REVIEW PAPER

A meta-ethnography of patients’ experiences of chronic pelvic pain: struggling to construct chronic pelvic pain as ‘real’ Francine Toye, Kate Seers & Karen Barker Accepted for publication 21 June 2014

Correspondence to F. Toye: e-mail: [email protected] Francine Toye PhD Senior Qualitative Researcher Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, UK Kate Seers DSc PhD RN Professor, Director RCN Research Institute, Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK Karen Barker PhD MCSP Clinical Director (Musculoskeletal), Senior Research Fellow Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, UK and Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Science, University of Oxford, Nuffield Orthopaedic Centre, UK

T O Y E F . , S E E R S K . & B A R K E R K . ( 2 0 1 4 ) A meta-ethnography of patients’ experiences of chronic pelvic pain: struggling to construct chronic pelvic pain as ‘real’. Journal of Advanced Nursing 70(12), 2713–2727. doi: 10.1111/jan.12485

Abstract Aim. To review systematically and integrate the findings of qualitative research to increase our understanding of patients’ experiences of chronic pelvic pain. Background. Chronic pelvic pain is a prevalent pain condition with a high disease burden for men and women. Its multifactorial nature makes it challenging for clinicians and patients. Design. Synthesis of qualitative research using meta-ethnography. Data Sources. Five electronic bibliographic databases from inception until March 2014 supplemented by citation tracking. Of 488 papers retrieved, 32 met the review aim. Review Methods. Central to meta-ethnography is identifying ‘concepts’ and developing a conceptual model through constant comparison. Concepts are the primary data of meta-ethnography. Two team members read each paper to identify and collaboratively describe the concepts. We next compared concepts across studies and organized them into categories with shared meaning. Finally, we developed a conceptual model, or line of argument, to explain the conceptual categories. Results. Our findings incorporate the following categories into a conceptual model: relentless and overwhelming pain; threat to self; unpredictability, struggle to construct pain as normal or pathological; a culture of secrecy; validation by diagnosis; ambiguous experience of health care; elevation of experiential knowledge and embodiment of knowledge through a community. Conclusion. The innovation of our model is to demonstrate, for the first time, the central struggle to construct ‘pathological’ vs. ‘normal’ chronic pelvic pain, a struggle that is exacerbated by a culture of secrecy. More research is needed to explore men’s experience and to compare this with women’s experience. Keywords: chronic prostatitis with chronic pelvic pain syndrome, endometriosis, meta-ethnography, nursing, pelvic pain, qualitative research, review, systematic

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Why is this research or review needed? ● Chronic pelvic pain is a prevalent chronic pain condition with a high disease burden for both men and women. ● Qualitative research increases our understanding of people’s experience of what it is like to be ill and can thus lead to improvements in patient care. ● This is the first conceptual and internationally relevant synthesis of qualitative research exploring people’s experience of chronic pelvic pain.

What are the key findings? ● Chronic pelvic pain has an impact on a person’s sense of present and future self. ● There is a culture of secrecy surrounding chronic pelvic pain and women struggle to determine whether their pain is normal or not. ● There is limited research on men’s experience of pelvic pain and no study comparing the gendered experience of chronic pelvic pain.

How should the findings be used to influence policy/ practice/research/education? ● When planning care with people who have chronic pelvic pain, you should take into account the struggle they face

ensures that people’s experience informs policy and practice (Dixon-Woods et al. 2007a, Noyes et al. 2011). However, the proliferation of research and issues related to retrieving qualitative studies can make it difficult to use this knowledge (Sandelowski & Barrosso 2007). Qualitative synthesis integrates the findings of qualitative research and facilitates knowledge translation. Recent reviews suggest that the number of qualitative syntheses is increasing (Dixon-Woods et al. 2007a, Hannes & Macaitis 2012); for example, the number of qualitative syntheses published in 2008 doubled within four years (Hannes & Macaitis 2012). Insights from qualitative syntheses have contributed to our understanding of complex processes such as medicine-taking (Britten et al. 2002), adherence to diabetes treatments (Campbell et al. 2003), use of antidepressants (Malpass et al. 2009) and patients’ experience of chronic musculoskeletal pain (Toye et al. 2013a). Although there have been qualitative syntheses exploring CPP (Souza et al. 2011) and endometriosis (Denny & Khan 2006) and a recent critical narrative review of endometriosis (Culley et al. 2013), these studies offer a descriptive, rather than conceptual interpretation. The innovation of this meta-ethnography is to offer the first internationally relevant conceptual interpretation of patients’ experience of CPP.

to understand whether their pain is normal or pathological. ● When working with people who have chronic pelvic pain, take into account the gendered nature of this pain. Women may expect it and hide it; men may not report it. ● Education should reinforce the integration of mind and body, rather than a dualistic approach, to enable practitioners to provide appropriate care to people with chronic

Methods We aimed to use a conceptual qualitative synthesis to increase our understanding of what it is like to have CPP, identify areas for further research and inform effective health care for CPP.

pelvic pain.

Design

Introduction Chronic pelvic pain (CPP) is a prevalent pain condition with a high burden. Its multifactorial nature makes it challenging for clinicians and patients. CPP has been defined as ‘chronic or persistent pain perceived in structures related to the pelvis’ (Engeler et al. 2012). The absence of pathology can exacerbate the challenge of CPP and a greater understanding of patients’ experiences can help us understand this challenge.

Background Qualitative research aims to understand the experience of illness and make sense of the processes involved. Including qualitative research as part of evidence-based practice 2714

There are various methods for synthesizing qualitative research (Dixon-Woods et al. 2005, Sandelowski & Barrosso 2007, Barnett-Page & Thomas 2009, Campbell et al. 2011). Approaches range from descriptive to interpretive. Meta-ethnography is an interpretive form of knowledge synthesis that aims to develop a conceptual model (Noblit & Hare 1988). Reviews demonstrate that meta-ethnography has been successfully used to synthesize studies in health care (Campbell et al. 2011, Hannes & Macaitis 2012). There are no agreed guidelines for reporting qualitative syntheses. A statement to enhance the transparency in reporting the synthesis of qualitative research (ENTREQ) has been proposed (Tong et al. 2012) (Supporting Information File S1). This statement offers a guide, but may not be sufficiently nuanced to capture the essential reporting components of complex syntheses. © 2014 John Wiley & Sons Ltd

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Additional citations 5 (Ballweg 1992, Emad 2006, Markovic 2008, Savidge 1998, Whitney 1998)

Figure 1 Flow chart illustrating search

Records identified via data base searches (N = 488) (AMED = 0, CINAHL = 58 EMBASE = 83, MEDLINE = 238, PSYCHINFO = 109

Excluded on title screening (N = 371)

117 Retrieved

39 Duplicates removed

78 Screened abstract/text

51 Rejected

27 Included

32 Included

outcome.

Search methods Study Selection Some argue that it is not necessary to include all published studies in a qualitative synthesis (Noblit & Hare 1988, Campbell et al. 2011). However, we aimed to produce a conceptual analysis with a weight of evidence that would have resonance with the health community. We included published reports of qualitative studies exploring adults’ experience of CPP, including endometriosis. A senior medical librarian designed and undertook the search in collaboration with the authors. First, using a combination of free text terms and thesaurus or subject headings, we searched five electronic bibliographic databases (Medline, Cinahl, Embase, PsycInfo, Amed). An example search syntax is shown in (Supporting Information File S2). Additional thesaurus terms for qualitative research unique to Cinahl were also used: exp QUALITATIVE STUDIES/OR exp ‘REFLEXIVITY (RESEARCH)’/OR exp ‘CONFIRMABILITY (RESEARCH)’/OR exp FIELD STUDIES/OR exp QUALITATIVE VALIDITY. Endometriosis and prostatitis were included as search terms following an initial search. The search included studies from inception up until 10th March 2014 supplemented by citation tracking. As meta-ethnography relies on defining concepts, we limited the search to English language. We also set limits to include only adults. We did not use the ‘clinical query limits’ option for qualitative research, as this limit filtered out relevant qualitative studies. Search outcome We retrieved 488 potential studies (Figure 1). FT and KB screened titles and abstracts and excluded those that did © 2014 John Wiley & Sons Ltd

not report qualitative findings: for example, quantitative research, review studies and opinion pieces. We excluded papers that did not report patients’ experience (e.g. Fernandez et al. 2006) or that did not meet the review scope (e.g. genito-pelvic pain/penetration disorder (Svedhem et al. 2013). We excluded one paper on the basis of methodological integrity where women were interviewed by their own physician with no report of ethical consideration (Fauconnier et al. 2013). We included 32 papers; nine studies explored women’s experience of chronic pelvic pain (CPP) and two explored men’s experience. Twenty-one studies explored the experience of endometriosis. A description of studies is given in Table 1. Quality appraisal Based on our experience from a previous meta-ethnography (Toye et al. 2013a), we decided not to exclude articles on the basis of methodological quality (although we did exclude one article on the basis of uncertain ethical consideration). This decision is not unusual for qualitative synthesis as the use of quality criteria is widely debated (Barbour 2001, Eakin & Mykhalovskiy 2003, Dixon-Woods et al. 2007b, Campbell et al. 2011). Hannes and colleagues report that the number of qualitative syntheses using quality appraisal is increasing (Hannes & Macaitis 2012). The decision to appraise is confounded by the prevailing research culture where appraisal for systematic review is the expectation. Some authors argue that excluding studies on the basis of quality criteria may exclude insightful studies (Campbell et al. 2011). Others argue that there may be a positive relationship between sound method and positive contribution to the synthesis (Elmir et al. 2010). One of the 2715

F. Toye et al.

Table 1 Description of included studies. Number of participants (age)

Author

Diagnosis

Source

Data collection, analysis

(Grace & MacBrideStewart 2007a) (Grace & MacBrideStewart 2007b) (McGowan et al. 2007) (Moore et al. 2002) (Price et al. 2006) (Savidge et al. 1998) (Warwick et al. 2004)

CPP

NZ, prevalence survey

Open-ended interviews, phenomenology

42 (22–51)

CPP

NZ, prevalence survey

Open-ended interviews, phenomenology

40 (22–51)

CPP

UK, newspaper advert

32 (21–50)

CPP

UK, waiting for diagnostic laparoscopy UK, Four gynaecology clinics

Written stories, phenomenology Semi-structured interviews, constant comparison Semi-structured interviews, Grounded Theory Semi-structured interviews, not specified Semi-structured interviews, Interpretive Phenomenological Analysis Semi-structured interviews & diaries, constant comparison Focus groups, Discourse Analysis

(Zadinsky & Boyle 1996) (Grace 1995) (Ballard et al. 2006) (Cox et al. 2003a)

CPP CPP CPP

UK, Negative diagnostic laparoscopy for CP UK, hospital consultants

CPP

USA, regional medical centre

CPP & endometriosis Endometriosis

NZ, local health group and pelvic pain clinic UK, pelvic pain clinic

Endometriosis

(Cox et al. 2003b)

Endometriosis

(Denny 2004a)

Endometriosis

(Denny 2004b)

Endometriosis

(Denny & Mann 2007) (Denny & Mann 2008) (Denny 2009)

Endometriosis

Australia, day surgery for endometriosis Australia, day surgery for endometriosis UK, website; message board self-help group, gynaecology, snowball UK, website; message board self-help group, gynaecology, snowball UK, endometriosis clinic

Endometriosis

UK, endometriosis clinic

Endometriosis

UK, endometriosis clinic

(Emad 2006)

Endometriosis

USA, WITSENDO site

(Gilmour et al. 2008)

Endometriosis

NZ, local support group

(Huntington & Gilmour 2005)

Endometriosis

NZ, local support group

(Jones et al. 2004)

Endometriosis

UK, Gynaecology clinic

(Manderson et al. 2008)

Endometriosis

Australia, survey of women with reproductive health problems, newspaper, notice boards, snowball

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20 (Not specified) 26 (20–59) 21 (21–61) 8 (21–61)

14 (19–52) 36 (Not specified)

Semi-structured interviews, thematic, analysis Focus groups, thematic analysis

32 (16–47) 61 (20–64)

Focus groups, thematic analysis

61 (20–65)

In-depth interviews, thematic analysis

15 (20–47)

In-depth interviews, thematic analysis

20(20–47)

Semi-structured interviews, narrative analysis Semi-structured interviews, narrative analysis Semi-structured interviews, narrative analysis Online narratives, narrative analysis Unstructured interview, thematic approach feminist research principles Unstructured interview, thematic approach feminist research principles Semi-structured interviews, Grounded Theory In-depth interviews, Grounded Theory

30 (19–44) 30 (19–44) 30 (19–44) 17 (20s and 30s) 18 (16–45)

19 (16–46)

24 (21–44) 40 (20–78)

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Table 1 (Continued). Number of participants (age)

Author

Diagnosis

Source

Data collection, analysis

(Markovic et al. 2008)

Endometriosis

In-depth interviews, Grounded Theory

30 (20–78)

(Seear 2009a)

Endometriosis

Semi-structured interviews, thematic analysis

20 (24–55)

(Seear 2009c)

Endometriosis

Semi-structured interviews, thematic analysis

20 (24–55)

(Seear 2009b)

Endometriosis

Semi-structured interviews, thematic analysis

20 (24–55)

(Strzempko & Chesla 2007)

Endometriosis

Australia, survey of women with reproductive health problems, newspapers, notice boards, snowball Australia, snowball sampling; advert in newsletter of endometriosis support group Australia, snowball sampling; advert in newsletter of endometriosis support group Australia, snowball sampling; advert in newsletter of endometriosis support group USA, informational flyers

Not specified (women 23–48, men 24–50)

(Whelan 2007)

Endometriosis

(Ballweg 1992)

Endometriosis

(Whitney 1998)

Endometriosis

(Jonsson & Hedelin 2008) (Hatchett et al. 2009)

Male chronic prostatitis UCPPS

Individual interviews with partners and conjoint interview, interpretive phenomenology Focus groups and mailing list stories, Grounded Theory Letters from endometriosis association, not specified (described) Written responses on questionnaire, not specified (described) Interviews, phenomenology Open-ended questions in a patient journal, Grounded Theory

23 men, 24 women (22–76)

Canada, endometriosis support group USA, letters from endometriosis association USA, endometriosis support group – written responses Sweden, referred to urology USA, trial of physical therapies

Not specified (not specified) Not specified (not specified) 46 (not specified) 10 (30–62)

UCPPS, Urological chronic pelvic pain syndrome.

issues involved is the relative weight of methodological and conceptual quality (Toye et al. 2013b). A central feature of meta-ethnography is that the data are the concepts (Noblit & Hare 1988); however, deciding what these concepts are is not straightforward. Abstraction of concepts Meta-ethnography identifies key ‘concepts’ and compares these across studies (Noblit & Hare 1988). To do this, we uploaded a copy of all papers onto NVivo 9 software (Nvivo 2010). NVivo 9 facilitates the collection, organization and analysis of knowledge by ‘coding’ data under ‘nodes’. Data can be coded under several nodes simultaneously and the overlap between coding observed. We based our synthesis entirely on deciphered concepts. We did not re-organize or recode findings, but excluded data if we could not decipher a concept. To remain confident that our analysis was grounded in the primary concepts, we took a collaborative approach to concept abstraction. FT and KB read each paper to identify and describe their interpretations © 2014 John Wiley & Sons Ltd

of each concept and developed a collaborative interpretation of each concept. These form the raw data of our synthesis, in the way that narrative forms the ‘data’ of primary qualitative analysis. This allowed us to compile an inventory of concise interpretations of concepts grounded in the studies. If a section from the study consisted of a purely descriptive account or list of items that we felt the urge to ‘recode’, we did not include that section. We included all deciphered concepts in the final model.

Synthesis Following concept abstraction, the team organized concepts into conceptual categories through constant comparison (Charmaz 2006), thus ‘translating qualitative studies into one another’ (Noblit & Hare 1988). We did not aim to reach consensus, but to collaboratively develop interpretations. We kept endometriosis and CPP studies separate during analysis, yet found sufficient overlap in meaning to translate them into each other. We next developed a ‘line of argument’ or conceptual model that 2717

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‘Embodiment of knowledge through community’: I am not the only one who has this pain and there are others who share this experience.

‘Elevation of experiential knowledge’: I know my body more than the doctor does and I must learn to manage pain myself.

‘Experience of healthcare services’: My doctor does not listen to me or believe me, but even though I am getting nowhere, I keep going back.

(Zadinsky & Boyle 1996, Savidge et al. 1998, Warwick et al. 2004, Grace & MacBride-Stewart 2007b)

‘A culture of secrecy – managing the disclosure of pain’: I am embarrassed to talk to about my pelvic pain to others; people will think I am just moaning ‘Validation by diagnosis’: I need to know what is causing my pain so that others believe me

(Savidge et al. 1998, Price et al. 2006)

(Zadinsky & Boyle 1996)

(Zadinsky & Boyle 1996, Savidge et al. 1998, Moore et al. 2002, Warwick et al. 2004, Price et al. 2006, Grace & MacBride-Stewart 2007a, McGowan et al. 2007) (Grace 1995, Savidge et al. 1998, Warwick et al. 2004, Price et al. 2006, McGowan et al. 2007)

(Grace & MacBride-Stewart 2007a)

‘Construction of pathology vs. normal’: I don’t know if my pain is abnormal or whether this is normal for women.

(Zadinsky & Boyle 1996, Savidge et al. 1998)

(Ballweg 1992, Whitney 1998, Cox et al. 2003a, Denny 2004b, Huntington & Gilmour 2005, Ballard et al. 2006, Emad 2006, Whelan 2007, Denny & Mann 2008, Markovic et al. 2008, Denny 2009, Jones et al. 2004, Seear 2009c) (Cox et al. 2003a, Cox et al. 2003b, Huntington & Gilmour 2005, Emad 2006, Whelan 2007, Gilmour et al. 2008, Manderson et al. 2008, Markovic et al. 2008, Seear 2009b) (Whitney 1998, Emad 2006, Whelan 2007, Gilmour et al. 2008)

(Jonsson & Hedelin 2008, Hatchett et al. 2009)

(Ballweg 1992, Denny 2004a, Jones et al. 2004, Huntington & Gilmour 2005, Emad 2006, Gilmour et al. 2008, Seear 2009b) (Cox et al. 2003a, Denny 2004a, Jones et al. 2004, Emad 2006, Whelan 2007, Gilmour et al. 2008, Manderson et al. 2008, Seear 2009b) (Cox et al. 2003a, Denny 2004a, 2009, Jones et al. 2004, Huntington & Gilmour 2005, Seear 2009b) (Ballweg 1992, Cox et al. 2003a, Denny 2004a, 2009, Denny 2004b, Jones et al. 2004, Ballard et al. 2006, Manderson et al. 2008, Markovic et al. 2008, Seear 2009a) (Cox et al. 2003a, Denny 2004a, Jones et al. 2004, Huntington & Gilmour 2005, Emad 2006, Denny & Mann 2007, Strzempko & Chesla 2007, Gilmour et al. 2008, Seear 2009a) (Huntington & Gilmour 2005, Ballard et al. 2006, Emad 2006, Whelan 2007, Denny & Mann 2008, Gilmour et al. 2008, Denny 2009)

(Zadinsky & Boyle 1996, Savidge et al. 1998, Warwick et al. 2004, Grace & MacBride-Stewart 2007b) (Zadinsky & Boyle 1996, Savidge et al. 1998)

‘Relentless and overwhelming pain’: my pain is physically and emotionally overwhelming ‘Threat to self’: My body threatens my sense of self and I can no longer be the person that I once was ‘Unpredictability and future’: my present and future is unpredictable

(Jonsson & Hedelin 2008)

(Jonsson & Hedelin 2008)

(Jonsson & Hedelin 2008, Hatchett et al. 2009)

(Jonsson & Hedelin 2008, Hatchett et al. 2009)

Male CPP

Endometriosis

Female CPP

Conceptual category and description

Table 2 Conceptual categories, description of category and supporting studies.

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made sense of the categories (Noblit & Hare 1988). Developing a line of argument is an iterative process where findings are further abstracted to form a conceptual framework. After several amended versions, we collaboratively developed a diagram that expressed the team’s final line of argument. As there were only two men’s studies, we made the decision not to synthesize these into our model. However, for completeness, men’s concepts are listed in Table 2. Although there was a larger number of endometriosis studies included (and therefore more concepts), we found considerable overlap in the thematic categories for endometriosis and pelvic pain in women. Our findings support a unified conceptual model that can help clinicians understand women’s experience of CPP (including endometriosis). This overlap in experience adds depth to the conceptual model that goes beyond existing reviews.

Meta-ethnography of chronic pelvic pain CPP: CONCEPT EXEMPLAR: ACTION AND MOVEMENT (Grace and MacBride-Stewart 2007b): TEAM MEMOS: Pain relentless and affects all aspects of life. E.g. there are ‘the intolerable times when the pain is that bad that. . . the rest of your body doesn’t seem to be able to. . . carry on as normal’.

Threat to self This describes disruption to biography and an imagined future self. It describes the struggle to lead a normal life and fulfil the expected roles. For some, biographical disruption was linked to lost fertility and loss of imagined biography. People compared themselves to a healthy ‘real’ self before pain. This category incorporates an altered relationship with the body that threatens self (Emad 2006). ENDOMETRIOSIS:

Results The following section describes the final conceptual categories. Each conceptual category is illustrated by exemplars from the primary studies. Although we recognized that participants’ words can powerfully illustrate concepts, we use our own descriptions of concepts drawn from team memos; this emphasizes that the data of meta-ethnography are concepts not descriptive findings. A description of each conceptual category and supporting studies is given in Table 2. Conceptual categories include (a) relentless and overwhelming pain; (b) threat to self; (c) unpredictability and the future; (d) social construction of ‘pathology’ vs. ‘normal’; (e) culture of secrecy; (f) validation by diagnosis; (g) ambiguous experience of healthcare services; (h) elevation of experiential knowledge; (i) embodiment of knowledge through community.

CONCEPT

EXEMPLAR:

EVERYTHING

SHUT DOWN (Gilmour et al. 2008): TEAM MEMOS: Life interrupted – education, work, social life. Nothing to show so no one believes. Try to protect my privacy and confirm credibility. Social life curtailed by pain, bowel and bladder problems. Effect on mood, anger, irritability. CPP: CONCEPT EXEMPLAR: CPP HAS PERSONAL IMPACT (Zadinsky & Boyle 1996): TEAM MEMOS: Pain frightening, distressing and great personal impact. Referred to ‘healthy self’ before CPP. E.g. ‘It’s affected everything, my social life, everything. I’ve changed. . .’

Unpredictability and future Relentless and overwhelming pain Concepts in this category focus on the bodily experience of pain and its physical and emotional effects. Pain is described as ‘horrific’ and overwhelming. Along with crippling disability, the person experiences an overwhelming emotional rollercoaster (anger, low mood, guilt, loss, anxiety, frustration, fear and dread).

This describes the uncertainty and randomness of symptoms. The person is unable to make plans and move towards future goals, leading to a sense of powerlessness. Uncertainty could sometimes focus on fertility. ENDOMETRIOSIS: CONCEPT EXEMPLAR: CONTROL AND POWERLESSNESS (Jones et al. 2004):

ENDOMETRIOSIS: CONCEPT EXEMPLAR: PAIN CAN BE

TEAM MEMOS: I can’t make plans. I am ruled by endometriosis

WORLD DESTROYING (Emad 2006):

and its unpredictability. Many started to keep a diary in an attempt

TEAM MEMOS: The Body-in-pain demands to be heard ‘to be

to predict pain.

embodied’. Illness is experienced ‘as intractable and outside language as such experience can be’. We cannot reduce human suffer-

CPP: CONCEPT EXEMPLAR: ASSESSING NEED FOR SELF-

ing to ‘a mere physical problem’.

CARE (Zadinsky & Boyle 1996).

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F. Toye et al. TEAM MEMOS: Struggling with disruptive changes: undergone multiple invasive tests, but still no explanation. Effect on self, mood, esteem. Emotional rollercoaster. Unable to plan because of unpredictability.

Social construction of ‘pathology’ vs. normal This describes the struggle to decipher normal from pathological. Women were convinced by others, including healthcare professionals, that pain is ‘normal’. Comparison with peers could make them feel that others were ‘coping’ better and that they should just get on with it. Social comparison was an important part of defining normal and some women assumed that they were no different from others.

The secrecy surrounding pelvic pain is isolating. Absence of a medical diagnosis can mean that other people do not believe that pain is real. Attempts to conceal pain exacerbate isolation. Narratives of women ‘putting up with it’ make the balance between hiding and showing pain difficult. Women felt embarrassed and did not want to appear that they were not coping, or that they constantly ‘moaned’. Feelings of embarrassment, shame and low mood increased isolation. Some worried about going out because symptoms might start in public. Some worried that they would exhaust social support. Women therefore often kept pain quiet even if it was disruptive. CPP: CONCEPT EXEMPLAR: SHORTFALLS IN SOCIAL SUPPORT (Warwick et al. 2004):

CPP: CONCEPT EXEMPLAR: WOMEN GET THIS. IT IS NOR-

TEAM MEMOS: Lack of empathy felt; ‘all women get it!’ Women

MAL (Grace & MacBride-Stewart 2007a):

acknowledge that their own silence might be a barrier to empathy.

TEAM MEMOS: CPP confounds medical concepts of normal vs.

Pelvic pain a taboo subject. Pain not always taken seriously and

pathological. Erroneous dualism; not pathological and therefore

often doubted as there is no diagnosis. Support linked to medical

must be ‘normal’. Emphasizes the need to see pathology in social

endorsement. Felt labelled as ‘psychological’ or ‘neurotic’.

context where normality is constructed.

Although isolating, in some cases, CPP might strengthen relationships and some described how they were lucky to have a supportive partner.

ENDOMETRIOSIS: CONCEPT EXEMPLAR: CIRCUIT BREAKERS AND TREATMENT SEEKING (Manderson et al. 2008): TEAM MEMOS: Pain constructed as part of being a woman. Considered a ‘wimp’ by others for complaining. Difficult to locate

ENDOMETRIOSIS:

CONCEPT

EXEMPLAR:

BATTLING

ENDOMETRIOSIS TOGETHER (Strzempko & Chesla 2007): TEAM MEMOS: United fight against mutual enemy, not against

boundary between pain and normal.

each other. Strengthened relationships.

A culture of secrecy – managing the disclosure of pain This describes the isolating effect of a culture where ‘women’s problems’ remain hidden. CPP is experienced as a profoundly private experience and this can create tension between privacy and disclosure. Seear proposes a ‘menstrual etiquette’ (Seear 2009a), which conceals menstruation. This can make it difficult to know what ‘normal’ pain is, as comparative information is absent. ENDOMETRIOSIS: CONCEPT EXEMPLAR: A SECRET LITTLE WORLD (Gilmour et al. 2008): TEAM MEMOS: Tension between privacy and disclosure; ‘it can be quite a secret little world you live in’. Women did not want to discuss with male colleagues. Worried about pressure to give up work and getting a reputation for being off sick. CPP:

CONCEPT

EXEMPLAR:

EMBARRASSMENT

AND

Some endometriosis studies described painful sexual intercourse (dyspareunia), which was distressing and increased the sense of isolation; some avoided sex, whilst others endured it (Denny 2004a,b, Jones et al. 2004, Denny & Mann 2007). This could have a profound effect on, relationships, self-esteem and emotions. Some broke up because of this, whilst others remained supportive.

Validation by diagnosis This describes the need for a biomedical explanation. Having a diagnosis gave relief (e.g. it’s not cancer) and validation. Those diagnosed with endometriosis felt vindicated after long delays; others felt angry for not being diagnosed sooner. Diagnosis sanctioned social support and gave hope, although hope could be short-lived if no effective treatment became available.

SHAME (Grace and MacBride-Stewart 2007a): TEAM MEMOS: Leads to isolation. Feel guilty, selfish for not maintaining roles e. g. ‘having to slap a smile on my face when I really did not feel like smiling’. 2720

ENDOMETRIOSIS: CONCEPT EXEMPLAR: KNOWLEDGE, RESISTANCE AND THE ENDOMETRIOSIS PATIENT COMMUNITY (Whelan 2007):

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TEAM MEMOS: Diagnosis is a discursive act performed by physi-

ENDOMETRIOSIS:

cians. You need the label to enter the community. It is a medical

ACQUIRE KNOWLEDGE? (Whelan 2007):

HOW

DO

COMMUNITY

MEMBERS

category not a natural one. Key turning point is diagnosis, which women describe as validating their experience.

TEAM MEMOS: Search for knowledge could be precipitated by

CPP: CONCEPT EXEMPLAR: Accepting medical diagnosis (Grace

diagnosis or disillusionment with medical system. Self-education

and MacBride-Stewart 2007a):

viewed, not a supplement to medical knowledge but a replacement.

TEAM MEMOS: Although some women had a clear ‘diagnosis’, they continued to question diagnosis as not providing an explanation. Sense of uncertainty; name does not say why. Diagnosis does not answer ‘how come’.

Enabled them to challenge doctors’ claims and empowered. CPP: CONCEPT EXEMPLAR: SUSTAINING SELF CARE PRACTICES (Zadinsky & Boyle 1996): TEAM MEMOS: believing in oneself – ‘sense of self-worth in spite

Ambiguous experience of healthcare services This category describes how some women with CPP felt invalidated by healthcare professionals. Pain was normalized by doctors who compared them with other women who ‘coped’. Women felt fobbed off if not referred to specialists. Explanations such as – ‘it will be OK when you’re pregnant’ – did nothing to alleviate suffering. Women felt that their stories were not heard.

of the insurmountable problems involved in living with and seeking care’. Went through a period of self-questioning and affirmation of self-belief.

Only one study describes the negative dimension of being an expert patient (Seear 2009b). ENDOMETRIOSIS: CONCEPT EXEMPLAR: THE NEGATIVE DIMENSIONS OF BEING AN EXPERT PATIENT (Seear 2009b)

CPP: CONCEPT EXEMPLAR: AND THE DOCTOR SAID. . .

TEAM MEMOS: The third shift: Self-management becomes hard

(McGowan et al. 2007):

work physically and emotionally. This can become overwhelming. I

TEAM MEMOS: For women without a diagnosis, healthcare

am always on duty. Describes the complexity of information and

encounters were negative/stigmatizing. Lack of medical evidence

being trapped by the responsibility that comes from knowledge.

implied pain was in their mind; ‘psychologized’. Women began

Conflicting or ambiguous advice adds to the work of self-care. This

to doubt their experience. Women felt that their stories were not

commitment and responsibility becomes the primary burden.

heard

This category also describes a growing awareness that pain may be here to stay and for the need to make changes; this could be a turning point to moving forward.

This category also describes disillusionment with health care. Women felt disempowered and in limbo. However, some continued to seek a medical explanation, holding onto faith in the system in spite of negative experiences. ENDOMETRIOSIS: CONCEPT EXEMPLAR: I PUT MYSELF

ENDOMETRIOSIS: CONCEPT EXEMPLAR: IT’S BEEN A VERY HARD JOURNEY BUT IT’S ALSO BEEN A DOORWAY (Gilmour et al. 2008):

THROUGH IT AND NOTHING WORKS: (Huntington & Gilmour 2005): TEAM MEMOS: ‘all we can offer is the contraceptive pill, or you get pregnant and breastfeed’. Laparoscopy, diathermy, hormonal treatments: ‘I hate the feeling and yet I put myself through it and nothing works’.

TEAM MEMOS: ‘Emergent life’; begins a search for self-management. Becoming aware that pelvic pain was a chronic illness with no cure. Need to make changes to lifestyle. Becoming knowledgeable was a turning point. Need for information from healthcare professionals. Support groups, other women, internet important sources of information.

Elevation of experiential knowledge This describes how experiential knowledge and personal expertise becomes valued. In one study (Seear 2009c), noncompliance with medical advice was expressed as expertise that came from lived experience. Although experience of health care made some women doubt their own experience, at other times, there was a sense that their experience presided and that doctors lacked knowledge. © 2014 John Wiley & Sons Ltd

Embodiment of knowledge through community This describes the way that personal experience is endorsed and becomes knowledge through a community of peers. This community gives validation and a sense that you are not alone, thus reducing isolation; community engenders knowledge and a sense of belonging. Through talking, women find their experience in that of others and a sense 2721

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of shared narrative knowledge. This embodied experience contests the dominant health discourse. ENDOMETRIOSIS:

CONCEPT

EXEMPLAR:

WHAT

DO

PATIENTS CLAIM TO KNOW? (Whelan 2007): TEAM MEMOS: Experience of pain is presented as the reliable account. Focus on uncertainty and subjectivity rather than endometriosis as a known object. ‘No one agrees except those of us who

healthcare services; without a diagnosis, they experience pain as illegitimate. This exacerbates their isolation. For some, experiential knowledge overrides the voice of medicine and constructs pain as real. Talking to other people with CPP can play an important role in constructing pain as ‘real’ and allowing women to feel valued and believed. However, the culture of secrecy can mean that talking to others invalidates the experience.

have it’. Women resolve medical uncertainty by comparing to

TEAM MEMOS: In telling stories, the women break out of body

Men’s experience of CPP Although we did not include men’s experience in our model, we found some overlaps. For example, men also describe the physical and emotional impact (‘relentless and overwhelming pain’).

into a welcome and receptive environment. Find my experience in

CONCEPT

that of others – my story embodies, rather than denies pain

SLEEP AND DISABLING FATIGUE (Jonsson & Hedelin 2008)

embodied experience. Experience becomes the arbiter of truth. ENDOMETRIOSIS: CONCEPT EXEMPLAR: AGENCY (DOING SOMETHING ABOUT ENDOMETRIOSIS) (Emad 2006):

EXEMPLAR:

SUFFERING

FROM

DISTURBED

(acknowledge painful body and unconditionally accept me and my pain). The pain is here and I am here too.

TEAM MEMOS: Persistent fatigue can have profound effect on life and work.

Developing a conceptual interpretation

CONCEPT EXEMPLAR: PHYSICAL HEALTH (Hatchett et al.

Figure 2 describes our interpretation of the conceptual categories. Our model begins with the experience of relentless physical and emotional pain. The body becomes an antagonistic alien presence that threatens self. Present and future become unpredictable, making it impossible to plan or move towards a hoped-for future. I can no longer be the person that I once was. Central to the experience of CPP is the struggle to determine whether pain is abnormal or normal. To determine the reality of their pain, women access

2009): TEAM MEMOS: Pain variable and unpredictable. Urinary frequency and disputed activity. Frustrating and embarrassing. Fatigue throughout day.

They also describe biographical disruption the effect on relationships (‘threat to self’). CONCEPT EXEMPLAR: ROLE LIMITATION/SOCIAL HEALTH (Hatchett et al. 2009):

guilt: s ME IN ham ecy: e: is PAIN secr f ola o e t tion t e u q i t Alienated from my body E Life is not going to be As i imagined it would be I am no longer me Health care services

My own body experience

WHY? Pathological not normal ‘real’ legitimate

Not pathological normal not ‘real’ illegitimate

Valued believed validated empowered

Not valued disbelieved invalidated disempowered

Talking to others

Figure 2 Conceptual model – struggling to construct chronic pelvic pain as real.

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Meta-ethnography of chronic pelvic pain

TEAM MEMOS: Disrupted work roles and career opportunities. Withdrawal and isolation from family, co-workers and friends. Avoided socializing. Avoiding sex gave feeling of letting partner down and effected roles. Guilty for impact on family. Difference between past and present ‘real me’; loss of self and longing for ‘old self’.

Similar to women, the unpredictability of symptoms forced men to live by routines to manage life (‘unpredictability and future’). CONCEALING PAIN AND UROGENITAL PROBLEMS (Jonsson & Hedelin 2008): TEAM MEMOS: Effect on social life. Efforts to maintain a normal life. Avoid company and feel need to plan life carefully to avoid embarrassment. Life ruled by routines can be solitary. Damages self-confidence. Concerned about what other people think, but begin to get a more relaxed attitude over time.

Men also avoided company for fear of embarrassment and would choose not to talk to others. (‘culture of secrecy’). CONCEPT

EXEMPLAR:

ABRUPT

MOOD

SWINGS

AND

RESTRICTED SOCIAL LIFE2008 (Jonsson & Hedelin 2008): TEAM MEMOS: Can’t be the pleasant person I want to be and unable to reach out to others. Social encounters trying and avoid them. Self-chosen isolation. Hope others don’t notice their symptoms and do not want to talk to them. ‘Sense of duty, upbringing and fear of being different prevent him discussing his situation’

However, for the men in these studies, the need to explain pain focuses on reassurance that pain is not life threatening, rather than ‘validation by diagnosis’. However, like women, men needed empathy and to be taken seriously by healthcare professionals (‘relationship with healthcare services). CONCEPT EXEMPLAR: NEED FOR REPEATED CONFIRMATION (Jonsson & Hedelin 2008): TEAM MEMOS: Need to explain pain and know it is not life threatening (cancer); need for reassurance and empathy; need to be taken seriously and not ignored; need for honesty and frankness. Tacit acceptance of chronicity but continues to search for confirmation. Effect on relationships and emotions; ‘ever present strain’ of symptoms.

In contrast to women’s accounts, men’s did not describe the ‘construction of pathology’, ‘the elevation of experiential knowledge’ or the ‘embodiment of knowledge through community’. © 2014 John Wiley & Sons Ltd

Discussion This meta-ethnography presents the first internationally relevant conceptual interpretation of patients’ experience of CPP. Our interpretations support the findings of Souza and colleagues (Souza et al. 2011): the physical and emotional impact of CPP; the focus on medical diagnosis; loss of validation; normalization in the absence of pathology. There may be some important overlaps between experience of CPP and chronic musculoskeletal pain. For example, in Rheumatoid Arthritis, Campbell and colleagues highlight: need to explain symptoms; unpredictability and unrelenting nature of RA; disruption to self; dread of the future; loss of social roles (Campbell et al. 2011). In chronic musculoskeletal pain, we see a struggle: to construct pain as ‘legitimate’; to affirm self; to negotiate health care; to be valued and believed; to find the right balance between hiding and showing pain (Toye et al. 2013a). Our interpretation of CPP differs, in that it identifies, for the first time, the central struggle to construct ‘pathological’ vs. ‘normal pain’; a struggle that is exacerbated by a culture of secrecy. Although we chose not to incorporate men’s accounts into our model, there may be important gender differences. Researchers are beginning to explore the influence of gender on pain (Keogh 2004). For example, we know that men and women respond differently to pain and interventions (Unruh 1996, Keogh et al. 2005). Bendelow (1993, 2000) found that both men and women perceived that women had greater ‘natural’ ability to cope with pain and that men perceived pain without a diagnosis as less valid. This may help explain why men report less pain (Courtenay 2011). Charmaz has similarly highlighted gender differences in the experience of chronic illness (Charmaz 1994). CPP is often viewed as something ‘women get’ (Grace & MacBrideStewart 2007a). This gendering of CPP poses challenges for both women and men; whereas women are expected to keep it to themselves, men might not report it because it threatens their gendered identity (Courtenay 2000, 2011, Connell & Messerschmidt 2005). Men did not describe a struggle to construct the reality of pain, ‘the elevation of experiential knowledge’ or the ‘embodiment of knowledge through community’. For women, the struggle to validate CPP is played out through their healthcare experience where CPP is often experienced as lacking legitimacy. Women do not always feel believed or valued by healthcare professionals. This is exacerbated by and also exacerbates, the culture of secrecy surrounding ‘women’s problems’. The struggle to construct pain as ‘real’ is also played out through personal experience and the experience of others. Experiential knowledge demonstrates 2723

F. Toye et al.

that pain is ‘real’. Entry into a community allows women to feel valued and believed. Validation of knowledge through community raises an important issue for healthcare services; there are people who can benefit from appropriate diagnosis and treatment and it is important that they are empowered to access healthcare services alongside other resources. Toye and colleagues (Toye et al. 2013a) found that listening to the body, feeling part of a community, telling others about pain, realizing that pain is here to stay and becoming the expert were integral to moving forward alongside chronic musculoskeletal pain. We do not know whether men access support and construct knowledge in the same way. Our interpretation supports a model of care that treats pain as an embodied experience. Embodiment focuses on meaning which can only be understood in the context of the social, cultural and historical context. For Mishler (1984), the voice of the lifeworld expresses the impact of illness on a person. This contextualized experience precedes a person’s visit to the doctor; pathos precedes pathology (Canguilhem 1989). The voice of medicine reflects a ‘scientific attitude’’ which removes the person from their life context (Mishler 1984) and this may have an adverse effect on outcome (Barry et al. 2001). The dichotomy between ‘pathological’/‘not pathological’ makes it difficult for people with conditions that remain undiagnosed. Although biological findings do not fully explain pain, the Cartesian dualism of mind and body (erroneously) presupposes that if something cannot be found in my body, it must be in my mind. Meaning is vital to an individual’s emotional response and actions. However, diagnosis remains central to the therapeutic encounter (Foucault 2003) and this has clear implications for clinical practice and medical education. Importantly, our model supports a non-dualistic approach and collaborative approach and highlights the need for educational strategies to target pervading dualisms.

Strengths and limitations This meta-ethnography presents the first internationally relevant conceptual interpretation of patients’ experience of CPP (including endometriosis). We did not identify any study of non-western populations and there may be cultural differences in this experience. Some argue that as qualitative research focuses on the idiographic, synthesizing qualitative findings might remove us too far from the unique experience. However, qualitative research has the capacity to say something transferable beyond its context (Charmaz 2006). More research is needed to explore the 2724

experience of CPP in men and how this compares with that of women. There are methodological issues to be considered for qualitative systematic review. For example: how many studies to include? Noblit and Hare do not advocate an exhaustive search (Noblit & Hare 1988) and the number of studies included ranges widely (Dixon-Woods et al. 2007b, Campbell et al. 2011, Hannes & Macaitis 2012). Whereas in quantitative meta-analysis, omission of a paper can have a dramatic effect on statistically drawn conclusions, this might not be true of qualitative synthesis. Meta-ethnography does not aim to summarize the entire body of knowledge, or make statistical inference, but focuses on conceptual insight. In qualitative research, analysis does not begin when all data are collected; analysis and data collection occur simultaneously, often to the point where no new ideas are developing. Sampling strategies for qualitative methodologies might therefore be more appropriate for qualitative synthesis (Dixon-Woods et al. 2005).

Conclusion The innovation of our model is to demonstrate for the first time that central to the experience of CPP is the struggle to determine whether pain is normal or pathological. This meta-ethnography of CPP confirms that the biomedical model does not fully explain the experience of pain and that it is time to incorporate new models of care. These models should include the impact of gender on the pain experience. Our research shows that meta-ethnography can be used to elicit concepts that increase our understanding of patients’ experience and enable us to explain the context in which people make decisions about health care. Conceptual models developed from meta-ethnography thus have the potential to impact on quality of care.

Acknowledgements Sue Robertson, Senior medical librarian, Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, Oxford, UK.

Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Conflict of interest No conflict of interest has been declared by the author(s). © 2014 John Wiley & Sons Ltd

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Author contributions All authors agreed on the final version of the paper and made substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data. FT drafted the first version of the article; KS and KB revised that version critically for important intellectual content. All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:

• •

substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content.

Supporting Information Additional Supporting Information may be found in the online version of this article at the publisher’s web-site.

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