 ), and a lack of authenticity from others (Crouch & Wright, 2004 ) as distressing. This included feeling like some people copied self-harming behavior to get attention, detracting from what they felt were the experiences of “authentic” self-harmers (Crouch & Wright, 2004 ). Similarly, nasty (Porteous et al., 2019 ) and derogatory comments, as well as ridicule in relation to racial and cultural identity, were also instances that young people identified as contributing to emotional distress (Edwards et al., 2019 ).

Shared theme 2: cause is complex and multi-faceted . Across both groups, adolescents identified multiple difficulties which, when combined, were perceived as causal, e.g. simultaneously dealing with factors like an ill loved one, financial/family/school/social-based stressors, and death of someone close (Porteous et al., 2019 ; McAndrew & Warne, 2014 ): “[i]t was just all at once: stress from school and stress from people, friends being horrible people, and the family arguing” (McAndrew & Warne 2014 , p.573). While their personal circumstances may be different, for instance, being exposed to war and the associated difficulties – including the death of loved ones, extreme violence, seeing dead bodies, and having to leave their homes and families – (Majumder et al., 2015 ), or sexual minorities who may be dealing with the death of friends and family, rape, financial hardship, feeling unsupported and uncared for, family issues, and ill loved ones (Diamond et al., 2011 ), there is a recognition that emotional distress is not caused by a single factor. The multifaceted nature of causal attributions is also highlighted by some young people’s inability to understand what they are feeling or why they are feeling it (Wilmots et al., 2020 ), or that, for some, talking about the cause of their difficulties engenders further distress (Majumder et al., 2015 ). Indeed, coping strategies used to deal with distress may also subsequently become a cause of emotional distress; for instance, when talking about self-harm, one participant stated they “felt ashamed”, and another explained that “[a]fter the buzz had worn off, I felt terrible, guilty, bad” (McAndrew & Warne, p.573).

Shared theme 3: problematic family dynamics. Young people identified difficult home circumstances as emotionally distressing. This included witnessing parental abuse, “I wanted to kill myself ‘cause of shit between my mother and father” (Aymer, 2008 , p.661), and fear of being abused in by paternal figures, “[h]e was so mean to us when he drank. I was scared he would hurt me” (Aymer, 2008 , p.659). Parental conflicts, arguments, and financial stressors (Porteous et al., 2019 ; Ayme; Tinnfa ̈lt et al., 2011 ), as well as parental alcoholism (Aymer, 2008 ; Tinnfa ̈lt et al., 2011 ) were also identified. Other adolescents highlighted family conflict (Crouch & Wright, 2004 ), hostility in the family, parental divorce, separation, and arguments between parents, for instance: “I know there was arguments between (my) parents. Obviously, that does make you sad because you want them both to be happy” Keyes et al., 2018 , p.180) as causal. Some young people even felt that if they were not dealing with family problems it would be transformative, for instance, “I think if my parents weren’t divorced and if my sister didn’t have cancer I would be a very, very different person and I would be smiley, happy” (Porteous et al., 2019 , p.121).

At-risk group theme 1: concern for self and others . Some young people identified concern for themselves and those they care about as a source of emotional difficulties. This may include safety concerns due to the possible actions of an alcoholic paternal figure, or fear of gang-related violence: “I was afraid, ‘cause gang fights can start up again and, if you are around, you could be killed” (Aymer, 2008 , p.660). Personal health related anxiety, feeling forgotten in the wake of a sibling having a terminal illness, as well as seeing a loved one in pain, and fearing they might die, may also be contributory (Phillips & Lewis, 2015 ; Porteous et al., 2019 ).

At-risk group theme 2: unfairness and perceived lack of agency . Feeling powerless and/or not having control over things happening in their lives, as well as being treated unfairly appeared to be causal factors for some adolescents. This included not being allowed to do what they wanted, leading to anger and subsequent aggression: “this morning I just punched a hole through my friggin [swear word] bedroom door… it helped” (Edwards et al., 2019 , p.165), or teachers unfairly criticising young people (Edwards et al., 2019 ). Not receiving adequate educational support and subsequent concerns about not being able to secure a job, as well as being discriminated against or treated unfairly by the judicial system (Magalhães et al., 2018 ) also appeared to engender emotional distress. This extends to having other people make decisions about your life against your will, including reporting that you were the victim of an assault (Campbell et al., 2015 ). Additionally, not being kept informed about the treatment of an ill sibling may also be perceived as distressing: “You go into her room and it was like “what’s happening?” and she’s only getting x-rays, but I think she’s going into operation or something and it just made it difficult and it made me angry that they weren’t telling me anything” (Porteous et al., 2019 , p.121).

Clinical group theme 1: coping with a mental health difficulty. Aspects of having a mental health difficulty were highlighted by some adolescents as a source of distress. This included stigma and shame around having a mental health difficulty; however, for some receiving a diagnosis was helpful in making them feel that they were not “crazy” (Keyes et al., 2018 ). The relentlessness of having a mental health difficulty was also raised as a factor in the onset of difficult affect: “[t]hat’s what made me cry, because I thought to myself, ‘Oh my god, this is a battle now” (Keyes et al., 2018 , p.181). Indeed, living in fear of a “bad” feeling coming was noted as contributing to distress: “I find I am always scared of every day that comes because I am scared I am going to get depressed again. I am scared of that every day” (Woodgate, 2006 , p.264).

Category 2: Causal Perceptions and Their Influence on Help-seeking: Commonalities and Differences Among At-risk and Clinical Groups

Four themes were identified in this category, with accompanying subthemes. The main themes were as follows: cause and implications for self-preservation; the degree of personal and wider knowledge and understanding of cause; perceived extent of control in managing cause; and, cause having the potential to affect others. Explicit links between perceived cause and help-seeking were not required in the included studies. Rather, if there was information about help-seeking and perceived cause within the same sample, this was considered to be an association. Each main theme is relevant to both groups except cause having the potential to affect others, which applied only to the ARG. The remaining three themes are shared across the ARG and CG; however, there is divergence in the accompanying subthemes, which can be observed in Figs.  3 and 4 . It is important to note that while the reporting of themes varies in length, this does not signify importance, but rather the fact that some are more complex and need more extensive explanation; therefore, the themes are only presented by group, in contrast to synthesis 1.

Thematic map for the ways in which perceived cause(s) may influence help-seeking, at-risk group

Thematic map for the ways in which perceived cause(s) may influence help-seeking, clinical group

At-risk group theme 1: cause and implications for self-preservation . The possible reactions and consequences of seeking help for the cause of their emotional difficulties may influence the ways in which young people seek help, or indeed if they seek help at all. For instance, adolescents may be hesitant to reveal the source out of fear that the cause may lead to bullying and ridicule (Porteous et al., 2019 ; Tinnfa¨lt et al., 2011 ), or concern that those they share with may betray their trust (King et al., 2014 ). Some may be hesitant to seek help due to fears that they may not be believed (Campbell et al., 2015 ; Tinnfa¨lt et al., 2011 ), or feel pressure to report their circumstances to make the cause more believable to others: “I hated how much pressure I was under to feel like I needed to prove to everyone that I wasn’t lying, so like I went and told” (Campbell et al., 2015 , p. 835). There may also be concern that adults will be too quick to report disclosures to the authorities, which could result in negative consequences, such as being taken from their homes or upsetting their parents, which may prevent the disclosure of home-related difficulties (Tinnfa¨lt et al., 2011 ).

Similarly, concerns regarding perceived and possible judgment from others may affect how able young people feel to get help for their circumstances. As an example, adolescents with a sibling with cancer indicated that they would endure their experience in silence, which ranged from just not wanting to talk about it, due to the personal nature of the topic, to a way to manage impressions (Porteous et al., 2019 ); silence may also be used as a form of protection from bullies who might use the cause of their distress against them (Porteous et al., 2019 ; Tinnfa¨lt et al., 2011 ). However, some young people view school as a kind of respite from their problems: “[b]ecause sometimes I don’t want other people to know […] School is my break” (Grove et al., 2016 , p.3062). Or may avoid discussing cause as a form of self-protection: “I guess my own fears, death really … stops me from talking about it” (Phillips & Lewis, 2015 , p.855). Young people may eventually share their concerns with an adult, but may find it difficult to initiate the conversation, especially if they feel it is difficult for the adult to discuss (Phillips & Lewis, 2015 ; Porteous et al., 2019 ; Tinnfa¨lt et al., 2011 ).

At-risk group theme 2 : the degree of personal and wider knowledge and understanding of cause. The value of shared experience and understanding of cause was identified as a factor in seeking support, whereas ignorance regarding cause appeared to be problematic. Young people may feel more comfortable reaching out for help and sharing their experiences with someone they feel has personal experience of the cause. In some instances, adolescents perceive their circumstances to be poorly understood by those without personal experience. They may also find themselves having to manage the ways in which they share their difficulties to avoid making others feel uncomfortable: “if panic arises you back off” (Tinnfa¨lt et al., 2011 , p. 141). These kinds of reactions can lead to social isolation and avoidance of sharing difficulties to prevent the discomfort of others (Porteous et al., 2019 ). While shared experience of cause may be of value to the help-seeking process, some adolescents feel comfortable sharing with those without direct experience, provided they react in an understanding way: “I felt good [for sharing her placement in care with a friend], and my friends understood” (Magalhães et al., 2018 , p.1810). In order to share their difficulties, young people need to know that their problems will be taken seriously (Tinnfa¨lt et al., 2011 ). Nonetheless, a lack of broader understanding of the issue may result in those they seek help from dismissing their problems as typical, possibly leading to disengagement with support (McAndrew & Warne, 2014 ).

Knowledge surrounding the cause of emotional distress might facilitate understanding and, therefore, may enable young people to feel more comfortable seeking help. Adolescents appear to recognise the benefits of extending knowledge relating to cause and would value information being made available more broadly (Grove et al., 2016 ). An increase in knowledge may even facilitate coping strategies: “I can cope better with help when I know what it is and how her illness works” (Grove et al., 2016 , p. 3061). Indeed, some may notice a lack of resources, and indicate that this is problematic: “[t]here are posters all around school (for smoking), but then there’s nothing for counselling or anything like that” (McAndrew & Warne, 2014 , p.575).

(Un)met expectations of support appear to contribute to distress. Adolescents indicate that having the opportunity to reflect on and discuss how they feel may decrease their embarrassment and encourage them to talk more openly, which may lead them to be able to resolve their own problems (Daniunaite et al., 2012 ). However, depending on the circumstances, some adolescents might attempt to communicate the cause of their distress in less obvious ways, and expect a teacher to realise that there is a problem (Tinnfa¨lt et al., 2011 ). Young people indicate that having individuals take an interest in them and ask questions was helpful for sharing, but not in a way that would overburden them (Phillips & Lewis, 2015 ; Porteous et al., 2019 ; Tinnfa¨lt et al., 2011 ). Being able to recognise the need for help personally in relation to cause may act as a foundation to help seeking; however, having people close to you confirm the need for help may play a factor in propelling towards change (Campbell et al., 2015 ; Daniunaite et al., 2012 ), but only if it is recognized by the young person first (Daniunaite et al., 2012 ).

In some instances, expectations of support may not be met, or adolescents may not feel that their difficulties are worthy of help: “I don’t really know why I keep my emotions to myself cos, I probably like, I know there must be people out there that’s worse off than me” (King et al., 2014 , p.15). Young people may also feel that their teachers do not recognise their issues or feel that teachers know there is a problem but do not try to help (Tinnfa¨lt et al., 2011 , p.143). Further, adolescents may feel the kind of support available is not suited to addressing the cause, for instance, not thinking of a GP as someone you can talk to about self-harming (McAndrew & Warne, 2014 , p.574).

At-risk group theme 3: perceived extent of control in managing cause . Some young people expressed a desire to be involved in overcoming the factors influencing their difficult emotions. In some of these instances, it appears that adolescents who believe the cause of their emotional distress can be self-treated may avoid seeking help, opting instead for alternative approaches, e.g., attempting to treat body related anxiety by limiting food intake, excessive exercising, and using diet pills and laxatives to lose weight (Sabiston et al., 2007 ). Some may feel a sense of responsibility to take control over contributing factors, this might include recognising the issues and putting behaviors in place to address them rather than seeking help (Daniunaite et al., 2012 ). However, adolescents who do consider exploring options for help may perform a risk assessment on adults before disclosing, perhaps to maximise the extent they can remained involved (Tinnfa ̈lt et al., 2011 ). On the other hand, adolescents may feel they have no choice but to disclose, especially if they feel the cause has to be reported to the authorities and to do so will have to tell their parents (Campbell et al., 2015 ). Thus, the extent to which perceived cause for emotional distress might influence help seeking may depend on how much control young people feel they have in overcoming the cause.

The degree to which young people feel they can control their reactions to causal factors may also influence help seeking. For instance, young people appear to explore a number of strategies to help mitigate against the cause of emotional distress. Alternative coping strategies to manage how they react might include thinking positively and trying to expect the best outcome, thinking that others have worse problems than they do, as well as crying and angry outbursts (Porteous et al., 2019 ). Exercise and recreational activities (Aymer, 2008 ; Porteous et al., 2019 ) as well as self-harming as a way to manage/relieve stress and to feel pain elsewhere (Tinnfa ̈lt et al., 2011 ; McAndrew & Warne, 2014 ). Strategies may be recommended by peers, including self-harming to relieve stress (McAndrew & Warne, 2014 ). Some young people indicate they have available support systems around them but prefer self-management, and recognize that everyone has their own way of dealing with things (King et al., 2014 ). However, some young people may not want others to know about their self-management strategies, specifically self-harming due to associated shame; thus, some coping strategies can become a source of distress and shame surrounding this may delay help-seeking (Tinnfa ̈lt et al., 2011 ).

At-risk group theme 4: Cause having the potential to affect others. Adolescents may be concerned with protecting others and to do so might conceal the contributing factors of their distress and avoid engaging with support. In this way, perceived cause of emotional distress may influence help-seeking if the nature of the cause has the potential to bring distress to loved ones. For instance, not telling a teacher about having an alcoholic parent to avoid affecting their parents (Tinnfa ̈lt et al., 2011 ), or not wanting to talk to a parent about their mental illness: “I don’t want to hurt mum’s feelings or something like that if I ask too personal questions” (Grove et al., 2016 . p.3062). Other instances include, not wanting to share emotional pain to avoid burdening or taking away from the difficulties of others (Porteous et al., 2019 ). Conversely, some young people indicated they would seek help to prevent others from suffering in the way they have, e.g. from a sexual assault; however, the reporting of serious incident such as sexual assault may be avoided if family have previously been in trouble with the police (Campbell et al., 2015 ). Indeed, some young people recognise they could use loved ones as a source of emotional support, but also see them as needing to be protected, which may result in young people going out of their way not to share their difficulties with their loved ones, even if it means involving themselves in criminal activity (King et al., 2014 ); however, this desire to protect love ones can also work as a deterrent from further crimes: “I don’t ever wanna get myself in that trouble again…I never wanna have to upset my parents or family members again” (King et al., 2014 , p.14), but this is seeking to adjust behavior rather than exploring options for help (King et al., 2014 ).

Clinical group theme 1: cause and implications for self-preservation . Perceptions of the acceptability of the cause and the support offered to manage it may factor into decisions to look for help. For instance, shame induced secrecy surrounding having a mental health “disorder” may lead to delays in seeking help, but receiving a diagnosis may provide relief: “I felt crazy at the time […] But for my GP to say, ‘right, it’s OCD. .’ He’s actually saying something” (Keyes et al., 2018 , p.181). Perceived acceptance appears to help young people share their difficulties with professionals; indeed, feeling validated and listened to may help young people feel worthy of receiving care and support from others (Wilmots et al., 2020 ). However, for some, having to conceal their identity because they do not feel that they will be accepted can cause stress (Diamond et al., 2011 , p.138).

Adolescents indicate that they want to be seen as individuals and not just for their difficulties, and concerns regarding how their difficulties may inadvertently define them may cause delays in help-seeking or treatment refusal. For instance, not wanting to accept help to avoid perceived associations: “I don’t want anyone say [A] is crazy. And I was very crazy actually because I try twice kill myself, I try hung myself. I cut myself, I really was crazy” (Majumder et al., 2015 , p.131). Young people indicate that they do not want to be treated as a diagnosis, they want health care professionals to get to know them and not just think of them or judge them in relation to their mental illness (Woodgate, 2006 P.267). A lack of perceived understanding and respect may lead to young people wanting to stop their treatment (Woodgate, 2006 ). The notion of identity in relation to cause impacting help-seeking may also be seen among adolescents who self-harm. For example, young people who self-harm may want to be seen as “genuine” self-harmers and, thus, self-harm in private, not sharing their difficulties because they value secrecy as part of their identity as a “genuine” self-harmer: “I didn’t want anyone to know about it, so that makes me angry, especially when I know some people that do do it for attention” (Crouch & Wright, 2004 , p.194).

Clinical group theme 2 : t he degree of personal and wider knowledge and understanding of cause . A lack of personal and wider understanding of cause may lead to normalising and denial, which can subsequently cause delays in seeking support for mental health difficulties and prevent young people from accepting that they need help: “I don’t have any (.)uh (.) I mean I’m not um (.) mental problem (.) I go (.) I saw the bad dream I didn’t sleep then sometimes” (Majumder et al., 2015 , p.131). Whilst a lack of personal understanding of mental health difficulties can prevent adolescents from recognising there is a problem, a wider lack of understanding may also cause delays in help-seeking, including parents viewing their child’s mental health difficulties as childhood quirks (Keyes et al., 2018 ). Adolescents might sense that their difficulties are poorly understood by society, and in a school setting this may manifest into not receiving appropriate support: “No one helped me in school. The school was really bad” (Keyes et al., 2018 , p.180). This lack of wider understanding may mean that when they do share their experience, young people feel misunderstood or dismissed (Diamond et al., 2011 ).

Like the at-risk group, the value of shared experience and feeling understood in relation to the cause of emotional distress may act as a factor in adolescents help-seeking behaviors. A lack of wider understanding of mental illness may lead to young people feeling lonely and misunderstood, which can result in a preference to share their experiences with people who have dealt with similar issues (Keyes et al., 2018 ). Some might feel that no one can truly understand them unless they have been through it: “I don’t think anyone understands except self-harmers themselves” (Crouch & Wright, 2004 p. 193). Yet, some young people may prefer and be open to speaking to a therapist who is sensitive to their difficulties (Diamond et al., 2011 ). Adolescents also appear to value wider understanding: “I think what would help is for people to realize that it is not just feeling down, it is actually an illness […] I think the most helpful part is knowing that someone out there understands” (Woodgate, 2006 , p.266).

Clinical group theme 3 : perceived extent of control in managing cause. Like the at-risk group, some adolescents indicated that they felt reactions to cause could be managed, sometimes with appropriate help and support. Staying positive can be a way to manage reactions, in some instances this was achieved by avoiding anything and anyone who might “bring them down” (Woodgate, 2006 ), as well as avoiding pessimism, jumping to conclusions, overanalysing (Wilmots et al., 2020 ), and using self-harm as a way to relieve distress (Crouch & Wright, 2004 ). Some young people, however, did not want others to know they were self-harming and would purposefully hide the signs, this appeared to be associated with their identity as an “authentic” self-harmer and not wanting to be branded as an “attention seeker” (Crouch & Wright, 2004 ). For some, getting to know the signs that indicate possible set-back were seen as important in managing distress ( Woodgate 2006 ).

The degree of involvement in recovery was also noted as a possible factor in the extent to which causal perceptions impact help seeking. Some adolescents acknowledged that they struggle to understand why they feel the way they do, and in some instances, feel that they need and would value help from a therapist to recognise what was causing their difficulties; however, some young people may find it painful to explore the reasons for the onset of depression and prefer to look to the future, and may value a therapeutic approach that allows them to do so (Wilmots et al., 2020 ). Young people noted that talking about the past can cause emotional distress, and, therefore, may be opposed to help-seeking to avoid further distress (Majumder et al., 2015 ). Some adolescents were able to recognise that they had to seek help themselves or nothing would get better, this kind of self-awareness was paired with the acknowledgment that they could not be coerced into treatment (Woodgate, 2006 ).

Emotional distress is prevalent during adolescence; if not managed effectively, it can lead to further difficulties. Help-seeking is valuable for preventing the manifestation of mental illness as well as managing existing difficulties. While causal perceptions of difficulties have been found to influence how adults engage with and seek help, perceived cause for emotional distress in the context of help-seeking is not well explored among adolescent groups. To guide intervention and prevention efforts, as well as foster a better understanding of how to support adolescents experiencing emotional distress, a comprehensive review of existing literature focusing on at-risk and clinical adolescent groups was necessary. Therefore, this study aimed to conduct a systematic review and qualitative thematic synthesis to determine what adolescents perceive to be the cause of their emotional distress; the ways in which perceived cause might influence help-seeking tendencies; and the possible differences in how at-risk and clinical groups of adolescents engage with help-seeking in the context of perceived cause for emotional distress. The findings indicate that causal beliefs influence help-seeking in clinical and at-risk groups; they further suggest that there are differences in perceptions of cause and related help-seeking between these groups.

Six main themes related to perceived cause were found. Three of those themes were shared between the clinical and at-risk groups: (1) challenging social factors and perceived difference, (2) problematic family dynamics, and (3) cause is complex and multifaceted. Three of the themes were not shared: (4) unfairness and perceived lack of agency and (5) concern for self and others were only found for the at-risk group, whereas (6) coping with a mental health difficulty was found to be exclusive to the clinical group. While it makes sense that coping with a mental health difficulty would be causal for the clinical group only, it is perhaps less clear why unfairness and perceived lack of agency was only a theme in the at-risk group, despite perceived extent of control in managing cause influencing help seeking for both. This may be attributable to a lack of evidence in the area or the fact that there were more studies for the at-risk group eligible for inclusion in this review. Nonetheless, differences such as these highlight the need to look at at-risk groups as well as clinical groups when exploring perception of cause for difficulties to identify how to better support young people experiencing emotional distress.

In relation to the ways in which causal attributions for emotional difficulties might impact help-seeking, four main themes were found, including: (1) cause and implications for self-preservation; (2) the degree of personal and wider knowledge and understanding of cause; (3) perceived extent of control in managing cause; and (4) cause having the potential to affect others, which was only found to be a theme within the at-risk group. While both groups shared three main themes, distinct sub-themes were evident, reflecting again that while there are clear similarities, there are also differences that may have implications for help seeking – this will be discussed further in the implications section. For instance, for cause and implications for self-preservation, it was found that the possible reactions and consequences of sharing the cause with others, as well as concern about judgements they might receive, influenced help-seeking behavior for the at-risk group. However, for the clinical group, maintaining an identity within their diagnosis was important, as too was the degree of acceptance and support they received. This synthesis, therefore, highlights that perception of cause for difficulties is important in the context of help-seeking during adolescence and calls for further research to explore this in greater depth. This is work that the authors of the present review have begun exploring with adolescents considered at-risk of developing a mental health difficulty.

Review in the Context of Ongoing Research

In situating the present findings within ongoing research, it is important to highlight commonalities between the present study and already published empirical work that presents a typology of perceived cause for emotional distress among at-risk adolescents (O’Neill et al., 2021 ). Most notably, concerns for self and others was also found to be a category for perceived cause of emotional distress in the typology developed from qualitative interviews with young people (O’Neill et al., 2021 ). Given that 60% of studies in the at-risk group focused on young people’s potentially difficult experiences in relation to health and safety (including exposure to domestic violence; victims of sexual assault; and family illness such as alcoholism, cancer, and mental illness), it is perhaps unsurprising to see heightened levels of concern coming through. There are also commonalities in unfairness and perceived lack of agency as control and unfairness were noted as types of cause of emotional distress in O’Neill and colleagues’ ( 2021 ) study. Again, this is perhaps unsurprising given that adolescence is known as a time for establishing independence (Schwartz et al., 2018 ). While there was overlap in the period of analysis for the present study and the typology, steps were taken to ensure the findings were fully grounded in the data. For example, while the analysis was led by the first author in both instances, the level of involvement from the co-authors was staggered across the studies, enabling a more neutral perspective when discussing the findings; the second author in the present study was not involved in the generation of types in the typology, but was involved in data analysis and theme generation in the present study. To further ensure the credibility and trustworthiness of the findings, illustrative quotes were provided and the process of data analysis was outlined (Nowell et al., 2017 ).

Review in Relation to Existing Literature

This review contributes to an understanding of causal attributions and help seeking by being the first systematic qualitative review to be conducted in this area. The findings align with those of numerous studies in adult clinical groups that demonstrate how causal perceptions can have implications for treatment engagement (e.g., Houle et al., 2013 ; Nieuwsma & Pepper, 2010 ; Goldstein & Rosselli, 2003 ; Stolzenburg et al., 2019 ). However, this review adds that this process can be observed in adolescence in the context of perceived cause for emotional distress and subsequent help-seeking. The present review also highlights a likely gap in research in relation to at-risk adult groups. While there is evidence of perceived cause influencing treatment preference in clinical groups, there is limited information available to support the understanding of how at-risk adults engage with help-seeking in the context of causal attributions. This is important as while there were numerous similarities among these groups in the present study, there were also key differences that will likely have implications for intervention and clinical practice.

Similarly, extant literature demonstrates that adults in clinical groups express a desire to be involved in treatment plans in a health-care setting, and that this involvement is important for their participation (Thomas et al., 2021 ). While there is a paucity of research investigating young people’s involvement in shared decision making (Thomas et al., 2021 ), what is available appears to focus on children and young people from clinical groups (e.g. Hayes et al., 2021 ). This focus is important; however, this review demonstrates that at-risk groups may also desire control over the management of emotional distress and the direction their help-seeking takes. The findings echo those of Martorell-Poveda and colleagues ( 2015 ), who found that young people aged 17–21 wanted to maintain autonomy and control when seeking help for their emotional distress; they also found that young people experiencing emotional distress may view their distress as their own responsibility to resolve. The sample in the research by Martorell-Poveda and colleagues ( 2015 ) featured participants with either a clinical diagnosis or self-reported emotional distress, indicating a merge of clinical and at-risk groups. This review emphasizes the importance of giving these groups specific research attention to not only support young people with mental health difficulties, but to also improve prevention strategies through adaptive help-seeking. Indeed, while the benefits of active involvement in and development of one’s own healthcare is more widely recognized (Ahmad et al., 2014 ), this is perhaps not yet well explored in relation to interventions for at-risk groups.

Implications

Causes of emotional distress are complex, and this review demonstrates that young people from at-risk and clinical groups are aware of this complexity. It also demonstrates that both groups reflect on and recognize cause; thus, it is imperative to explore young people’s beliefs relating to contributory factors and focus on tackling them rather than dismissing their experiences as “typical”. This review demonstrates key links with help-seeking and mental health-literacy and calls for the introduction of good quality mental health education, particularly during these years when mental health is vulnerable (Rapee et al., 2019 ). It is likely this will help all young people, particularly as this study indicates that personal and wider knowledge and understanding is key to supporting help-seeking. For instance, for the at-risk group, the degree of personal and wider understanding about the cause of their difficulties (including parental mental illness) was important for help-seeking. Whereas for the clinical group, a lack of wider mental health knowledge was identified as leading to normalising and denial of clinically significant mental health difficulties.

This review also illustrates that young people want to be treated as individuals and that, for the clinical group in particular, being mindful of identity development and not just treating a diagnosis is important to support continued help-seeking. Indeed, one of the key findings from this review is adolescents’ desire to be involved in and have autonomy over the direction their help-seeking takes, and that these factors may influence help-seeking behavior. For the clinical group, the degree of involvement in their own recovery was important for engaging with support. Including young people in treatment and care decisions in health-care settings has been called for (World Health Organization, 2012 ), and shared decision making is often promoted as a beneficial approach across a variety of health-care settings (Cheng et al., 2017 ). This review supports the benefits of this approach with adolescents; however, shared decision making is typically explored in health-care settings. This review highlights that adolescents considered to be at-risk of developing mental health difficulties may also do a risk assessment to see how much control they can maintain if they seek help. This suggests that educational professionals should also engage in shared decision making with young people when they disclose their difficulties.

This review, then, further highlights the need to take young people’s wishes into account, and to involve them in decision making around their support, not just in clinical health care settings, but also in their wider contexts. This may be especially important as cause and control was identified as relating to the extent to which contributory factors may influence help seeking for both groups. It is clear from this review that young people want to be involved in overcoming and dealing with what they believe to be creating their distress or involved in decisions regarding treatment for those who have been diagnosed with a mental health disorder. Ultimately, amplifying their voice and acting upon their views may be helpful in promoting help-seeking and ameliorating perceived cause.

Limitations

While this study aimed to explore help seeking in the context of perceived cause for emotional distress, as outlined earlier this was not the explicit aim of the included studies. It is possible that data collected with this explicit aim would have yielded richer findings in relation to these constructs than the data analysed here. However, qualitative synthesis does not aim to simply summarise the findings from the included literature, rather it seeks to reconceptualize findings and create insights beyond the reporting of the individual studies (Campbell et al., 2003 ). Given that qualitative studies are not well indexed (Mohammed et al., 2016 ), there is also a possibility that studies relevant to the review were missed. However, to maximise relevant inclusion, a broad range of search terms were used, reference list of relevant studies were checked, and a number of search engines were used, including Scopus and Google Scholar.

Despite potential implications for intervention and prevention efforts in relation to mental health difficulties, adolescent help-seeking in the context of perceived cause for emotional distress has so far been under explored. A systematic review of qualitative and mixed-methods research was conducted to discover what extent literature could tell us about the extent to which perceived cause for emotional distress plays a role in help-seeking behavior during adolescence. This research demonstrates that understanding perceptions of cause for emotional distress is important for supporting adolescents, particularly as the findings indicate that causal beliefs are likely to influence help-seeking in both clinical and at-risk groups. This influence was observed to manifest through concerns for self-preservation, knowledge and understanding of cause, and perceived extent of control in managing cause for both groups – concerns regarding cause affecting others was only observed in the at-risk group. This supports the need for further research to enhance understanding of the extent to which help-seeking is guided by causal beliefs among adolescents. These findings call for future primary research that explicitly sets out to explore these potential connections in more depth. This review also found that, while there were elements of overlap, there were notable differences in help-seeking in the context of perceived cause for emotional distress among at-risk and clinical adolescent groups included in this review. Conducting further research in this area with at-risk groups and clinical groups respectively may provide further insight into the areas of divergence observed.

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O‘Neill, A., Humphrey, N. & Stapley, E. A Systematic Review of Qualitative Research Focusing on Emotional Distress Among Adolescents: Perceived Cause and Help-Seeking. Adolescent Res Rev 8 , 387–402 (2023). https://doi.org/10.1007/s40894-022-00203-7

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• Volume 14, Issue 4
• Qualitative interview study of rheumatology patients’ experiences of COVID-19 shielding to explore the physical and psychological impact and identify associated support needs
• Article Text
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• http://orcid.org/0000-0001-8145-2305 Christine A Silverthorne 1 , 2 ,
• Bethan Jones 1 , 2 ,
• Mel Brooke 3 ,
• http://orcid.org/0000-0002-4756-663X Laura C Coates 4 ,
• Jen Orme 1 , 2 ,
• Joanna C Robson 1 , 2 ,
• William Tillett 3 , 5 ,
• http://orcid.org/0000-0002-6674-8607 Emma Dures 1 , 2
• 1 Academic Rheumatology, Bristol Royal Infirmary , Bristol , UK
• 2 University of the West of England , Bristol , UK
• 3 Royal United Hospitals , Bath , UK
• 4 Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences , University of Oxford , Oxford , UK
• 5 University of Bath , Bath , UK
• Correspondence to Christine A Silverthorne; chris.silverthorne{at}uwe.ac.uk

Objective Many clinically extremely vulnerable rheumatology patients have only recently ceased shielding from COVID-19, while some continue to minimise in-person contact. The objective of this study was to understand the impact of shielding and associated support needs in patients with rheumatic conditions and to understand how rheumatology teams can meet these needs both currently and in future pandemics.

Design, participants and setting The study was conducted in the Southwest of England using a case-study design. The participants were 15 patients with rheumatic conditions who were advised to shield and/or chose to shield at any time during the COVID-19 pandemic.

Methods Qualitative data collected via telephone and online semi-structured interviews and analysed using reflexive thematic analysis.

Results Fifteen interviews were conducted. Three main themes represent the data:

‘Just shove them over there in the corner’ captures changes in patients’ self-perception. They felt different to most other people, vulnerable and left behind. The initial sense of shock was followed by a sense of loss as changes became long term.

‘A long and lonely road’ captures patients’ psychological isolation due to a perceived lack of understanding and support. This included having to prove their health status and justify their shielding behaviours, which impacted their relationships. At times, they felt abandoned by their healthcare providers.

‘You can’t just flip a switch’ captures the difficulty of getting back to pre-pandemic normal after shielding. Patients did not recognise themselves physically and mentally. They wanted to collaborate with health professionals and identified the need for specific guidance to support their recovery.

Conclusion Patients are dealing with lasting physical and mental effects from shielding and consequences of delayed healthcare. Health professionals need time and resources to ask about patients’ well-being, identify their health needs and refer/signpost to appropriate sources of support.

• QUALITATIVE RESEARCH
• Patient Participation

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All data relevant to the study are included in the article or uploaded as supplementary information.

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https://doi.org/10.1136/bmjopen-2023-075871

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STRENGTHS AND LIMITATIONS OF THIS STUDY

The study captured the views of participants as they had recently stopped shielding or were ceasing to shield and so gained an insight into their thoughts and behaviours at this particular point in time.

The study explored participants’ support needs with regards to both their physical and mental health.

Data were collected and analysed by two insider researchers, which may have allowed for a greater rapport with participants, resulting in richer, more detailed data due to their shared experiences, knowledge and understanding.

The research findings were informed by discussions with coauthors with multidisciplinary backgrounds, including medicine, psychology and lived experience of shielding.

Participants were from a limited geographical area (Southwest of England).

Introduction

During the COVID-19 pandemic, approximately 4 million people in the UK were classified as clinically extremely vulnerable (CEV) and advised to ‘shield’. 1 To be considered as CEV, individuals need to have a weakened immune system due to a particular health condition or taking medication that suppresses their immune system and who therefore may have a reduced ability to fight infections and other diseases, including COVID-19. This therefore included patients with rheumatic conditions, at risk of severe harm from the virus due to being immunosuppressed. Shielding required people to strictly isolate for long periods, with shielding advice remaining in place throughout 2020. At various times during 2020 and 2021, people shielding were advised that they should not leave their homes, and to physically distance themselves from others in their household, eat separately and sleep and wash in separate spaces where possible. Additionally, many patients with rheumatic conditions who were not formally identified as CEV took shielding precautions to protect themselves during the pandemic. 2

Existing research has demonstrated that many patients with rheumatic conditions found the process of shielding had a negative impact on their well-being and increased their levels of anxiety and depression, reduced their physical activity and fitness levels, and led to feelings of isolation. 3 4 Research has also indicated that the psychological, social and practical impact of COVID-19 is expected to continue for several years. 5 6 For CEV patients, shielding meant that many of them experienced a continued state of distress on top of the challenges they already faced by living with a health condition. Indeed, CEV patients were found to be significantly more likely to reach the threshold for health anxiety or generalised anxiety than those who were not classed as CEV. 7 Similarly, patients with pre-existing physical health conditions were found to have a larger increase in distress during the first wave of COVID-19 as compared with the general population. 8

In addition, during the height of the pandemic, CEV patients also had to cope with disruptions to the provision of their rheumatology care, partly due to the redeployment of rheumatology health professionals to the COVID-19 front line 9 as well as rheumatology health professional own sickness. 10 This disruption included cancellations and delays to appointments, difficulty accessing medication and a reduction in the monitoring of symptoms, all of which increased the risk of long-term damage, for example, as a consequence of not quickly treating disease flares. 11 Further, high levels of stress and negative changes to diet or physical activity can exacerbate some long-term health conditions. 12

The aim of the current study is to understand the experience and impact of shielding in patients with rheumatic conditions and to explore their support needs. Also, it aims to understand how rheumatology teams can meet these needs both during and after times of isolation, for example, when patients are experiencing health-related setbacks that can occur with rheumatic conditions or should any future pandemics occur.

Study design

A qualitative design was used with data collected using one-to-one, semi-structured, telephone or online interviews. Semi-structured interviews can generate insights into the thoughts and feelings of participants. 13 In the semi-structured format, participants are asked the same core questions, but there is flexibility to probe more deeply and develop new lines of enquiry based on their responses. The core questions in the interviews were based on the study objectives. The interview schedule was designed by the research team (comprising psychology researchers, rheumatology consultants, insider researchers and a patient research partner with lived experience of shielding) and in collaboration with regional rheumatology patient groups. See box 1 for interview schedule.

Interview schedule

Section 1: experience and impact of shielding

Shielding behaviours and practices

Physical and psychological effects

Impact on healthcare and access to healthcare services

Section 2: how shielding experience informed behaviours as restrictions were lifted

Returning to pre-pandemic activities

Thoughts and feelings about what felt safe to do/not do

Section 3: shielding support

Support received during shielding and current support needs

Lessons learnt and support for patients in the future

Sampling and recruitment

This study was conducted in the Southwest of England. Participants were patients with rheumatic conditions who were advised to shield and/or chose to shield at any time during the COVID-19 pandemic. Potential participants were informed about the research and invited to take part via a flyer to the regional branches of relevant rheumatology patient groups including the National Rheumatoid Arthritis Society (NRAS) and the National Axial Spondyloarthritis Society. In addition, social media posts were sent to social media networks related to CEV people to advertise the study. Potential participants who were interested in taking part contacted the lead author for further information and to arrange a telephone or online interview. The concept of ‘information power’ 14 was used to inform the sample size. This is based on the idea that the more information the sample holds relevant to the research, the lower the number of participants needed. In this study, the researchers felt that the study objectives were met after collecting data from 15 participants.

Data collection

Interviews were conducted over the telephone or online via video call. Before the start of the interviews, the participants signed a consent form and provided demographic data (rheumatic condition, disease duration, disease medication, gender, age and ethnicity). The lead author and one other member of the research team conducted the interviews. Both interviewers had shielded during the COVID-19 pandemic and disclosed this to participants. At the time the interviews were conducted, all official government guidance to shield had ended. Interviews were audio recorded, transcribed by a professional transcription service, checked for accuracy against the original audio files and anonymised by changing the names of people and places.

Reflexive thematic analysis was used to analyse the data. 15 The aim of this type of analysis is to identify patterns in the data to describe participants’ views and experiences. This involves becoming familiar with the data, attaching codes to the transcripts to describe the content, generating initial themes, reviewing and developing themes and then refining, defining and naming the themes. It is an iterative process that involves moving between the entire data set and the coded extracts of data. This approach was taken as it is appropriate for research that is not based on pre-existing theory about the phenomena being studied. It was also suitable for highlighting both similarities and differences in the experiences and views of the participants.

The lead author read all 15 transcripts and coded sections of text that related to the research question. Related clusters of coded text formed subthemes, which were grouped together to form a smaller number of higher order themes that described broad elements in the dataset. Two anonymised transcripts were both reviewed independently by two other members of the study team and then discussed to ensure that the findings were informed by multiple viewpoints. 16 The final analysis was based on the integrated interpretations of four team members, including the two researchers who had collected the data and two other team members. The themes and subthemes were also discussed with other team members, including the patient research partner who felt that they reflected their own experience of shielding as well as those expressed in their local patient networks.

Patient and public involvement

The study team, including a patient partner, collaborated with regional rheumatology patient groups in the Southwest of England to develop the research question and study design and to acquire funding. Regional patient groups supported study recruitment by advertising the study to their members. A lay summary of the study findings has been distributed to rheumatology patient groups across the UK via their social media platforms and electronic newsletters, including on the NRAS website (published on 9 March 2023).

A total of 15 interviews were conducted with patients with rheumatic conditions living in the Southwest of England with experience of shielding during the COVID-19 pandemic. Rheumatic conditions included rheumatoid arthritis, psoriatic arthritis, systemic lupus erythematosus, ankylosing spondylitis, axial spondylopathy, osteoarthritis, undifferentiated connective tissue disease, fibromyalgia, Antineutrophil cytoplasmic antibody (ANCA) vasculitis and Sjogren’s syndrome. Treatments included biologic medicines (adalimumab, upadacitinib, abatacept, ixekizumab and rituximab) and non-biologic medicines (methotrexate, hydroxychloroquine, leflunomide, sulfasalazine and mycophenolate) as well as prednisolone, amitriptyline and paracetamol. Thirteen of the participants were taking immunosuppressant medicine and so met the criteria for being CEV, while two participants did not strictly meet the criteria for being CEV but still chose to shield.

Interviews ranged from 31 to 81 min in length (median: 60 min). Online supplemental table S1 presents participant demographics. Three main themes with subthemes capture the patterns across the data ( table 1 ). The themes and subthemes have been labelled using participants’ own words and are evidenced using data extracts. Additional data extracts are provided in online supplemental tables S2-S4 .

Supplemental material

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Themes and subthemes

Theme: ‘Just shove them over there in the corner’—feeling different to others and left behind

The participants described the effects that being labelled as ‘vulnerable’ had on their lives and how it affected their thoughts, feelings and behaviours. Participants talked about how this label, combined with the experience of shielding, had led in some cases to a sense of exclusion and long-term changes in their lives.

Subtheme: ‘Fast tracked to the more critical’—feelings of vulnerability and a change in self-perception

Participants talked about how being identified as CEV had made them feel vulnerable, often for the first time, and for some this experience had changed how they saw themselves. Many were worried about a COVID-19 infection leaving them with further health complications and some were afraid of dying. Participants felt acutely aware of being different to others who were not classed as CEV and deemed at high risk of adverse outcomes from COVID-19, including feeling less powerful and less important.

‘I suppose what it did was exaggerated my condition…suddenly, I wasn’t just a person with psoriatic arthritis, I was an elderly extremely vulnerable person which is not what I saw myself as before Covid…I suppose it changed my perception of myself as well’ (Interview 14) ‘…the feeling that I was being infantilised and my power, what little power I had as someone with lupus, anyway, was sort of taken away’ (Interview 7)

Subtheme: ‘A real sense of loss’—living with long-term changes

Many participants had still not returned to pre-pandemic activities, including exercise, social activities and attending church. Many expressed sadness and resentment at how others had been able to return to life as normal while they were still living with changes and loss. For some, there were real fears about still being unprotected and not having made sufficient antibodies from the vaccines. Others felt they had lost the ability to mix in social situations or had become accustomed to staying in the home and noticed that they went out far less than they had before.

‘…the impact for me, has been a real sense of loss…and I think it’s ongoing, living with loss. I feel my life has changed, and its definite sadness that comes with that because things just do feel harder’ (Interview 4) ‘…for me, the going into shielding was not such a big step from my normal life but the coming out of shielding has felt much, much harder and the more that life gets back to so-called normal for other people, the more I feel my abnormality’ (Interview 7)

Theme: ‘It’s a long and lonely road’—psychological isolation heightened by a lack of understanding and empathy

Participants talked about how they wished others had shown more understanding and empathy for their situation. They described some of the challenges of living with an often invisible health condition and feeling pressured to tell others about their health status to justify why they were shielding. They also talked about the support they had received from their rheumatology team with some finding greater help than others.

Subtheme: ‘ You have to prove yourself all the time’—having to justify shielding behaviours

Participants often felt they needed to prove themselves to others and justify why they needed to shield. Some felt uncomfortable at disclosing and discussing their rheumatic condition with others, sometimes for the first time. People challenging the participants’ shielding decisions and behaviour strained their relationships, including those with family, friends, employers and their children’s school/nursery.

‘…it’s denying your existence, almost…it’s almost like you have to prove actually this is real, actually there is a concern for my life, and it’s almost like you’re having to prove it, and that’s…well, it’s exhausting…It’s just a battle, it feels like you have to prove yourself all the time, and that’s just exhausting’ (Interview 11) ‘There was this thing that with arthritis it’s not a life-threatening condition and then suddenly it became this really big thing that I started having to tell everyone about which felt quite uncomfortable’ (Interview 15)

Subtheme: ‘Nobody’s checking up on me’—feeling abandoned

The participants had varied experiences of the support they received from their rheumatology teams during their time shielding, with some feeling the specialist nurses offered a valuable source of help. However, others described feeling abandoned and felt they had to manage any healthcare issues for themselves.

‘I feel a little bit abandoned by my team at [hospital]… they must’ve been overloaded but I have felt a bit abandoned’ (Interview 12) ‘I would have appreciated a bit of how are you managing with it? Or how are you coping with it? Or something but there was nothing’ (Interview 11) ‘…what has become much more difficult is the nurse helpline because they’re just so busy.’ (Interview 10)

Theme: ‘You can’t just flip a switch’—the difficulty of getting back to normal after shielding

Participants described the physical and mental impact of shielding, which for many was still an ongoing concern. They talked about how they often felt quite alone in dealing with the negative effects of shielding and how they would have valued receiving more specific guidance and support from rheumatology. They also talked about the benefits of peer support.

Subtheme: ‘I didn’t recognise myself’—the struggle to stay physically and mentally well

Most of the participants had experienced a negative impact on their physical health following shielding, including loss of strength and stamina and a gain in weight. Some had made a conscious decision to continue with exercise and been able to incorporate physical activity into their daily lives while shielding. Participants described how factors such as having access to a garden or safe open space, a supportive partner, owning a dog, not being employed, and having no childcare responsibilities made continuing with exercise easier.

‘…my mobility really deteriorated, and my weight went up a lot’ (Interview 5) ‘…you can’t just flip a switch and overnight go back to where you were before and so, I did find it really difficult and to a certain extent, quite disheartening to see how much I’d lost in the time that I’d been shielding.’ (Interview 8) ‘I struggled there because I wasn’t doing them [physiotherapy exercises] with anybody, so my motivation had hit the floor’ (Interview 6)

Shielding, and ceasing to shield, had a negative impact on the mental health of many participants with some describing how they were still living with a lasting anxiety and with decreased confidence about being back out in the wider world. Participants described their need to have had someone to talk to during shielding and how they had been reluctant to talk to friends and family as they were worried about being seen differently by them, worried that they would be seen as ‘weak’ and ‘less independent.’ Several factors influenced the degree of stress experienced, including the level of support participants received from partners, family, friends and employers.

‘I didn’t want to talk to my friends about it [anxiety], because I didn’t want them to see me as that person…they’ve always seen me as that strong, independent go-getting person, and I didn’t want them to see me as being weak and pathetic’ (Interview 3) '…it’s a psychological thing, it’s the mental impact, that’s what’s gone, I mean my sense of confidence’ (Interview 2) ‘I’m somewhat losing confidence or losing familiarity with being out in the outside world and with that loss of familiarity things just are a bit less normal for me mentally’ (Interview 13)

Subtheme: ‘Work through it together’—the need for a collaborative approach to recovery

Participants expressed how they would have valued, and would still value, receiving specific guidance and support from rheumatology health professionals, including information and guidelines on areas such as diet, exercise and medication, as well as support for their mental health and being asked about how they were coping. Several participants described how they were constantly making risk assessments of what was safe or not safe to do, how stressful this was for them and how they would have valued help with this decision-making.

‘Ideally, they’d ask about your mental health, they’d ask about the whole picture not just your physical joint pains, and they’d talk to you about the impact of Covid, and how you were managing it, and help you work through it together, and not send you things out in the post and then leave you to deal with the aftereffects of that.’ (Interview 11)

Several participants talked about the benefits of being able to talk to others with a rheumatic health condition who were going through similar experiences to themselves. Some had developed an online support network, for example, through Facebook, to help them manage while shielding. However, not everyone was aware of these online support groups, and some expressed a preference for face-to-face, one-to-one or telephone support.

‘I think to have like a peer support group and then a phone line for people and also some one-to-one support would be really good’ (Interview 15)

The participants’ experiences highlighted the benefits of online treatments, for example, physiotherapy, and online classes, for example, yoga and art. This shows the value of continuing to offer flexibility between online and face-to-face sessions. Shielding also enabled some participants to take a break from some of the pre-pandemic pressure of life and they found relief from not having to do all the things they were doing alongside living with a rheumatic condition. For some, it was an opportunity to assess what was most important to them in life.

‘I know some people really struggled with not doing face to face, but I think a lot can be done over the phone, or with something like physio, can be done on Zoom’ (Interview 5) ‘it was quite nice not having all the pressures of having to do all the stuff I was doing.’ (Interview 11)

This study set out to explore the experience and impact of shielding in patients with rheumatic conditions and specifically to understand their support needs both during and after shielding. The study also aimed to identify how rheumatology teams can support patients better in future times of isolation such as health-related setbacks. The findings indicate that for many participants shielding was the first time they had seen themselves as ‘vulnerable’, which for some led to a change in self-perception. Participants said they felt different and often less important than those not shielding and talked about feeling left behind when others returned to their normal lives. Some participants described feeling abandoned by their rheumatology team and how, as a result of shielding, they were living with long-term changes to both their physical and mental health as well as to their work and social activities. Participants also described how shielding had impacted their relationships and how they had felt, and often still felt, the need to justify their shielding behaviours.

The findings are consistent with those found in another study 17 where the self-management abilities of patients with inflammatory arthritis were impacted by shielding and that for the majority of participants their physical activity levels decreased and their diet had got worse. They are also consistent with the findings from a recent systematic review 8 where participants with a pre-existing physical health condition tended to show a larger increase in mental health symptoms (depression, anxiety, well-being) than the general population during the first lockdown in March 2020, and with those from a rapid review of survey data where people with long-term health and care needs experienced a negative effect on their well-being (including increased anxiety and loneliness) during the first wave of COVID-19. 18 The findings are also similar to those of a recent qualitative study in which participants felt that being labelled as vulnerable exposed their disease status more widely than they would have liked and/or classed them as a separate entity of lesser value compared with the rest of the population. 4

Current guidance recommends that health professionals should consider psychological well-being when treating physical symptoms. 19 This study has shown how participants’ need for psychological support was amplified during shielding and yet they often received less psychological support than they had before. Participants indicated they would have valued some reassurance about their shielding behaviours as well as having a clear, supportive point of contact for their concerns about medication, disease flares and symptoms and dealing with depression and anxiety. Studies have shown the need for greater access to mental health support in rheumatology 20–24 and this has proved to be even more critical during and after times of isolation. Rheumatology professionals should be encouraged to ask about their patients’ mental well-being and should feel confident there are appropriate services or referral pathways in place when required. 25 Participants with access to nurse-led rheumatology helplines found these supportive indicating the value of expanding this source of help to all patients.

The study findings that participants often felt abandoned by their rheumatology team are of concern as research indicates that patients are more likely to adhere to treatment and to be satisfied with their care if they feel that health professionals are respectful, interested, supportive and understanding. 26 The redeployment and sickness of rheumatology health professionals during the pandemic meant that inadequate time and resources were available to give this level of support to patients. 10 Abandonment (due to a lack of clear information about levels of risk and changes to care plans) was also a major finding in a recent survey from the Rare Autoimmune Rheumatic Disease Alliance. 27 In another study, previously responsive rheumatology departments were reported to have not responded effectively (or at all) to repeated requests for medical advice and help, which was felt to have contributed to physical deterioration and a sense of abandonment. 11 Patients with rheumatic conditions can experience permanent joint damage if their disease is not optimally managed and unchecked inflammation may also affect other parts of the body, including the heart, eyes, lungs and vascular system. 28 It is important to ensure that the patient–healthcare relationship is not similarly affected by any future periods of patient isolation to mitigate the subsequent risk of deterioration in patient health. This also emphasises the need to address the mental health of the health professionals who were under immense pressure during the pandemic.

Support and understanding from family, friends and employers were mentioned by participants as an important factor in helping them to cope with both shielding and ceasing to shield. This is consistent with other research findings that social support was an influencing factor in the effect of shielding on mental health. 23 The current study also highlighted the specific power of peer support and the benefits of talking to others in a similar situation. Some participants had found online support groups helpful, but others were not aware of them or stated a preference for meeting others face to face, indicating the need for flexibility in support offered. Checking patients’ support needs and sign posting and raising awareness of relevant rheumatology support groups and, where possible, introducing, or re-establishing face-to-face support groups should be a priority for patient care.

Several participants had perceived a lack of respect and empathy from others, including friends, employers, schools and the general public indicating the need for greater awareness of the issues faced by CEV people, including those with hidden disabilities. This was particularly true when coming out of shielding and participants felt that it was difficult for them to go back to normal. It is consistent with other research findings where participants felt like they'd ‘been thrown to the wolves’ and were less valued than ‘healthy’ members of the population. 29 CEV people cannot shield effectively without the understanding and cooperation of those around them, emphasising the need for better policies and legislation relating to CEV people.

This study has found that life has not returned to normal for many participants despite the end of shielding restrictions. This is consistent with the findings of a review into the psychological impact of quarantine which suggested negative psychological effects including depression and stress can be wide-ranging, substantial and detected months or years later. 30 It has highlighted how many still need support to effectively manage their physical and mental health as they cease shielding or continue to shield. The study also indicates the value of providing rheumatology-specific guidelines and sources of information relating to diet, exercise, medication, relaxation skills and employment rights, all of which could be made available online for times of isolation. The study also highlights the importance of providing methods, such as helplines and support groups, to enable people to get advice and talk to others going through similar experiences. Participants’ experiences of vulnerability, changes to self-perception and difficulties in conveying their feelings and behaviours to others indicate an additional need for a psychologically informed approach to help with building self-confidence, developing coping strategies and help with acceptance and communicating about their rheumatic condition. Providing patients with the support they need during times of isolation and ensuring they do not feel forgotten will both help minimise their physical and mental distress at the time and prevent the need for more invasive and costly healthcare and treatments in future, saving both patient distress and National Health Service resources.

Future research should investigate the ongoing physical and mental impact of shielding on patients with rheumatic conditions to ensure they receive appropriate treatment and support. The financial and employment impact could also be studied due to changes in employment, work patterns and job losses either as a consequence of shielding or due to deterioration in health. The impact on patients’ partners and family would also be a beneficial area of future study.

Strengths and limitations

A strength of this study is that it captured the views of participants as they had recently stopped shielding or were ceasing to shield and so gained an insight into their thoughts and behaviours at this particular point in time. It looked at what activities and behaviours participants felt were safe for them to do and explored the support they needed to help with this decision-making, as well as looking at their support needs with regards to their physical and mental health. The data were collected and analysed by two ‘insider researchers’ (ie, the researchers shared group membership with the participants as they also had personal experience of shielding due to being classified as CEV), which may have allowed for a greater rapport with participants, resulting in richer, more detailed data due to their shared experiences, knowledge and understanding. 31 The research findings were informed by discussions with coauthors with multidisciplinary backgrounds, including medicine, psychology and lived experience of shielding, to ensure an all-round perspective was obtained. A further strength of this study is that the participants had a range of rheumatic conditions with a range of disease duration.

A limitation of this study is that there was a lack of ethnic diversity as participants were all from a white ethnic background. In addition, participants were from a limited geographical area (Southwest of England), but the data obtained reflect those found in other similar studies.

Conclusions

Shielding led to some patients feeling ‘forgotten’ and many found it difficult to talk about their experiences and the challenges they faced to other people. Many are still dealing with lasting physical and mental effects both from the experience of shielding and as a consequence of delays to their healthcare and treatment. For many, the COVID-19 pandemic is over, but 3 years on some individuals with rheumatic disease have only recently ceased shielding, while some continue to shield. Health professionals must be given the time and resources to ask about patients’ well-being and support needs and be able to ensure their patients can be signposted and referred to timely and appropriate sources of psychological support. Rheumatology-specific guidelines would benefit patients during any future pandemics. It would also be helpful to involve CEV people in the plans for any future need for them to isolate, whether for health-related setbacks or for a future pandemic.

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

The study was approved by the Health and Applied Sciences Faculty Research Ethics Committee of the University of the West of England (reference: HAS.21.12.047). Participants gave informed consent to participate in the study before taking part.

• ↵ ONS . 2020 . Available : https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/coronavirusandclinicallyextremelyvulnerablepeopleinengland/22februaryto27february2021#reasons-for-clinically-extremely-vulnerable-people-leaving-their-homes
• ↵ Versus arthritis . 2020 Available : https://www.versusarthritis.org/news/2020/july/new-research-reveals-shielding-experiences-of-millions-with-arthritis/
• ↵ Versus arthritis . 2020 . Available : https://committees.parliament.uk/writtenevidence/18230/pdf/
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• ↵ Anderson . 2021 . Available : https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)00232-4/fulltext
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Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

• Data supplement 1

X @drlauracoates

Contributors Conception/study design: CAS, BJ, MB and ED. Development of topic guide: all authors. Access to participants/acquisition of data: CAS, BJ, JO and ED. Conducting the interviews: CAS and BJ. Analysis and interpretation of the data: CAS with support from BJ and ED. Project management: ED. Manuscript drafting: CAS. Manuscript revision and approval: all authors. ED, guarantor.

Funding The project was funded by the Bath Institute for Rheumatic Diseases (BIRD).

Competing interests None declared.

Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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At least four-in-ten U.S. adults have faced high levels of psychological distress during COVID-19 pandemic

At least four-in-ten U.S. adults (41%) have experienced high levels of psychological distress at least once since the early stages of the coronavirus outbreak , according to a new Pew Research Center analysis that examines survey responses from the same Americans over time.

Experiences of high psychological distress are especially widespread among young adults. A 58% majority of those ages 18 to 29 have experienced high levels of psychological distress at least once across four Center surveys conducted between March 2020 and September 2022.

This assessment of the public’s psychological reaction to the COVID-19 outbreak is based on surveys of members of Pew Research Center’s American Trends Panel (ATP) conducted online several times since March 2020. The mental health questions were included on four surveys. The first survey was conducted among 11,537 U.S. adults March 19-24, 2020; a second survey with the question series was conducted April 20-26, 2020, with a sample of 10,139 adults; a third survey was conducted February 16-21, 2021, among 10,121 adults; and the most recent survey was conducted September 13-18, 2022, among 10,588 adults. Additionally, researchers analyzed a subsample of 5,007 respondents who participated in each of the four surveys to examine psychological distress over time.

The ATP is an online survey panel that is recruited through national random sampling of residential addresses. This way nearly all U.S. adults have a chance of selection. The surveys are weighted to be representative of the U.S. adult population by gender, race, ethnicity, partisan affiliation, education and other categories. The group of respondents who participated in each of the four surveys was similarly weighted to be representative of the U.S. adult population. Here is more information about the ATP .

The psychological distress index used here measures the total amount of mental distress that individuals reported experiencing in the past seven days, as captured by questions measuring sleeplessness, anxiety, depression, loneliness, and physical reactions experienced when thinking about the outbreak. The low distress category includes about half of the sample; very few in that group said they were experiencing any of the types of distress most or all of the time. The middle category includes roughly a quarter of the sample, while the high distress category includes 21%. A large majority of those in the high distress group reported experiencing at least one type of distress most or all of the time in the past seven days.

This research benefited from the advice and counsel of the COVID-19 and mental health measurement group from Johns Hopkins Bloomberg School of Public Health (JHSPH): Catherine K. Ettman (JHSPH); M. Daniele Fallin (JHSPH, now at Emory University); Calliope Holingue (Kennedy Krieger Institute, JHSPH); Renee Johnson (JHSPH); Luke Kalb (Kennedy Krieger Institute, JHSPH); Frauke Kreuter (University of Maryland, Ludwig-Maximilians University of Munich); Elizabeth Stuart (JHSPH); Johannes Thrul (JHSPH); and Cindy Veldhuis (Columbia University, now at Northwestern University).

Here are the mental health questions used for this analysis, along with responses, and the detailed survey methodology statements for surveys conducted in March 2020 , late April 2020 , February 2021 and September 2022 .

The analysis highlights the fluid nature of psychological distress among Americans, as measured by a five-item index that asks about experiences such as loneliness, anxiety and trouble sleeping.

In the September 2022 survey, 21% of U.S. adults fell into the high psychological distress category; in each of four surveys, no more than 24% of adults have fallen into this category. But because individuals experience varying levels of distress at different points in time, a significantly larger share of Americans (41%) have experienced high psychological distress at least once across the four surveys conducted over the past two and a half years.

In addition to age, experiences of high psychological distress are strongly tied to disability status and income. About two-thirds (66%) of adults who have a disability or health condition that keeps them from participating fully in work, school, housework or other activities reported a high level of distress at least once across the four surveys. And those with lower family incomes (53%) are more likely than those from middle- (38%) and high-income households (30%) to have experienced high psychological distress at least once since March 2020.

See also: In CDC survey, 37% of U.S. high school students report regular mental health struggles during COVID-19 pandemic

While many Americans faced challenges with mental health before the coronavirus pandemic, public health officials warned in early 2020 that the pandemic could exacerbate psychological distress. The negative effects of the outbreak have hit some people harder than others, with women, lower-income adults , and Black and Hispanic adults among the groups who have faced disparate health or financial impacts.

Americans’ personal levels of concern about getting or spreading the coronavirus have continued to decline over the course of 2022. The coronavirus is one of many potential sources of stress , including the economy and worries about the future of the nation.

Psychological distress levels have shifted for most Americans during the pandemic

Amid the shifting landscape of COVID-19 in the United States , just 35% of Americans have registered the same level of psychological distress – whether high, medium or low – across all four surveys conducted by the Center since March 2020.

Instead, a majority of respondents (60%) moved in and out of levels of psychological distress. Psychological distress increased for some but decreased for others. One illustration of the fluid nature of these experiences is that while 41% of U.S. adults faced high psychological distress at least once across four surveys, just 6% experienced high distress in all four surveys. Nearly five times as many (28%) experienced low distress in all of the surveys.

The index of psychological distress is based on measures of five types of possible distress experienced in the past week, such as anxiety or sleeplessness, that are adapted from standard psychological measures. As used in the current survey, the questions are not a clinical measure nor a diagnostic tool; they describe people’s emotional experiences during the week prior to the interview.

Only one question refers specifically to the coronavirus outbreak. It asks how often in the past week Americans have “had physical reactions, such as sweating, trouble breathing, nausea, or a pounding heart” when thinking about their experience with the coronavirus outbreak. In the most recent September survey, 14% of Americans answered this question affirmatively. In March 2020, in the early stages of the outbreak, 18% said they had experienced this.  

Trouble sleeping is one of the most common forms of distress measured in the surveys. In the latest survey, about two-thirds of adults (64%) reported trouble sleeping at least some or a little of the time during the past week. A similar share (61%) said they had felt nervous, anxious or on edge.

Experiences with depression and loneliness also register with sizable shares of Americans. In the most recent survey, 46% of adults said they had felt depressed at least one or two days during the past week, and 42% said they had felt lonely.

All four surveys have included a question about positive feelings, though it is not part of the psychological distress index. Overall, 78% of U.S. adults said they had felt hopeful about the future at least one or two days in the past week, according to the latest survey from September. However, 22% of adults said they had felt hopeful about the future rarely or none of the time during the past week.

Note: Here are the mental health questions used for this analysis, along with responses, and the detailed survey methodology statements for surveys conducted in March 2020 , late April 2020 , February 2021 and September 2022 .

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Giancarlo Pasquini is a research associate focusing on science and society research at Pew Research Center

Scott Keeter is a senior survey advisor at Pew Research Center

How Americans View the Coronavirus, COVID-19 Vaccines Amid Declining Levels of Concern

Online religious services appeal to many americans, but going in person remains more popular, about a third of u.s. workers who can work from home now do so all the time, how the pandemic has affected attendance at u.s. religious services, mental health and the pandemic: what u.s. surveys have found, most popular.

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Psychological distress in adult women of reproductive age at different stages after breast cancer diagnosis: A qualitative study

Affiliations.

• 1 Cancer Day-Care Unit, Department of Medical Oncology, Cancer Center, West China Hospital, Sichuan University/West China School of Nursing, Sichuan University, Chengdu, China.
• 2 Breast Center, West China Hospital, Sichuan University/ Department of General Surgery, West China Hospital, Sichuan University/West China School of Nursing, Sichuan University, Chengdu, China.
• 3 Thoracic Oncology Ward, Cancer Center, West China Hospital, Sichuan University/West China School of Nursing, Sichuan University, Chengdu, China.
• 4 Department of Nursing, West China Hospital, Sichuan University/ West China School of Nursing, Sichuan University, Chengdu, China.
• PMID: 38284456
• DOI: 10.1111/jocn.17018

Aim: To explore the actual experience of psychological distress of adult women of reproductive age at different stages after breast cancer diagnosis.

Design: Qualitative.

Methods: Eighty-one patients with breast cancer-related distress thermometer scores >4 were selected using a purposive sampling method. Patients were divided into newly diagnosed and 1-, 3-, 6-, 9- and 12-month groups according to time since diagnosis and then interviewed. A phenomenological approach was adopted to analyse interview content, and different themes were extracted.

Results: Women exhibited different levels of psychological distress depending on the time since diagnosis, with newly diagnosed patients showing the highest distress. Within 1 year post-diagnosis, different events caused patients distress. Themes extracted at new diagnosis and 1-, 3-, 6-, 9- and 12 months post-diagnosis included sadness and disbelief, loss of control, optimistic but concerned, physical and mental exhaustion, difficulties returning to society and limited sexual intimacy, respectively; all groups expressed reproductive concerns.

Conclusion: Clinical nurses should focus on different psychologically distressing events to provide targeted interventions at distinct phases. For women of childbearing age, clinical nurses should pay particular attention to patients' marriage and reproductive concerns.

Implications for the profession and/or patient care: During the year after a breast cancer diagnosis, patients of childbearing age experience events that cause psychological distress that differ depending on time since diagnosis. Nurses should focus on core stressful events and perform specific nursing interventions.

Impact: To provide holistic care, nurses should consider the psychological and emotional changes patients may undergo. For women of childbearing age, clinical nurses should pay particular attention to patients' marriage and fertility concerns, and be able to provide evidence-based professional guidance on reproductive preservation techniques.

Reporting method: The study was reported using the consolidated criteria for reporting qualitative research guidelines.

Patient or public contribution: Patients contributed to data collection through interviews.

Keywords: breast cancer; cancer education; fertility; nursing research; psychological distress; qualitative research; social support.

© 2024 John Wiley & Sons Ltd.

• Breast Neoplasms* / psychology
• Psychological Distress*
• Qualitative Research
• Reproduction

Resilience and Psychological Distress in Genetic Testing for Alzheimer's Disease

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The relationship between resilience and psychological distress resulting from genetic testing for Alzheimer’s disease among non-cognitively impaired individuals is examined in this study. Preventative genetic testing determines the likelihood of developing or passing on genetic disorders. However, receiving genetic information, especially regarding incurable diseases like Alzheimer’s disease, can lead to significant psychological distress. Resilience, the ability to cope with adversity and recover quickly, is considered a protective factor against psychological distress. The purpose of this study is to investigate whether higher levels of resilience are associated with lower psychological distress from genetic testing for Alzheimer’s disease and to determine if having a familial history of Alzheimer’s disease influences this relationship. An online cross-sectional survey was conducted among 181 non-cognitively impaired participants (43.6% Male; 54.1% Female; Mage=38.1 [13.9]) using the Impact of Genetic Testing for Alzheimer’s Disease (IGT-AD) scale and the Brief Resilience Scale (BRS), along with a question about family history of Alzheimer’s disease. The results indicated a significant negative correlation between resilience and psychological distress, suggesting that individuals with higher resilience experienced lower distress related to genetic testing. However, family history did not mediate the relationship, meaning the protective effect of resilience was consistent regardless of familial risk. These findings have implications for developing targeted support services and resilience-based interventions to help individuals cope with the emotional impact of genetic testing for Alzheimer’s disease. Further research could explore other potential protective factors and examine the long-term impact of genetic testing results on psychological well-being and behavior.

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This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License .

• Open access
• Published: 22 April 2024

Body image perception and social support as predictors of psychological distress among third trimester pregnant women in Nigeria

• Oluwaseyi Isaiah Olabisi 1 ,
• Eunice Ogunmodede 2 ,
• Simeon Ojo 3 ,
• Oluwafemi Ilori 3 &
• Deborah T. Esan 4  

BMC Pregnancy and Childbirth volume  24 , Article number:  298 ( 2024 ) Cite this article

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Body image perception and social support during pregnancy can impact the psychological distress levels experienced by pregnant women. As a result, the purpose of this study was to examine the relationship between various components of social support and body image perception on psychological distress levels among pregnant women in their third trimester in Nigeria.

A cross-sectional study was conducted among 246 pregnant women who were in the third trimester and attending selected health care facilities in Ogbomoso, a semiurban city in Oyo State, Nigeria. Body image perception, social support, and psychological distress scales were used to collect the data. Data were analyzed and summarized using descriptive and inferential statistics (ANOVA and multiple regression), with significance set at p  < 0.05.

Regression analysis showed that 44% of the variation in psychological distress among pregnant women was explained by the background variables, marital status, body image perception, appraisal support, tangible support, belonging support, interaction between body image perception and appraisal support, belong support and tangible support.

Intervention programs focusing on bolstering tangible support, belonging support and appraisal support are recommended at reducing the psychological distress due to body image perception among pregnant women at third trimester.

Peer Review reports

Introduction

Women experience a variety of changes at all stages of pregnancy, and these affect every aspect of their lives, including the social, physical, and psychological domains. According to Watson et al. [ 1 ], pregnancy constitutes a time of significant life change requiring major psychological adjustment, which is often associated with anxiety and stress. Pregnant women experience psychological distress during pregnancy [ 2 , 3 ], but it is more common during the third trimester, which may influence the risks of low birth weight, long-term cognitive defects, prolonged delivery, and preterm delivery [ 2 , 4 , 5 , 6 ]. Fear of the unknown, potential birth trauma, concerns about neonatal developmental disorders, and concerns about changes in relationships with partners, family, and friends are some of the risk factors for a high level of psychological distress during the third trimester of pregnancy [ 3 , 4 , 7 , 8 ].

A woman’s satisfaction with her body image is one of the factors that determines her physical and mental wellbeing, while a negative body image can lead to many health problems [ 9 , 10 ]. It is quite obvious that pregnancy changes the body image of all women, which causes either positive or negative perceptions [ 11 ]. According to Bergmeier et al. [ 12 ], there are dramatic changes in a woman’s body shape that can be associated with body image concerns. Several alterations in outward appearance, namely, weight gain and skin changes, occur throughout the entire body during pregnancy. Sohrabi et al. [ 13 ] categorized the body image perception of pregnant women into three categories: symbols from motherhood and vulnerability; feelings towards changes in the body derived from negative feelings towards changes in the skin; unfit, ridiculous-obsessed shape and attention-seeking shape of the body; and attraction category from sexual with beauty attractions. Additionally, Goonapienuwala et al. [ 14 ] and Voelker et al. [ 15 ] averred that body image, as a multifaceted construct, includes perceptual, cognitive, and affective components regarding one’s own body as well as the bodies of others. Fahami et al. [ 16 ] and Plante et al. [ 17 ] concluded that women are dissatisfied with their body image, especially in the third trimester, when all parts of the body are affected. Dissatisfaction with body image during pregnancy was habitually accompanied by adverse maternal and child health outcomes. For instance, Silveira et al. [ 18 ] and Bergmeier et al. [ 12 ] revealed that body image dissatisfaction was connected to depressive symptoms, unfavourable dieting behaviour and eating disorders, excessive gestational weight gain, and postpartum weight retention.

Rashid and Mohd [ 19 ] posited that social support acts as a protective factor against body image disturbance and pregnancy-related disorders, which may enhance subjective well-being. Furthermore, social support from friends is negatively correlated with depression, anxiety, and stress [ 8 ]. The likelihood of depression, anxiety, and self-harm during pregnancy, according to Badeso et al. [ 20 ], is significantly correlated with low social support. The authors further stated that policymakers and individuals involved in maternity care should think about creating specialized social support programs for preventing mental health problems among pregnant women. Akiki et al. [ 21 ] posited that due to the lack of a support system, pregnant women with low social support may experience stress and may later develop depression because they lack a confidant, a source of crucial information or guidance, or someone to assist them in coping with bad emotions. Social support, according to Renbarger et al. [ 22 ], comprises four functional constructs: emotional, instrumental, informational, and appraisal. These four social support concepts, according to Biaggi et al. [ 23 ], may have a buffering effect in which resources made available to a person may improve their health and lessen the negative effects of stresses to which they are exposed. Additionally, pregnant women with limited social support are less content with their families and less adept at dealing with others; as a result, they may experience loneliness, have difficulty with stress, and subsequently develop anxiety. Social support and body image perception, together with other factors, have been generally discovered in previous studies [ 24 , 25 ] to be predictors of psychological distress among pregnant women, but to the best of our knowledge, no study has specifically evaluated their relationship in the third trimester in Nigeria. This study therefore determined the relationship among body image perception, social support, and psychological distress. It further predicts the moderating effects of tangible, belonging and appraisal support on the relationship between body image perception the level of psychological distress. The findings of this study may help healthcare professionals provide an intervention for pregnant women who are experiencing psychological distress during their third trimester whenever they attend the antenatal clinic.

Research design

This study utilized a cross-sectional descriptive design.

Study population and size

The study was conducted among third-trimester pregnant women attending two selected primary health centres and two selected teaching hospitals in the Ogbomoso area of Oyo State, Nigeria. The primary health centres are the Ibrahim Taiwo and Adebayo Alata primary health care centres, while the teaching hospitals are Bowen University Teaching Hospital and Ladoke Akintola University Teaching Hospital. The inclusive criteria are all consenting pregnant women at 29 to 40 weeks of gestation attending the hospitals between 1st March and 15th June 2022. Also, the pregnant women should not have history of mental illness or medical problem history. The number of questionnaires distributed was 269, and 246 (91%) questionnaires were fit for the analysis.

Data collection

Researchers recruited eight research assistants for the distribution of the questionnaires. The ethical clearance was obtained from the Bowen University Teaching Hospital Ethical Committee. Two research assistants were recruited for each of the facilities. The research assistants were taught to obtain consent from the respondents and distribute the questionnaires. The Chief Medical Director of the Teaching Hospitals and the Medical Officer in Charge of the Health Centres gave their approval to collect the data from each of the facilities. The research assistant went to the hospital during the antenatal clinic days and requested that the pregnant women be within the gestational age range of interest. Convenient sampling technique was used and any consenting pregnant women met during the antenatal visit were recruited. The pregnant women were informed about the study and were told about their confidentiality and willingness to participate in it. Those who agreed to participate in the study were thereafter given the consent form and questionnaire to complete, which were collected immediately.

Research instruments

The research instrument adopted for the purpose of this study was divided into four sections:

Sociodemographic characteristics

This questionnaire includes questions regarding the demographic, social, and medical characteristics of women, such as age, monthly income, religion, marital status, level of education, occupation, ethnicity, and family type.

• Body image perception

The Body Image Perception Scale was adopted to measure body image perception among pregnant women [ 26 ]. It is a 49-item scale with seven (7) subscales, including body image ideals, body image importance, body dissatisfaction, body change (global and specific parts), appearance-related behaviours (appearance and physical activity), sexual attractiveness, and functioning of the body. For each of the Body Image Importance, Body Image Ideals, Sexual Attractiveness, and Functioning of the Body subscales, participants ranked how the item applied to their experience on a five-point Likert scale (1 = strongly agree through to 5 = strongly disagree). For both the Body Dissatisfaction and Body Change subscales, participants ranked their level of satisfaction with body parts or body changes on a five-point Likert scale, ranging from one (strongly satisfied) through five (strongly dissatisfied). For the appearance-related behaviours subscale, items were ranked according to the participant’s level of engagement with the behaviour, with response options ranging from ‘never engaged with the behaviour’ to ‘always engaged in the behaviour’. Item scores were summed together to produce a total score for each of the subscales; higher scores were indicative of greater disturbance of the aspect of body image (e.g., a higher score on the Body Change subscale was indicative of higher body dissatisfaction with the body changes experienced).

• Psychological distress

The Kessler Psychological Distress Scale (K10) was adopted to assess the level of psychological distress among pregnant women. It is a 10-item question rated on a five-point Likert scale ranging from 1 (none of the time) to 5 (all of the time). It has a minimum score of 10 and a maximum score of 50. Low scores indicate low levels of psychological distress, and high scores indicate high levels of psychological distress. It has been documented that a score of 0–24 indicates less psychological distress, while a score of 25–50 indicates significant psychological distress [ 27 ]. The continuous score was used for the analysis. The Cronbach alpha of the instrument from a previous study is 0.88.

• Social support

A shortened version of the Interpersonal Support Evaluation Scale consisting of 12-item questions was used to measure the level of perceived social support received by the pregnant women [ 28 ]. The question is measured on a 4-point Likert scale ranging from “definitely true” to “definitely false.” This questionnaire has three different subscales designed to measure three dimensions of perceived social support, including appraisal support, belonging support, and tangible support. Items 2, 4, 6, and 11 make up the Appraisal Support Subscale; Items 1, 5, 7, and 9 make up the Belonging Support Subscale; and Items 3, 8, 10, and 12 make up the Tangible Support Subscale. The Cronbach values for appraisal support, belonging support, and tangible support in this study are 0.86, 0.82, and 0.85, respectively.

Method of data analysis

Statistical Package for Social Sciences (version 23) was used to analyze the data. Both descriptive statistics (frequency and percentages) and inferential statistics (ANOVA and multiple regression) were carried out. The social demographic variables were described by frequency and percentages. The relationship between the sociodemographic variables and psychological distress among the pregnant women were determined by ANOVA. Multiple regression including moderation analysis using robust standard errors was conducted using psychological distress as dependent variable while body image perception, tangible support, belonging support and appraisal support as independent variable. The demographic variables including, religion, marital status, level of occupation, ethnicity and family type were included in regression as the control variables. For the moderating effect of tangible support, belong support and appraisal support on the relationship between body image perception and psychological distress,, three interaction terms were created which are (1)tangible support*body image perception; to determine the effect of tangible support on the relationship between the body image perception and psychological distress (2) belonging support*body image perception; to determine the effect of belonging support on the relationship between body image perception and psychological distress and (3) Appraisal support*body image perception ; to determine the effect of appraisal support on the relationship between body image perception and psychological distress.

Table  1 shows the demographic variables of the pregnant women in the third trimester. The mean age and standard deviation were 26 years and 5 years, respectively. One hundred and fifty (61%) pregnant women were Christians, and thirty-one (12.6%) were single. Only a few (4.1%) had no formal education, and one hundred forty-two (57.7%) had secondary education. The majority (70.3%) were self-employed, and 70 (28.5%) and one hundred and ninety-three (78.5%) were from the Yoruba ethnic group. Most of the pregnant women (72.4%) were from nuclear families, while the average monthly income of the pregnant women was $60,000. The relationship between sociodemographic variable of the pregnant women and the psychological distress in Table  2 reveals the significant relationship between family type, occupation, level of education and psychological distress In Table  3 , Being married was associated with lower psychological distress by 0.2 average point. Any problem with body image perception was associated with psychological distress by 1.6 score. Utilizing appraisal support reduced the level of psychological distress by 1.9 while belonging support reduces the psychological distress by 2.1. Tangible support also reduced the psychological distress by average of 1.0. The interaction terms (Appraisal support*body image perception, belonging support*body image perception and belonging support*body image perception) reveals that the coefficient was negative which means that the effect of belonging, appraisal and tangible support on body image perception was negative and were statistically significant. This implies that the presence of various forms of social support reduces the positive relationship between body image perception and psychological distress of the pregnant women. In the presence of tangible support, the coefficient on body image perception is reduced by 0.2. This implies that pregnant women with psychological distress due to body image perception have a lower score of 1.37, while in the presence of belonging support had a lower score of 0.34. Psychological distress in pregnant women due to body image perception had a lower score of 0.79 points in the presence of appraisal support.

Discussion of findings

This study was conducted to explore the relationship between body image perception, social support, and psychological distress among pregnant women in the third trimester. Findings from this study show that the greater the extent to which pregnant women are dissatisfied with their body image perception, the more they experience psychological distress. This is in line with Linde and colleagues, who reported women’s dissatisfaction with different components of body image perception during the second and third trimesters [ 29 ]. It also corroborated the findings of Yasemei and colleagues that pregnant women’s psychological distress levels decreased when they felt themselves as powerful in a sexual relationship [ 30 ].

Findings from this study further revealed that pregnant women who are dissatisfied with body change and appearance-related behaviour, experienced a high level of psychological distress. This implies that the more a woman is satisfied with her body change and appearance during pregnancy, the more she experiences psychological stability and wellbeing. It also means that a negative perception of body changes and appearance-related behaviour during pregnancy can result in psychological distress, which can inadvertently influence the progress and outcome of pregnancy. Przybyla-Basista et al. [ 31 ] further confirmed this in a study of 150 Polish pregnant women higher levels of negative evaluation of appearance increased the chances of depression in pregnant women by almost one and a half. Linde [ 29 ] reported that body dissatisfaction during pregnancy can affect maternal and foetal health, prompting women to severely restrict their eating or triggering a relapse of an eating disorder, and the risk of perinatal depression is four times higher in women who are dissatisfied with their body image. Ojha & Kumar [ 32 ] further revealed that a positive body image can improve self-esteem, satisfaction, and psychological wellbeing, while body image dissatisfaction can result in unhappiness.

According to Kowalska [ 33 ], social support is significantly related to the level of perceived stress and anxiety experienced by pregnant women. Findings from this study revealed that all three components of social support reduce the level of psychological distress though at different level. Evidence has shown that appraisal of life events improves mental health [ 34 ], using it for pregnant women who are dissatisfied with body change will produce appropriate results. Consistent with a previous study, our findings further revealed that tangible and belonging social support are essential for improving the psychological health of pregnant women during the late stage of pregnancy. According to our findings, singles experienced less psychological distress than married individuals. Marital status is a major sociodemographic component influencing both the physical and psychological health of pregnant women. Pregnant women with higher social support from spouses are healthy mentally [ 35 ], while poor relationships with husbands are a predisposing factor to prenatal depression [ 36 ].

The clinical implication of this study is that the psychological distress experienced by pregnant women can be reduced with the appropriate use of social support components, and this should be emphasized during the antenatal clinic. Healthcare providers should ask pregnant women about their feelings about their body changes and the various components of social support they receive. Also, specialists in psychotherapy and counselling should be engaged during the antenatal clinic for pregnant women who are prone to poor body image perception.

The limitation of this study is the use of a quantitative study design only. The mixed method, including both quantitative and qualitative design, will provide in-depth insight into the relationship among the variables. The strength of this study is the specific group of pregnant women considered who are in the third trimester and have obvious changes in body shape and size.

Conclusions

Pregnancy and childbirth bring a variety of changes to a woman, affecting every aspect of her life. Some women embrace the changes that come with pregnancy and giving birth, but for many, metamorphosis can negatively shift their self-image. This study revealed that pregnant women who are concerned about their body image perception has increase level of psychological. Appraisal, tangible and belonging social support reduced the level of psychological distress among the pregnant women. It is therefore recommended that intervention programs focusing on bolstering appraisal, tangible and belonging support be provided for pregnant women in the third trimester.

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

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All authors wish to sincerely appreciate all the pregnant women who participated in the study.

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Contributions

Authors’ contributionsOIO designed the study, collected data, analyzed and wrote the main manuscript. EO analyzed data and wrote the main manuscript. SO collected the data and wrote the main manuscript. OI collected the data and designed the study. DTE designed the study and revised the manuscript. All authors reviewed the manuscript.

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Correspondence to Oluwaseyi Isaiah Olabisi .

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a. The study was approved by ethical committee of Bowen University Teaching Hospital, Ogbomoso. Oyo-State.

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Olabisi, O.I., Ogunmodede, E., Ojo, S. et al. Body image perception and social support as predictors of psychological distress among third trimester pregnant women in Nigeria. BMC Pregnancy Childbirth 24 , 298 (2024). https://doi.org/10.1186/s12884-024-06463-6

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Received : 23 August 2023

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DOI : https://doi.org/10.1186/s12884-024-06463-6

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