Introduction
Material and methods
Stage 1: Selecting meta-ethnography and getting started
Stage 2: Deciding what is relevant
Starlite category | Description |
---|---|
Sampling strategy | Comprehensive |
Type of studies | Qualitative research, fully reported |
Approaches | Electronic databases |
Range of years | To April 2020 |
Limits | [Languages English] |
Inclusions and exclusions | Pelvic organ prolapse Excluded: mixed samples where unable to decipher experience of POP from other experience |
Qualitative methods - thesaurus terms | MEDLINE: exp. “FOCUS GROUPS”/ OR exp. “ANTHROPOLOGY, CULTURAL”/ OR exp. “QUALITATIVE RESEARCH”/ OR exp. “NURSING METHODOLOGY RESEARCH”/ OR exp. “INTERVIEWS AS TOPIC”/ PSYCHINFO: exp. “THEMATIC ANALYSIS”/ OR exp. “SEMI-STRUCTURED INTERVIEW”/ OR exp. “NARRATIVE ANALYSIS”/ OR exp. “INTERPRETATIVE PHENOMENOLOGICAL ANALYSIS”/ OR exp. “GROUNDED THEORY”/ OR exp. “FOCUS GROUP”/ OR exp. “QUALITATIVE METHODS”/ OR exp. PHENOMENOLOGY/ OR exp. ETHNOGRAPHY/ OR exp. “GROUP DISCUSSION”/ CINAHL: exp. “PHENOMENOLOGICAL RESEARCH”/ OR exp. “GROUNDED THEORY”/ OR exp. “ETHNONURSING RESEARCH”/ OR exp. “ETHNOLOGICAL RESEARCH”/ OR exp. “ETHNOGRAPHIC RESEARCH”/ OR exp. “ACTION RESEARCH”/ OR exp. “NATURALISTIC INQUIRY”/ OR exp. “QUALITATIVE STUDIES”/ OR exp. “ANTHROPOLOGY, CULTURAL”/ OR exp. “FOCUS GROUPS”/ OR exp. “DISCOURSE ANALYSIS”/ OR exp. “CONSTANT COMPARATIVE METHOD”/ OR exp. “PURPOSIVE SAMPLE”/ EMBASE: exp. HERMENEUTICS/ OR exp. “QUALITATIVE RESEARCH”/ OR exp. PHENOMENOLOGY/ OR exp. “PERSONAL EXPERIENCE”/ |
Qualitative methods – free text | Qualitative ADJ5 (theor* OR study OR studies OR research OR analys*)).ti,ab OR (ethnog*).ti,ab OR (phenomenolog*).ti,ab OR (hermeneutic* 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 (grounded ADJ3 (theor* OR study OR studies OR research OR analys*)).ti,ab OR (narrative ADJ3 analys*).ti,ab OR (discourse ADJ3 analys*).ti,ab OR (conversation ADJ3 analys*).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 (digital ADJ record) OR audiorecord*).ti,ab OR (co AND operative) AND inquir* OR co-operative AND inquir*).ti,ab OR ((semi-structured OR semistructured OR unstructured OR structured) ADJ3 interview*).ti,ab OR (feminis*).ti,ab OR (humanistic OR existential OR experiential).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 (‘appreciative inquiry’).ti,ab OR (‘interpretative phenomenological analysis’).ti,ab OR (face ADJ3 interview*).ti,ab OR ((depth OR in-depth) ADJ3 interview*).ti,ab OR (abductive ADJ analys*).ti,ab) |
Condition terms | exp “WOMEN’S HEALTH SERVICES”/ OR exp. GYNAECOLOGY/ OR exp. “REPRODUCTIVE MEDICINE”/ OR exp. UROLOGY/)” AND exp. “PELVIC ORGAN PROLAPSE”/” AND exp. “URINARY INCONTINENCE”/” AND (prolapse).ti,ab |
Electronic sources | Medline, PsychInfo, Cinahl, Embase |
Stage 3: Reading included studies
Stages 4 and 5: Determining how studies are related and translating studies
Stages 6 and 7: Synthesizing translations and expressing the synthesis
Results
Author(S), year | Participants (same sample) | Age range (mean) | Country | Condition | Data collection | Analysis | Study aim |
---|---|---|---|---|---|---|---|
Abhyankar et al. 2019[13] | 22 | NK | UK | POP | Interviews/focus groups | Thematic analysis | Women’s experiences of seeking diagnosis and treatment for POP |
Alas et al. 2016[41] | 58 a | (57) English (64) Spanish | USA | POP | Focus groups | Grounded theory | Perceptions of Spanish- and English-speaking women with POP |
Baskayne et al. 2014[14] | 28 | 32–86 | UK | POP surgery | Interviews | Thematic analysis | Expectations of prolapse surgery and reasons why expectations were met or not met |
Basu and Duckett 2009[15] | 17 | 33–76 | UK | POP/UI | Interviews | Thematic analysis | Why women with recurrent urogynaecology symptoms do not seek treatment |
Basu, Wise and Duckett 2011[16] | 16 | 48–70 | UK | POP/UI | Iinterviews | Thematic analysis | Treatment decision-making process for stress urinary incontinence (SUI) and prolapse |
Blystad et al. 2018[17] | 5 | NK | Ethiopia | POP | Interviews | Systematic text condensation | Reasons for under-reporting of POP in the Dabat Incontinence and Prolapse Study |
Bonetti, Erpelding and Pathak 2004[45] | 24 | NK | Nepal | POP | Focus groups | Ethnography | Experience of prolapse and its perceived causes and consequences |
Brown 2019[42] | 7 | 43–69 | NZ | POP/UI surgery | Interviews | Hermeneutic phenomenology | Women’s lived experience of pelvic surgical mesh complications |
Chalise, Steenkamp and Chalise 2016[18] | 21 | 25–60 | Nepal | POP | Interviews | Thematic analysis | Factors affecting women seeking surgical treatment for POP at mobile surgical camps |
Dunivan et al. 2014[19] | (58) a | 33–90 | USA | POP | Focus groups | Grounded theory | English- and Spanish-speaking women’s experience with POP |
Ghetti et al. 2015[20] | 44 | (60) | USA | POP | Interviews/focus groups | Thematic analysis | The emotional burden experienced by women seeking treatment for POP |
Gjerde et al. 2017[23] | 24 b | 24–65 | Ethiopia | POP surgery | Ethnography/ focus groups/interview | Systematic text condensation | How women in a low-income setting explain, experience and handle consequences of POP |
Gjerde et al. 2018[21] | (24) b | 24–65 | Ethiopia | POP surgery | Ethnography/ focus groups/interview | Case stories | Recovery after free surgical treatment for POP in a resource-constrained setting |
Gjerde et al. 2018B[22] | (24) b | 24–65 | Ethiopia | POP surgery | Observation/interviews | Thematic analysis | Experiences of healthcare of women with severe POP in impoverished settings |
Hadizadeh-Talasaz et al. 2019[46] | 20 | 28–65 | Iran | POP | Interviews | Content analysis | The sexual experience of women with POP |
Hyland, Hay-Smith and Treharne 2014[24] | 5 | 46–60 | NZ | POP | Interview | Interpretative phenomenology | Post-supervised treatment adherence to pelvic floor muscle training for POP |
Jackson et al. 2017[25] | 24 | 24–95 | USA/Mexican border | POP/UI | Focus groups | Grounded theory | Perceptions of POP/incontinence in Spanish-speaking Latinas on the US/Mexico border |
Kiyosaki et al. 2012[26] | 20 | 31–87 | USA | POP/UI | Interview | Grounded theory | Effect of visit with a specialist on understanding of pelvic floor disorders |
Low and Tumbarello 2012[27] | 14 | 33–81 | USA | POP | Interview | Framework of knowledge | How women comprehend, conceptualize and communicate their experiences with POP |
Lowder et al. 2011[28] | 25 | (67) | USA | POP | Focus groups | Grounded theory | Perceptions of prolapse-specific body image in women with symptomatic prolapse |
Maldonado et al. 2020[43] | 29 | 40–79 | USA/Mexican border | POP | Focus groups | Grounded theory | Pessary use in Spanish-speaking women along the US-Mexico border |
Mirskaya, Lindgren and Carlsson 2019[47] | 33 | NK | Sweden | POP | Online forum | Thematic analysis | Fertile women’s experiences of symptomatic pelvic organ after vaginal birth |
Muller 2010[48] | 33 | (64) | NZ | POP | Phone interviews | Thematic analysis | Impact of POP, experience of healthcare and treatment priorities |
O’Dell and Jacelon 2005[29] | 6 | 61–85 | USA | POP surgery | Interviews | Phenomenology | The nature and range of the experience of vaginal closure surgery |
Pakbaz et al. 2010[30] | 14 | 42–79 | Sweden | POP | Interviews | Thematic | Experiences of living with POP and its impact on daily life, prior to surgical intervention |
Radl, Rajwar and Aro 2012[44] | 71 | NK | Nepal | POP | Focus groups | Grounded theory | The status of uterine prolapse prevention in Eastern Nepal |
Roets 2007[49] | 19 | 48–77 | South Africa | POP | Interviews | Phenomenology | The experience of women with POP |
Roos et al. 2014[31] | 37 c | 31–64 | The Netherlands | POP/UI surgery | Interviews | Data matrices | The impact of POP and/or UI on female sexual dysfunction |
Roos et al. 2013[32] | (37) c | 31–64 | The Netherlands | POP/UI surgery | Interviews | Data matrices | Condition-specific sexual function questionnaire after pelvic floor surgery |
Sevilla et al. 2013[34] | 27 | 41–71 | USA | POP/UI | Interviews | Grounded theory | Impact of an initial specialist visit on Spanish-speaking women with pelvic floor disorders |
Sevilla et al. 2013b[33] | 16 | 47–85 | USA | POP Pessary | Interviews | Grounded theory | Experiences of Spanish-speaking women who choose a pessary |
Shrestha et al. 2014[35] | 16 | 23–82 | Nepal | POP | Interviews | Deductive analysis | Experiences of POP and healthcare-seeking practices |
Smith-Oka 2014[36] | 53 | 18–73 | Mexico | POP | Observation/interviews | Ethnography | Experience of POP: focus on reproduction, motherhood and healthcare |
Storey et al. 2009[37] | 11 | 60+ | Canada | POP/UI pessary | Interviews | Narrative inquiry | Experiences of women using pessaries for the treatment of incontinence or POP |
Sung et al. 2014[38] | 25 | 40–84 | USA | POP surgery | Focus groups | Content analysis | To develop a conceptual framework for the most important outcomes for POP |
Wieslander et al. 2015[39] | (58) a | 33–90 English 46–77 Spanish | USA | POP | Focus groups | Grounded theory | Experience and understanding of POP in Spanish- and English-speaking women |
Zielinski et al. 2009[40] | 13 | 33–81 | USA | POP | Phone interviews | Content analysis | Body image questionnaire in women with pelvic organ prolapse |
Author (s), year | My body if broken | The life of a woman can take its toll | I am broken | It has taken the woman out of me | My world is shrinking | Pelvic organ prolapse is taboo | What on earth is going on down there? | Powerless in healthcare | What treatment should I choose | It was a relief to tell someone |
---|---|---|---|---|---|---|---|---|---|---|
Number of studies | 21 | 13 | 19 | 20 | 12 | 27 | 16 | 14 | 17 | 14 |
Abhyankar et al. 2019[13] | x | x | x | x | x | x | x | x | ||
Alas et al. 2016[41]a | x | x | x | x | ||||||
Baskayne et al. 2014[14] | x | x | x | |||||||
*Basu and Duckett 2009[15] | x | x | x | |||||||
*Basu, Wise and Duckett 2011[16] | x | x | x | x | x | x | ||||
Blystad et al. 2018[17] | x | x | ||||||||
Bonetti, Erpelding and Pathak 2004[45] | x | x | x | x | x | |||||
Brown 2019[42] | x | x | x | x | x | x | x | x | x | |
Chalise, Steenkamp and Chalise 2016[18] | x | x | x | |||||||
Dunivan et al. 2014[19] a | x | x | x | x | x | |||||
Ghetti et al. 2015[20] | x | x | x | x | x | x | ||||
Gjerde et al. 2017[23]b | x | x | x | x | x | x | x | |||
Gjerde et al. 2018[21] b | x | x | x | x | x | x | x | |||
Gjerde et al. 2018B[22] b | x | x | x | x | x | x | x | x | ||
Hadizadeh-Talasaz et al. 2019[46] | x | x | x | x | ||||||
Hyland, Hay-Smith and Treharne 2014[24] | x | |||||||||
*Jackson et al. 2017[25] | x | x | x | |||||||
*Kiyosaki et al. 2012[26] | x | x | x | x | ||||||
Low and Tumbarello 2012[27] | x | x | ||||||||
Lowder et al. 2011[28] | x | x | x | x | x | x | ||||
Maldonado et al. 2020[43] | x | x | ||||||||
Mirskaya, Lindgren and Carlsson 2019[47] | x | x | x | x | x | x | x | x | ||
Muller 2010[48] | x | x | ||||||||
O’Dell and Jacelon 2005[29] | x | x | x | x | x | x | x | |||
Pakbaz et al. 2010[30] | x | x | x | x | x | x | x | x | ||
Radl, Rajwar and Aro 2012[44] | x | x | ||||||||
Roets 2007[49] | x | x | x | x | x | x | ||||
*Roos et al. 2014[31]c | x | x | x | |||||||
*Roos et al. 2013[32]c | x | x | x | |||||||
*Sevilla et al. 2013a[34] | x | x | x | x | x | x | ||||
Sevilla et al. 2013b[33] | x | x | ||||||||
Shrestha et al. 2014[35] | x | x | x | x | x | x | x | x | ||
Smith-Oka 2014[36] | x | x | x | x | x | |||||
*Storey et al. 2009[37] | x | x | x | x | ||||||
Sung et al. 2014[38] | x | x | x | x | x | x | ||||
Wieslander et al. 2015[39]a | x | x | x | x | ||||||
Zielinski et al. 2009[40] | x |
My body is broken
My bladder and bowel are a mess.It can be difficult to empty my bladder or bowel because the prolapse gets in the way. It feels like I am giving birth when I go to the toilet. I have to use my fingers to splint my pelvic organs when I strain. I don’t eat because I am worried about getting constipated, and I take regular laxatives.It’s like having a ball in your vagina.It feels like I have a ball in my vagina. It is a bulge. I feel that something is going to fall out of me. It is an awful feeling that I am open. It pops out when I strain.Unrelenting pain and discomfort.I have had unrelenting discomfort and pain for years. I cannot bear it. I feel pressure, heaviness, fullness. My back and tummy hurt. I get painful spasms. My prolapse causes friction, and my vagina and rectum get itchy and sore. I get infections, discharge, ulceration and bleeding.My body is falling apart.I cannot even do ordinary things: I cannot sit, I cannot walk, I cannot run, I cannot exercise, I cannot lift things, I cannot work. I have to avoid or limit things. My body is falling apart. I live in a body that I cannot rely on. My body has lost its integrity. My body is no longer whole. It is irreparably damaged.
The life of a women can take its toll
The labour of childbirth.I had a difficult pregnancy and childbirth, I had lots of children, I didn’t rest after I gave birth and didn’t get any help. The body loses strength with every child. It is part of being a woman.Enduring women's work.The work that women have to endure takes its toll. I have done lots of heavy work. We have no time to rest. I am responsible for the household chores, childcare and cooking: I do heavy work. Hard work overwhelms us, and we don’t always get help.We learn to live with it.I have to be pragmatic. I got used to it. I have had time to accept it and adjust. I can get treatment, but I have become resigned to it. I have had to accept and focus on what remains.
I am broken
I am not fully present in what I do.My body, its sensations and limitations are at the forefront of every waking moment. I am distracted by it. I am always focusing on it. I constantly worry. It is always on my mind.I am being crushed.I am mentally broken. I cannot enjoy myself. I am sad. I am stressed. I am angry. I am frustrated. I am desperate. It has turned my life into a living hell. I cannot take it anymore. It feels like a life sentence.I am no longer me.I am having an identity crisis. I compare myself to what I was before. I cannot do the things that I used to love doing. I can only do what is necessary. My body is not me. I was strong. I was independent. I worked hard and was proud. I was enterprising and active. I never ask for help. I did not complain. I long for my old self.
It has taken the woman out of me
I see no beauty in me.I no longer like my naked body and I don’t want my husband to see it. My vagina is not normal: it is big, loose and ugly. I am no longer attractive or desirable. I no longer feel like a woman. I see no beauty in myself. I feel old. I grieve my sexuality. I have lost my femininity.I have no sexual desire.I have lost the desire for sex and avoid it. I am tired out. Sex is painful. I have no sensation. I don’t initiate sex. I grin and bear it. I hurry through it. I worry about what is happening down there: I might damage myself; it might hurt; my partner might see it or feel it; I might wet the bed or make it dirty. I can’t give myself to the moment. I cannot be spontaneous: I have to wash and wee first; I have to push the prolapse inside: I can only be in certain positions. It is a real turn off.I am worried that my partner will leave.I worry about my partners sexual needs. I am worried that my partner will abandon me. I fake orgasm. I have even thought about letting my partner have sex with someone else. My partner no longer respects me and has become violent, humiliates and insults me. Not all are like that.
My world is shrinking
I feel like a social outcast.I have lost connection with others. I have become socially isolated. I no longer invite people to the house or get out. I rely on my family to do things, and they can no longer depend on me. My in-laws humiliate me because I cannot do the things that wives and mums should do.Living in a gap between past and future.I am stranded in the present. I am living in a gap between what was and what could have been. What once seemed like a world of opportunity now feels contracted. My world is shrinking. I have lost my sense of wholeness and being-in-the-world. I worry about it getting worse. I have lost hope for the future. I am lost.
Pelvic organ prolapse is taboo
I feel ashamed.I am ashamed to tell anyone. It is embarrassing and stigmatising. It is taboo. I fear gossip and discrimination. It is humiliating. People will judge and shun me. I cannot face the shame of my family knowing. I feel disgusting. I cannot control my own body. I feel unclean. It is so unpleasant. I blame myself. I must have done something wrong. I kept lifting heavy things. I did not do my exercises.It is not something you discuss.Prolapse is hard to talk about it. There are no easy words. I don’t even know what to call it. It is too intimate to discuss. I suffer in silence. I have been hiding it for years. I don’t tell my family or friends, or even other women. I only told my husband when I could no longer hide it. I didn’t even tell my doctor. I feel alone.
What on earth is going on down there?
I don’t understand what a prolapse is.I don’t really know what is going on down there: I don’t understand the anatomy; I don’t understand what a prolapse is. You hear about incontinence but never about prolapse. If I hadn’t looked, I wouldn’t have found out about it. The information on the internet was overwhelming. I don’t want to ask questions.I was frightened that it was cancer.I was so scared. I didn’t know what was happening to me. I was worried that it was cancer or an infection. I am worried that I might develop cancer if I don’t seek treatment soon.
Powerless in healthcare
The health professional undermines my experienceI thought that I had a problem, but the health professional said that I didn’t. I started to doubt myself. I just accepted what they said. They don’t discuss it with you. I was left with more questions than answers. I feel like a nuisance. They did not tell me that prolapse could get worse or discuss the importance of exercise. I feel misled.The health professionals don’t take it seriously.The health professional dismissed my prolapse as ‘just bagginess’. They don’t take me seriously. They trivialize POP. They make you think that you are making a big fuss. They say it doesn’t look too bad and that it is very common. There is no sense of urgency.The health professionals don’t know what they are doing.The health professional does not seem to know about prolapse or how to treat it. You get different diagnoses. I am shocked about how little they know. They all have different ideas about it. I don’t even know if they are choosing the right treatment.
Which treatment should I choose?
It is difficult to get into the habit of exercising.I find it difficult to do pelvic floor muscle exercises regularly and accurately. I forget. I am not confident how to do it properly. I don’t know if I am doing it right. You have to get into an exercise routine. Sometimes other things take precedence: I put my family needs first.You have to learn to live with a pessary.I hadn’t heard of a pessary and didn’t know what it was. I was worried that my body might reject it, or that it might get stuck. I did not feel confident about removing and inserting it. I was not comfortable touching myself. It takes time to get used to the idea. It is not a cure. It can be uncomfortable, or cause bleeding or discharge. However, it gave me freedom to choose when to use it and to do things that I could not do before. It is also less risky than surgery.Surgery might not solve the problem.I just wanted to have surgery so that it was gone for good: a pessary or exercises will not cure me. However, I have to balance the risks and benefits: Surgery might be too risky for me; it might not get rid of my symptoms; I might still be incontinent; I might need another operation; it might come back; there might be complications; I had already had unsuccessful surgery; do I really want plastic bits down there? If surgery fails, the impact would be potentially devastating.
It was a relief to tell someone about it
I let it get so bad before I asked for help.I should have done something sooner. I let it get so bad. However, I had to weigh up lots of things before I decided to ask for help: It is so embarrassing; it seems trivial compared to other things; I didn’t have the money for travel or treatment; my life is too busy.It was a relief to know that I was not alone.It is a relief to tell people. I wish I had spoken sooner. It was so good to talk to someone else with POP. We shared our experience. I realised that I was not on my own, and I felt better. I am much more open now, and people are sympathetic. We don’t have to hide. I have become an advocate for other women with POP and that makes me feel good.