Empowerment of Women with Endometriosis from the Advanced Practice Nurse Care Perspective: A Concept Analysis

Empowerment in women with endometriosis emerged as both a dynamic process and an outcome shaped by contextual, emotional and, self-regulatory factors related to the disease. Six interrelated core elements form a conceptual model: Effective Communication, Access and Support Resources, Information for decision-making, Advocacy, Health-Self Management and Additional Resources and Support. These elements interact to promote active participation in care. These findings also support the need for the development of context-specific tools to assess empowerment in women with endometriosis.

This concept analysis highlights empowerment as a multidimensional and context-specific unmet need in endometriosis healthcare, supporting the development of targeted, theory-informed nursing interventions.

Endometriosis, Advanced Practice Nurse, Concept Analysis, Patient Empowerment

Endometriosis is a chronic, benign, inflammatory, and hormone-dependent disease characterized by the presence of endometrial tissue outside the uterine cavity. It has a profound impact on the lives of affected women, due to both symptoms such as pain and infertility and the delays in diagnosis, which may take up to 10 years.1,2 Currently, there is no definitive cure or method of prevention for endometriosis. First-line treatment typically includes hormonal therapy and analgesics, with surgery being reserved for particular or complex cases.3 Women with endometriosis experience emotional challenges at two levels: short-term reactions to pain or care-related events, and a persistent psychological burden over time. Emotional distress often persists even when the pain is treated. This results in a chronic psychological burden with effects on mental health and quality of life, including high rates of depression and anxiety, stress, and social isolation. These factors increase uncertainty and illness complexity, leading to feelings of lack of control, reduced vitality, emotional dysregulation, and dissatisfaction with the healthcare, as described in a systematic review of qualitative and observational studies involving women with endometriosis.4 The World Health Organization (WHO) recognizes the significant impact of endometriosis on sexual and reproductive health and emphasizes the importance of raising awareness, implementing specific policies and services to address the condition, and working closely with civil society and patient advocacy groups.5 Empowerment of women with endometriosis is a key strategy for mitigating its negative impact. Advanced practice nurses (APNs) play a pivotal role in health education and promotion, providing support, managing treatments, and fostering collaboration.6 Nurse-led education about the disease, its effects, and available treatments, empowers women with endometriosis to actively participate in managing their condition, addresses psychological aspects such as anxiety and equips women with tools to cope with their condition and reduce the suffering it causes.7–9 Empowerment is recognized internationally as essential for patient centered-care and growing evidence has shown its effectiveness in improving health outcomes.10,11 Previous studies have explored empowerment in different populations, including qualitative studies in patients with chronic illness, cross-cultural research in osteoarthritis, and concept analyses in chronic pain populations.12–14 Having a precise definition of empowerment of women with endometriosis is essential due to its complexity and the difficulties for both women with endometriosis and healthcare professionals in relation to the management, treatment and follow-up of this chronic disease.1 Empowerment is of significant utility in nursing practice, education, administration, and research.15 Although there are multiple definitions of patient empowerment in the literature, ranging from 17 to 21 and with up to 10 dimensions, most agree on the dual nature of the concept as both an outcome and a process.16,17 The origin of the concept can be traced to Freire’s foundational work on liberation education, which responded to social inequality and oppression, with philosophical roots in Hegelian dialectics.18–21 It is also connected to having access to support that promotes holistic health and justice.18 According to the foundational work of Kuoakkanen & Leino-Kilpi (2000), three theoretical frameworks underpin the concept of empowerment in nursing care: critical social theory (community empowerment), organizational theory (organizational empowerment), and social psychological theory (individual empowerment). Social psychological theory emphasizes personal growth and development, influenced by individual beliefs, values, perceptions, and interactions with the environment.22 This research aligns with the latter conceptual framework since it provides a value context for examining how individual empowerment can be developed in the field of endometriosis. Pekonen et al (2020) noted that there is no universal consensus on the definition of empowerment, despite its widespread use, but the critical role that patients play in their own care is emphasized.23 Moreover, the integration of established theoretical frameworks, such as Affective Events Theory (AET) and appraisal-based adaptation models into chronic illness research, helps distinguish between discrete emotional reactions triggered by care-related events and the cumulative affective burden associated with prolonged illness. Within the AET framework, studies on nurses’ emotional responses and workplace experiences highlighted how care-related interactions, including symptom invalidation and fragmented care, may trigger emotional reactions that influence immediate engagement, withdrawal, or coping strategies.24,25 In contrast, appraisal-based models, primarily studied in individuals with chronic illness and in the general population, emphasize that perceptions of control, predictability, and consequences are closely linked to long-term emotional experiences and psychosocial adjustment.26,27 Evidence from studies in women with endometriosis highlights the importance of self-management and supportive healthcare interactions (including symptom validation, access to information, and continuity of care) in shaping patients’ experiences.28 Nursing interventions targeting these aspects may influence both immediate affective responses and longer-term cognitive appraisals of the illness, supporting the conceptualization of empowerment as a dynamic and evolving process rather than a static outcome. Whereas concept analyses of patient empowerment are performed across several context such as chronic disease, chronic pain, chronic myeloid leukemia, pregnancy and childbirth, and coronary heart disease, little empirical or conceptual work has specifically addressed empowerment in women with endometriosis populations.14,16,17,20,29–32 This study aims to critically analyze the concept of empowerment as it pertains to women with endometriosis in order to better understand this phenomenon and direct nursing interventions by integrating theoretical and clinical aspects within the field of advanced nursing practice and in nursing practice in general.

This study follows Wilson’s conceptual analysis method (1970), as described and applied by Avant (2000).33,34 This approach is supported by a comprehensive literature review and the use of dictionaries. A clear understanding of the concept of empowerment is essential for advanced practice nurses working in gynecology, particularly with women with endometriosis. Such conceptual clarity facilitates comprehensive care and helps define competencies and areas for further exploration. For this theoretical paper ethical approval was not required. Literature Review The literature review was conducted using the MEDLINE and CINAHL databases to identify conceptual and empirical literature related to patient empowerment in women with endometriosis. Searches were limited to articles published between 2014 and 2024 and written in English to capture evidence aligned with the evolution toward patient-centered nursing care and awareness of its impact on women’s health. MEDLINE Search In MEDLINE, MeSH descriptors including: “Empowerment”, “Patient Participation”, “Patient Activation”, “Patient Engagement”, and “Patient Involvement” were combined with “Endometriosis”, yielding 8 articles. Additionally, following the official inclusion of the MeSH descriptor “Powers, Psychological” in 2020 under the term “empowerment”, a complementary search combining this term with “endometriosis” retrieved 5 further articles. CINAHL Search In CINHAL, multiple searches were performed using different subject headings combined with relevant keywords. Filters were applied for English Language, primary subject relevance, and focus on nursing care and the nurse–patient relationship. These searches yielded a total of 105 articles. - Subject headings: “Patient Empowerment”, “Patient Activation”, “Patient Engagement”, and “Patient Involvement”, with the keyword “Concept Analysis”.Initial search results: 17 articles. - A secondary search adding the keyword “Chronic Disease” yielded 1 additional article. - A third search using “Patient Education” and “Patient Knowledge” as subject headings, with “Endometriosis” as the keyword, retrieved 14 articles. - A fourth search using “Patient Empowerment” as the subject heading obtained 72 articles. - When “Patient Empowerment” was combined with the keyword “Endometriosis, 1 article was retrieved. Across both databases, a total of 118 records were identified. After removal of duplicates and screening based on titles and abstracts, articles were assessed against predefined inclusion and exclusion criteria. The inclusion criteria comprised publications focused on women with endometriosis and/or chronic disease, addressing the concept of empowerment or patient empowerment, and relevant to nursing care, nurse–patient relationships, holistic nursing, or theoretical foundations. Exclusion criteria included non-academic sources, duplicated publications, articles without abstracts or full-text availability, and studies not addressing empowerment in relation to nursing practice. Following this selection process, 66 articles met the eligibility criteria and were included in the final review. In addition to studies retrieved through the database search, seminal theoretical works, established concept analyses, and key institutional documents were included to support the conceptual development of empowerment, in accordance with the Wilsonian methodological approach to concept analysis and recognized practices in concept-based nursing research. The final body of literature included conceptual sources the meaning, theoretical dimensions, and consequences of empowerment. It also included empirical studies exploring the concept of empowerment and its application in clinical nursing contexts (interventions, experiences of women with endometriosis, emerging challenges in healthcare). Together, these sources provide a comprehensive and theoretically grounded understanding of empowerment from a nursing perspective. Conceptual Analysis Wilson’s method is a widely used and flexible methodology designed to facilitate the development of thinking and communication skills to clarify an emerging concept or a phenomenon researched for the first time, as is the case of empowerment of women with endometriosis.34 Wilson´s model provides an 11-step approach to breaking down things into their essential attributes, antecedents, and consequences. In contrast to Walker & Avant approach, which simplifies Wilson’s method into a prescriptive 8-steps process, Wilson’s method offers a flexible and exploratory structure to deeper integrate social and subjective elements.35,36 This flexibility is particularly relevant in endometriosis where not only physical health but also the quality of life, relationships, and autonomy are affected. Wilson’s model accommodates personal elements, such as knowledge, self-control, and self-capacity, and social elements, such as support and communication with health professionals. Since empowerment in endometriosis is an underexplored field, Wilson’s method was instrumental in providing conceptual content and providing a foundation for future empirical work.34 By making the concept explicit, this analysis facilitates the development of measures, interventions intended to foster empowerment and, generate patient-centered clinical initiatives and strategies. This 11-step method includes the following stages: (1) Isolating questions, (2) Finding answers, (3–7) Developing cases (model, opposite, related, borderline, and invented), (8) Determining the social context, (9) Identifying underlying emotions, (10) Establishing practical outcomes and (11) Defining the results in language. Case studies (steps 3–7) are central to this method as they help differentiate the essential elements of the concept from similar or related concepts. For example, “the gold standard case” represents the ideal characteristics of the concept, while opposite cases illustrate contrasting scenarios. Related cases highlight differential elements and borderline cases emphasize unique aspects that distinguish the concept. Invented cases may also be used to clarify ambiguities. This analytical framework enables theoretical development and the identification of key attributes. However, as understanding of the concept evolves, its interpretation may change over time or across different contexts.37 Step 1: Isolating the Questions Relating to the Concept The lack of conceptual clarity in the literature regarding the empowerment of women with endometriosis raises several questions: - What is the nature of the concept of empowerment in women with endometriosis (concept question)? - What are the different perspectives of the concept (concept and fact question)? - What are the characteristic elements of empowerment (factual question)? - How does empowerment in women with endometriosis differ from empowerment in individuals with chronic diseases (concept question)? - Is it necessary to define empowerment specifically for women with endometriosis (value question)? To address these questions, they must first be categorized: - Conceptual questions: Questions 1 and 4 focus on the nature and differentiation of empowerment. - Factual questions: Questions 2 and 3 address how the concept manifests and its defining characteristics. - Value-based question: Question 5 relates to the importance of defining empowerment as a specific value within the context of endometriosis. This distinction ensures a systematic approach to answering each question and establishing a conceptual foundation for further analysis. Step 2: Finding the Right Answers This section examines the multiple uses of the concept within the context of nursing care and identifies those essential to the core concept to study. According to the Merriam-Webster Dictionary (2024), empowerment is “the act or action of empowering someone: granting the power, right, or authority to perform various acts or duties”. It also refers to “the state of being empowered to do something”.38 Similarly, the World Health Organization (2021) defines empowerment as: “A process through which people gain greater control over decisions and actions that affect their health. Individuals and communities need to develop skills, access information and resources, and have opportunities to influence factors affecting their health and well-being”.39 According to Bravo et al (2015), Funnell’s (1991) definition of patient empowerment is the most frequently cited in the literature. Funnell defined patient empowerment as “a process in which people gain mastery over their health; it is not simply a transfer of power but the ability to affect change in themselves and others”.20,40 Within the context of pregnant women and childbirth, empowerment has been defined as a woman’s ability to strategically make decisions affecting her health and maternal experiences, influenced by the social, legal and economic contexts.31 In the management of chronic pain, empowerment has been described as encompassing self-determination, mutual partnership and supportive relationships. In chronic myeloid leukemia, empowerment is understood as a patient-centered approach that supports individuals in self managing their condition.14,30 In older adults with chronic disease, empowerment refers to the development of knowledge, competence, confidence and positive self-concept.29 In coronary heart disease patients, empowerment is multidimensional, involving personal and behavioral factors. It includes self-management, knowledge, disease acceptance, motivation for healthy behaviors, information-seeking, professional relationships, and social support, all promoting self-care, quality of life, and long-term health outcomes.32 These definitions of empowerment across different clinical and population contexts reflect the multidimensional and context-dependent nature of the concept. From a psychological perspective, processes such as cognitive appraisal, emotional regulation, and adaptive coping have been shown to shape individuals’ sense of control and engagement in health-related decision-making and psychosocial adjustment. These processes may contribute to the development of empowerment.26,27 While Bravo et al (2015) propose five key elements to guide the empowerment process in chronic diseases (underlying ethics, interventions, moderators, indicators and expected outcomes) and Castro et al (2016) focus on communication, patient centered care, enhancing competences and active participation, other studies emphasize its broader and multidimensional nature of empowerment. Cerezo et al (2016) identified 10 commonly described dimensions including participation in decision-making, taking control, knowledge acquisition, coping skills, positive attitudes, giving meaning to the illness experience, motivation, confidence, self-care and sharing and empowering others.16,17,20 Empowerment is also closely linked to access to support systems that promotes comprehensive health and social justice.18 On the other hand, endometriosis is defined by Merriam-Webster’s Dictionary (2024) as the presence and growth of functioning endometrial tissue in locations outside the uterus, often resulting in severe pain and infertility.41 According to the Dictionary of the Spanish National Academy of Medicine (2012), endometriosis (derived from “endometri(o)” + “-ōsis”, meaning “pathological process” in Greek) refers to the ectopic presence and proliferation of endometrial tissue. This tissue may appear and grow within the thickness of the myometrium (as in adenomyosis) or outside the uterus (as in external endometriosis).42 A secondary definition is simply the presence of endometrial tissue outside the uterus. While both definitions align in thematic content, the dictionary suggests the first is more precise, even though the second is more commonly used today. The essential elements and characteristics gathered from the conceptual literature on the concept of patient empowerment are summarized in Table 1 below. The development of steps 3 to 9 is crucial to facilitate the definition of the key elements of empowerment of women with endometriosis shown in Figure 1. | Table 1 Conceptual Elements of Patient Empowerment | | Figure 1 Elements of Empowerment of Women with Endometriosis from an Advanced Nursing Perspective. | Step 3 to 7: Developing the Cases This section applies Wilson’s method to develop case studies illustrating the concept of empowerment in women with endometriosis. Step 3: Model Case Maria, 33, has experienced symptom related to endometriosis since her first period at age 9, including severe cramps, persistent abdominal pain, and difficulty conceiving. After years of consultations and misdiagnoses, she finally received a diagnosis two years ago. Since then, she has sought reliable information about the disease, available treatments, and pain-management strategies. She enrolled in an endometriosis care course led by APN specializing in endometriosis to expand her knowledge. She now feels more in control of her symptoms and aware of how treatments affect her body. She values routine follow-ups and consults her APN whenever she has doubts, which helps her avoid emergency visits and reduces anxiety. She is supported by a multidisciplinary healthcare team that listens to her concerns. Maria is also part of an endometriosis association, where she finds emotional support and sense of understanding. She participates in awareness activities when possible. She has learned to validate her emotions through therapy, take care of herself with exercise, an anti-inflammatory diet, and supplements, ask for help when needed, and continue engaging in activities she enjoys despite the pain. She has also realized the importance of asking for help from her family, social network, or workplace when needed, as well as continuing to engage in enjoyable activities despite the pain. Factors related to the empowerment of women with endometriosis are evident in Maria’s case. These include access to reliable information provided by health professionals, acquired knowledge, patient skills and resources, personal determination, and community and social support. Altogether, these elements enable her to face the challenges of this chronic disease and enjoy a life with good quality, well-being, and independence. Step 4: Opposite Case Teresa, 39, was diagnosed with deep endometriosis five years ago after going to the emergency department for severe pain and heavy bleeding. Although advised to follow up with her gynecologist, she chose not to, as she had long been told her pain was normal and never fully understood the disease. She refused the recommended hormone treatment because past contraceptives caused weight gain, mood changes, and low libido, and she believes hormones prevented her from having children. She also views regular menstruation as essential and thinks not having periods is unhealthy. Teresa does not attend follow-up appointments or routine ultrasounds. On good days, she only has enough energy to work. Her pain leads to poor eating habits, often making her skip meals or rely on packaged food. She rarely sees friends for fear of bleeding or pain. Her partner encourages her to seek information online, but what she finds—such as claims that hormones cause cancer—reinforces her refusal of treatment. She feels health professionals will not take her seriously if she declines hormones, recalling how unsupported she felt during past ineffective therapy. Unconvinced by treatment options and unwilling to change her habits, she continues managing her worst days with uncontrolled painkiller use, as her mother and aunt did. This opposite case highlights factors that hinder the empowerment of women with endometriosis. Personal beliefs, myths, and taboos surrounding menstruation, combined with a lack of interest in health education, limit both appropriate health behaviors and access to knowledge that strengthens the empowerment process. Social context, previous experiences with the disease, and the level of involvement and expertise of healthcare professionals can act as barriers that obstruct the entire empowerment journey. Step 5: Related Case Mila, 45, has deep endometriosis and chronic pelvic pain that became persistent after a 5-year diagnostic delay. Hormonal treatment has stopped her periods, and therapies from a pelvic floor specialist help her manage symptoms. She knows the pain will not disappear completely but is relieved to feel improvement. Mila sees a physiotherapist weekly, follows an anti-inflammatory diet, and has reduced caffeine and alcohol. She also consults a psychologist when pain affects her mood or her ability to meet goals adapted to her condition. Since her diagnosis, she stays in regular contact with her APN for guidance, treatment updates, and emotional support. She joined a local endometriosis association, where sharing experiences has helped her accept the disease. Mila participates in marches and awareness events, valuing the chance to support research and raise awareness despite possible discomfort. This related case illustrates how empowerment can vary among women with endometriosis, depending on factors such as age, symptom duration, timing of diagnosis, disease complications, access to multidisciplinary care, community involvement, and advocacy efforts. It underscores the importance of personalized care approaches. Step 6: Borderline Case Emma, 30, has uterine fibroids, a benign condition that can cause severe pain and heavy bleeding. Since her diagnosis, she has become very engaged in learning about her condition, seeking reliable information online and through her Sexual and Reproductive Health Center. She knows the available treatments, including surgery, and—despite initial difficulties—managed to obtain a referral to a specialized center with help from online forums. In consultations, Emma discusses treatment options with her gynecologist and makes informed choices. She also works with a nurse who supports her in managing symptoms, improving her health, and adjusting her diet and exercise. Emma has adopted lifestyle changes and receives strong emotional support from family and friends. Although she does not have endometriosis, she actively promotes awareness of gynecological conditions and supports efforts to improve women’s reproductive health. This borderline case shares several essential elements of empowerment for women with endometriosis, such as accessing reliable information, shared decision-making, acquired knowledge, and community support. While the causes and treatments for uterine fibroids differ from endometriosis, the conditions share overlapping symptoms, such as painful menstruation and heavy bleeding. Step 7: Invented Case No invented case is included, as the existing cases sufficiently illustrate the concept. Step 8: Determine the Social Context Endometriosis affects approximately 190 million women and girls of reproductive age worldwide, accounting for about 10% of this population group. This chronic disease is characterized by severe pain during menstruation, sexual intercourse, bowel movements and urination, which significantly reduces the quality of life of those affected. It often leads to chronic pelvic pain, bloating, nausea, fatigue, and sometimes depression, anxiety, and infertility. There is currently no cure for endometriosis, and thus, treatment goals typically focus on relieving symptoms. Early diagnosis and initiation of effective treatment are crucial and a second medical opinion could be required in complex cases of endometriosis.3 Nowadays, the global delay in diagnosis ranges from 7 to 10 years and has been attributed to factors such as the normalization of menstrual pain (dysmenorrhea), the diversity of symptoms (both gynecological and gastrointestinal), and a lack of training and communication among healthcare professionals.43 Often referred to as the “modern woman’s disease”, endometriosis poses significant therapeutic challenges once diagnosed. Treatments aim to control symptoms and slow disease progression but no definitive cure is available. Hormone therapy is a common option, that can reduce inflammation and regulate the menstrual cycle, but it is often associated with side effects such as weight gain, mood changes, and bone demineralization.44 Comprehensive and interdisciplinary approaches to the management of endometriosis are essential. This includes increasing education and raising awareness among patients, healthcare professionals, and the general population. Such strategies can help reduce stigma, improve diagnostic accuracy and timeliness, and accelerate progress in the field.45 Women with endometriosis are generally willing to participate in research, especially studies focusing on diagnosis and symptom management. However, research approaches should be co-designed to ensure comfort and flexibility for participants.46 In Spain, notable patient associations include the National Association of Women Affected by Chronic Endometriosis (ADAEC), EsEndo, and the Endometriosis Spain Association (AEE), among others. These non-profit organizations aim to raise awareness of the disease and provide support to women with the condition. They offer guidance, counselling and emotional support, and organizing activities to educate women about the disease. They also work with hospitals to promote research and raise funds to improve care and treatment options.47 Community support networks, such as patient associations, foster spaces for mutual support and help reduce social isolation.48 The 2018 Catalonia Endometriosis Model of Care stresses raising disease awareness to speed diagnosis and provide personalized care. It emphasizes informed, shared decision-making to empower women, enabling active self-management and promoting more equal, patient-centered healthcare beyond clinical outcomes.49 In Catalonia, a shared decision-making tool was developed by the Agency for Health Quality and Assessment of Catalonia (AQuAS), Catalan Health Service (CATSalut), the Catalan Association of Obstetrics and Gynecology, and many hospitals. The website provides professionals and women with endometriosis detailed information on diagnosis and treatments, outlining their pros, cons, and key points for informed decisions.50 Step 9: Identify Underlying Emotions Examining the social context of empowerment for women with endometriosis reveals several factors contributing to underlying anxiety for patients, their families, and healthcare professionals. From a psychological perspective, the normalization of symptoms in chronic diseases not only delays diagnosis and medical treatment but also influences how individuals cognitively process their illness. It may hinder the adoption of coping strategies and healthy behaviors.51 Pain caused by endometriosis affects women’s psychological and social functioning and compromises mental health.52 Emotional experiences in endometriosis are associated with behavioral responses (avoidance, social withdrawal) and health outcomes (pain, quality of life, sexual dysfunction, and mental health). These effects are partly mediated by cognitive patterns and emotional coping processes, which influence self-management and decision-making, ultimately impacting overall health and quality of life.53 Negative emotions lead to the adoption of poorer coping strategies, which in turn exacerbate these outcomes.54 Quantitative studies report an increased risk of depression and anxiety in women with endometriosis compared to the general population.55 A meta-analysis published in 2021 estimated the prevalence of depression and anxiety at 28.9% and 31.8%, respectively.56 Qualitative studies further describe living with endometriosis as a struggle for coherence, dealing with feelings of difference, dependence, and a “ruined life”, which hinder women’s ability to understand their condition, to cope with it, and find meaning.57 Emotional distress is often characterized by isolation, guilt, worry, uselessness, hopelessness, and a perceived inability to cope. The interplay of pain, fatigue, dissatisfaction with healthcare, and limited treatment options exacerbates these feelings.58 Emotional coping strategies include acceptance of the disease, maintaining a positive attitude, self-talk, and spirituality.59 In addition, woman with endometriosis frequently seek self-management strategies and alternative therapies such as mindfulness, yoga, nutritional supplements, among others. These strategies are particularly used to reduce symptoms and improve quality of life when conventional medical treatments provide insufficient relief and intolerable side effects.60–62 In this sense, emotional regulation and emotional coping strategies emerges as a key mechanism influencing the development or limitation of empowerment in women with endometriosis. Step 10: Practical Outcomes This analysis demonstrates that empowerment for women with endometriosis is both a process and an emerging outcome influenced by a range of factors. Clarifying the concept of empowerment and understanding its elements can help health professionals identify this condition correctly, implement appropriate preventive interventions and discontinue those that are ineffective. What is Known About this Issue? Empowerment is recognized by both women and professionals as an unmet need in endometriosis care. Its key attributes include access to centralized care and information, effective communication, knowledge, patient skills and resources, personal determination, and social support. Patient behaviors—such as active participation, informed decision-making, care management, and self-empowerment—shape these attributes. Context, personal traits, disease factors, social support, and values influence both attributes and behaviors. What does this Article Contribute to? The study highlights the need to empower women with endometriosis to improve coping and patient outcomes. It defines empowerment by identifying its antecedents—such as difficulties in self-management due to unrecognized empowerment attributes—and its consequences, including greater well-being, independence, knowledge, and support. It identifies empowerment as an unmet healthcare need, underscores the key role of nursing, and proposes tools to monitor and assess empowerment for integration into care.

Step 11: Defining the Results in Language At this point, a definition can be presented as: Empowerment of women with endometriosis is a dynamic, relational, and context- dependent process through which women gain the knowledge, skills, and confidence to actively participate in their care and make informed decisions. It is characterized by six interrelated elements: effective communication, access to resources and support, information for decision-making, health self-management, advocacy, and additional resources and support, which interact to foster autonomy, control, and improved quality of life and is shaped by emotional experiences, cognitive appraisals, and interactions with healthcare systems. This definition is operationalized through six interrelated elements summarized in Figure 1 and discussed in depth and described below: Effective Communication The first of the six key elements is Effective Communication. According to Bravo et al (2015) and Castro et al (2016), building on Gibson’s (1991) work, effective communication is a central element of patient empowerment.16,20,21 Within the context of endometriosis, it enables women to express their needs and preferences regarding both the content and delivery of care and to participate in the decision-making process. Communication is considered effective when it is open, two-way and facilitates a comprehensive dialogue with healthcare professionals, building and strengthening mutual trust between women with endometriosis and professionals.1 It should also support women’ understanding of their diagnosis and treatment options and allow them to express their concerns, worries and preferences in order to have a positive impact on their quality of life.6,63 Access to Support and Resources The second key element is Access to Support and Resources. These must be both accessible, as well as adapted to the needs of the patients to whom they are intended to help. Emotional support for patients implies a reduction in their feelings of isolation and facilitates their involvement in decision-making.16,20 Likewise, the existence of support networks promotes better adaptation to the illness and encourages the active participation in treatment.17 As Roomaney and Kagee (2016) highlighted, women with endometriosis who participate in patient support groups conducted by healthcare professionals develop more effective coping strategies which positively impact their quality of life.59 In addition, women with endometriosis with greater positive coping strategies present a decrease in depressive symptoms and pelvic pain.54 Information for Decision-Making The third key element is information for Decision- Making. Information directed to women with endometriosis must be reliable, accessible, clear and understandable. Access to high-quality information facilitates informed decision-making and encourages the active involvement of patients in their treatment.20 Understanding the symptoms, treatment options and consequences of the disease implies increasing patient autonomy and confidence.14,23 In this way, learning about the disease itself, from both the perspective of the professionals involved and of women with endometriosis is necessary to improve the clinical diagnosis.1 Finally, providing access to virtual information tools improves women’s understanding of the disease and treatment alternatives and becomes a key element in promoting active participation in the selection of their treatment plan.50 Health Self-Management The fourth key element is Health Self-Management. Under structured training, patients obtain knowledge, learn skills, and confidence building concerning the management of their condition.21 This recasts commitment into follow-up treatment and enhances the quality of life.16 Medical recommendations monitored collaterally by a physician and nurse practitioners as well as the patient herself ensure adherence to treatment and the prevention of possible complications. Nurses should aim to educate women with endometriosis about the disease, its effects, and available treatments, empowering them to actively participate in managing their condition.7 In addition, adopting a healthy lifestyle and following a Mediterranean diet contribute to pain control and support the emotional well-being of women with endometriosis.54 Finally, self-management in monitoring bleeding, pain and side effects of treatment in women with endometriosis based on a training process reduces anxiety and depression and improves their ability to identify the symptoms of the disease. Advocacy The fifth key element is Advocacy. This requires recognition of the women with endometriosis’ voice, their ability to participate in decisions that affect their health and active involvement in their own healthcare. Defending patients’ rights strengthens their confidence and enhances their perception of control over the care and treatment process.12,16,63 In the most complex cases of endometriosis, such as those that require highly invasive or surgical treatment, recognition of a second medical opinion within the defense of women’ rights is of note.3 It is worth mentioning how some models of care for women with endometriosis, such as the Catalan case, already explicitly recognize their right to comprehensive and informed care.49 Additional Resources and Support The sixth and final key element is Additional Resources and Support. Unlike the second key element (Access to Support and Resources), which refers to access within the formal healthcare system, this one include external resources to the formal care process. Alternative therapies such as mindfulness, yoga, nutritional supplements, dietary modifications, exercise and psychological therapies are typically considered outside the formal healthcare process. Empowerment is closely linked to access to support that promotes comprehensive health and social justice.18 Psychological support, alternative therapies or community support networks are recognized as key elements in the empowerment of women with endometriosis.51 Women with endometriosis actively consider alternative therapies such as those mentioned above.60–62 Access to psychological support decreases the impact of the disease on mental health.56 Finally, community support networks, such as patient associations, foster mutual support which helps to reduce social isolation.48

This concept analysis offers a novel contribution by clearly defining empowerment and adapting it to this specific clinical context of endometriosis. The findings are structured around six interrelated elements: (1) Effective Communication, (2) Access to Support and Resources, (3) Information for decision-making, (4) Health self-management, (5) Advocacy, and (6) Additional Resources and Support. The results obtained in this analysis are partially consistent with findings from previous concept analyses conducted in other chronic conditions. For example, Kim and Shin (2022), in their study of coronary artery disease in adult populations, and Fotoukian et al (2014), in a concept analysis of chronic illness in older populations, emphasize empowerment as a multidimensional process or set of related components involving knowledge, self-management, and active participation in care. Similarly, the analysis by Nieuwenhuijze and Leahy-Warren (2019) conceptualizes empowerment in pregnant women as the ability to make informed decisions within a broader social and contextual framework, highlighting elements also identified in our study, such as access to information for decision-making, health self-management, and access to support resources.29,31,32 These findings are also consistent with those reported by Coleman (2014) in patients with chronic myeloid leukemia, where effective communication, information for decision-making, and health self-management are recognized as essential to improving adherence and clinical outcomes.30 However, this reflects a more biomedical and outcome-perspective and may not fully reflect the holistic framework proposed in our analysis. Nevertheless, these frameworks in chronic illnesses tend to conceptualize empowerment in relation to self-management and individual agency, without fully accounting for the structural and gender-specific dimensions that are particularly relevant in endometriosis. Nevertheless, our study goes beyond the traditional focus of chronic illness empowerment, which is often centered on self-management, treatment adherence, and decision-making. It incorporates key factors specifically identified by women with endometriosis, including diagnostic delay, symptom validation, fragmentation of care, and gender-related stigma. Studies exploring empowerment from more theoretical perspectives highlight the importance of patient–professional relationships and active participation in care.17,20 However, these approaches may not fully capture the specific challenges associated with endometriosis, particularly the chronic invisibility of symptoms, gender-related stigma, and the complexity of interactions within healthcare systems. In this context, our study provides a novel contribution to the conceptualization of empowerment compared to previous analyses conducted in populations with chronic diseases. The study by Cerezo et al (2016) recognizes positive attitudes and coping strategies as one of the dimensions of empowerment.17 The integration of additional conceptual frameworks, such as Affective Events Theory (AET) and appraisal-based models, offers further insight into how nursing interventions may influence affective responses to care-related events and longer-term illness perceptions. This integration supports the view of empowerment as a dynamic and evolving process. Evidence suggests that women with endometriosis who adopt positive coping strategies experience lower levels of depression, stress, and pelvic pain.54 Furthermore, several domains have been associated with quality of life in women with endometriosis: (1) Social support (including information, communication, and education), (2) Care coordination and integration, and (3) Emotional support (relief of fear and anxiety).63 These findings reinforce the relevance of the proposed factors as key components influencing both empowerment and health outcomes. Studies investigating nursing education interventions aimed at modifying healthy lifestyle habits in women with endometriosis have shown significant improvements in knowledge, self-care practices, fatigue, pain, and depression when comparing pre- and post-intervention outcomes.64 For instance, Mahmoud et al (2021) found that women who received nursing education strategies demonstrated highly significant improvements in the total Endometriosis Health Profile questionnaire.65 While these studies employed validated scales to measure Patient-Reported Outcome Measures (PROMs), such as health-related quality of life or symptom burden, they did not assess empowerment as a distinct construct in women with endometriosis.66 Existing instruments in related fields that assess empowerment, such as the Health Empowerment Scale and the Empowerment in Patients with Long-Term Conditions Scale, which include theoretical elements such as patients’ capacities, knowledge, patient’s behaviours and support by others, do not capture the six key elements identified in this study and fail to fully reflect the multidimensional and context-specific nature in endometriosis.17,23 This highlights a critical gap in the literature and supports the need for the development of validated, context-specific instruments to assess empowerment in this population. Future research should consider integrating the key domains identified in this analysis, such as Effective Communication, Access to Support and Resources, and Advocacy, into the development of comprehensive, theory-informed measurement tools that are co-designed with women with endometriosis and sensitive to their lived experience. This study has several limitations. First, the limited number of studies specifically addressing empowerment in women with endometriosis restricts the depth of the available evidence. Empowerment is a multidimensional concept that can be defined and understood differently depending on cultural, social, and academic contexts. Consequently, the conclusions drawn from this concept analysis may not be generalizable to all women with endometriosis, particularly when considering cultural and socio-economic variations or disparities in access to care. Second, Wilson’s approach itself has methodological limitations, including reliance on the subjective interpretation of the researcher. This method may also lack a structured framework to coherently integrate diverse findings. Furthermore, the ability to establish causal relationships or identify clear trends may be constrained by the heterogeneity of the available data and the absence of longitudinal studies examining empowerment over time. Although the literature reviewed provides valuable insights, it is important to acknowledge that part of the existing evidence, particularly related to emotional distress and coping processes, has emerged in specific healthcare contexts and was published during the COVID-19 context. This may limit the generalizability of findings to broader populations and should therefore be interpreted with caution when extrapolating to different healthcare settings. Current clinical practice guidelines for the care of women with endometriosis should incorporate efficient, targeted interventions aimed at empowering them. Such strategies are essential to reduce misunderstandings, alleviate symptoms, and mitigate the physical and psychological consequences of this condition.

A conceptual analysis of the empowerment of women with endometriosis enhances the understanding of its key elements and attributes, while enabling a more detailed examination. This facilitates its recognition within healthcare systems as an essential need, directly contributing to improving their well-being. Moreover, this analysis supports a more thoughtful application of the concept in research related to endometriosis and nursing advanced practice care, emphasizing its significance and impact on the development of an efficient and effective healthcare system. While the six elements identified provided a conceptual framework generalizable across healthcare context, some aspects of empowerment may remain context-specific. Factors such as access to specialised endometriosis care, delays in diagnosis, the quality of patient–professional interactions, and the availability of tailored information and multidisciplinary support may influence its practical application. This system would benefit not only women with endometriosis but also the professionals who provide care. Additionally, this approach offers clarity for the practical application of empowerment in healthcare settings, serving as a guide for nurses in delivering care and treatment to affected women. It promotes professional development, enhances practical effectiveness, and improves health outcomes. Finally, the elements and attributes identified through this conceptual analysis can serve as a foundation for future research. This includes developing and validating tools for monitoring and evaluating the empowerment of women with endometriosis, as well as designing and assessing targeted interventions and empirical studies aimed at fostering empowerment across diverse healthcare contexts. Abbreviations WHO, World Health Organization; APN, Advanced Practice Nurse; AET, Affective Events Theory; ADAEC, National Association of Women Affected by Chronic Endometriosis; AEE, Endometriosis Spain Association; AQuAS, Agency for Health Quality and Assessment of Catalonia; CATSalut, Catalan Health Service. Acknowledgments We would like to thank Dr. Adela Zabalegui for giving the Advance Practice Nurses the opportunity to learn about patient empowerment and how to improve care towards excellence. Authors Contributions All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work. Disclosure The authors report no conflicts of interest in this work. The type of this article doesn’t need to include an ethics approval not informed consent. The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be constructed as a potential conflict of interest. The authors also declare no potential conflict of interest with respect to research, authorship, or publication of this article. This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors and has been read and approved by all the authors who take responsibility for its content.

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