Adult women s experiences of urinary incontinence: a systematic review of qualitative evidence protocol

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Adult women s experiences of urinary incontinence: a systematic review of qualitative evidence protocol Adilson Mendes 1 Luiza Hoga 1 Bruna Gonçalves 1 Pamela Silva 1 Priscilla Pereira 1 1. School of Nursing, University of São Paulo; The Brazilian Centre for Evidence-based Healthcare: an Affiliate Center of the Joanna Briggs Institute Corresponding author Adilson Mendes adilson@unifap.br Review question/objective The objective of this review is to identify the best available evidence on the experience of urinary incontinence by women. Background Urinary incontinence (UI) dramatically affects the physical, emotional, psychological and social aspects of and the quality of life of women who suffer from the condition. Men and women experience the consequences of UI independently of their age. Aging women are more affected by this condition. 1 The significant increase in longevity in women from 73.2 in 1997 to 76.5 in 2007 2 contributed to the aggravation of UI rates. Currently, UI is an epidemic medical problem. 3 Urinary incontinence is defined by the International Continence Society as involuntary urine loss, leading to social and/or hygienic problems. There are three common types of UI. Stress UI (SUI) refers to urine loss provoked by exertion. Urge UI refers to a constant sense of urgency to urinate. Mixed UI (MUI) refers to urine leakage resulting from SUI and urge UI. 4 Approximately 200 million people worldwide are affected by UI. 5 Urinary incontinence rates vary according to the population studied and the type of UI that is analyzed. It is estimated that between 10% and 55% of females from 15 to 64 years of age are affected by UI; SUI has the highest prevalence. 5 A multicenter study consisting of 17,080 subjects of both sexes was performed in multiple European countries 6 to estimate the UI rate. The prevalence of UI was 44% in France, 42% in the United Kingdom (UK), 41% in Germany and 23% in Spain. Approximately only 24% of the women in Spain and the UK who were affected by any type of UI consulted a doctor regarding this condition. The search for medical support was higher in France (33%) and Germany (40%). 6 The prevalence of UI in a study in China, with a sample of 19,024 women aged 20-99 years, was 30.9%. 7 Among the women who visited a gynecological clinic in the United Arab Emirates, the prevalence of UI was 42.2%. 8 These women reported that aspects of their doi: 10.11124/jbisrir-2015-1789 Page 103

lives most affected by UI were physical and social activities, and sex. Nevertheless, 50.5% of the women did not seek medical care. The hope for a spontaneous resolution of UI (61.9%), embarrassment at being examined by a clinician (35.9%), the belief that urine leakage is a normal occurrence (31.5%), and lack of awareness regarding the availability of treatment (23.9%) were the subjects reasons for not seeking UI treatment. 7 Other researchers reported that an average of 25% of women affected by UI seek medical treatment. 6,9 Many efforts have been made to improve the quality of life of women with UI but these efforts need to include a better understanding of the degree to which women are affected by UI. 1,10 There is evidence that UI seriously affects the daily life of women with this condition. The main difficulties associated with UI are related to the lack of an avenue for those affected by UI to share their UI problems and the stigma associated with the condition. As a consequence, the women experience difficulties establishing constructive interpersonal interactions with others experiencing similar problems. Women may experience fear and shame regarding UI. Typically, the consequences of this condition are experienced by these women alone, leading to isolation. Often this is because of the social stigma associated with UI. 1 As a result, women often have difficulty seeking social support and treatment. The women affected by UI may experience restrictions in sexual, social, family and occupational activities as a consequence of this condition. Their self-esteem may also be affected, and financial problems could arise because of the effect of UI on work activities. 11 The International Incontinence Society is of the view that the personal and social problems associated with UI can be demonstrated in an objective way. 12 Through a preliminary search of primary studies focusing on the experience of UI, international research on this topic was identified. Healthcare providers need to provide healthcare for women affected by UI through the best evidence available. The proposal to conduct this systematic review of qualitative evidence is timely to enhance understanding of the perspectives of women affected by UI. The identification of the similarities and differences in the experiences of women affected by UI from different cultures and social contexts can support and promote the implementation of evidence-based healthcare. A basic principle of evidencebased healthcare is ascertaining knowledge on the patient s perspective and incorporating this into the planning and implementation of healthcare. In this systematic review, the experiences of women will be considered, independent of their age, and from the physical, emotional, social and cultural perspectives. An initial search for sources was undertaken to determine whether a previous review addressing this question had been undertaken or was in progress. The Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports and the CINAHL databases were examined. No reviews, completed or in process of being conducted, focusing on the experiences related to female UI were found in these databases. A systematic review focusing on the experience of UI was undertaken and published in 2009 by Brazilian researchers. 6 It was conducted using meta-ethnography in which the focus was primarily cultural perspectives. This systematic review will approach the topic more comprehensively and will include all the qualitative studies independently of the method used in the primary studies. This systematic review aims to include all aspects of the female experience of UI in addition research findings published after 2009. Keywords Urinary Incontinence; Women; Experience doi: 10.11124/jbisrir-2015-1789 Page 104

Inclusion criteria Types of participants This review will consider studies that include all adult women (18 years of age or more) from any cultural background. Women who have suffered brain disorders, spine injury or mental deficiency will be excluded from the review. Types of intervention(s)/phenomena of interest This review will consider studies that describe women s experiences of UI. Context The context of this review considers different social and cultural settings. All experiences of UI lived by women will be considered independent of the location of the primary study s participants, including the home, clinic, hospitals, the community and other social settings. Types of studies The review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Search strategy The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by an analysis of the text words contained in the title and abstract and of the index terms used to describe article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English, Spanish, French and Portuguese will be considered for inclusion in this review. No date restrictions will be applied to the search. The databases to be searched include: CINAHL, Pubmed, PsycINFO, Lilacs, Scielo, BVS, BVS-Psi, Scopus, Embase and Sociological Abstracts. The search for unpublished studies will include the Dissertation Abstracts International and the University of São Paulo Dissertations and Thesis bank. The grey literature will also be accessed through exploration of relevant worldwide web pages to find technical reports from scientific research groups and working papers from research groups or committees. In each identified article, the search of reference lists and hand searching using internet resources will be done. Assessment of methodological quality Qualitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer. Data collection Qualitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the doi: 10.11124/jbisrir-2015-1789 Page 105

interventions, populations, study methods, outcomes of significance to the review question and specific objectives. Data synthesis Qualitative research findings will, where possible, be pooled using the JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements to represent that aggregation through assembling the findings rated according to their quality and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidencebased practice. When textual pooling is not possible, the findings will be presented in narrative form. Conflicts of interest The authors do not have any to declare. doi: 10.11124/jbisrir-2015-1789 Page 106

References 1. Higa R. Rivorêdo C.R.S.F., Campos L.K., Lopes M.H.M.L. TER. Life experiences of Brazilian women with urinary incontinence. Texto Context Enferm, Florianóp [Internet]. 2010;19(4):627 35. Available from: http://dx.doi.org/10.1590/s0104-07072010000400004 2. IBGE IBDGEE-. Observações sobre a evolução da mortalidade no Brasil : o passado, o presente e perspectivas. (Observations about the evolution of mortality in Brazil: the past, the present, and perspectives) Ministério do Planejamento, Orçamento e Gestão [Internet]. 2010;O Art. 2 o. Available from: http://www.ibge.gov.br/home/estatistica/populacao/tabuadevida/2009/notastecnicas.pdf 3. Botelho F, Silva C, Cruz F. Female urinary incontinence. Acta Urológica. 2007;79 82. Available from: http://www.apurologia.pt/pdfs/separatas/separata-07.pdf 4. Abrams P, Cardozo L, Fall M, Griffiths D, Rosier P, Ulmsten U, et al. The standardisation of terminology in lower urinary tract function: report from the standardisation sub-committee of the International Continence Society. Urology [Internet]. 2003 Jan [cited 2014 Aug 20];61(1):37 49. Available from: http://linkinghub.elsevier.com/retrieve/pii/s0090429502022434 5. Ortiz OC. Stress urinary incontinence in the gynecological practice. Int J Gynaecol Obstet [Internet]. 2004 Jul [cited 2014 Jun 25];86 Suppl 1:S6 16. Available from: http://www.ncbi.nlm.nih.gov/pubmed/15302563 6. Hunskaar S, Lose G, Sykes D, Voss S. The prevalence of urinary incontinence in women in four European countries. BJU Int [Internet]. 2004; Available from: http://onlinelibrary.wiley.com/doi/10.1111/j.1464-410x.2003.04609.x/abstract 7. Zhu L, Lang J, Liu C, Han S, Huang J, Li X. The epidemiological study of women with urinary incontinence and risk factors for stress urinary incontinence in China. Menopause J North Am Menopause Soc [Internet]. 2009 [cited 2014 Jun 5];16(4):831 6. Available from: http://www.ncbi.nlm.nih.gov/pubmed/19240656 8. Elbiss HM, Osman N, Hammad FT. Social impact and healthcare-seeking behavior among women with urinary incontinence in the United Arab Emirates. Int J Gynaecol Obstet [Internet]. International Federation of Gynecology and Obstetrics; 2013 Aug [cited 2014 Jul 2];122(2):136 9 Available from: http://www.ncbi.nlm.nih.gov/pubmed/23764126 9. Minassian VA, Drutz HP. Urinary incontinence as a worldwide problem. Int J Ginecol Obstet [Internet]. 2003;82:327 38. Available from: http://www.sciencedirect.com/science/article/pii/s0020729203002200# 10. Volkmer M., Monticelli C., Reibnitz K.S. SFF. Female urinary incontinence : a systematic review of qualitative studies. Ciência e Saúde Coletiva [Internet]. 2012;2703 16. Available from: http://www.scielo.br/pdf/csc/v17n10/19.pdf 11. Lopes MHR. Urinary incontinence restrictions in women s life. Rev Esc Enferm USP [Internet]. 2006;40(1):34 41. Available from: http://www.revistas.usp.br/reeusp/article/view/41506 12. Karl M. Luber, MD F. The definition, prevalence, and risk factors for stress urinary incontinence. Reviews in Urology. 2004;6:3 9. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/pmc1472862/ doi: 10.11124/jbisrir-2015-1789 Page 107

Appendix I: Appraisal instruments QARI appraisal instrument Insert page break doi: 10.11124/jbisrir-2015-1789 Page 108

Appendix II: Data extraction instruments QARI data extraction instrument Insert page break doi: 10.11124/jbisrir-2015-1789 Page 109

doi: 10.11124/jbisrir-2015-1789 Page 110