ORIGINAL ARTICLE
Effects of stigma on Chinese women’s attitudes towards seeking treatment for urinary incontinence Cuili Wang, Jingjing Li, Xiaojuan Wan, Xiaojuan Wang, Robert L. Kane and Kefang Wang
Aims and objectives. To examine whether and how stigma influences attitudes towards seeking treatment for urinary incontinence, and whether its effect varies by symptom severity. Background. Urinary incontinence is prevalent among women, but few seek treatment. Negative attitudes towards urinary incontinence treatment inhibit from seeking care. Urinary incontinence is a stigmatised attribute. However, the relationship between stigma and attitudes towards seeking treatment for urinary incontinence has not been well understood. Design. This was a cross-sectional community-based study. Methods. We enrolled a sample of 305 women aged 40–65 years with stress urinary incontinence from three communities in a Chinese city between May–October in 2011. Data were collected on socio-demographic characteristics, urinary incontinence symptoms, stigma and attitudes towards seeking treatment for urinary incontinence using a self-reported questionnaire. Effects of stigma were analysed using path analysis. Results. Attitudes towards seeking treatment for urinary incontinence were generally negative. For the total sample, all the stigma domains of social rejection, social isolation and internalised shame had direct negative effects on treatmentseeking attitudes. The public stigma domain of social rejection also indirectly affected treatment-seeking attitudes through increasing social isolation, as well as through increasing social isolation and then internalised shame. The final model accounted for 28% of the variance of treatment-seeking attitudes. Symptom severity influenced the strength of paths: the effect of internalised shame was higher in women with more severe urinary incontinence. Conclusions. Stigma enhances the formation of negative attitudes towards seeking treatment for urinary incontinence; public stigma affects treatment-seeking attitudes through internalisation of social messages. Relevance to clinical practice. Stigma reduction may help incontinent women to form positive treatment-seeking attitudes and engage them in treatment. Interventions should specifically target the self-stigma domains of social isolation and
Authors: Cuili Wang, PhD, Associate Professor, School of Nursing, Shandong University, Jinan, China; Jingjing Li, BSN, RN, MMed Candidate, School of Nursing, Shandong University, Jinan, China; Xiaojuan Wan, RN, MMed, School of Nursing, Yangzhou University, Yangzhou, China; Xiaojuan Wang, BSN, RN, MMed Candidate, School of Nursing, Shandong University, Jinan, China; Robert L. Kane, MD, Professor, School of Public Health, University of Minnesota, Minneapolis, MN, USA; Kefang Wang, PhD,
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What does this paper contribute to the wider global clinical community?
• This paper reveals that stigma
•
•
enhances the formation of negative attitudes towards seeking treatment for urinary incontinence. This paper also finds that the effect of social rejection on treatment-seeking attitudes is mediated by social isolation and internalised shame. This paper implies that stigma reduction may improve incontinent women’s engagement in treatment, and interventions should specifically target social isolation and internalised shame.
RN, Associate Dean and Professor, School of Nursing, Shandong University, Jinan, China Correspondence: Kefang Wang, Associate Dean and Professor, School of Nursing, Shandong University, 44 Wenhuaxi Road, Jinan 250012, China. Telephone: +86 531 88382201. E-mail: [email protected] The first and second authors contributed equally to this work.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121, doi: 10.1111/jocn.12729
Original article
Attitudes towards UI treatment in women
internalised shame in women with urinary incontinence to most efficiently increase their use of health care.
Key words: attitudes, China, stigma, treatment seeking, urinary incontinence, women Accepted for publication: 12 October 2014
Introduction and background Urinary incontinence (UI) is a common health concern among adult women that has negative physical, psychosocial and economic consequences (Minassian et al. 2003, Holroyd-Leduc et al. 2004, Bartoli et al. 2010). Stress urinary incontinence (SUI), a popular subtype, affects half of incontinent women (Markland et al. 2011). However, a large proportion of women with UI never seek health care for UI worldwide (Kinchen et al. 2003, Zhu et al. 2009, El-Azab & Shaaban 2010, Elbiss et al. 2013). A Chinese survey with a national representative sample of women with UI found that only 25% of them had consulted with physicians about their symptoms (Zhu et al. 2009). Negative attitudes towards UI treatment were cited to explain poor treatment-seeking behaviours for incontinence. UI was commonly viewed as a natural outcome of ageing and/or childbirth, leading to the belief that there was no need to seek treatment (Kinchen et al. 2003, Horrocks et al. 2004, Saleh et al. 2005, Hsieh et al. 2008, El-Azab & Shaaban 2010, Elbiss et al. 2013). Also, it was found that the conservative or surgical treatment for UI was always viewed as ineffective or unacceptable by affected individuals; UI was even viewed as incurable (Hsieh et al. 2008, Elbiss et al. 2013). In addition, some people are not comfortable discussing personal matters with others and worry about the negative reactions associated with the disclosure of UI (Horrocks et al. 2004). Research has found that people with more positive attitudes towards treatment for UI were more likely to seek care, such as surgery acceptable as UI treatment and willing to take long-term medication (Kinchen et al. 2003, Donnell et al. 2005). Stigma has been shown to be an important determinant of forming negative attitudes towards care counselling in other stigmatised disease groups, such as mental illness (Wrigley et al. 2005, Hackler et al. 2010). Stigma, described as a flaw that discredits individuals for socially unacceptable, physical or psychosocial characteristics, could change affected people ‘from a whole and usual person to a © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
tainted, discounted one’ (Goffman 1963). Public stigma and self-stigma are the two main types of stigma (Corrigan & Watson 2002). Public stigma signifies negative perceptions about a disease held by society, leading to negative reactions (e.g. stereotyping, prejudice and discrimination) towards individuals with that disease; self-stigma signifies the perceptions that affected individuals have about themselves (Corrigan & Watson 2002). Living in a society that stigmatises individuals’ conditions, affected individuals come to accept and internalise these stigmatising perceptions held by society (Link & Phelan 2001). These individuals may have negative reactions and begin to label themselves as less valued, leading to decreased self-efficacy and self-esteem (Corrigan & Watson 2002, Altaweel & Alharbi 2012). Loss of bladder control is linked to feelings of personal incompetence for adults (Horrocks et al. 2004). Stigma associated with UI was significantly higher than that of other stigmatised diseases, such as depression and cancer (Elenskaia et al. 2011). UI-related stigma has been conceptualised as having three dimensions: social rejection, social isolation and internalised shame (Fife & Wright 2000, Wu et al. 2012). Social rejection represents experienced discrimination at work and in society (i.e. public stigma); social isolation and internalised shame refer to the internalised experience of being stigmatised (i.e. self-stigma): feelings of loneliness, inequality with others and uselessness; feelings of self-reproach, embarrassment and shame due to illness respectively (Fife & Wright 2000). UI-related stigma has been identified as a barrier to care-seeking behaviour, but these previous studies used a single-item stigma measure instead of a conceptualised stigma measure (Hagglund & Wadensten 2007, Hsieh et al. 2008). In addition, the mechanism through which stigma affects attitudes towards seeking treatment has not been well understood among UI populations. However, substantial studies on other stigmatised diseases may provide insights into the relationship between stigma and attitudes towards care seeking (Wrigley et al. 2005, Vogel et al. 2006, 2007, Hackler et al. 2010, Ma-
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Original article American Sociological Review 54, 400–423. Markland AD, Richter HE, Fwu CW, Eggers P & Kusek JW (2011) Prevalence and trends of urinary incontinence in adults in the United States, 2001 to 2008. Journal of Urology 186, 589–593. Masuda A, Anderson PL & Edmonds J (2012) Help-seeking attitudes, mental health stigma, and self-concealment among African American college students. Journal of Black Studies 43, 773–886. Minassian VA, Drutz HP & Al-Badr A (2003) Urinary incontinence as a worldwide problem. International Journal of Gynecology & Obstetrics 82, 327–338. Mitteness LS & Barker JC (1995) Stigmatizing a “normal” condition: urinary incontinence in late life. Medical Anthropology Quarterly 9, 188–210. Saleh N, Bener A, Khenyab N, Al-Mansori Z & Al Muraikhi A (2005) Prevalence, awareness and determinants of health care-seeking behaviour for uri-
Attitudes towards UI treatment in women nary incontinence in Qatari women: a neglected problem? Maturitas 50, 58– 65. Su J, Wen J & Wei Z (2006) The symptom severity and urodynamic parameters among women with stress urinary incontinence. Shandong Medicine 46, 18–19. Vogel DL, Wade NG & Haake S (2006) Measuring the self-stigma associated with seeking psychological help. Journal of Counseling Psychology 53, 325–337. Vogel DL, Wade NG & Hackler AH (2007) Perceived public stigma and the willingness to seek counseling: the mediating roles of self-stigma and attitudes toward counseling. Journal of Counseling Psychology 54, 40–50. Wan X, Wang C, Xu D, Guan X, Sun T & Wang K (2014) Disease stigma and its mediating effect on the relationship between symptom severity and quality of life among community-dwelling women with stress urinary incontinence: a study from a Chinese city.
Journal of Clinical Nursing 23, 2170– 2179. Wrigley S, Jackson H, Judd F & Komiti A (2005) Role of stigma and attitudes toward help-seeking from a general practitioner for mental health problems in a rural town. Australian and New Zealand Journal of Psychiatry 39, 514–521. Wu C, Liu Y & Wang K (2012) Analysis on confirmatory factors of revised social impact scale applied for female patients with urinary incontinent. Chinese Nursing Research 26, 2680– 2682. Yuan HB, Williams BA & Liu M (2011) Attitudes toward urinary incontinence among community nurses and community-dwelling older people. Journal of Wound, Ostomy, and Continence Nursing 38, 184–189. Zhu L, Lang J, Liu C, Han S, Huang J & Li X (2009) The epidemiological study of women with urinary incontinence and risk factors for stress urinary incontinence in China. Menopause 16, 831–836.
The Journal of Clinical Nursing (JCN) is an international, peer reviewed journal that aims to promote a high standard of clinically related scholarship which supports the practice and discipline of nursing. For further information and full author guidelines, please visit JCN on the Wiley Online Library website: http:// wileyonlinelibrary.com/journal/jocn
Reasons to submit your paper to JCN: High-impact forum: one of the world’s most cited nursing journals, with an impact factor of 1316 – ranked 21/101 (Nursing (Social Science)) and 25/103 Nursing (Science) in the 2012 Journal Citation Reportsâ (Thomson Reuters, 2012). One of the most read nursing journals in the world: over 19 million full text accesses in 2011 and accessible in over 8000 libraries worldwide (including over 3500 in developing countries with free or low cost access). Early View: fully citable online publication ahead of inclusion in an issue. Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jcnur. Positive publishing experience: rapid double-blind peer review with constructive feedback. Online Open: the option to make your article freely and openly accessible to non-subscribers upon publication in Wiley Online Library, as well as the option to deposit the article in your preferred archive.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
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Original article
The International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form (ICIQ-UI SF) was used to measure the severity of UI symptoms (Huang et al. 2008). The responses on the frequency, amount of urine leakage and the impact of UI on quality of life were summed. The sum-scores for the ICIQ-UI SF (total score 0– 21) could be divided into the following three severity categories: mild (0–7), moderate (8–13) and severe (14–21) (Su et al. 2006). It was recoded into a dichotomous variable (mild vs. moderate/severe), reflecting less severe and more severe UI. Stigma The Social Impact Scale (SIS) was used to assess UI-related stigma perceived by participants (Wu et al. 2012). The SIS is an 18-item scale with three dimensions: social rejection, social isolation and internalised shame. Confirmatory factor analysis validated the three-factor solution that fit the data among women with UI (Wu et al. 2012). Responses range from 1 (strongly disagree)–4 (strongly agree). A higher score represents a higher level of UI-related stigma. We confirmed the good reliabilities of the three dimensions in our study, with Cronbach’s alpha coefficients of 083, 080 and 089 respectively. Attitudes towards seeking treatment for UI To measure individuals’ attitudes towards seeking treatment for UI, a scale was developed based on Fischer’s framework of attitudes towards mental illness treatment (Fischer & Turner 1970). The scale measures the recognition of need for UI treatment, openness to health professionals regarding one’s UI symptoms, tolerance of other people’s reactions associated with disclosure of UI and confidence in UI treatment. Items were discussed by an expert panel to clarify wording and to confirm the content validity. The scale has excellent content validity, with scale-level Content Validity Index (CVI) of 092 and item-level CVIs ranging from 085–1. The scale contains 24 items, each with a five-point response ranging from 1 (strongly disagree)–5 (strongly agree). The total score of all items represents the individual’s attitudes towards UI treatment, with a higher score reflecting more positive attitudes towards UI treatment. The scale has good reliability in this study, with a Cronbach’s alpha coefficient of 075.
Statistical analysis Pearson correlations for social rejection, social isolation, internalised shame and attitudes towards UI treatment were computed in SPSS version 19.0 (SPSS, Inc., Chicago, © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
Attitudes towards UI treatment in women
IL, USA). Path analysis was conducted using AMOS version 19.0 (IBM Corp., Chicago, IL, USA) to test the theoretical model for the total sample. Then, multi-group path analysis was applied to examine whether the regression paths and the explained variances of treatment-seeking attitudes may vary across subsamples of mild and moderate/severe UI. Several indices were used to determine whether the hypothesised model fit the observed data. A small and nonsignificant chi-square value as the original fit index and the root mean square error of approximation (RMSEA) 196) (Fig. 2). In addition, the association of social rejection with social isolation (b = 041 vs. b = 062) was significantly lower (CR > 196) in the moderate/severe UI group. Table 4 demonstrates the direct effect, indirect effect and total effect of social rejection, social isolation and internalised shame. Their total effects on attitudes towards UI treatment for the total sample were 031, 033 and 037 respectively. Direct and indirect effects for both social rejection and social isolation were observed, while only a direct effect for internalised shame was observed. The total effects of social rejection and social isolation were lower, but that for internalised shame was higher in the moderate/severe UI group. The final model for the total sample accounted for 22% of the variance of social isolation, 22% of internalised shame and 28% of attitudes towards UI treatment respectively. Significant differences in the explained variance (CR > 195) between the two subsamples of mild and moderate/severe UI were found in internalised shame (26% vs. 13%), but not (CR < 195) in social isolation
Table 3 Two group nested models and v2 differences with increased constraints
Model
v2
df
v2/df
p
GFI
AGFI
IFI
CFI
TLI
RMSEA
Model1 D v2
Model1 p
1 2 3 4
325 18738 1218 27608
2 7 5 10
1625 0689 2436 2761
0197 0009 0032 0002
0995 0971 0982 0959
0947 0917 0926 0918
0995 0956 0973 0933
0995 0955 0973 0933
0971 0923 0934 0919
0045 0074 0069 0076
– 15488 8930 24358
– 0008 003 0002
1, Unconstrained model; 2, structural weight constrained model; 3, structural residual constrained model; 4, Full constrained model (structural weight and structural residual constrained model); GFI, Goodness-of-Fit Index; AGFI, Adjusted Goodness-of-Fit Index; IFI, Incremental Fit Index; CFI, Comparative Fit Index; TLI, Tucker Lewis Index; RMSEA, Root mean square error of approximation.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
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C Wang et al. Table 4 Direct and indirect effects of all stigma dimensions on attitudes towards urinary incontinence (UI) treatment for the total sample (first row) and the two subsamples of mild (second row) and moderate/severe UI (third row)
Predictor variables
Through
Social rejection (SR)
– – – SI
SI, IS
Direct effect 015 023 008
– – – IS
Total
Internalised shame (IS)
– – –
015 023 008 016 026 004
008 016 002 008 007 007 016 023 009
031 046 017
– – –
– – – 016 026 004 037 023 046
Total effect
– – –
– – – – – –
Total
Social isolation (SI)
Indirect effect
017 012 017 017 012 017 – – –
033 038 021 037 023 046
(38% vs. 16%) and treatment-seeking attitudes (34% vs. 24%).
Discussion This study elaborated on the complex relationships between multiple dimensions of stigma and attitudes towards seeking treatment for UI among middle-aged women who have the highest prevalence of SUI (Zhu et al. 2009). For the total sample, social rejection was positively associated with social isolation and internalised shame, and these three dimensions of stigma were negatively directly associated with attitudes towards UI treatment respectively. In addition, social isolation and internalised shame mediated the association of social rejection with attitudes towards UI treatment. The overall pattern of their relationships held true for the two subgroups with less severe and more severe UI, but some structural differences existed. The effect of internalised shame was stronger, while those for social rejection and social isolation were weaker in the moderate/severe UI group, compared to those in the mild UI group.
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We found that SUI women who perceived greater social rejection, social isolation and internalised shame were more likely to report negative attitudes towards UI treatment for the total sample. This finding could be explained using the theory of reasoned action developed by Ajzen and Fishbein (Ajzen & Fishbein 1980). Based on this theory, a primary predictor of intentions to seek treatment is individuals’ attitudes towards treatment seeking. These attitudes are shaped by evaluating the expectations the person has about the outcome of seeking treatment (e.g. the extent of stigma the individual experiences). UI is labelled as incompetence for adults by the public or self-labelled by the affected individual in both Eastern and Western cultures (Horrocks et al. 2004, Yuan et al. 2011). Because of labelling, a range of negative consequences were anticipated to occur if individuals with UI were to seek treatment, such as discrimination, rejection, shame, embarrassment and humiliation (Kinchen et al. 2003, Hagglund & Wadensten 2007, Hsieh et al. 2008). Therefore, people hide their UI problems and forego treatment to reduce the detrimental consequences related to stigma. This phenomenon is viewed as label avoidance, which is an inclination to deny problems and avoid seeking care that can negatively label the sufferer (Link et al. 1989). This is supported by the negative association of social rejection, social isolation and internalised shame with attitudes towards UI treatment observed in this study. Our results also showed that the effect of social rejection on attitudes towards UI treatment was mediated by social isolation and internalised shame. The result provides support to modified labelling theory, which maintains that public stigma can be internalised as self-stigma, and stigma is harmful primarily because of the negative impact it has on individuals’ perceptions (Link et al. 1989). It is possible that UI women who perceived more social rejection are more likely to internalise these negative reactions than those with less social rejection, and internalisation of that stigma plays a part in forming the negative attitudes towards treatment. According to our data, social rejection indirectly affected attitudes towards UI treatment through two paths. On the one hand, social rejection indirectly affected attitudes towards UI treatment by increasing social isolation. Social rejection refers to a spectrum of negative reactions delivered by the public that devalued individuals experienced, such as gaining less respect from others and being viewed as incompetence (Fife & Wright 2000). Women with UI who perceived more social rejection were more likely to experience social isolation. This parallels previous data that for the fear of public disclosure of incontinence symptoms and accompanied stereotypes, UI individuals isolated them© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
Original article
selves at home, used their own apartment toilets and avoided visitors (Mitteness & Barker 1995). The less able persons are to participate in normal social life, the more isolated they become. Thus, they have more tendency to form negative attitudes towards UI treatment, in turn, reducing likelihood of seeking treatment. On the other hand, the negative effect of social rejection on attitudes towards UI treatment took place through social isolation and internalised shame sequentially. Specifically, perceptions of social rejection contributed to the experience of social isolation and then internalised shame, which, in turn, influenced attitudes towards UI treatment. The stereotype held by society towards people with UI symptoms is internalised by the affected individuals and leaves them with an inferior or incompetent self-perception. Admitting the need for help may be the equivalent of an acknowledgement of their devaluation or incompetence, which is worse than the current suffering (Vogel et al. 2007). Thus, a person living with higher internalised shame may decide not to seek treatment for UI to preserve a positive self-image (Hagglund & Wadensten 2007). The two paths through which social rejection operates to affect attitudes towards UI treatment are similar to previous results that self-stigma mediates the association of public stigma with attitudes towards counselling for mental illness (Vogel et al. 2007). These results highlight a major need for people with higher self-stigma to be helped to challenge their negative beliefs about the disease. In addition, the severity of UI symptoms influenced the relationship of stigma with treatment-seeking attitudes. Their relationship in the mild UI group was similar to that in the total sample. However, the direct effects of social rejection and social isolation on treatment-seeking attitudes were not significant, but that for internalised shame was significantly higher in the moderate/severe UI group. These cross-group differences in the strength of paths may be attributable to stronger self-labelling and negative treatment-seeking attitudes reported by women with more severe UI in this study. Despite these structural differences between the two subgroups, the subgroup models fit as well as the model for the total sample. Essentially, the results validated the theoretical hypotheses that UI-related stigma enhances the formation of negative treatment-seeking attitudes, and the effect of public stigma is mediated by self-stigma. Although social rejection, social isolation and internalised shame were manifested differently within an individual, they had indispensable effects on the stigmatised individual, and their impacts affected each other. It is necessary and important to keep perceptions of stigma levels (i.e. social rejection) and endorsement of stigma (i.e. social isolation © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
Attitudes towards UI treatment in women
and internalised shame) conceptually distinct (Fife & Wright 2000). The strong direct link of social rejection with attitudes towards UI treatment for the total sample also points to the importance of reducing the negative stereotyping about this symptom in popular media and surroundings. The differential direct effects of social rejection across the two UI severity groups may guide appropriate treatment-seeking behaviour change strategies for the target subpopulations. This study has several limitations. First, this was a crosssectional study, limiting causal inference between stigma and attitudes towards UI treatment. Second, although attitudes towards treatment have been presented as an important predictor of intentions or behaviours (Ajzen 2011), future research is needed to determine whether different types of stigma could predict actual treatment-seeking behaviours. Finally, the sample consisted entirely of SUI women from three communities in a Chinese city. Findings may not be generalised to women of other areas or with different types of UI.
Conclusions Attitudes towards seeking treatment for UI are generally negative and predicted by UI-related stigma. Public stigma affects treatment-seeking attitudes through internalisation of social messages: the impact of social rejection on attitudes is mediated by social isolation and internalised shame. Comprehensive interventions addressing stigmatisation of UI by both the affected individual and the society may be warranted to increase use of UI treatment.
Relevance to clinical practice This study provides valuable insights into the links between stigma and attitudes towards seeking treatment for UI and reveals a plausible mechanism of how social rejection functions as a predictor of internalisation of social message to enhance the formation of negative attitudes towards UI treatment. These findings shed light on the importance of social isolation and internalised shame as more proximal factors in predicting attitudes towards UI treatment. This work may result in more cost-effective interventions aimed to promote individuals to use health care for UI because social rejection cannot be altered without massive social action (Vogel et al. 2007). Health professionals should address patient’s negative perceptions associated with UI and assist them in dealing with the negative impacts of internalised stigma. However, the close interrelation of social rejection with social isolation and internalised shame rein-
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forces an implication that changing society’s misperceptions of UI continues to be an essential strategy. These findings further underline the need to rethink in complex ways the causal processes underlying care-seeking behaviours among stigmatised people with UI.
cal_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content and (3) final approval of the version to be published.
Acknowledgements
Funding
The authors are grateful to Barbara J Speck for her editing at the University of Louisville.
This work was supported by the National Natural Science Foundation of China (No. 71303138).
Disclosure
Conflict of interest
The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethi-
The authors declare no conflicts of interest.
References Ajzen I (2011) The theory of planned behaviour: reactions and reflections. Psychology & Health 26, 1113–1127. Ajzen I & Fishbein M (1980) Understanding Attitudes and Predicting Social Behaviour. Prentice Hall, Englewood Cliffs, NJ. Altaweel W & Alharbi M (2012) Urinary incontinence: prevalence, risk factors, and impact on health related quality of life in Saudi women. Neurourology and Urodynamics 31, 642–645. Bartoli S, Aguzzi G & Tarricone R (2010) Impact on quality of life of urinary incontinence and overactive bladder: a systematic literature review. Urology 75, 491–500. Bentler PM & Yuan K-H (1999) Structural equation modeling with small samples: test statistics. Multivariate Behavioral Research 34, 181–197. Corrigan PW & Watson AC (2002) The paradox of self-stigma and mental illness. Clinical Psychology: Science and Practice 9, 35–53. Donnell M, Lose G, Sykes D, Voss S & Hunskaar S (2005) Help-seeking behaviour and associated factors among women with urinary incontinence in France, Germany, Spain and the United Kingdom. European Urology 47, 385–392. El-Azab AS & Shaaban OM (2010) Measuring the barriers against seeking consultation for urinary incontinence among Middle Eastern women. BioMedCentral Womens Health 10, 3.
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Elbiss HM, Osman N & Hammad FT (2013) Social impact and healthcareseeking behavior among women with urinary incontinence in the United Arab Emirates. International Journal of Gynecology & Obstetrics 122, 136–139. Elenskaia K, Haidvogel K, Heidinger C, Doerfler D, Umek W & Hanzal E (2011) The greatest taboo: urinary incontinence as a source of shame and embarrassment. The Central European Journal of Medicine 123, 607–610. Fife BL & Wright ER (2000) The dimensionality of stigma: a comparison of its impact on the self of persons with HIV/AIDS and cancer. Journal of Health and Social Behavior 41, 50– 67. Fischer EH & Turner JL (1970) Orientations to seeking professional help: development and research utility of an attitude scale. Journal of Consulting and Clinical Psychology 35, 79–90. Goffman E (1963) Stigma: Notes on the Management of Spoiled Identity. Prentice-Hall, Eaglewood Cliffs, NJ. Hackler AH, Vogel DL & Wade NG (2010) Attitudes toward seeking professional help for an eating disorder: the role of stigma and anticipated outcomes. Journal of Counseling and Development 88, 424–431. Hagglund D & Wadensten B (2007) Fear of humiliation inhibits women’s careseeking behaviour for long-term urinary incontinence. Scandinavian Journal of Caring Sciences 21, 305–312.
Holroyd-Leduc JM, Mehta KM & Covinsky KE (2004) Urinary incontinence and its association with death, nursing home admission, and functional decline. Journal of the American Geriatrics Society 52, 712–718. Horrocks S, Somerset M, Stoddart H & Peters TJ (2004) What prevents older people from seeking treatment for urinary incontinence? A qualitative exploration of barriers to the use of community continence services. Family Practice 21, 689–696. Hsieh CH, Su TH, Chang ST, Lin SH, Lee MC & Lee MY (2008) Prevalence of and attitude toward urinary incontinence in postmenopausal women. International Journal of Gynecology & Obstetrics 100, 171–174. Huang L, Zhang SW, Wu SL, Ma L & Deng XH (2008) The Chinese version of ICIQ: a useful tool in clinical practice and research on urinary incontinence. Neurourology and Urodynamics 27, 522–524. Kinchen KS, Burgio K, Diokno AC, Fultz NH, Bump R & Obenchain R (2003) Factors associated with women’s decisions to seek treatment for urinary incontinence. Journal of Women’s Health 12, 687–698. Link BG & Phelan JC (2001) Conceptualizing stigma. Annual Review of Sociology 27, 363–385. Link BG, Cullen FT, Struening EL, Shrout PE & Dohrenwend BP (1989) A modified labeling theory approach to mental disorders: an empirical assessment.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
Original article American Sociological Review 54, 400–423. Markland AD, Richter HE, Fwu CW, Eggers P & Kusek JW (2011) Prevalence and trends of urinary incontinence in adults in the United States, 2001 to 2008. Journal of Urology 186, 589–593. Masuda A, Anderson PL & Edmonds J (2012) Help-seeking attitudes, mental health stigma, and self-concealment among African American college students. Journal of Black Studies 43, 773–886. Minassian VA, Drutz HP & Al-Badr A (2003) Urinary incontinence as a worldwide problem. International Journal of Gynecology & Obstetrics 82, 327–338. Mitteness LS & Barker JC (1995) Stigmatizing a “normal” condition: urinary incontinence in late life. Medical Anthropology Quarterly 9, 188–210. Saleh N, Bener A, Khenyab N, Al-Mansori Z & Al Muraikhi A (2005) Prevalence, awareness and determinants of health care-seeking behaviour for uri-
Attitudes towards UI treatment in women nary incontinence in Qatari women: a neglected problem? Maturitas 50, 58– 65. Su J, Wen J & Wei Z (2006) The symptom severity and urodynamic parameters among women with stress urinary incontinence. Shandong Medicine 46, 18–19. Vogel DL, Wade NG & Haake S (2006) Measuring the self-stigma associated with seeking psychological help. Journal of Counseling Psychology 53, 325–337. Vogel DL, Wade NG & Hackler AH (2007) Perceived public stigma and the willingness to seek counseling: the mediating roles of self-stigma and attitudes toward counseling. Journal of Counseling Psychology 54, 40–50. Wan X, Wang C, Xu D, Guan X, Sun T & Wang K (2014) Disease stigma and its mediating effect on the relationship between symptom severity and quality of life among community-dwelling women with stress urinary incontinence: a study from a Chinese city.
Journal of Clinical Nursing 23, 2170– 2179. Wrigley S, Jackson H, Judd F & Komiti A (2005) Role of stigma and attitudes toward help-seeking from a general practitioner for mental health problems in a rural town. Australian and New Zealand Journal of Psychiatry 39, 514–521. Wu C, Liu Y & Wang K (2012) Analysis on confirmatory factors of revised social impact scale applied for female patients with urinary incontinent. Chinese Nursing Research 26, 2680– 2682. Yuan HB, Williams BA & Liu M (2011) Attitudes toward urinary incontinence among community nurses and community-dwelling older people. Journal of Wound, Ostomy, and Continence Nursing 38, 184–189. Zhu L, Lang J, Liu C, Han S, Huang J & Li X (2009) The epidemiological study of women with urinary incontinence and risk factors for stress urinary incontinence in China. Menopause 16, 831–836.
The Journal of Clinical Nursing (JCN) is an international, peer reviewed journal that aims to promote a high standard of clinically related scholarship which supports the practice and discipline of nursing. For further information and full author guidelines, please visit JCN on the Wiley Online Library website: http:// wileyonlinelibrary.com/journal/jocn
Reasons to submit your paper to JCN: High-impact forum: one of the world’s most cited nursing journals, with an impact factor of 1316 – ranked 21/101 (Nursing (Social Science)) and 25/103 Nursing (Science) in the 2012 Journal Citation Reportsâ (Thomson Reuters, 2012). One of the most read nursing journals in the world: over 19 million full text accesses in 2011 and accessible in over 8000 libraries worldwide (including over 3500 in developing countries with free or low cost access). Early View: fully citable online publication ahead of inclusion in an issue. Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jcnur. Positive publishing experience: rapid double-blind peer review with constructive feedback. Online Open: the option to make your article freely and openly accessible to non-subscribers upon publication in Wiley Online Library, as well as the option to deposit the article in your preferred archive.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
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Effects of stigma on Chinese women’s attitudes towards seeking treatment for urinary incontinence Cuili Wang, Jingjing Li, Xiaojuan Wan, Xiaojuan Wang, Robert L. Kane and Kefang Wang
Aims and objectives. To examine whether and how stigma influences attitudes towards seeking treatment for urinary incontinence, and whether its effect varies by symptom severity. Background. Urinary incontinence is prevalent among women, but few seek treatment. Negative attitudes towards urinary incontinence treatment inhibit from seeking care. Urinary incontinence is a stigmatised attribute. However, the relationship between stigma and attitudes towards seeking treatment for urinary incontinence has not been well understood. Design. This was a cross-sectional community-based study. Methods. We enrolled a sample of 305 women aged 40–65 years with stress urinary incontinence from three communities in a Chinese city between May–October in 2011. Data were collected on socio-demographic characteristics, urinary incontinence symptoms, stigma and attitudes towards seeking treatment for urinary incontinence using a self-reported questionnaire. Effects of stigma were analysed using path analysis. Results. Attitudes towards seeking treatment for urinary incontinence were generally negative. For the total sample, all the stigma domains of social rejection, social isolation and internalised shame had direct negative effects on treatmentseeking attitudes. The public stigma domain of social rejection also indirectly affected treatment-seeking attitudes through increasing social isolation, as well as through increasing social isolation and then internalised shame. The final model accounted for 28% of the variance of treatment-seeking attitudes. Symptom severity influenced the strength of paths: the effect of internalised shame was higher in women with more severe urinary incontinence. Conclusions. Stigma enhances the formation of negative attitudes towards seeking treatment for urinary incontinence; public stigma affects treatment-seeking attitudes through internalisation of social messages. Relevance to clinical practice. Stigma reduction may help incontinent women to form positive treatment-seeking attitudes and engage them in treatment. Interventions should specifically target the self-stigma domains of social isolation and
Authors: Cuili Wang, PhD, Associate Professor, School of Nursing, Shandong University, Jinan, China; Jingjing Li, BSN, RN, MMed Candidate, School of Nursing, Shandong University, Jinan, China; Xiaojuan Wan, RN, MMed, School of Nursing, Yangzhou University, Yangzhou, China; Xiaojuan Wang, BSN, RN, MMed Candidate, School of Nursing, Shandong University, Jinan, China; Robert L. Kane, MD, Professor, School of Public Health, University of Minnesota, Minneapolis, MN, USA; Kefang Wang, PhD,
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What does this paper contribute to the wider global clinical community?
• This paper reveals that stigma
•
•
enhances the formation of negative attitudes towards seeking treatment for urinary incontinence. This paper also finds that the effect of social rejection on treatment-seeking attitudes is mediated by social isolation and internalised shame. This paper implies that stigma reduction may improve incontinent women’s engagement in treatment, and interventions should specifically target social isolation and internalised shame.
RN, Associate Dean and Professor, School of Nursing, Shandong University, Jinan, China Correspondence: Kefang Wang, Associate Dean and Professor, School of Nursing, Shandong University, 44 Wenhuaxi Road, Jinan 250012, China. Telephone: +86 531 88382201. E-mail: [email protected] The first and second authors contributed equally to this work.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121, doi: 10.1111/jocn.12729
Original article
Attitudes towards UI treatment in women
internalised shame in women with urinary incontinence to most efficiently increase their use of health care.
Key words: attitudes, China, stigma, treatment seeking, urinary incontinence, women Accepted for publication: 12 October 2014
Introduction and background Urinary incontinence (UI) is a common health concern among adult women that has negative physical, psychosocial and economic consequences (Minassian et al. 2003, Holroyd-Leduc et al. 2004, Bartoli et al. 2010). Stress urinary incontinence (SUI), a popular subtype, affects half of incontinent women (Markland et al. 2011). However, a large proportion of women with UI never seek health care for UI worldwide (Kinchen et al. 2003, Zhu et al. 2009, El-Azab & Shaaban 2010, Elbiss et al. 2013). A Chinese survey with a national representative sample of women with UI found that only 25% of them had consulted with physicians about their symptoms (Zhu et al. 2009). Negative attitudes towards UI treatment were cited to explain poor treatment-seeking behaviours for incontinence. UI was commonly viewed as a natural outcome of ageing and/or childbirth, leading to the belief that there was no need to seek treatment (Kinchen et al. 2003, Horrocks et al. 2004, Saleh et al. 2005, Hsieh et al. 2008, El-Azab & Shaaban 2010, Elbiss et al. 2013). Also, it was found that the conservative or surgical treatment for UI was always viewed as ineffective or unacceptable by affected individuals; UI was even viewed as incurable (Hsieh et al. 2008, Elbiss et al. 2013). In addition, some people are not comfortable discussing personal matters with others and worry about the negative reactions associated with the disclosure of UI (Horrocks et al. 2004). Research has found that people with more positive attitudes towards treatment for UI were more likely to seek care, such as surgery acceptable as UI treatment and willing to take long-term medication (Kinchen et al. 2003, Donnell et al. 2005). Stigma has been shown to be an important determinant of forming negative attitudes towards care counselling in other stigmatised disease groups, such as mental illness (Wrigley et al. 2005, Hackler et al. 2010). Stigma, described as a flaw that discredits individuals for socially unacceptable, physical or psychosocial characteristics, could change affected people ‘from a whole and usual person to a © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
tainted, discounted one’ (Goffman 1963). Public stigma and self-stigma are the two main types of stigma (Corrigan & Watson 2002). Public stigma signifies negative perceptions about a disease held by society, leading to negative reactions (e.g. stereotyping, prejudice and discrimination) towards individuals with that disease; self-stigma signifies the perceptions that affected individuals have about themselves (Corrigan & Watson 2002). Living in a society that stigmatises individuals’ conditions, affected individuals come to accept and internalise these stigmatising perceptions held by society (Link & Phelan 2001). These individuals may have negative reactions and begin to label themselves as less valued, leading to decreased self-efficacy and self-esteem (Corrigan & Watson 2002, Altaweel & Alharbi 2012). Loss of bladder control is linked to feelings of personal incompetence for adults (Horrocks et al. 2004). Stigma associated with UI was significantly higher than that of other stigmatised diseases, such as depression and cancer (Elenskaia et al. 2011). UI-related stigma has been conceptualised as having three dimensions: social rejection, social isolation and internalised shame (Fife & Wright 2000, Wu et al. 2012). Social rejection represents experienced discrimination at work and in society (i.e. public stigma); social isolation and internalised shame refer to the internalised experience of being stigmatised (i.e. self-stigma): feelings of loneliness, inequality with others and uselessness; feelings of self-reproach, embarrassment and shame due to illness respectively (Fife & Wright 2000). UI-related stigma has been identified as a barrier to care-seeking behaviour, but these previous studies used a single-item stigma measure instead of a conceptualised stigma measure (Hagglund & Wadensten 2007, Hsieh et al. 2008). In addition, the mechanism through which stigma affects attitudes towards seeking treatment has not been well understood among UI populations. However, substantial studies on other stigmatised diseases may provide insights into the relationship between stigma and attitudes towards care seeking (Wrigley et al. 2005, Vogel et al. 2006, 2007, Hackler et al. 2010, Ma-
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Original article American Sociological Review 54, 400–423. Markland AD, Richter HE, Fwu CW, Eggers P & Kusek JW (2011) Prevalence and trends of urinary incontinence in adults in the United States, 2001 to 2008. Journal of Urology 186, 589–593. Masuda A, Anderson PL & Edmonds J (2012) Help-seeking attitudes, mental health stigma, and self-concealment among African American college students. Journal of Black Studies 43, 773–886. Minassian VA, Drutz HP & Al-Badr A (2003) Urinary incontinence as a worldwide problem. International Journal of Gynecology & Obstetrics 82, 327–338. Mitteness LS & Barker JC (1995) Stigmatizing a “normal” condition: urinary incontinence in late life. Medical Anthropology Quarterly 9, 188–210. Saleh N, Bener A, Khenyab N, Al-Mansori Z & Al Muraikhi A (2005) Prevalence, awareness and determinants of health care-seeking behaviour for uri-
Attitudes towards UI treatment in women nary incontinence in Qatari women: a neglected problem? Maturitas 50, 58– 65. Su J, Wen J & Wei Z (2006) The symptom severity and urodynamic parameters among women with stress urinary incontinence. Shandong Medicine 46, 18–19. Vogel DL, Wade NG & Haake S (2006) Measuring the self-stigma associated with seeking psychological help. Journal of Counseling Psychology 53, 325–337. Vogel DL, Wade NG & Hackler AH (2007) Perceived public stigma and the willingness to seek counseling: the mediating roles of self-stigma and attitudes toward counseling. Journal of Counseling Psychology 54, 40–50. Wan X, Wang C, Xu D, Guan X, Sun T & Wang K (2014) Disease stigma and its mediating effect on the relationship between symptom severity and quality of life among community-dwelling women with stress urinary incontinence: a study from a Chinese city.
Journal of Clinical Nursing 23, 2170– 2179. Wrigley S, Jackson H, Judd F & Komiti A (2005) Role of stigma and attitudes toward help-seeking from a general practitioner for mental health problems in a rural town. Australian and New Zealand Journal of Psychiatry 39, 514–521. Wu C, Liu Y & Wang K (2012) Analysis on confirmatory factors of revised social impact scale applied for female patients with urinary incontinent. Chinese Nursing Research 26, 2680– 2682. Yuan HB, Williams BA & Liu M (2011) Attitudes toward urinary incontinence among community nurses and community-dwelling older people. Journal of Wound, Ostomy, and Continence Nursing 38, 184–189. Zhu L, Lang J, Liu C, Han S, Huang J & Li X (2009) The epidemiological study of women with urinary incontinence and risk factors for stress urinary incontinence in China. Menopause 16, 831–836.
The Journal of Clinical Nursing (JCN) is an international, peer reviewed journal that aims to promote a high standard of clinically related scholarship which supports the practice and discipline of nursing. For further information and full author guidelines, please visit JCN on the Wiley Online Library website: http:// wileyonlinelibrary.com/journal/jocn
Reasons to submit your paper to JCN: High-impact forum: one of the world’s most cited nursing journals, with an impact factor of 1316 – ranked 21/101 (Nursing (Social Science)) and 25/103 Nursing (Science) in the 2012 Journal Citation Reportsâ (Thomson Reuters, 2012). One of the most read nursing journals in the world: over 19 million full text accesses in 2011 and accessible in over 8000 libraries worldwide (including over 3500 in developing countries with free or low cost access). Early View: fully citable online publication ahead of inclusion in an issue. Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jcnur. Positive publishing experience: rapid double-blind peer review with constructive feedback. Online Open: the option to make your article freely and openly accessible to non-subscribers upon publication in Wiley Online Library, as well as the option to deposit the article in your preferred archive.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
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Original article
The International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form (ICIQ-UI SF) was used to measure the severity of UI symptoms (Huang et al. 2008). The responses on the frequency, amount of urine leakage and the impact of UI on quality of life were summed. The sum-scores for the ICIQ-UI SF (total score 0– 21) could be divided into the following three severity categories: mild (0–7), moderate (8–13) and severe (14–21) (Su et al. 2006). It was recoded into a dichotomous variable (mild vs. moderate/severe), reflecting less severe and more severe UI. Stigma The Social Impact Scale (SIS) was used to assess UI-related stigma perceived by participants (Wu et al. 2012). The SIS is an 18-item scale with three dimensions: social rejection, social isolation and internalised shame. Confirmatory factor analysis validated the three-factor solution that fit the data among women with UI (Wu et al. 2012). Responses range from 1 (strongly disagree)–4 (strongly agree). A higher score represents a higher level of UI-related stigma. We confirmed the good reliabilities of the three dimensions in our study, with Cronbach’s alpha coefficients of 083, 080 and 089 respectively. Attitudes towards seeking treatment for UI To measure individuals’ attitudes towards seeking treatment for UI, a scale was developed based on Fischer’s framework of attitudes towards mental illness treatment (Fischer & Turner 1970). The scale measures the recognition of need for UI treatment, openness to health professionals regarding one’s UI symptoms, tolerance of other people’s reactions associated with disclosure of UI and confidence in UI treatment. Items were discussed by an expert panel to clarify wording and to confirm the content validity. The scale has excellent content validity, with scale-level Content Validity Index (CVI) of 092 and item-level CVIs ranging from 085–1. The scale contains 24 items, each with a five-point response ranging from 1 (strongly disagree)–5 (strongly agree). The total score of all items represents the individual’s attitudes towards UI treatment, with a higher score reflecting more positive attitudes towards UI treatment. The scale has good reliability in this study, with a Cronbach’s alpha coefficient of 075.
Statistical analysis Pearson correlations for social rejection, social isolation, internalised shame and attitudes towards UI treatment were computed in SPSS version 19.0 (SPSS, Inc., Chicago, © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
Attitudes towards UI treatment in women
IL, USA). Path analysis was conducted using AMOS version 19.0 (IBM Corp., Chicago, IL, USA) to test the theoretical model for the total sample. Then, multi-group path analysis was applied to examine whether the regression paths and the explained variances of treatment-seeking attitudes may vary across subsamples of mild and moderate/severe UI. Several indices were used to determine whether the hypothesised model fit the observed data. A small and nonsignificant chi-square value as the original fit index and the root mean square error of approximation (RMSEA) 196) (Fig. 2). In addition, the association of social rejection with social isolation (b = 041 vs. b = 062) was significantly lower (CR > 196) in the moderate/severe UI group. Table 4 demonstrates the direct effect, indirect effect and total effect of social rejection, social isolation and internalised shame. Their total effects on attitudes towards UI treatment for the total sample were 031, 033 and 037 respectively. Direct and indirect effects for both social rejection and social isolation were observed, while only a direct effect for internalised shame was observed. The total effects of social rejection and social isolation were lower, but that for internalised shame was higher in the moderate/severe UI group. The final model for the total sample accounted for 22% of the variance of social isolation, 22% of internalised shame and 28% of attitudes towards UI treatment respectively. Significant differences in the explained variance (CR > 195) between the two subsamples of mild and moderate/severe UI were found in internalised shame (26% vs. 13%), but not (CR < 195) in social isolation
Table 3 Two group nested models and v2 differences with increased constraints
Model
v2
df
v2/df
p
GFI
AGFI
IFI
CFI
TLI
RMSEA
Model1 D v2
Model1 p
1 2 3 4
325 18738 1218 27608
2 7 5 10
1625 0689 2436 2761
0197 0009 0032 0002
0995 0971 0982 0959
0947 0917 0926 0918
0995 0956 0973 0933
0995 0955 0973 0933
0971 0923 0934 0919
0045 0074 0069 0076
– 15488 8930 24358
– 0008 003 0002
1, Unconstrained model; 2, structural weight constrained model; 3, structural residual constrained model; 4, Full constrained model (structural weight and structural residual constrained model); GFI, Goodness-of-Fit Index; AGFI, Adjusted Goodness-of-Fit Index; IFI, Incremental Fit Index; CFI, Comparative Fit Index; TLI, Tucker Lewis Index; RMSEA, Root mean square error of approximation.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
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C Wang et al. Table 4 Direct and indirect effects of all stigma dimensions on attitudes towards urinary incontinence (UI) treatment for the total sample (first row) and the two subsamples of mild (second row) and moderate/severe UI (third row)
Predictor variables
Through
Social rejection (SR)
– – – SI
SI, IS
Direct effect 015 023 008
– – – IS
Total
Internalised shame (IS)
– – –
015 023 008 016 026 004
008 016 002 008 007 007 016 023 009
031 046 017
– – –
– – – 016 026 004 037 023 046
Total effect
– – –
– – – – – –
Total
Social isolation (SI)
Indirect effect
017 012 017 017 012 017 – – –
033 038 021 037 023 046
(38% vs. 16%) and treatment-seeking attitudes (34% vs. 24%).
Discussion This study elaborated on the complex relationships between multiple dimensions of stigma and attitudes towards seeking treatment for UI among middle-aged women who have the highest prevalence of SUI (Zhu et al. 2009). For the total sample, social rejection was positively associated with social isolation and internalised shame, and these three dimensions of stigma were negatively directly associated with attitudes towards UI treatment respectively. In addition, social isolation and internalised shame mediated the association of social rejection with attitudes towards UI treatment. The overall pattern of their relationships held true for the two subgroups with less severe and more severe UI, but some structural differences existed. The effect of internalised shame was stronger, while those for social rejection and social isolation were weaker in the moderate/severe UI group, compared to those in the mild UI group.
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We found that SUI women who perceived greater social rejection, social isolation and internalised shame were more likely to report negative attitudes towards UI treatment for the total sample. This finding could be explained using the theory of reasoned action developed by Ajzen and Fishbein (Ajzen & Fishbein 1980). Based on this theory, a primary predictor of intentions to seek treatment is individuals’ attitudes towards treatment seeking. These attitudes are shaped by evaluating the expectations the person has about the outcome of seeking treatment (e.g. the extent of stigma the individual experiences). UI is labelled as incompetence for adults by the public or self-labelled by the affected individual in both Eastern and Western cultures (Horrocks et al. 2004, Yuan et al. 2011). Because of labelling, a range of negative consequences were anticipated to occur if individuals with UI were to seek treatment, such as discrimination, rejection, shame, embarrassment and humiliation (Kinchen et al. 2003, Hagglund & Wadensten 2007, Hsieh et al. 2008). Therefore, people hide their UI problems and forego treatment to reduce the detrimental consequences related to stigma. This phenomenon is viewed as label avoidance, which is an inclination to deny problems and avoid seeking care that can negatively label the sufferer (Link et al. 1989). This is supported by the negative association of social rejection, social isolation and internalised shame with attitudes towards UI treatment observed in this study. Our results also showed that the effect of social rejection on attitudes towards UI treatment was mediated by social isolation and internalised shame. The result provides support to modified labelling theory, which maintains that public stigma can be internalised as self-stigma, and stigma is harmful primarily because of the negative impact it has on individuals’ perceptions (Link et al. 1989). It is possible that UI women who perceived more social rejection are more likely to internalise these negative reactions than those with less social rejection, and internalisation of that stigma plays a part in forming the negative attitudes towards treatment. According to our data, social rejection indirectly affected attitudes towards UI treatment through two paths. On the one hand, social rejection indirectly affected attitudes towards UI treatment by increasing social isolation. Social rejection refers to a spectrum of negative reactions delivered by the public that devalued individuals experienced, such as gaining less respect from others and being viewed as incompetence (Fife & Wright 2000). Women with UI who perceived more social rejection were more likely to experience social isolation. This parallels previous data that for the fear of public disclosure of incontinence symptoms and accompanied stereotypes, UI individuals isolated them© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
Original article
selves at home, used their own apartment toilets and avoided visitors (Mitteness & Barker 1995). The less able persons are to participate in normal social life, the more isolated they become. Thus, they have more tendency to form negative attitudes towards UI treatment, in turn, reducing likelihood of seeking treatment. On the other hand, the negative effect of social rejection on attitudes towards UI treatment took place through social isolation and internalised shame sequentially. Specifically, perceptions of social rejection contributed to the experience of social isolation and then internalised shame, which, in turn, influenced attitudes towards UI treatment. The stereotype held by society towards people with UI symptoms is internalised by the affected individuals and leaves them with an inferior or incompetent self-perception. Admitting the need for help may be the equivalent of an acknowledgement of their devaluation or incompetence, which is worse than the current suffering (Vogel et al. 2007). Thus, a person living with higher internalised shame may decide not to seek treatment for UI to preserve a positive self-image (Hagglund & Wadensten 2007). The two paths through which social rejection operates to affect attitudes towards UI treatment are similar to previous results that self-stigma mediates the association of public stigma with attitudes towards counselling for mental illness (Vogel et al. 2007). These results highlight a major need for people with higher self-stigma to be helped to challenge their negative beliefs about the disease. In addition, the severity of UI symptoms influenced the relationship of stigma with treatment-seeking attitudes. Their relationship in the mild UI group was similar to that in the total sample. However, the direct effects of social rejection and social isolation on treatment-seeking attitudes were not significant, but that for internalised shame was significantly higher in the moderate/severe UI group. These cross-group differences in the strength of paths may be attributable to stronger self-labelling and negative treatment-seeking attitudes reported by women with more severe UI in this study. Despite these structural differences between the two subgroups, the subgroup models fit as well as the model for the total sample. Essentially, the results validated the theoretical hypotheses that UI-related stigma enhances the formation of negative treatment-seeking attitudes, and the effect of public stigma is mediated by self-stigma. Although social rejection, social isolation and internalised shame were manifested differently within an individual, they had indispensable effects on the stigmatised individual, and their impacts affected each other. It is necessary and important to keep perceptions of stigma levels (i.e. social rejection) and endorsement of stigma (i.e. social isolation © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
Attitudes towards UI treatment in women
and internalised shame) conceptually distinct (Fife & Wright 2000). The strong direct link of social rejection with attitudes towards UI treatment for the total sample also points to the importance of reducing the negative stereotyping about this symptom in popular media and surroundings. The differential direct effects of social rejection across the two UI severity groups may guide appropriate treatment-seeking behaviour change strategies for the target subpopulations. This study has several limitations. First, this was a crosssectional study, limiting causal inference between stigma and attitudes towards UI treatment. Second, although attitudes towards treatment have been presented as an important predictor of intentions or behaviours (Ajzen 2011), future research is needed to determine whether different types of stigma could predict actual treatment-seeking behaviours. Finally, the sample consisted entirely of SUI women from three communities in a Chinese city. Findings may not be generalised to women of other areas or with different types of UI.
Conclusions Attitudes towards seeking treatment for UI are generally negative and predicted by UI-related stigma. Public stigma affects treatment-seeking attitudes through internalisation of social messages: the impact of social rejection on attitudes is mediated by social isolation and internalised shame. Comprehensive interventions addressing stigmatisation of UI by both the affected individual and the society may be warranted to increase use of UI treatment.
Relevance to clinical practice This study provides valuable insights into the links between stigma and attitudes towards seeking treatment for UI and reveals a plausible mechanism of how social rejection functions as a predictor of internalisation of social message to enhance the formation of negative attitudes towards UI treatment. These findings shed light on the importance of social isolation and internalised shame as more proximal factors in predicting attitudes towards UI treatment. This work may result in more cost-effective interventions aimed to promote individuals to use health care for UI because social rejection cannot be altered without massive social action (Vogel et al. 2007). Health professionals should address patient’s negative perceptions associated with UI and assist them in dealing with the negative impacts of internalised stigma. However, the close interrelation of social rejection with social isolation and internalised shame rein-
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forces an implication that changing society’s misperceptions of UI continues to be an essential strategy. These findings further underline the need to rethink in complex ways the causal processes underlying care-seeking behaviours among stigmatised people with UI.
cal_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content and (3) final approval of the version to be published.
Acknowledgements
Funding
The authors are grateful to Barbara J Speck for her editing at the University of Louisville.
This work was supported by the National Natural Science Foundation of China (No. 71303138).
Disclosure
Conflict of interest
The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethi-
The authors declare no conflicts of interest.
References Ajzen I (2011) The theory of planned behaviour: reactions and reflections. Psychology & Health 26, 1113–1127. Ajzen I & Fishbein M (1980) Understanding Attitudes and Predicting Social Behaviour. Prentice Hall, Englewood Cliffs, NJ. Altaweel W & Alharbi M (2012) Urinary incontinence: prevalence, risk factors, and impact on health related quality of life in Saudi women. Neurourology and Urodynamics 31, 642–645. Bartoli S, Aguzzi G & Tarricone R (2010) Impact on quality of life of urinary incontinence and overactive bladder: a systematic literature review. Urology 75, 491–500. Bentler PM & Yuan K-H (1999) Structural equation modeling with small samples: test statistics. Multivariate Behavioral Research 34, 181–197. Corrigan PW & Watson AC (2002) The paradox of self-stigma and mental illness. Clinical Psychology: Science and Practice 9, 35–53. Donnell M, Lose G, Sykes D, Voss S & Hunskaar S (2005) Help-seeking behaviour and associated factors among women with urinary incontinence in France, Germany, Spain and the United Kingdom. European Urology 47, 385–392. El-Azab AS & Shaaban OM (2010) Measuring the barriers against seeking consultation for urinary incontinence among Middle Eastern women. BioMedCentral Womens Health 10, 3.
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Elbiss HM, Osman N & Hammad FT (2013) Social impact and healthcareseeking behavior among women with urinary incontinence in the United Arab Emirates. International Journal of Gynecology & Obstetrics 122, 136–139. Elenskaia K, Haidvogel K, Heidinger C, Doerfler D, Umek W & Hanzal E (2011) The greatest taboo: urinary incontinence as a source of shame and embarrassment. The Central European Journal of Medicine 123, 607–610. Fife BL & Wright ER (2000) The dimensionality of stigma: a comparison of its impact on the self of persons with HIV/AIDS and cancer. Journal of Health and Social Behavior 41, 50– 67. Fischer EH & Turner JL (1970) Orientations to seeking professional help: development and research utility of an attitude scale. Journal of Consulting and Clinical Psychology 35, 79–90. Goffman E (1963) Stigma: Notes on the Management of Spoiled Identity. Prentice-Hall, Eaglewood Cliffs, NJ. Hackler AH, Vogel DL & Wade NG (2010) Attitudes toward seeking professional help for an eating disorder: the role of stigma and anticipated outcomes. Journal of Counseling and Development 88, 424–431. Hagglund D & Wadensten B (2007) Fear of humiliation inhibits women’s careseeking behaviour for long-term urinary incontinence. Scandinavian Journal of Caring Sciences 21, 305–312.
Holroyd-Leduc JM, Mehta KM & Covinsky KE (2004) Urinary incontinence and its association with death, nursing home admission, and functional decline. Journal of the American Geriatrics Society 52, 712–718. Horrocks S, Somerset M, Stoddart H & Peters TJ (2004) What prevents older people from seeking treatment for urinary incontinence? A qualitative exploration of barriers to the use of community continence services. Family Practice 21, 689–696. Hsieh CH, Su TH, Chang ST, Lin SH, Lee MC & Lee MY (2008) Prevalence of and attitude toward urinary incontinence in postmenopausal women. International Journal of Gynecology & Obstetrics 100, 171–174. Huang L, Zhang SW, Wu SL, Ma L & Deng XH (2008) The Chinese version of ICIQ: a useful tool in clinical practice and research on urinary incontinence. Neurourology and Urodynamics 27, 522–524. Kinchen KS, Burgio K, Diokno AC, Fultz NH, Bump R & Obenchain R (2003) Factors associated with women’s decisions to seek treatment for urinary incontinence. Journal of Women’s Health 12, 687–698. Link BG & Phelan JC (2001) Conceptualizing stigma. Annual Review of Sociology 27, 363–385. Link BG, Cullen FT, Struening EL, Shrout PE & Dohrenwend BP (1989) A modified labeling theory approach to mental disorders: an empirical assessment.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
Original article American Sociological Review 54, 400–423. Markland AD, Richter HE, Fwu CW, Eggers P & Kusek JW (2011) Prevalence and trends of urinary incontinence in adults in the United States, 2001 to 2008. Journal of Urology 186, 589–593. Masuda A, Anderson PL & Edmonds J (2012) Help-seeking attitudes, mental health stigma, and self-concealment among African American college students. Journal of Black Studies 43, 773–886. Minassian VA, Drutz HP & Al-Badr A (2003) Urinary incontinence as a worldwide problem. International Journal of Gynecology & Obstetrics 82, 327–338. Mitteness LS & Barker JC (1995) Stigmatizing a “normal” condition: urinary incontinence in late life. Medical Anthropology Quarterly 9, 188–210. Saleh N, Bener A, Khenyab N, Al-Mansori Z & Al Muraikhi A (2005) Prevalence, awareness and determinants of health care-seeking behaviour for uri-
Attitudes towards UI treatment in women nary incontinence in Qatari women: a neglected problem? Maturitas 50, 58– 65. Su J, Wen J & Wei Z (2006) The symptom severity and urodynamic parameters among women with stress urinary incontinence. Shandong Medicine 46, 18–19. Vogel DL, Wade NG & Haake S (2006) Measuring the self-stigma associated with seeking psychological help. Journal of Counseling Psychology 53, 325–337. Vogel DL, Wade NG & Hackler AH (2007) Perceived public stigma and the willingness to seek counseling: the mediating roles of self-stigma and attitudes toward counseling. Journal of Counseling Psychology 54, 40–50. Wan X, Wang C, Xu D, Guan X, Sun T & Wang K (2014) Disease stigma and its mediating effect on the relationship between symptom severity and quality of life among community-dwelling women with stress urinary incontinence: a study from a Chinese city.
Journal of Clinical Nursing 23, 2170– 2179. Wrigley S, Jackson H, Judd F & Komiti A (2005) Role of stigma and attitudes toward help-seeking from a general practitioner for mental health problems in a rural town. Australian and New Zealand Journal of Psychiatry 39, 514–521. Wu C, Liu Y & Wang K (2012) Analysis on confirmatory factors of revised social impact scale applied for female patients with urinary incontinent. Chinese Nursing Research 26, 2680– 2682. Yuan HB, Williams BA & Liu M (2011) Attitudes toward urinary incontinence among community nurses and community-dwelling older people. Journal of Wound, Ostomy, and Continence Nursing 38, 184–189. Zhu L, Lang J, Liu C, Han S, Huang J & Li X (2009) The epidemiological study of women with urinary incontinence and risk factors for stress urinary incontinence in China. Menopause 16, 831–836.
The Journal of Clinical Nursing (JCN) is an international, peer reviewed journal that aims to promote a high standard of clinically related scholarship which supports the practice and discipline of nursing. For further information and full author guidelines, please visit JCN on the Wiley Online Library website: http:// wileyonlinelibrary.com/journal/jocn
Reasons to submit your paper to JCN: High-impact forum: one of the world’s most cited nursing journals, with an impact factor of 1316 – ranked 21/101 (Nursing (Social Science)) and 25/103 Nursing (Science) in the 2012 Journal Citation Reportsâ (Thomson Reuters, 2012). One of the most read nursing journals in the world: over 19 million full text accesses in 2011 and accessible in over 8000 libraries worldwide (including over 3500 in developing countries with free or low cost access). Early View: fully citable online publication ahead of inclusion in an issue. Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jcnur. Positive publishing experience: rapid double-blind peer review with constructive feedback. Online Open: the option to make your article freely and openly accessible to non-subscribers upon publication in Wiley Online Library, as well as the option to deposit the article in your preferred archive.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1112–1121
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