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Abstract

Background:

Endometriosis is a chronic inflammatory disease, characterised by pain and potential fertility reduction, affecting 6%–10% of women. Pain management courses may promote self-care and enhance patient satisfaction. However, research into the experiences of participation in such courses are lacking.

Objectives:

Design:

Qualitative study as part of a randomised controlled trial (NCT05091268).

Methods:

Semi-structured individual in-depth interviews were conducted between August and November 2023 with 19 women diagnosed with endometriosis, recruited from two University hospitals specialising in endometriosis care, through a patient organisation and social media, after participation in a multidisciplinary pain management course.

Results:

Reflexive thematic analysis yielded two main themes: (1) Insightful experiences with individual health literacy and (2) frustrating experiences with organisational health literacy. Participants reported a positive shift in their ability to self-manage endometriosis following the pain management course, demonstrating a progression from passive to active participation in their own care. The participants also expressed a strong and recurring need for enhanced dissemination of information, including a need for post-diagnosis educational courses, highlighting a demand for ongoing, interactive support tailored to their condition.

Conclusion:

A need emerges for improved dissemination of information, enhanced monitoring, and health expertise at an organisational level within the healthcare system. Thus, future health care services should aim to provide seamless, multidisciplinary treatment to improve patient satisfaction.

Registration:

Trial registry name: Effect of Physical Activity and Pain Education on Endometriosis-Associated Pain. Registration number: NCT05091268. URL: https://clinicaltrials.gov/study/NCT05091268

Keywords

endometriosis Norway health literacy organisational health literacy

Introduction

Endometriosis is a chronic inflammatory disease associated with varying degrees of pain and potential fertility reduction.¹ A significant prevalence of endometriosis is identified among women seeking assistance due to involuntary infertility, with estimates ranging from 30% to 50%. The assumed prevalence of endometriosis in the female population is estimated to be between 6% and 10%.² Individual experiences vary, with some women experiencing minimal or no symptoms, while others suffer from debilitating cyclical pain.¹ Endometriosis affecting the areas near the intestines and bladder can also result in pain during bowel movements (dyschezia) or painful urination (dysuria). In addition, dyspareunia, pain during intercourse, is common. It is further noted that endometriosis affects women at the peak of their working-age, from their late teens to their 40s,³ underscoring the clinical significance of understanding and recognising endometriosis as a public health issue nationally and internationally.

Previous studies on endometriosis reveal detailed information on how women with endometriosis experience living with the condition and their interaction with the healthcare system.^3
–5 It is described that women often feel dismissed, trivialised, and psychologised in their healthcare encounters.^6,7 Connor et al. stressed that the objective of the healthcare system is to function based on evidence-based practice.⁸ However, engaging in evidence-based practice necessitates thorough research, insights from treatment encounters and active participation of users, all of which are pivotal for the present study.

Receiving a chronic diagnosis implies the need for knowledge and tools to lead a fulfilling life.⁹ Palumbo conceptualises the capacity of an individual to comprehend health-related information and to formulate suitable informed choices as “health literacy,” portraying it as a multifaceted notion and an evolving procedure that incorporates a range of levels, aspects, and scopes.¹⁰ The concept of health literacy encompasses multiple definitions, with most definitions exhibiting significant overlap while highlighting different aspects. The definition of health literacy that we have adopted is that of the World Health Organisation; they define health literacy as “the personal knowledge and skills accumulated through daily activities, interpersonal engagements, and interactions spanning generations.”¹¹ The acquisition of these skills and knowledge is shaped by the organisational frameworks and resources at hand, facilitating individuals’ ability to access, understand, appraise, and use information and services to foster and sustain their own and others’ health and well-being.

Organisational health literacy is the systemic counterpart of individual health literacy, focussing on how healthcare systems facilitate users’ navigation, understanding, and utilisation of information and services for managing their health.¹² Achieving organisational health literacy necessitates integrating health literacy into all aspects of service delivery and organisational operations including women’s health. This involves incorporating patients’ and users’ health literacy into organisational and service development to tailor healthcare services accordingly.^13,14 Effective service organisation and provision should be easily accessible, and health information tailored to accommodate varying competencies desired by women with endometriosis.¹⁵

Research has demonstrated that endometriosis, and particularly the pain associated with it, significantly impacts quality of life and various life domains.¹⁶ This includes physical functioning, daily activities, social life, education and employment, sexual intimacy and partnerships, as well as mental health and emotional well-being. Therapeutic approaches encompass a spectrum of interventions aimed at alleviating pain symptoms and enhancing fertility prospects, both surgical and pharmacological. However, the National Institute for Health and Care Excellence (NICE) guidelines highlight that women with endometriosis often feel that information and support are not consistently provided in ways that best meet their needs.¹⁷ In addition to the NICE guidelines, the European Society of Human Reproduction and Embryology (ESHRE) calls for research on the potential benefits of non-medical interventions including pain management courses and self-management strategies.¹⁶ Good practice in this area, in both non-specialist and specialist settings, can enhance patient satisfaction with the care available and offered to them. This improvement may also positively impact both the patients’ quality of life and their relationship with healthcare professionals.

Aim

The study aims to describe the experiences of Norwegian women with endometriosis after pain management course and their view on optimal healthcare through organisational and individual health literacy. The study is guided by the research question: In terms of health literacy and the healthcare system in Norway, what are the experiences of women with endometriosis after completion of a pain management course? This study differs from an already published article analysing how women with endometriosis experience supervised exercise training as part of their management. The published article analyse data from 10 women participating in the intervention arm.¹⁸

Conceptualisation and theoretical framework of health literacy

To gain a deeper understanding of the experiences of women with endometriosis when interacting with the healthcare system in Norway, it is helpful to consider how they perceive both their own health literacy and organisational health literacy. This can be achieved by using the health literacy model presented in Figure 1, which explores the various dimensions of health literacy.^10,13 The model underscores the bidirectional nature of health literacy, emphasising that it is not solely an individual trait but rather a relational construct influenced by both personal capacities and the complexity of the healthcare system.

Figure 1.

Health literacy as a relational concept. Inspired by Finbråten et al.¹³ and Sørensen et al.³⁰

The first level of the model (top diagram) highlights the interaction between individual skills and the complexity of the healthcare system, demonstrating that an individual’s ability to access, understand, and apply health information is shaped by the structural and systemic challenges within healthcare services. The second level (bottom diagram) shifts the focus towards the skills of the healthcare system and the complexity of the individual, acknowledging that health services must be adapted to meet the diverse and often intricate needs of patients.

The notion of individual complexity encompasses biological, psychological, social and developmental factors, including the intricate functioning of the human body, emotional and cognitive states, cultural and social norms and the evolving healthcare needs across different life stages. Conversely, the complexity of the healthcare system includes organisational, financial, legal and human resource factors, such as the structure of healthcare services, coordination of care, patient information management, funding models, regulatory frameworks and variations in healthcare professionals’ expertise.

Health literacy as a relational concept was highlighted by Parker, who stated that the individual’s health literacy is sufficient when their knowledge and skills correspond to the demands and expectations of the situation, context or health service.¹⁹ Understanding health literacy as a relational concept has led to an increased focus on shaping health services to be more health-literate-friendly.¹³ As depicted in Figure 1, health literacy is the product of an ongoing interaction between individual capabilities and the systemic challenges within healthcare, making it a dynamic and context-dependent construct.

Methods

Study design

The study employed an exploratory-descriptive qualitative design, as outlined by Hunter et al.²⁰ An inductive approach was adopted, allowing patterns and themes to emerge from the data without predefined hypotheses, in line with Green and Thorogood. Data were collected through in-depth semi-structured interviews as this method permitted the collection of pertinent data on participants’ perspectives, experiences and attitudes.²¹ To ensure rigour this study adheres to the Consolidated Criteria for Reporting Qualitative Research.²²

Data sampling

The 19 women participating in the present qualitative study were drawn from a larger randomised controlled trial (RCT) including 81 women recruited between October 2021 and October 2023 from several sources: two specialised hospitals for endometriosis care in Norway, the Norwegian Endometriosis Association and social media. Women interested in participating in this RCT received written information about the study, and later they were contacted by telephone by members of the project group to ensure they met the inclusion criteria, namely: (1) Participants are women having a confirmed diagnosis of endometriosis through ultrasound and/or MRI and/or laparoscopy with histology, as well as presenting a moderate to high pelvic pain rated >4 out of 10 on the Numeric Rating Scale²³; (2) participants are aged between18 and 45 years old; (3) able to attend scheduled meetings during the study period and provide consent to participate; (4) participants can understand instructions giving in the Norwegian language.

Women were excluded if they (1) had surgery in the past 6 months, (2) had Botox treatment in the last 4 months, (3) had a severe pathology, (4) presented with cardiovascular or immune system diseases, (5) were pregnant or had given birth in the last 12 months, (6) had severe psychiatric disorders, (7) had recently undergone adjusted hormonal treatment, and (8) were unable to participate in the exercise classes. These criteria were given to minimise risk factors that could potentially impact the participants physical and mental health and preclude the potential effect of pain management.

The RCT included a 4-h multidisciplinary pain management course, held in five different sessions from March 2022 to January 2023. The course, led by a physiotherapist, a gynaecologist and a psychologist, adopted a biopsychosocial approach, integrating various aspect of patient care. Including information about general exercise, demonstration of pelvic floor muscle training, and offered instruction in relaxation and breathing techniques. Additionally, various devices for pain management were introduced, along with an overview of surgical and pharmacological treatment options for endometriosis. During the course, participants were given time and opportunity to engage in discussions and exchange experiences within the group, as well as with the healthcare professionals present.

Following this course, all 81 women, were randomised into two groups: one group received additional exercise training for 4 months, and the other group served as controls. In order to gain a deeper understanding of the women’s experiences with the pain management course, 27 women participating in the first two courses (March–April 2022) were asked for interviews, of which 19 consented for participation. The reasons for non-consent were no time for interview (n = 4), not interested (n = 1) and lost to follow-up from main study (n = 3). Furthermore, since this study includes the women’s experience after participation in the pain management course they are analysed as one group, regardless of group allocation. The sample was based on the model from Malterud et al., which suggests that there are five key factors that can help to determine information power – a narrow study aim, participant characteristics that are highly specific to the study aim, the use of established theory in the analysis of the data, a strong interview dialogue between the researcher and the participant, and a thematic analysis of each participant’s narratives.²⁴

The interviews were conducted 4 months after participation in the pain management course. Due to the organisation of the project, all the participants were recruited from a specific geographical area. Background characteristics are presented in Table 1. The mean age was 30 years old. The sample consisted of women with a high level of education, with 11 participants having completed university education and eight having completed high school. The majority of the participants were employed during the study period; three were on sick leave at the time of their participation in the study.

Table 1.

Participants’ background information.

Participants (pseudonyms)	Age range (years)	Educational level	Occupation status
Emma	30–34	High school	Sick leave
Monica	20–24	High school	Student
Anna	24–29	University degree (>4 years)	Employed
Julia	24–29	High school	Employed
Laura	20–24	High school	Employed
Sophia	35–40	High school	Sick leave
Patricia	35–40	University degree (>4 years)	Employed
Chloe	24–29	University degree (>4 years)	Employed
Lily	35–40	University degree (3 years)	Employed
Maria	24–29	University degree (>4 years)	Employed
Olivia	35–40	High school	Employed/student
Natalie	30–34	University degree (>4 years)	Employed
Isabella	30–34	High school	Employed
Ava	24–29	University degree (>4 years)	Employed
Harper	24–29	University degree (3 years)	Sick leave
Grace	30–34	University degree (>4 years)	Employed
Amelia	20–24	University degree (3 years)	Employed
Diana	24–29	University degree (>4 years)	Employed
Victoria	30–34	High school	Employed

Data collection procedures

The interview guide consisted of ten open-ended questions about the participants’ subjective experiences after participating in the project, coping mechanisms, self-image, prospects, their relationships with their partners and family and their experiences of living with endometriosis. The interview guide was developed with input from a representative of the Norwegian Endometriosis Association. At the beginning of each interview, the participants’ voluntary participation and ethical rights were explained. For this study, the following questions were asked, and their responses relevant to the pain management course analysed:

(1) What has been your experience of participating in this project?

(2) Has participation in the project changed how you cope with everyday life? If so, how?

(3) What are your perspectives on developing the best possible care for the treatment of endometriosis in the future?

Each interview lasted between 30 and 90 min. The reason for these differences in length was due to the interviews addressing a range of questions including their narratives of living with endometriosis. The interviews were audio recorded and transcribed verbatim; nonverbal responses were also noted in the transcript. Pertinent background information and informed consent were managed through the use of Nettskjema.no, an online assessment tool created at the University of Oslo, Norway. Nettskjema.no provides self-services for a range of data collection methods. Moreover, Nettskjema.no provides a secure Dictaphone application where the interviews were recorded and securely stored online. The transcript was distributed to the participants to afford them the opportunity to provide feedback and make revisions if they did not recognise themselves in the statements. Only minor feedback was provided. The interviews were conducted by one female researcher (M.K.T.), from August to November 2023, in a private room at one of the specialist hospitals. The researcher had no role in the recruitment or assessment of the participants and was not part of the exercise groups. However, the participants were familiar with the researcher as she had earlier given a presentation in the pain management course. The researcher consciously adopted an open and active role, and throughout the interviews she remained receptive to participants’ cues and refrained from seeking confirmation of preconceived notions. This approach aimed to foster a safe, neutral and unbiased atmosphere conducive to the accurate capture of participants’ perspectives.

Data analysis

Reflexive thematic analysis, developed by Braun and Clarke, was employed to identify themes that captured the experiences of women after attending the course; this allowed for an in-depth analysis of the data.²⁵ The research group has diverse expertise with backgrounds in nursing and social work (C.K. and M.T.) and physiotherapy and public health (M.K.T.), which provides a comprehensive approach to the research question. The researchers have been mindful of the roles and preconceptions throughout the analysis. By embracing a reflexive perspective, it was recognised that an understanding of participants’ experiences could be gleaned through their narratives, alongside an acknowledgment of the researchers’ influence in shaping knowledge. Therefore, maintaining reflexivity throughout the analysis process was essential.

The research group actively engaged in hermeneutic reflections, undertaking a thorough examination of the intricate interplay between preconceptions, professional roles and the process of interpretation.²⁶ These reflective dialogues facilitated the emergence of novel perspectives, fostering a deeper understanding of how our preconceptions and roles intricately shape the interpretation of the data. The analytical process involved an iterative back-and-forth between the data material and identified themes. The purpose of this was to enhance the credibility of the study by striving to ensure that the results accurately represent the study’s data material.²¹ While non-verbal responses were noted in the transcripts, they primarily consisted of gestural affirmations that supported verbal statements. These non-verbal cues were used to contextualise and verify our interpretation of verbal responses rather than as independent analytical units, as they aligned with and confirmed the verbal data without introducing additional thematic elements.

The analysis was carried out in six phases: (1) Familiarisation with the data – the interviews were transcribed by M.K.T., in Norwegian and reviewed by the same researcher, C.K. and M.T.; this was fulfilled without a predefined framework, to facilitate immediate data understanding. (2) Generating initial codes – during subsequent readings, codes were identified and noted, with additional readings conducted for comprehensive data capture. (3) Generating themes – identified codes were integrated into a comprehensive mind map, including quotations and reflections. After discussion among all members of the research group, the map was revised by C.K. to address the research question, and major themes were subdivided. (4) Reviewing potential themes – the revised mind map was further refined by C.K. and M.T. Discussions assessed the relevance and coherence of themes and codes. (5) Defining and naming themes – several formulations for naming themes and subthemes were developed; examples of the coding and themes are presented in Table 2. (6) Producing the report – C.K. drafted the initial narrative to ensure themes were supported by the data and reported cohesively.

Table 2.

Examples of the analysis.

Quote	Code	Potential theme	Final theme
. . . I am indeed happy about all the information I can get, and new experiences and new knowledge really . . . Just being able to ask questions and getting answers . . . so I thought the pain management course was very good . . . sharing experiences and meeting others, gaining more knowledge. (Sophia)	Grateful for information, positive experience	Increased knowledge provides security	Insightful experience with individual health literacy
It was like: now you are done with the surgery, you have endometriosis, we found this and that, now you have to go home . . . and I was like ‘okay, I have endometriosis, but what more do I do?’ . . . the fact that I was simply sent home left me questioning whether it was indeed endometriosis, and I still find myself pondering over it. (Monica)	What happens next, uncertainty, no information	Navigating the healthcare system, challenges, better follow-up	Challenges in follow-up care

To protect the participants’ anonymity, they were assigned pseudonyms. The quotations were translated from Norwegian to English, and repeated proofreading by all researchers was conducted to ensure both the quality and the preservation of the original meaning. The draft was discussed and revised within the research group, and all members agreed upon a final version to be presented. The various backgrounds of the research teams contributed to ensure validity, objectivity and transparency.²¹

Results

The participants’ experience was analysed into two principal themes, each comprising two subthemes. Theme 1: Insightful Experience With Individual Health Literacy; Subtheme 1a: Simple Tools for Pain Relief and Subtheme 1b: Gaining Control Over Their Own Body and the Disease. These subthemes reflect how participants developed practical skills and knowledge through a pain management course, which improved their ability to manage their condition independently. The second theme 2: Frustrating Experiences With Organisational Health Literacy is further subdivided into two subthemes. Subtheme 2a: Challenges in Follow-Up Care and Subtheme 2b: Desires for More Awareness and Reliable Information. These subthemes illustrate the systemic challenges participants faced in navigating healthcare services and accessing reliable information.

Insightful experience with individual health literacy

This theme captures how participants’ understanding and management of endometriosis evolved through the pain management course, demonstrating a progression from passive recipients of medical information to active participants in their own care. This progression demonstrates how enhanced individual health literacy can lead to both practical and psychological benefits in managing chronic conditions.

Participants consistently described how the pain management course transformed their ability to understand and engage with information about their condition. The course created an environment where complex medical information became accessible and meaningful. As Anna expressed: ‘It was beneficial to have someone talk about it [endometriosis] in a more accessible way instead of using medical jargon. When you’re sitting in that office [doctor’s office] . . . you have a thousand questions but can’t articulate them because you might feel it’s silly to ask.’ This quote illustrates how the traditional medical setting can inhibit understanding and engagement, while the course’s approach facilitated active learning and participation. The emphasis on accessible language and open dialogue enabled participants to bridge the gap between medical knowledge and practical application. The importance of timely and accessible information emerged as crucial for developing health literacy. Maria emphasised how ‘Receiving more information was reassuring’, highlighting the emotional support that knowledge provides. Sophia expanded on this value: ‘. . . I am indeed happy about all the information I can get . . . being able to ask questions and getting answers . . . sharing experiences and meeting others, gaining more knowledge.’ Her response captures the interconnected benefits of interactive learning and peer support. The timing of education emerged as critical, with participants emphasising the need for early intervention. Emma articulated this need: ‘[. . . after getting the diagnosis] . . . maybe one should be invited to some sort of pain management course or coping and information course . . . receiving a video doesn’t really help.’ This comparison between passive information (video) and interactive learning (course) highlights the limitations of traditional patient education and suggests the need for more engaging approaches immediately following diagnosis.

Simple tools for pain relief

The women in this study actively implemented the pain management tools they had learned into their daily lives. This encompassed a range of techniques, including breathing exercises, general muscle relaxation and relaxation of the pelvic floor muscles, as well as physical activity. Furthermore, some of the women utilised previously known techniques or tools to manage pain, tailored to their individual needs and preferences. The participants reported increased mastery over their pain using the tools they had been informed about during the pain management course. Specifically, breathing exercises were highlighted as useful, although these techniques did not eliminate the pain entirely. Julia stated: ‘[breathing techniques] They don’t make me pain-free . . . but I find a bit more calmness during the worst pain episodes; it has been very useful.’ Laura described it as regaining control: ‘I find them [breathing exercises] effective because then I manage to regain some control . . . yes, it is one of my most important tools.’ Furthermore, the use of a Transcutaneous Electrical Nerve Stimulation (TENS) machine was mentioned as a source of independence by Emma: ‘[using a TENS machine] . . . is a feeling of freedom, that you are not dependent on others.’

Gaining control over their own body and the disease

Several participants remarked that they felt an increased sense of control over the disease and their own body after the pain management course. By learning more about the tools that can be used in pain management, as well as understanding how these tools affect the body, they felt better equipped to handle the challenges associated with endometriosis. Sophia expressed this by saying: ‘I think that, from the pain management course, I learned something new that I didn’t know before and perhaps got some more answers regarding endometriosis.’ Furthermore, it was mentioned that the pain management course helped to reduce the fear associated with pain, as well as increasing understanding of the disease and its physiological mechanisms. Diana summarised this by saying: ‘I gained more answers and a deeper understanding from the pain management course. It was great to know more about the disease and why I experience pain, as well as understanding what actually happens in my body. This knowledge allows me to make better-informed choices in the future.’ Natalie highlighted it as follows: ‘After we attended the pain management course, I also thought that it is not dangerous to be in pain . . . I feel “wow, shit”, I feel I have gained a bit more control over my body in a way, and I am not as scared.’

Frustrating experiences with organisational health literacy

This theme underscores a notable obstacle in the accessibility and standard of healthcare provisions for females suffering from endometriosis in Norway. A distinct requirement emerges for enhanced dissemination of information, monitoring procedures and health-related expertise at an organisational level within the healthcare infrastructure, to effectively cater to this patient group.

The Norwegian healthcare system was described as difficult to navigate, with participants reporting that healthcare providers often demonstrated limited understanding of endometriosis-specific needs and challenges. This manifested in areas such as prolonged diagnosis times, inadequate post-diagnosis support and limited recognition of the impact of symptoms on daily life. Natalie remarked: ‘I find it very exhausting having to go back and forth, back and forth, between my gynaecologist and the hospital . . .’ Participants described difficulties in accessing necessary services and professionals within the healthcare system. Specific challenges were mentioned, such as finding physiotherapists with expertise in pelvic floor care. Laura described her experience: ‘Just finding a physiotherapist who understands the pelvic floor was not easy.’ Furthermore, the complexity and time-consuming processes associated with referrals and consultations were highlighted as challenges within the system. Victoria summarised the process as follows: ‘It’s always a process, and if you end up in such a situation [a period of struggling with the disease] starting that cycle with the general practitioner, gynaecologist, hospital . . . it is quite exhausting. I really hesitate to do it . . . if something were to happen now . . . [it would be difficult finding] the strength to initiate that process . . . it would be nice if one had been in a system continuously, so you avoid that process of being referred anew.’ Victoria’s statements can be interpreted as both a description of her current experience and an expectation for future improvement in the organisation of healthcare services for women with endometriosis.

Challenges in follow-up care

Participants expressed frustration over the lack of follow-up and support from healthcare personnel after being diagnosed with endometriosis. Patricia stated: ‘I am lacking kind of a specialist that I trust, who is really taking care [of me] and whose guidance I am following.’ Many felt left to manage the disease on their own; Maria expressed this opinion: ‘I have to take care of follow-ups on my own, there is no one else handling it.’ This led to feelings of being alone and unsure of how to further manage the disease. Monica described this experience by saying: ‘It was like: now you are done with the surgery, you have endometriosis, we found this and that, now you must go home . . . and I was like ‘okay, I have endometriosis, but what more do I do?’ . . . the fact that I was simply sent home left me questioning whether it was indeed endometriosis, and I still find myself pondering over it.’ Sophia emphasised this feeling, adding: ‘. . . you end up feeling a bit alone, you end up standing a bit on your own. When you are done with the surgery, you become somewhat clueless about what happens next, how it affects me and what happens . . . there are a lot of thoughts [uncertainties]. . .’.

Desires for more awareness and reliable information

Participants highlighted a strong desire for more information about endometriosis, both regarding the development of the disease and available treatment options. Laura pointed this out as follows: ‘There is almost no information about this disease, and you don’t know if the information is correct or not.’ The women often felt uncertain about where to find reliable information and experienced a lack of knowledge among healthcare professionals. Patricia remarked: ‘. . . The doctor should be much more aware of this [endometriosis]. . . there are still doctors maybe neglecting this knowledge or the fact that this disease exists.’ Several participants expressed a need for increased awareness about endometriosis among the general population. Emma summarised this by saying: ‘. . . I think everyone needs to be informed, even [sports] coaches . . . everyone around women, girls who menstruate need an increase in knowledge about what it [endometriosis] actually does to the body.’ There was also an emphasis on the need for better information about non-surgical and non-pharmacological treatment methods, such as physiotherapy and psychology. Laura expressed this by saying: ‘So, this [self-management] is trying something lower threshold [i.e. less invasive] than saying that you’re going to give yourself a hormone injection to put you into menopause . . . it’s not like you can just withdraw from it [injection].’

Discussion

The findings indicate that the participants experienced a positive change in self-managing endometriosis after attending the pain management course. A recurring desire and need for post-diagnosis courses emerged, which highlights an opportunity for healthcare providers to offer ongoing post-diagnosis support and target information. Participants also faced challenges navigating the Norwegian healthcare system, such as the complex referral processes and difficulty accessing specialised services. Moreover, they expressed dissatisfaction with the lack of follow-up care and support after diagnosis. A significant concern was the need for increased awareness and reliable information about endometriosis among healthcare professionals and the general population. Participants highlighted the need for greater knowledge regarding non-surgical and non-pharmacological treatment options, noting that this information is currently insufficiently provided, revealing gaps in the informational support offered by the healthcare system. Addressing these issues underscores the imperative for healthcare systems to adopt a more patient-centric approach, providing accessible information, streamlined processes, and ongoing support for women self-managing endometriosis.

In Norway, healthcare services must acknowledge the variability in health literacy among users in order to ensure patient-centred care, known as health-literate healthcare services.¹³ A report which aligned with the Norwegian Ministry of Health and Care Services’ strategy to enhance health literacy in Norway was developed, based on a population survey, to assess the level of health literacy among the population^27,28; this indicates that nearly 20% of the population encounters challenges in navigating the healthcare system, suggesting difficulties in accessing appropriate services. Even with basic anatomical knowledge and necessary reading skills, an individual’s health literacy can be limited, particularly when navigating an increasingly complex healthcare system.²⁹ Reports from this study confirm the results presented from Le et al., in which participants describe a fragmented healthcare system and called for improved coordination between services.²⁸ Similarly, the participants in our study reported that the Norwegian healthcare system was difficult to navigate, often involved multiple institutions, and communication with relevant parties was perceived as ineffective and impractical, the total of which resulted in repeated visits in both primary and specialised care. This not only highlights the potential individual costs, as demonstrated by a Swedish study by Grundström et al. among women with endometriosis but also emphasises the need to prioritise health literacy in the future management and organisation of healthcare services.⁴

It is concerning that patients who frequently use healthcare services, often with chronic diseases, tend to have lower health literacy.²⁸ Individuals with low health literacy are less likely to use preventive services, experience repeated hospitalisations, face an increased risk of misdiagnosis and delay seeking treatment. Low health literacy is also associated with poorer self-reported health and higher mortality.¹³ Lower levels of education have often been linked to lower individual health literacy³⁰; however, several women in this study reported higher levels of education, but still faced difficulties in finding, understanding and critically evaluating the information provided by the healthcare system. An individual’s health literacy is not solely attributed to educational level; is also influenced by experience and context.²⁷ For example, participants mentioned short hospital stays following surgery, where the information provided was perceived as limited, leaving them feeling clueless and alone. Short stays can affect the quality of interactions and health communication with healthcare personnel, including the availability of time to ask questions, receive explanations about treatment, and discuss follow-up care.²⁹ Participants expressed frustration with poor follow-up and the lack of long-term treatment plans. Unsatisfactory encounters with healthcare providers led them to seek information independently, but they often struggled to access reliable information. A crucial factor for effective self-management is the ability to access accurate and reliable information about the disease. A population survey in Norway found that many individuals struggle to critically evaluate health information, underscoring the need for accessible and trustworthy resources.²⁸

Patients with high individual health literacy, however, are less likely to be misdiagnosed and are generally more satisfied with the healthcare system, which contributes to patient safety and the quality of healthcare services. Through the pain management course, participants gained knowledge that enhanced their ability to self-manage the disease, leading to a deeper understanding of endometriosis and their bodily functions beyond diagnosis and medical procedures. Participants sought a holistic approach to self-management that considers the whole person, including physical, mental and social factors affecting life with endometriosis.³¹ This approach aligns with prior research, which also supports the need for a holistic perspective on self-management among women with endometriosis.¹⁵ It indicates that the demand for a holistic approach to self-management is recognised, not only by participants in the present study but also by a broader group of women living with endometriosis.

Patients in the Norwegian healthcare system are encouraged to be active participants within their own care, presupposing that they have sufficient knowledge and skills to make informed decisions about their health.²⁷ Participants felt that the information received during the pain management course empowered them to make better-informed choices in the future. However, critically evaluating health information can be challenging and requires skills, knowledge and resources that may not be accessible to everyone, potentially increasing health disparities.¹³ Improved access to reliable health information for this patient group can enhance disease management, supported by self-determination theory, where competence is central to fostering self-motivation.³² One Danish review examined guided self-determination for women with endometriosis and found that their self-management skills improved, leading to greater insight into their needs and behaviour and more knowledge about endometriosis.³³ Similarly, our findings show that women experience better management of endometriosis symptoms after receiving disease-specific information; they also support the notion that self-management is crucial for managing chronic diseases like endometriosis. The ESHRE guidelines has highlighted the lack of evidence for the potential benefits of pain-management interventions; this study thus contributes to understanding the experiences and needs of women with endometriosis for future care.¹⁶

Strengths and limitations

This study answers a call for research concerning pain management courses that focus on self-management strategies among a group of women suffering endometriosis. Thus, providing women with endometriosis advice about acceptable self-management strategies may have an impact on future clinical guidelines for endometriosis care. Although the interview guide was not pilot tested prior to the interviews, the questions was reviewed by an expert in qualitative research and a patient representative from the Norwegian endometriosis association. This ensured that the questions asked were relevant and easy to understand. Other strengths include the triangulation of researchers with different educational backgrounds in healthcare and social medicine and the use of known methodology, which increases the reliability and credibility of the findings.

We acknowledge some important limitations to the study. First, participants were already familiar with the interviewer through participation in the pain management course. Although the participants were instructed to be open and honest during the interview, this familiarity may have influenced participants, leading them to withhold complete honesty regarding the content of the course. However, previous qualitative research has demonstrated that researcher familiarity with vulnerable participants can enhance trust and facilitate more open dialogue.^34,35 Additionally, measures were taken to ensure methodological rigour, which included the interviewer to maintain a reflexive approach throughout the process and that the analysis involved multiple researchers to ensure diverse perspectives; data and researcher triangulation.³⁶ Despite this limitation our findings demonstrate external validity – they align with previous research in which participants expressed a desire for a more comprehensive treatment of endometriosis. Another limitation could be the sample of 19 women. However, the interviews provided us with statements from the diverse experiences of women participating, answering the study’s aim. Further, our reflexive approach throughout the analytical process strengthens our contextual understanding of the data.³⁷ Further, Norway is a multicultural society, which is not reflected in the study sample. Women from different cultures and ethnic backgrounds may face different challenges in their interactions with the healthcare system, particularly in the context of the need for culturally sensitive communication. Lastly, all participants were recruited from the same geographical area; the results of the study may not therefore have broader implications for women with endometriosis living in other geographical areas, who could have varied and differing degrees of access to healthcare services. Access to healthcare services may also be different among women with lower levels of education as opposed to the present sample.

Practical implications

The findings of this study advocate for enhanced access to patient-centred services that can provide up-to-date treatment, and a more holistic approach, in guiding patients in the self-management of endometriosis. Further resources should also be made available to educate healthcare providers, the public, patients and their families to raise awareness about endometriosis and how it affects these women. There is a need for a comprehensive approach to care for women with endometriosis which emphasises education, accessibility and support throughout the patient journey. Such measures can potentially improve self-management and enhance the quality of life for women living with endometriosis.

Recommendation for future research

The results from this study indicate a need to develop and evaluate interventions aimed at improving health literacy specifically related to endometriosis, among both patients and healthcare professionals. This could involve educational programmes, training sessions or targeted communication strategies. There is also a need to understand the long-term effects of self-management. Future research should strive to include women of different cultural backgrounds, exploring their needs and their perspectives of non-pharmacological and non-surgical therapies. One approach may be to perform single-case studies, thus emphasising cost-effective, patient-centred, and individualised care.

Conclusion

This qualitative study shows that women with endometriosis can benefit from pain management courses. Participants exhibited an improved ability to navigate the challenges of living with endometriosis, indicating a positive shift in their self-management of the disease; this left them feeling more equipped to effectively cope with the complexities of the condition, demonstrating improved understanding of endometriosis and adaptive coping strategies. Challenges are still experienced within Norway’s healthcare system, including complex referrals, limited access to specialised care and the negative perception of organisational health literacy. Enhanced information dissemination and institutional integration of health expertise are necessary within the healthcare sector to adequately address the needs of this patient group. Additionally, our participants advocate for increased awareness among healthcare professionals and the public about endometriosis.

Footnotes

Acknowledgements

We would like to express our sincere gratitude to the Norwegian Endometriosis Association, Oslo University Hospital, especially Tina Tellum, and the staff at Akershus University Hospital for their effort in planning the project and recruiting women. Additional thanks to Kristine Grimen Danielsen for her valuable input in planning the interview guide. The authors would also like to thank Rakel Gabrielsen for her input on the interview guide and for scheduling the interviews.

ORCID iDs

Charlotte Kvåle

Miroslava Tokovska

Merete Kolberg Tennfjord

Ethical considerations

The study was approved by the Regional Committee for Medical and Health Research Ethics (REK) (approval date 22 October 2019; reference number 2019/1236) and the data protection officer at Akershus University Hospital (2019_135). The study was registered on ClinicalTrials.gov (NCT05091268).

Consent to participate

The participants gave their written informed consent to participate in the study, and verbal informed consent was obtained again before interviews started. Data was anonymised. Identification numbers were used for analysis, and pseudonyms were created when reporting the findings.

Author contributions

Charlotte Kvåle: Methodology; Formal analysis; Writing – original draft; Writing – review & editing; Conceptualisation; Data curation; Validation; Visualisation.

Miroslava Tokovska: Writing – review & editing; Methodology; Validation; Visualisation; Supervision; Conceptualisation; Data curation; Formal analysis; Writing – original draft.

Merete Kolberg Tennfjord: Conceptualisation; Investigation; Funding acquisition; Methodology; Writing – review & editing; Validation; Visualisation; Project administration; Supervision; Data curation; Formal analysis; Writing – original draft.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The main RCT including data collection of the qualitative study was supported by the Norwegian Fund for Post-Graduate Training in Physiotherapy under grant number 139512. The article processing charges are payed by Kristiania University of Applied Sciences (reference 33421628). No grant from funding agencies in the public, commercial, or not-for-profit sectors was given for the analysis and writing of this specific study.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

To protect participant anonymity, the data material will not be available for other researchers.

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Women with endometriosis: Experiences with pain management and views on optimal healthcare through the concept of health literacy

Abstract

Background:

Objectives:

Design:

Methods:

Results:

Conclusion:

Registration:

Keywords

Introduction

Aim

Conceptualisation and theoretical framework of health literacy

Methods

Study design

Data sampling

Data collection procedures

Data analysis

Results

Insightful experience with individual health literacy

Simple tools for pain relief

Gaining control over their own body and the disease

Frustrating experiences with organisational health literacy

Challenges in follow-up care

Desires for more awareness and reliable information

Discussion

Strengths and limitations

Practical implications

Recommendation for future research

Conclusion

Footnotes

Acknowledgements

ORCID iDs

Ethical considerations

Consent to participate

Author contributions

Funding

Declaration of conflicting interests

Data availability statement

References