Background
Methods
Selecting meta-ethnography and getting started (stage 1)
Deciding what is relevant (stage 2)
STARLITE CATEGORY | DESCRIPTION |
---|---|
Sampling Strategy | Selective |
Type of studies | Qualitative research, fully reported |
Approaches | Single electronic medical database (medline) |
Range of years | 1990 to January 2017; updated Feb 2019 |
Limits | [Human age groups Young adult OR Adult OR Middle aged OR Aged Or Aged, 80 and over] [Languages English] |
Inclusion and exclusions | Incontinence Excluded: peri-partum, neurological, faecal, long-term care and acute hospitalisation, pelvic organ prolapse, incontinence surgery |
Terms used | ((exp “FOCUS GROUPS”/ OR exp. “ANTHROPOLOGY, CULTURAL”/ OR exp. “QUALITATIVE RESEARCH”/ OR exp. “INTERVIEWS AS TOPIC”/ OR exp. “ATTITUDE TO HEALTH”/ OR exp. “NURSING METHODOLOGY RESEARCH”/ OR (Qualitative ADJ5 (theor* OR study OR studies OR research OR analysis)).ti,ab OR (ethno*).ti,ab OR (emic OR etic).ti,ab OR (phenomenolog*).ti,ab OR (hermeneutic*).ti,ab OR (heidegger* OR husserl* OR colaizzi* OR giorgi* OR glaser OR strauss OR (van AND kaam*) OR (van AND manen) OR ricoeur OR spiegelberg* OR merleau).ti,ab OR (constant ADJ3 compar*).ti,ab OR (focus ADJ3 group*).ti,ab OR (grounded ADJ3 (theor* OR study OR studies OR research OR analysis)).ti,ab OR (narrative ADJ3 analysis).ti,ab OR (discourse ADJ3 analysis).ti,ab OR ((lived OR life) ADJ3 experience*).ti,ab OR ((theoretical OR purposive) ADJ3 sampl*).ti,ab OR (field ADJ (note* OR (field ADJ record*) OR fieldnote*)).ti,ab OR (participant* ADJ3 observ*).ti,ab OR (action ADJ research).ti,ab OR ((co AND operative) AND inquir*).ti,ab OR (co-operative AND inquir*).ti,ab OR (cooperative AND inquir*).ti,ab OR ((semi-structured OR semistructured OR unstructured OR structured) ADJ3 interview*).ti,ab OR ((informal OR in-depth OR indepth OR “in depth”) ADJ3 interview*).ti,ab OR ((“face-to-face” OR “face to face”) ADJ3 interview*).ti,ab OR (“IPA” OR “interpretive phenomenological analysis”).ti,ab OR (“appreciative inquiry”).ti,ab OR (social AND construct*).ti,ab OR (poststructural* OR post structural* OR post-structural*).ti,ab OR (postmodern* OR post modern* OR post-modern*).ti,ab OR (feminis*).ti,ab OR (humanistic OR existential OR experiential).ti,ab) AND (exp ENURESIS/ OR exp. ENCOPRESIS/ OR exp. “FECAL INCONTINENCE”/ OR exp. “ABSORBENT PADS”/ OR exp. “URINARY INCONTINENCE”/ OR exp. “NOCTURNAL ENURESIS”/ OR exp. “DIURNAL ENURESIS”/ OR exp. “URINARY INCONTINENCE, STRESS”/ OR exp. “URINARY INCONTINENCE, URGE”/ OR exp. “URINARY BLADDER, OVERACTIVE”/ OR (incontinence).ti,ab OR (enuresis).ti,ab OR (encopresis).ti,ab OR ((overactiv* OR “over active” OR over-activ*) ADJ5 bladder).ti,ab)) |
Electronic sources | Medline |
Reading included studies (stage 3)
Determining how studies are related and translating studies (stages 4 and 5)
Synthesising translations and expressing the synthesis (stage 6 and 7)
Results
Author, Year | Toye & barker | Mendes & Colleagues [26] | Siddiqui & Colleagues [25] |
---|---|---|---|
Anger & Colleagues [107] | Excluded full text | Y | |
Bradway & Strumpf 2008 [109] | Excluded full text | Y | |
Bradway 2005 [111] | Excluded full text | Y | |
Bradway & Colleagues [103] | Excluded full text | Y | |
Brown & Colleagues 1998 [165] | Excluded on abstract | Y | |
Chaliha & Stanton 1999 [105] | Excluded full text | Y | |
Hatchett & Colleagues [157] | Not found | Y | |
Klemm & Creason 1991 [166] | Excluded on abstract | Y | |
Welch & Colleagues [158] | Not found | Y | |
Wells and Wagg 2007 [159] | Not found | Y | |
Bradway & Barg [110] | Not found | Y | Y |
Elstad & Colleagues 2010 [164] | Not found | Y | Y |
Akyuz & Colleagues 2014 [160] | Not found | Y | |
Coyne & Colleagues 2007 [161] | Not found | Y | |
Delarmelindo 2013 [162] | Not found | Y | |
Higa & Colleagues [167] | Excluded on abstract | Y | |
Macdonald & Butler [59] | Excluded full text | Y | |
Roe & May [100] | Excluded full text | Y | |
Siu & Lopez [163] | Not found | Y | |
Welch & Colleagues [158] | Not found | Y | |
Andersson et al. 2008 [116] | Y | Y | Y |
Andersson et al. 2009 [117] | Y | Y | Y |
Ashworth & Hagan 1993 [118] | Y | Y | |
Cochran 1998 [119] | Y | ||
Doshani et al. 2007 [120] | Y | Y | Y |
Dowd 1991 [121] | Y | Y | |
Getliffe et al. 2007 [122] | Y | ||
Gjerde et al. 2013 [123] | Y | Y | |
Griffiths et al. 2009 [124] | Y | ||
Hägglund & Wadensten 2007 [125] | Y | Y | |
Hägglund & Ahlström 2007 [126] | Y | Y | |
Hamid et al. 2015 [127] | Y | Y | |
Hayder & Schnepp 2010 [128] | Y | Y | Y |
Hayder 2012 [129] | Y | ||
Higa et al. 2011 [130] | Y | Y | |
Horrocks et al. 2004 [131] | Y | Y | |
Jackson et al. 2012 [132] | Y | ||
Kao et al. 2015 [133] | Y | ||
Komorowski & Chen 2006 [134] | Y | Y | Y |
Li, Low & Lee 2007 [135] | Y | Y | |
Macinnes 2008 [136] | Y | ||
Mason et al. b2001 [138] | Y | ||
Mason et al. 1999 [137] | Y | Y | |
Milne 2006 [139] | Y | ||
Nicolson et al. 2008 [140] | Y | Y | |
Peake & Manderson 2003 [141] | Y | Y | Y |
Peake, Manderson & Potts 1999 [142] | Y | ||
Roos et al. 2014 [143] | Y | Y | |
Sange et al. 2008 [144] | Y | Y | Y |
Shaw, William & Assassa 2000 [147] | Y | ||
Shaw et al. 2001 [145] | Y | ||
Shaw et al. 2008 [146] | Y | ||
Siu 2014 [148] | Y | ||
Siu 2015 [149] | Y | ||
Skoner & Haylor 1993 [150] | Y | Y | |
St John, James & Mckenzie 2002 [151] | Y | ||
van Den Muijsenbergh & Lagro-Janssen 2006 [152] | Y | Y | Y |
Welch, Taubenberger & Tennstedt 2011 [154] | Y | ||
Welch et al. 2012 [153] | Y | ||
Wilkinson 2001 [155] | Y | Y | |
Zeznock, Gilje & Bradway 2009 [156] | Y | Y |
Author & Year | Geography | Condition | Age | Number (male) | Aim to explore: | Data collection, methodology | Recruitment | Relevance | Assessment |
---|---|---|---|---|---|---|---|---|---|
1. Andersson et al. 2008 [116] | Sweden | UI | 66–89 | 11 | Experience of UI among women who do not desire further treatment | Interviews, Phenomenology | District nurse | direct | satisfactory |
2. Andersson et al. 2009 [117] | Sweden | UI | 30 80+ | 14 | Experience of UI among Syrian women living in Sweden | Focus groups, Phenomenology | Snowball sample | direct | satisfactory |
3. Ashworth & Hagan 1993 [118] | UK | UI | 25–55 | 28 | Women’s’ experience of UI | Interviews, Phenomenology | newspaper | direct | key |
4. Cochran 1998 [119] | USA | UI | 60–88 | 19 (NK) | Experience of UI of older persons living in the community | Interviews, Not stated | Community volunteer/doctor invite | direct | satisfactory |
5. Doshani et al. 2007 [120] | UK | UI | 36–82 | 24 | Experience of UI among south Asian Indian women in Leicester, UK | Focus groups, Thematic analysis | South Asian community centres | direct | satisfactory |
6. Dowd 1991 [121] | USA | UI | 58–79 | 7 | Experience of UI and adjustment in older women | Interviews, Grounded theory | ‘convenience sample’ | direct | satisfactory |
7. Getliffe et al. 2007 [122] | UK | UI | 29–89 | 99 | Experience of using absorbent products for ‘light’ UI and impact on women’s quality of life | Interviews, Thematic analysis | Incontinence services, consumer organisations and adverts | indirect# | satisfactory |
8. Gjerde et al. 2013 [123] | Ethiopia | UI | NK | 181 | Experience of UI in rural and semi urban settings in Ethiopia | Interviews, Systematic text condensation | part of a Incontinence and Prolapse study. | direct | satisfactory |
9. Griffiths et al. 2009 [124] | UK | UI | 30–74 | 22 | Experience of physiotherapy sessions for the management of UI | Interviews, Thematic analysis | Embedded in a trial | direct | satisfactory |
10. Hägglund & Wadesten [125] | Sweden | UI | 34–52 | 14 | Experience of UI | Interviews, Phenomenology | Cohort study; women who had not sought help | direct | satisfactory |
11. Hägglund & Ahlström 2007 [126] | Sweden | UI | 37–52 | 13 | Experience of UI and health seeking in long-term UI | Interviews, Phenomenology | Cohort study; women who had sought help for UI | direct | satisfactory |
12. Hamid et al. 2015 [127] | Iran | UI | 52–68 | 17 | Experience of Muslim community-dwelling postmenopausal women of UI | Interviews, Phenomenology | Community snowball sample | direct | satisfactory |
13. Hayder & Schnepp a 2010 [128] | Germany | UI | 38–83 | 32 (10) | Experience of UI in daily life | Interviews, Grounded theory | Community advert | direct | key |
14. Haydera 2012 [129] | Germany | UI | 38–83 | 32 (10) | Experience of UI and impact on sexuality and intimate relationships | Interviews, | Community advert | direct | satisfactory |
15. Higa et al. 2011 [130] | Brazil | UI | 30–45 | 8 | the meanings of silence for Brazilian women with UI | Interviews, Content analysis, | Community snowball sample | direct | satisfactory |
16. Horrocks et al. 2004 [131] | UK | UI | 66–94 | 20 (9) | Why older people living in the community do not seek help with UI | Interviews, Grounded theory | Community survey | partial* | satisfactory |
17. Jackson et al. 2012 [132] | USA | UI | NK | 144 (71) | How talking with others influences symptom management | Interviews, Thematic analysis | Community survey | direct | satisfactory |
18. Kao et al. 2015 [133] | Taiwan | UI | 44–66 | 12 | Experiences of PFMT for UI and the impact on their sexuality | Interviews, Thematic analysis | Women who had gone to a PFMT education programme | indirect | satisfactory |
19. Komorowski & Chen 2006 [134] | China | UI | 24–81 | 15 | Experiences of Chinese women living with UI | Interviews, IPA | Reported UK at Obstetrics and gynaecology department | direct | satisfactory |
20. Li, Low & Lee 2007 [135] | Hong Kong | UI | 42–77 | 9 | Community-dwelling women’s experiences in coping with UI | Interviews Content analysis | Continence clinic (stress incontinence) | direct | satisfactory |
21. Macinnes 2008 [136] | UK | UI | 28–65 | 12 | To explore why some women with UI drop out of healthcare | Telephone interviews, Thematic analysis | Continence clinic (stress incontinence) | direct | satisfactory |
22. Mason et al.b 1999 [137] | Australia | UI | 21–45 | 52 | The effects of stress incontinence on women in their childbearing years | Interviews, Thematic analysis | One year post-partum with UI | partial | satisfactory |
23. Mason et al. b2001 [138] | Australia | UI | 21–45 | 52 | are women made aware of UI at the time of childbirth and why some do not seek help | Interviews, Thematic analysis | One year post-partum with UI | partial | satisfactory |
24. Milne 2006 [139] | Canada | UI | 24–86 | 38 (5) | Self-care strategies in UI and factors that influence their self-care choices | 15 interviews/3 focus groups description | Adverts in health clinics, newspapers, health education sessions, clinics | direct | satisfactory |
25. Nicolson et al. 2008 [140] | UK | OAB | 51–85 | 18 (8) | Experiences of overactive bladder symptoms | Interviews/focus groups, Thematic analysis | Primary care, adverts | direct | satisfactory |
26. Peake & Mandersonc 2003 [141] | Australia | UI | 40–60 | 75 | Social aspects of UI in women in their middle years. | Interviews, Thematic analysis | Primary care | direct | key |
27. Peake, Manderson & Pottsc 1999 [142] | Australia | UI | 40–60 | 75 | Women’s discourse regarding theirown UI | Interviews, Thematic analysis | Primary care | direct | key |
28. Roos et al. 2014 [143] | Netherlands | POP/UI | 31–64 | 37 | Impact of pelvic organ prolapse and/or UI on sexual dysfunction | Interviews, Thematic analysis | Scheduled for corrective surgery | indirect | satisfactory |
29. Sange et al. 2008 [144] | UK | UI | 21–70 | 9 | Religious/cultural influences on help-seeking in south Asian Muslim women | Focus groups, Framework analysis | Language classes | direct | satisfactory |
30. Shaw et al. 2001 [145] | Australia | UI | 40–63 | 31 (8) | Help seeking behaviour in people with UI and barriers to service use | Interviews Thematic analysis | Embedded in a continence service trial | indirect | satisfactory |
31. Shaw et al. 2008 [146] | UK | UI | 41–89 | 33 (18) | help-seeking in middle and older aged people with UI | Interviews Grounded theory | Community survey | direct | satisfactory |
32. Shaw, William & Assassa 2000 [147] | Australia | UI | 40–62 | 23 (7) | Patients’ views of a new nurse led continence service in a randomized trial | Interviews Thematic analysis | Post course led by continence nurse | direct | satisfactory |
33. Siu 2014 [148]d | Hong Kong | OAB | 21–59 | 30 | Doctor-patient communication (female patients and male urologists) | Interviews Thematic analysis | OAB patient self-help group | direct | satisfactory |
34. Siu 2015 [149]d | Hong Kong | OAB | 21–59 | 30 | Reasons behind doctor shopping behaviour in patients with overactive bladder | Interviews Thematic analysis | OAB patient self-help group | direct | satisfactory |
35. Skoner & Haylor 1993 [150] | USA | UI | 31–50 | 8 | Perceptions of UI | Interviews Grounded theory | Women’s’ magazines or snowball sample | direct | satisfactory |
36. St John, James & Mckenzie 2002 [151] | Australia | UI | 40–66 | 11 (5) | Perspectives of a service for community dwelling people with UI | Interviews Thematic analysis | Community health, continence service, home visits | direct | satisfactory |
37. van Den Muijsenbergh & Lagro-Janssen 2006 [152] | Netherlands | UI | 45 MEAN | 30 | The impact of UI on Moroccan and Turkish women and their treatment preferences | Interviews Thematic analysis | Primary care, pelvic floor physio, Moroccan care consultants | direct | satisfactory |
38. Welch et al. e 2012 [153] | USA | LUTS | 34–85 | 90 (49) | qualitative methods for developing patient-reported outcomes | Interviews Thematic analysis | Community survey | indirect | satisfactory |
39. Welch, Taubenberger & Tennstedte 2011 [154] | USA | LUTS | 34–85 | 90 (49) | Treatment seeking for lower urinary tract symptoms | Interviews Thematic analysis | Community survey | indirect | satisfactory |
40. Wilkinson 2001 [155] | Australia | UI | 40–64 | 6 | Experiences of Pakistani women with UI | Interviews Thematic analysis | Continence service | direct | satisfactory |
41. Zeznock, Gilje & Bradway 2009 [156] | Alaska | UI | 33–86 | 17 | Experiences of Alaskan women living with UI in rural/urban settings | Interviews Thematic analysis | Urological, women’s health and primary care | direct | satisfactory |
Am I ill or is this normal?
Peake, Manderson & Potts 1999 [142] - Self-control and the woman out of control: There is no single cause for my incontinence; it is part of the history of my body and who I am. My body is my inheritance. It is normal for older women and mothers to be incontinent. Others are not ‘entitled’ and therefore have to keep it very quiet. I expect to be incontinent because I have children. It is also normal for older women. However, this does not mean that it is socially acceptable to ‘leak’. Leaking is associated with being decrepit and incompetent which makes its secrecy imperative if I am to be seen as normal. It symbolises infancy and extreme old age. It is an embarrassing anomaly.
Ashworth & Hagan 1993 [118] - Impact of incontinence on daily life: The beginning of incontinence is rarely clear. I have had a problem for a while but only realised in retrospect. There was no clear start point. A distressing accident was the spark which made me aware of the problem. Eventually I realised it was a real problem.
Welch et al. 2012 [153] - Symptom Relief - no treatment as a message that their symptoms were not serious: I have not been offered treatment so it can’t be serious; it must be a normal part of ageing. My tests were negative so I don’t need treatment. It is not a clear, medically accepted and legitimate condition.
Ashworth & Hagan 1993 [118]- Incontinence is a vague condition, difficult to grasp - An illegitimate problem: It is not a clear, medically accepted and legitimate condition. It is ‘just a drag’ which interferes with daily life. Is the term ‘incontinence’ too strong to describe what I have? Having ‘the odd squirt’ or ‘leaking’ seems more accurate.
Hägglund & Wadensten 2007 [125] - Having personal beliefs about seeking care -Toning down their problem: It is not a top priority. Juggling home and family leaves me little time to worry about myself. I am unbearably weary at times. It is not disturbing enough to seek help. Its impact on my job has made me consider discussing it with a nurse.
It effects who I am and how I feel
Dowd 1991 [121] - Being in Charge - Achieving a normal life means keeping in control of continence through routines: It is a constant concern as continence is unpredictable. Being prepared means I have to be acutely aware of my routine. I need to plan where, when, and with whom I do things. You can be in charge of most situations. If I am not in charge it threatens my self-esteem. If I have an accident I change my routine to increase security. At times I need to drastically alter my routine to prevent accidents and embarrassment. Sometimes I even stay at home and limit social contacts.
Peake & Manderson 2003 [141] - Intimate moments: Incontinence affects my sexuality and relationships: I ‘feel guilty,’ ‘disgusting’; ‘something no normal man should have to put up with.’ It makes me anxious when pleasure and evacuation merge. Some partners see it as a strong sexual signal. It is worse to leak at times unrelated to sex. It is particularly problematic when I am trying to make new relationships.
Horrocks et al. 2004 [131] - Reactions to incontinence: I am afraid that incontinence is the harbinger of future frailty and dependence. I am worried about cleanliness and personal hygiene. I am embarrassed, ashamed, humiliated, disgusted and so I hide it because I am worried about a negative reaction from other people.
Komorowski & Chen 2006 [134] - Impact of UI on quality of life - emotional isolation: I feel alone and excluded. I avoid social activity. I am embarrassed and ashamed, annoyed, frustrated, sad and depressed. It is inconvenient, uncomfortable and dirty. It makes me feel tired. People don’t understand. Other people get used to it and it doesn’t affect them. I am afraid, anxious and lonely. I have lost control.
Nicolson et al. 2008 [140] - The experience of urgency: The experience of urgency has an impact on my quality of life. I need to think about where the loo is. Feeling like I need to go urgency does not necessarily mean that I really need to go. It plays tricks on me. The greatest fear is when I get home and put my key in the lock. My sleep is disturbed and I am exhausted. This makes me feel more anxious and depressed.
I feel stigmatised, ashamed and guilty
Ashworth & Hagan 1993 [118] - Incontinence is a vague condition, difficult to grasp - Incontinence is a forbidden topic: It is not ‘nice’ to talk about incontinence or any ‘things down there’. Normally, people collude politely and don’t mention it. It is a minefield of potential embarrassment. You need permission to break the taboo. Silence protects everyone from it. Even my partner has little or no inkling of the severity of the problem. I wear those panty shield things; can I mention that to you?
Peake, Manderson & Potts 1999 [142] - The Woman in the body: When you are a child growing up, you got into trouble for wetting your pants, and now you are an adult wetting your pants. Wetting yourself is ‘wilful’ or ‘naughty’. It contravenes important childhood messages of body control. It breaches social etiquette: ‘nice’ girls are supposed to ‘smell nice.’ Incontinence is ‘part and parcel’ of women’s lot in life. However, at the same time it ‘makes you feel not the woman you were’.
Griffiths et al. 2009 [124] - Embarrassment: I can tell you some terribly embarrassing stories about times I have wet myself. I worry that I smell. There is a taboo surrounding incontinences. I don’t mention it to anyone, even close family. I am embarrassed to go to the doctor. Not everyone is so embarrassed.
Peake, Manderson & Potts 1999 [142] - Controlling the boundaries of the body: I should be responsible for controlling my own body. I am failing an important social duty. Although it is ‘normal,’ you have a responsibility to find a solution. UI is an artefact of reproduction. It is not fair if you are incontinent and haven’t had children. It makes me feel really dirty. I l have lost self-control. It is difficult to reconcile this sense of self-responsibility with inevitability.
Ashworth & Hagan 1993 [118] - Effect of incontinence on self-image - sufferers feel that it is their fault: I blame myself because I didn’t do any pelvic floor exercises. I am a bit lazy. I don’t want people to see me buying pads. My health professional is going to tell me off. I am going to be categorised and stigmatised for losing control.
Van den Muijsenbergh & Lagro-Janssen 2006 [152] - Consequences on daily life: Incontinence has an effect on worship. It is dirty & extremely bothersome. I wash as soon as I can. I always have a supply of pads and clean underwear. Some people talk to their families and partners about it. I am ashamed to talk about it. It has a negative effect on my intimate relationships. I wouldn’t want to remarry because of the incontinence. Some say that you shouldn’t be ashamed because it was created by Allah.
Talking can be difficult (but it can help)
Hayder & Schnepp 2010 [128] - Regain Control - forming a circle of trust: I find it difficult to talk about my incontinence because I am afraid of negative reactions. I keep it a secret from the outside world. I don’t dare to confide in anyone outside of the family, not even close friends. Because I keep it quite this means I have to miss out on some leisure activities. Other people manage to be very open about it. Talking to someone else who is interested and who understands can create a bond of trust. I would only tell my closest female friends so that they can understand and appreciate my problem. I then wouldn’t have to lie or hide things.
Ashworth & Hagan 1993 [118] - Incontinence is a vague condition, difficult to grasp - an isolating problem: No one else I know has incontinence like me and I don’t want anyone to discover. I am even careful talking to someone else with a similar problem.
Hägglund & Wadensten 2007 [125] - Having desired expectations about care - being actively asked about UI: I want my healthcare professional to ask directly about incontinence and for them to create an understanding atmosphere because I don’t dare bring it up.
St John James & McKenzie 2002 [151] - Appropriateness and acceptability: I have had negative experiences of healthcare professionals and shop around for the ‘right person’. I want to see someone who is knowledgeable, empathetic, interested in my experience, compassionate, and with whom I feel at ease. I feel grateful to discuss the impact and management of incontinence but it is difficult to raise the issue. For some it is only a minor complaint with little impact.
Wilkinson 2001 [155] - Communicating and understanding: It is difficult to discuss it in another language and the ‘unresponsiveness’ from healthcare professionals makes this worse. I am too embarrassed to seek help. My healthcare professional is rushed or disinterested. I rely on family or friends to interpret. A bilingual professional would be helpful.
Siu 2015 [149] - Feelings of not being understood: The urologist does not understand the extent of my suffering; they see things from ‘a male’s viewpoint’. I have other things to consider. Treatments can interfere with women’s role and the urologist does not understand this.
I must keep incontinence under control
Hayder & Schnepp 2010 [128] - A life determined by incontinence: I feel safe when I am at home but dread public areas. I feel vulnerable, ashamed, and abnormal. It affects my relationships and everything that I do. It is difficult to enter into a relationship with a new partner. It has a negative effect on my sexuality. However being able to talk openly about it can help me to build relationships. I am becoming geographically restricted. Trips or journeys into the unknown feel too risky. I feel dependent and inflexible. Over time, I am accepting these limitations and thinking of ways to overcome them.
Ashworth & Hagan 1993 [118] - Impact of incontinence on daily life - special precautions become a way of life: I have to take more and more precautions. I have to be constantly aware and anticipate leakage. I go to the loo obsessively and plan toilet visits. I check there is a loo. I only do safe activities and avoid some movements. I regulate how much I drink. I choose my clothes carefully. I buy pads in bulk and carry spares. I constantly check for smells and take precautions. Sometimes I throw underwear away.
Getliffe et al. 2007 [122] - Containing the problem: wearing pads doesn’t make you continent, but you need to be confident that a pad will make it invisible to other people. My confidence is fragile and could easily be damaged. I am anxious about leakage. Pad discreteness and odour control is crucial to ‘hiding the problem’. I need to balance absorbency and discreteness (on and in handbag). It also needs to be convenient to change my pad.
Milne & Moore 2006 [139] - Barriers to performance of pelvic floor muscle exercises -Financial cost: Continence care is expensive. I am surprised and annoyed that it is not covered by the health care.
Kao et al. 2015 [133] - Developing awareness and gaining control - gaining control and confidence: I pay little attention to pelvic health. My first priority is to my family and I come second. I gained control over my body through pelvic floor exercises and feel more confident.
Milne & Moore 2006 [139] - Seeing enhanced believing: If the exercises work I will believe it. I want a test to show that the exercises are working; otherwise it is all a bit nebulous. Changes are very slow and insignificant. It is frustrating and I may give up. If I knew what to expect I could be more realistic about goals.
Milne & Moore 2006 [139] - Factors that facilitated pelvic floor muscle exercises - realistic goals and expectations: The exercise regime is very time consuming. You need to be realistic about what you can do in a day.
Have I got to the point that I need help?
Ashworth & Hagan 1993 [118] - Impact of incontinence on daily life - dreaded anticipation of worsening in the future: I know that it may sooner or later worsen. I fear being very seriously restricted. I am likely to suffer devastating embarrassment. I will find that over time my strategies will not work, and that I need medical help.
Shaw et al. 2008 [146] - Identification of the cause of symptoms: I try and find out what is causing this from different sources, like the media. That is how I work out when it is bad enough to seek help. If I know what the cause is, I don’t worry as much. I worried that it might be cancer.
Conceptual model – living with urinary incontinence: is it just part and parcel of life?
Confidence in findings
Review finding | Studies contributing | Methodological limitations | Relevance | Coherence number of studies | Adequacy number of themes | Overall confidence |
---|---|---|---|---|---|---|
Am i ill or is this normal? | 3 key paper, 38 satisfactory | 34 direct, 3 indirect, 3 partial | 28/41 | 80 | High 20 to 31 studies contributed 69 to 93 concepts that supported these themes. We also found rich use of narrative to support the themes | |
It effects who i am and how i feel | 2 key paper, 39 satisfactory | 37 direct, 3 indirect 1 partial | 20/41 | 69 | ||
I feel stigmatised, ashamed and guilty | 4 key paper, 37 satisfactory | 38 direct, 2 indirect 1 partial | 28/41 | 80 | ||
Talking can be difficult (but it can help) | 3 key paper, 38 satisfactory | 33 direct, 5 indirect, 3 partial | 31/41 | 93 | ||
I must keep incontinence under control | 4 key paper, 37 satisfactory | 34 direct, 4 indirect, 3 partial | 29/41 | 76 | ||
Have i got to the point that i need help? | 1 key paper, 40 satisfactory | 40 direct, 1 indirect | 9/41 | 17 | Moderate downgraded due to fewer studies contributing although narrative rich |
Original Finding | Essence Of Original Finding Translated Into First Person | Am i ill or is this normal | It effects who i am and how i feel | I feel stigmatised, ashamed & guilty | Talking can be difficult (but it can help) | I must keep it under control | Have i got to the point that i need help? |
---|---|---|---|---|---|---|---|
Mendes & Colleague s[26]: Cultural and religious backgrounds and personal reluctance contribute to delays in seeking UI treatment | I don’t want to ask for professional help. There is no opportunity to share my problems with a HCP, I want to deal with it without professional help, I don’t have a clear physical symptom; I don’t want to find out that I have something serious; God will cure me; he won’t let me suffer. It’s not serious; other things are more important | YES | YES | ||||
Mendes & Colleague s[26]: The inevitable and regrettable problem of UI endured silently and alone affects women’s daily activities and their social roles | I regret having UI; but other people have it too. My daily life is affected. I avoid thing that I used to do; I don’t go to RE and social gatherings as much now I silently endure the loneliness. I can’t go out because I need the loo all the time. I worry about what others will think and keep it a secret. | YES | YES | YES | YES | ||
Mendes & Colleague s[26]: Poor knowledge and the vague nature of the symptoms mask the fact that UI is a disease | UI is a vague condition that we don’t know much about. The symptoms are vague. It is not recognised as a disease. We don’t talk about it so people don’t know about it. | YES | |||||
Mendes & Colleagues [26]: The experiences provoked by UI and the sense of shame regarding the condition have impaired women’s lives | UI makes me anxious, distressed. It carries a stigma. It is so embarrassing and humiliating when I leak in public. I feel depressed and hopeless and have low self-esteem because I can’t do the things that I used to do and I can’t do much to help myself. It is an emotional experience. I am ashamed | YES | YES | ||||
Mendes & Colleague s[26]: UI has provoked negative effects on women’s intimacy and sexual satisfaction and provoked changes in the way they experience their sexuality and sexual function | I feel fear, shame, blame and guilt. It has affected intimacy and my sexual satisfaction. | YES | YES | ||||
Mendes & Colleague s[26]: UI is considered a consequence of pregnancy and childbirth, inherent to aging or a religious punishment | UI is a natural result of pregnancy and childbirth. It is part of ageing. It is a punishment and I must just accept it. | YES | |||||
Mendes & Colleague s[26]: The women affected by UI adopt several strategies to improve their health status | I try and learn things so that I can control the consequences of UI. I seek professional help. I try and keep it under control; I manage using various strategies | YES | YES | ||||
Mendes & Colleague s[26]: Women have personal preferences towards care providers and treatments; they confront difficulties through UI treatment and some care needs are not met’ | My health needs are not being met. Doctors lack interest. I am not being taken seriously. There are language barriers; there is no medical diagnosis or plan. It is difficult to understand /adhere to treatments prescribed. I prefer a female Hcp; I prefer my own family to translate or at least someone of my own ethnicity | YES | |||||
Siddiqui and Colleagues [25]: UI management | I need to adhere to strict routines and strategies to manage UI. I need to make plans for being in public, including knowing where toilets are. It is only a minor, it is normal so I don’t seek treatment. It is difficult to communicate with the dr. they don’t take it seriously. They need to talk more clearly. I would prefer to see a woman | YES | YES | YES | |||
Siddiqui and Colleagues [25]: UI experience | I feel fear, stigmatization, and shame. I worry what people think. I feel disgusting. | YES | YES |
Discussion
‘These [liminal] persons elude or slip through the network of classifications that normally locate states and positions in cultural space. Liminal entities are neither here nor there; they are betwixt and between the positions assigned and arrayed by law, custom, convention, and ceremonial’ (page 144).