Empowered management for pelvic pain: The experiences of women with persistent pelvic pain participating in an online self-directed self-management program while they wait for interprofessional care

Abstract

Background:

Persistent pelvic pain is pain sensed in or around the pelvis and is often associated with negative cognitive, behavioral, sexual, and emotional consequences. The lack of interprofessional persistent pelvic pain management programs that address the complex interplay of biopsychosocial factors result in lengthy wait times and negative health outcomes. Limited access to evidence informed self-management educational resources contributes to poor coping strategies. Evidence shows that self-management education and strategies support patients while they wait for care. However, very few studies explore the patient’s lived experience of participating in an online educational program designed for persistent pelvic pain.

Objectives:

This study aims to understand the experience of women with persistent pelvic pain participating in an online, self-management education program (“Pelvic Pain Empowered Management” program) while awaiting care at an interprofessional pelvic pain clinic.

Design:

A descriptive qualitative approach was used to explore the experiences of women participating in an online educational program designed for cis women with persistent pelvic pain.

Methods:

We conducted semi-structured interviews with 11 women, transcribed the data verbatim using NVivo software (NVivo 12, QSR International Pty Ltd.), and analyzed inductively using previously established methods.

Results:

We identified four main themes relevant to women’s experiences of the program: (1) the program shaped expectations around upcoming pelvic pain appointments, (2) the program content is relevant and resonates with people with lived experience of persistent pelvic pain, (3) the program enhanced understanding of persistent pelvic pain, and (4) the program empowered people with skills and strategies to better manage their persistent pelvic pain.

Conclusion:

Our findings highlight how self-directed online patient education can be leveraged while persistent pelvic pain patients wait for care to support them in setting expectations around care and in engaging in pain self-management.

Keywords

Healthcare expectations patient education persistent pelvic pain self-management

Introduction

Persistent pelvic pain (lasting >3 months) is a common, debilitating condition, occurring in approximately 20% of women of reproductive age.¹ It has been recognized as a globally neglected reproductive health morbidity, accounts for substantial personal suffering, and has a direct impact on patient’s social and professional life.^1,2

Despite the prevalence of persistent pelvic pain, few pelvic pain management programs in Canada exist. The wait times among interprofessional persistent pain clinics, which may see patients with pelvic pain, can be up to two and a half years.^3,4 Prolonged delays in persistent pain treatment past 6 months are linked to worsening health, function, and quality of life for the patient.^5,6 Furthermore, delays in care can also negatively impact treatment outcomes with less improvement in pain interference, pain intensity, and health-related quality of life.⁷ In our recent study exploring the experiences of chronic pelvic pain patients waiting for care, we found that patients frequently reported significant delays in accessing interprofessional healthcare services.⁸ Participants reported struggling to navigate the healthcare system, feeling left “in the dark” and not knowing what to expect, and feeling their pain care journey was “on hold” while waiting.⁸

Women with persistent pelvic pain often experience negative cognitive, behavioral, sexual, and emotional consequences of this disease. Waiting for care can lead to development of negative coping strategies (such as avoidance and pain catastrophizing which is an exaggerated negative mental state during an actual or anticipated painful experience), increased pain severity, and worsening quality of life.^9,10 In addition to reducing wait times for care, it is also important that patients are supported prior to entering specialized programs. Providing biopsychosocial educational self-management resources, that provides people with persistent pelvic pain with adaptive coping strategies around the complex intersection between biological (e.g. genetics), psychological (e.g. mood), and social factors (e.g. social supports) that influence their persistent pelvic pain, can help them manage their disease.^8,11 Providing access to these resources while patients wait for care can also help them understand how to navigate the healthcare system.^8,11 Recent findings highlight the need for enhanced communication around wait times, clarity around appropriate care expectations, and resources to support patients while they wait for care to help them gain a sense of control of their healthcare journey and make informed health-related decisions.⁸ Providing patients with self-management educational resources for chronic conditions is increasingly recognized as a critical strategy for improving self-efficacy (individuals belief of their capacity to execute certain behaviors) and functional outcomes while potentially reducing healthcare costs.^12
–14 Specifically, self-management programs can help patients learn skills and strategies, develop more balanced and realistic thinking, and enhance self-efficacy.^15,16 Although wait times for group-based self-management programs have been demonstrated to be shorter than one-on-one care, groups are resource intensive and wait times remain longer than optimal.¹⁷ Online self-management programs have been tested and proven to be efficacious for improving self-management of persistent pain.¹⁸ However, there is little evidence for online self-management programming specific to persistent pelvic pain, a highly stigmatized pain condition.¹⁹ Furthermore, whether a self-directed persistent pelvic pain online program can provide self-management and navigational support to patients while they wait for interprofessional care is unknown.

Building on our previous work, the aim of this study was to understand the experience of women with persistent pelvic pain participating in an online, self-management education program (“Pelvic Pain Empowered Management” program) while awaiting care at an interprofessional pelvic pain clinic.⁸ Through participant interviews, we sought to understand how participation in this online self-directed program impacted their waiting experience.

Methods

Study design

In this qualitative study, we conducted semi-structured interviews aiming to understand the feasibility, acceptability, and experience using an online asynchronous, self-management program for patients with persistent pelvic pain waitlisted for an appointment at a persistent pain clinic. This study occurred between February 2021 and July 2022.

Study population

Participants were included if they (1) had any persistent pelvic pain longer than 3 months, (2) were fluent in written and spoken English, (3) had Internet access and comfort completing an online intervention, (4) were capable of providing consent, and (5) were waiting for an appointment at the persistent pain clinic at Women’s College Hospital. Individuals were excluded from the study if they had severe cognitive impairments, major comorbid medical or psychiatric illness that would interfere with their ability to take part in the program.

Recruitment

All participants were recruited from an interprofessional persistent pain clinic in Toronto, Canada, using convenience sampling methods. Eligible patient participants were initially identified by their care team and were sent a study information letter. A site-specific research assistant contacted potential participants who consented to be contacted by telephone, confirmed their eligibility, and invited them to participate in the study.

Intervention

Participants in this study were given access to the “Pelvic Pain Empowered Management” program. Over the course of the 6-week intervention, participants received a weekly email with a link to access an online module. Once received, participants could access the module anytime over the course of the study. Weekly email reminders were sent to prompt participants to complete the modules. Participants were provided technological support from the research team but no guidance or coaching regarding the module content was offered. The program was co-created by a team of interprofessional clinicians (pelvic physiotherapist, psychologist, urogynecologist, occupational therapist, nurse, and anesthesiologist), researchers, and people living with persistent pelvic pain and includes evidence-based self-management approaches to persistent pelvic pain management. Specifically, patients from our clinics pelvic pain program helped shape the content by indicating key topics, resources, and design feature they would find meaningful and relevant in an online self-directed program, also providing iterative feedback during the design process.

The Pelvic Pain Empowered Management program has six overarching themes that extend throughout the program: (1) you are not alone, (2) your pain is real, (3) acquiring knowledge about persistent pain is empowering, (4) you play an active and central role in your healthcare through self-management, (5) you are more than your pain, and (6) self-advocacy and clear communication are important. The modules introduce persistent pelvic pain self-management skills such as stress management, mindfulness, visualization, setting goals, sleep hygiene, problem-solving, and planning for flare-ups. The program is comprised of six online modules that each includes educational components, reflection and intention exercises, and information regarding community resources (Figure 1). The module topics include setting expectations; what is persistent pelvic pain; the biopsychosocial approach; empowered management; self-awareness, compassion, acceptance; values; and goal setting and moving forward. Table 1 describes the learning objectives of each module in detail. Each module included activities to encourage reflection on barriers/challenges with their current coping strategies, to help them identify their values, to set achievable goals, and to learn new coping strategies. Modules take approximately 30 min to complete.

Figure 1.

Example layout and content of online modules.

Table 1.

Topics and objectives of the online modules.

	Module	Objectives
1	Setting Expectations	To be introduced to the concept “Empowered Management” and begin to set expectations for their care process. To feel a sense of immediate support and start thinking about the members of the individual’s pain support team.
2	What is Persistent Pelvic Pain?	To build on the understanding that the pain experienced is a real and a subjective experience. To build an understanding of the body’s pain response, and how biological, psychological, and social factors can influence the pain experience specific to pelvic pain.
3	Biopsychosocial Factors and Approaches to Persistent Pelvic Pain	To build an understanding of the biopsychosocial factors that contribute to pelvic pain. To consider the factors that are influencing the individual’s own pain experience. To gain an understanding of the various approaches to address pelvic pain and which approaches one can/has implemented.
4	Empowered Management and Self-Awareness, Compassion and Acceptance	To understand what empowered management means and what the empowered management skills and strategies are. To feel supported knowing that “self” management does not mean that one must do it on their own but that they have autonomy and control over their management. To become “detectives” in one’s own life, and to be compassionate and accepting of where they are along their journey. To become more aware of the connections between the mind, environment, and body. To address how negative self-thoughts can cause harm. To work toward self-compassionate.
5	Values	To think about the values that underlie activities. To think deeply about what is important and what makes them who they are.
6	Goal Setting and Moving Forward	To brainstorm SMART goals that are guided by values. To discuss the importance of communication with providers and communication strategies. To summarize what they have gained from all these modules.

Data collection

After the timeframe of the 6-week intervention, participant interviews were conducted to assess engagement, acceptability, and satisfaction with the “Pelvic Pain Empowered Management” program (see supplemental materials). Interviews were conducted over Zoom by a research coordinator (E.B.; female, MHE, with lived experience of pelvic pain) who is an experienced (MSc) qualitative interviewer. The interviewer was a young adult female, who was not involved in the creation of the program or in program implementation. They had no prior relationship with the participants. All interviews were audio-recorded, transcribed verbatim using NVivo software, and verified for accuracy. Written field notes were also recorded by the interviewer during each interview to capture behavioral and emotional responses as well as any observations or overall impressions. Participants also completed a patient characteristics and demographics survey. Study data were collected and managed using REDCap electronic data capture tools hosted at Women’s College Hospital.^20,21

Data analysis

Interview transcriptions were conducted using NVivo software (NVivo 12, QSR International Pty Ltd.) which allowed for online coding and annotation of text. The study employed simple content descriptive analysis as outlined by Sandelowski for the analysis of the qualitative interviews. Transcripts were read iteratively by members of the research team and codes were determined across several transcripts until the number of new codes was saturated.²² A master code book was developed collaboratively to increase coding reliability (E.B., R.B., and N.M.). All transcripts were double coded and reviewed by members of the research team (E.B. and R.B.). The relationships between the codes were discussed through an iterative process in which categories and themes were established. Categories and themes were reviewed against exemplars from the original text to ensure that they were representative of the data. Exemplars from the original narrative text were pulled to illustrate at the category level. All disagreements about coding, categorizing, or theming were resolved through consensus discussion between team members (R.B., E.B., R.W., and N.M.).

Results

A total of 35 people were approached about the study and 27 participants consented to complete the Pelvic Empowered Management program. Reasons people declined participation in the study included being too busy at the time, not interested, and health reasons. Qualitative interviews were conducted until saturation was reached and included 11 women aged 21–48 years (inclusive), median age of 33.5 years. Interviews were approximately 25–60 min in length. All women had persistent pelvic pain documented by the referring provider and had been waiting for interprofessional pelvic pain care for a median of 79 days, ranging from 48 to 385 days. The pain duration reported varied across participants (average = 113 months; standard deviation (SD) = 89 months). Table 2 shows detailed participant information. Below we describe the four identified themes that emerged in relation to participants’ experiences with the Pelvic Pain Empowered Management program while they awaited access to care at an interprofessional pelvic pain clinic in Toronto. All participants self-reported that they accessed each module but relayed varying times spent on each module.

Table 2.

Participant demographics and clinical characteristics.

Age (years)	n (%)
21–30	4 (36.36)
31–40	2 (18.18)
41–50	4 (36.36)
NA	1 (9.09)
Ethnicity	n (%)
Indigenous and white	1 (9.09)
South Asian	1 (9.09)
White	9 (81.82)
Highest level of education achieved	n (%)
High school	2 (18.18)
College degree/diploma/certificate undergraduate degree	6 (54.55)
Master’s degree	3 (27.27)
Living status	n (%)
Rent	7 (63.64)
Own	2 (18.18)
Temporary housing (including living with a friend/family)	1 (9.09)
Other: alternate between post-secondary residence and parents’ home	1 (9.09)
Occupational status	n (%)
Paid employment outside the home/full time	7 (63.64)
Other: disability	2 (18.18)
Other: student	2 (18.18)
Method of household income	n (%)
Paid employment	6 (54.55)
Partner/spouse	1 (9.09)
Ontario disability support program	2 (18.18)
Long-term disability	1 (9.09)
Other	1 (9.09)
Length of time living with pain (months)	n (%)
⩽30	3 (27.27)
31–119	2 (18.18)
120–200	4 (36.36)
201–300	1 (9.09)
NA	1 (9.09)
Wait times: number of days waiting prior to study
Mean	117 days
Median	79 days
SD	104 days
Range	48–385 days

NA: not applicable; SD: standard deviation.

Here, we describe four identified themes relating to the experience of women with pelvic pain engaging in an online self-directed program while they wait for interprofessional care.

The program shaped expectations around upcoming pelvic pain appointments

The program impacted their waiting experience by helping shape participant expectations around their future appointment at the specialized pelvic pain clinic. Many participants expressed how the content around “Setting Expectations” was imperative in helping them understand what the pelvic pain clinic offers as it gave them “more structure of what to expect” (Participant 6) and helped them “prepare and understand” (Participant 7) what to expect for their appointment.

Participants highlighted that the program demonstrated how they could actively prepare “for [the appointment] . . .rather than just coming in with, like having nothing and maybe being overwhelmed by the amount of resources they get at their first appointment” (Participant 7). Furthermore, it helped them understand “the questions [they] can ask, and . . . what [to] really focus on” (Participant 9).

Participants indicated they were initially uncertain about what to expect and spoke of how reassured they felt by the program:

Having an entire module . . . being where this is what’s going to happen, this is what you should bring to your appointment . . . These are the people you’re going to meet with. That was extremely helpful for me because I suffer from anxiety because of all of this. (Participant 4)

Participants also relayed how, by having a better understanding of what to expect, they had a renewed sense of hope while they wait for their appointment:

I think at this point of time, I am very optimistic that, yes, there are certain options that I’ve learned through the modules . . . and I’m hoping that the appointment will resolve some issues . . . I already feel better. (Participant 5)

However, one participant relayed how, despite participating in the program, they “[to protect myself I] try to keep my hopes low because I’ve put my faith in so many doctors that haven’t been able to help me, and that can be really painful” (Participant 2).

The program content is relevant and resonates with people with lived experience of persistent pelvic pain

Throughout the interviews, participants expressed how the program resonated with them and provided relevant information and strategies that were both feasible and meaningful while they wait for care:

The way the modules talked about setting goals and adapt hobbies and do the things that matter to you in a way that meets your health needs resonated with me a lot more than a lot of stuff I’ve seen before.” (Participant 1)

They were validated by the program’s accurate representation of living with pain and helped participants get their “power back” (Participant 8). Participants also expressed how features of the program such as the animated videos, self-reflection exercises, information provided in the text, and additional resources helped make the program approachable, understandable, and engaging:

“It was for the average person. You’re not talking in clinical terms. Look, I didn’t go to medical school. And that’s why I love your modules. You made them real. (Participant 6)

The program enhanced understanding of persistent pelvic pain

Participants indicated that the program had “so many great resources and as well as articles to learn more about it [persistent pelvic pain]” (Participant 9). Participants expressed an appreciation of a biopsychosocial understanding of pain. For example, one participant noted, “it’s not just like the chemical and the physical but the brain plays a big part in it as well” (Participant 2). Many participants highlighted the importance of the messaging around self-compassion:

I need to remember that, you know, it’s not my fault and be kind to myself and stuff . . . it was like hard to read about that stuff, even though that I know that it’s important. So, it was a good reminder for me. (Participant 2)

Importantly, acquiring a better understanding of a biopsychosocial approach to pain fostered their understanding of their body, emotional health and highlighted the active role they could play as they waited. This is highlighted in a participant’s observation that a biopsychosocial understanding shifted her “limited understanding of what it is my body’s going through . . . and contributed to my mental health and how I should be approaching it as I’m waiting” (Participant 5). Participants gained knowledge while waiting for their appointment that “helped cope with them [pain levels] way better . . . that has made just a really drastic difference in how I feel mentally and physically” (Participant 4).

The program empowered people with skills and strategies to better manage their persistent pelvic pain

Participants expressed that the program empowered them prior to their appointment:

I definitely feel more empowered now. I think it helped me kind of get out of the dark cloud. Now I feel like I can actually get a handle on things once I have all the resources I need. And that just feels really good. (Participant 4)

Participants expressed how much the program helped them to cultivate useful skills and strategies while they waited for interprofessional specialist care. For example, one participant spoke about using “pacing [and] distraction things” to help with her pain and to only “plan one activity a day” (Participant 1). Another participant shared how participation in the program impacted multiple levels of her own behavior, and shifted her attitude, saying “every single aspect of my life has probably changed, like just the way that I eat and my physical exercise . . .” (Participant 7). Participants also indicated that the content helped change their attitudes toward themselves such that they were better able to “give [themselves] more love and understanding” (Participant 3).

Participants discovered the power and control they could regain in their lives using the strategies and skills provided in the program to build a toolbox that was specific to their life and journey. This appeared to reduce feelings of helplessness, illuminated the more central and active role they can play in their own self-management, and reclaim a sense of choice and power:

I feel like I’m being handed an opportunity to take something back, like to take back a little bit of the power that I feel that I have lost because of this, and it’s been . . . really difficult because, like, I’m not one to do that. I’m not one to hand my power over to anyone or anything. But unfortunately, with endometriosis, I had no choice. It took it from me. So, it’s kind of like . . . a war. And I feel like through this [the program], I’m being handed like somebody is literally reaching out a hand and saying, we got you. So, and it’s like . . . I’m being handed a brand-new toolbox of things that I can use to help myself. (Participant 8)

Discussion

This study sought to understand how participation in an online, self-directed, self-management program impacted the experience and perceptions of participants waiting for interprofessional pelvic pain care. We found that participation in the Pelvic Pain Empowered Management program provided support while patients wait for care and shaped expectations and provided clarity around future appointments. Furthermore, participation in the program provided valuable resources and strategies that resonated with their lived experience and empowered them to play an active role in managing their pain.

Previous studies have shown that people need support while awaiting care; they expressed feeling “on hold” while waiting to access persistent pelvic pain care, feeling lost in the health system, as well as feeling uncertain and in need of guidance to better manage their pain.⁸ Deslauriers et al.⁷ highlighted the need to reassess pain management approaches as well as the need for education and self-management resources at an early stage. Unmet patient expectations can lead to poor patient satisfaction and weaker adherence to treatment direction.²³ Conversely, supporting patients in structuring their expectations is an effective way to optimize patient satisfaction levels.²⁴ Our findings demonstrate that participation in the Pelvic Pain Empowered Management program supported health system navigation and improved transparency by clarifying expectations for upcoming appointments. Participants expressed how “helpful” it was to have information about what would happen at the clinic as it reduced their anxiety. Reducing anxiety about medical appointments can lead to improved appointment attendance and may facilitate more effective patient-provider communication—outcomes which support patients to obtain appropriate care.^25,26

Our findings highlight the importance of supporting patients with managing expectation around their care and that the waiting time prior to an appointment is an appropriate setting to shape these expectations. For example, Bhana et al.²⁷ suggest this take place at the point of referral to help a patient understand what can realistically be achieved. Our program begins by explaining the clinical setting and helps participants understand what to expect around the care they will receive. It is especially important to set patients up with realistic expectations when dealing with complex chronic conditions like persistent pelvic pain as many people living with this pain report higher degrees of pain, and feelings of stigma.^19,24

Given the physical, psychological, and social components that contribute to persistent pelvic pain, therapeutic approaches to pain management should target both gynecological/biological factors as well as address psychosocial factors.²⁸ However, for many patients, treatment approaches beyond or in addition to pharmacotherapy or surgical intervention, including psychosocial therapies and self-management, are novel concepts.⁸ The Pelvic Pain Empowered Management program was designed to provide pain neuroscience education and navigational support for resources around the core tenets of the biopsychosocial approach. Participants indicated the value of having resources tailored to persistent pelvic pain in supporting patients in the behavioral self-management that is needed to manage this type of persistent pain.

Providing patients with resources and strategies and reinforcing that there are others living with persistent pelvic pain as well as the access they will have to an interprofessional team, empowers them to play a vital role in managing their pain and reduces feelings of isolation.²⁹ Previous research shows that online patient education helps improve a patient’s emotional state as they gain knowledge on how to manage their condition while also allowing them to be more engaged at their medical appointments.³⁰ Similarly, participants in our study reported that the modules helped change the way they thought about their pain, which led them to change the way they acted in managing persistent pelvic pain. This focus on behavioral changes in self-managing chronic diseases is recommended by the World Health Organization as an effective treatment strategy.³¹ The use of self-management strategies to help cope while living with persistent pelvic pain is of vital importance.³² Evidence indicates that people with persistent pelvic pain frequently use negative coping strategies such as avoidance and pain catastrophizing which are related to higher self-reported pain and lower quality of life.¹⁰ This program helped participants engage in active coping strategies which may help them better manage the ongoing stressors associated with persistent pelvic pain.³³ However, clinical outcomes associated with participation in this program require further study.

Existing research has explored self-care strategies employed by individuals with persistent pelvic pain and emphasized the challenges associated with finding relevant, credible, and accurate information that could support their self-management.³⁴ Participants in our study expressed that the content in the Pelvic Empowered Management Program was relatable, interesting, and provided helpful coping strategies.^35,36

Our study was limited by our convenience sample of women referred to a single site by a referring provider who were waiting for interprofessional pelvic pain specialist care. Participant time spent navigating the healthcare system, waiting for access to our interprofessional clinic and years living with persistent pelvic pain varied, which may have impacted their engagement with the program and perceptions on the impact of the program while they waited for a clinical appointment. Our participants appeared to be educated and predominantly Caucasian which is important to consider in relation to digital literacy and understanding psychoeducation. Furthermore, the Pelvic Pain Empowered Management program was specifically tailored toward women waiting for interprofessional care, and therefore, our study conclusions are not generalizable beyond this context. Future iterations of the program can be tailored to or inclusive of other genders and can be adapted to be applicable in different healthcare settings to support self-management. While we focused on how the experience of awaiting care was shaped by engaging in the Pelvic Pain Empowered Management program, future work is required to elucidate the health and system level outcomes of engaging in self-directed online self-management programming.

Conclusion

In conclusion, we leveraged technology to overcome barriers to access to care and introduced active self-management in preparation for chronic pain specialist care within the unique context of persistent pelvic pain. We found that the patients valued, enjoyed, and reported benefit from participating in the Pelvic Pain Empowered Management program and identified that participation in this program (1) reduced reports of stress and set expectations around future appointments, (2) enhanced understanding of their condition and of the biopsychosocial model of care, and (3) and provided useful coping strategies and reinforced self-management behaviors. These findings have direct clinical application; with access to the Pelvic Pain Empowered Management program, patients do not have to wait to engage in their persistent pelvic pain self-management journey.

Supplemental Material

sj-docx-1-whe-10.1177_17455057231224960 – Supplemental material for Empowered management for pelvic pain: The experiences of women with persistent pelvic pain participating in an online self-directed self-management program while they wait for interprofessional care

Supplemental material, sj-docx-1-whe-10.1177_17455057231224960 for Empowered management for pelvic pain: The experiences of women with persistent pelvic pain participating in an online self-directed self-management program while they wait for interprofessional care by Emeralda Burke, Tania Di Renna, Nida Mustafa, Carleen Ginter, Wendy Carter, Celeste Corkery, Sarah Sheffe, Rosemary Wilson, Nucelio Lemos and Rachael Bosma in Women’s Health

Footnotes

Acknowledgements

Thank you to Adriano Nella for research support.

Declarations

Author’s Note

Nucelio Lemos is also affiliated to Department of Obstetrics and Gynaecology, University of Toronto, Toronto ON, Canada.

ORCID iDs

Rosemary Wilson

Rachael Bosma

Supplemental material

Supplemental material for this article is available online.

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