Experiences of communication in women with endometriosis: perceived validation and invalidation in different contexts, and associations with health-related quality of life

Abstract

Endometriosis, a chronic gynecological disease affecting approximately 10% of women of reproductive age, has a significant impact on physical and mental health. This cross-sectional study aimed to explore experiences of validating and invalidating communication in three contexts (with healthcare providers, employers, and family/friends), and whether this may predict health-related quality of life (HRQoL) in women with endometriosis. Data was collected through a digital survey distributed to women with self-reported endometriosis in Sweden. The survey included measures of validating and invalidating communication, depressive symptoms, anxiety, and HRQoL. A total of 427 women participated. The results indicated that women experienced varying levels of validating and invalidating communication in different contexts, with close family/friends providing the highest level of validation, and healthcare providers the lowest. Furthermore, a combined construct of high levels of validation and low levels of invalidation from healthcare providers and from close family and friends were significant predictors of HRQoL. These findings highlight the importance of supportive communication and understanding from healthcare providers and close social networks in promoting the well-being of women with endometriosis. Future research should further explore the impact of validating communication within healthcare settings and develop interventions to improve communication and support for women with endometriosis.

Keywords:

• Endometriosis
• validation
• invalidation
• quality of life
• depression
• anxiety
• communication

Introduction

Endometriosis, affecting about 10% of women of reproductive age, is a chronic gynaecological disease that is inflammatory in nature. The most common symptoms include pain during menstruation and ovulation, as well as during intercourse, urination or defecation, low back pain, chronic pelvic pain [1] and infertility [2]. Affected women’s health-related quality of life (HRQoL) is often negatively impacted [3], with associations between the disease and reduced emotional, physical, psychological, social, and sexual health [4,5].

To diagnose endometriosis, the "gold standard" involves undergoing laparoscopy to confirm the presence of endometrial tissue through histological analysis [1]. However, it often takes many years for women to receive a proper diagnosis and appropriate treatment [6,7]. Along the way to a diagnosis, women frequently interact with many healthcare professionals and describe their experiences as problematic, including symptom normalization and trivialization [8,9]. Encountering disbelief and trivialization during medical appointments and examinations increases the risk of feeling exposed, both mentally and physically [9]. Some women with endometriosis avoid seeking medical care or discussing their suffering [10], leading to damaged self-esteem and feelings of worthlessness or anger [11]. Conversely, positive encounters with healthcare professionals may have a beneficial impact on affected women’s self-esteem, as they feel validated and understood [9]. Therefore, the attitude and communication of healthcare professionals have a significant impact on women with endometriosis [8,9], although sparse research has focused on women’s experiences of specific communication behavior in healthcare settings.

Endometriosis often affects women’s work performance, through increased levels of sick leave, medication that affects their work efficiency, and limited possibilities for professional development [7,12]. Many women feel uncomfortable disclosing their diagnosis or symptoms to colleagues or employers, fearing a bad reputation, discrimination, or disbelief [12]. In addition, disclosing symptoms to those in higher positions can be embarrassing, leading to hesitancy in sharing [13]. However, more research on experienced communication in workplace settings is needed.

Women’s close relationships have also been associated with these sentiments. Matías-González et al. discovered that women with endometriosis experienced stigmatization from friends, partners, and family members [10]. Additionally, Hudson et al. revealed that the diagnosis of endometriosis had adverse effects on sexual intimacy, relationships, and family planning [14]. Psychosocial support is crucial for enhancing the well-being and quality of life of women with endometriosis [15], and fostering emotional intimacy between partners can serve as a protective factor for relationship satisfaction [16]. Consequently, supportive communication, understanding, and encouragement from individuals in their social network, including healthcare professionals, employers, and close family and friends, play a pivotal role in promoting the well-being of women with endometriosis.

In other pain conditions, validating (supportive) communication has emerged as a key component for the pain sufferer to feel understood, facilitating adaptation to pain and its emotional consequences [17]. Validation is generally described as communicating acceptance and understanding, while its opposite, invalidation refers to trivializing or dismissing the experience [18,19]. Validation has been related to increased emotional well-being and physical functioning in several contexts such as in healthcare settings and with romantic partners [17], while invalidation has been associated with increased pain and suffering [18]. Recent findings support similar links in other chronic illnesses, indicating that validation may build resilience and HRQoL [20].

Yet, experiences of (in)validation have not been studied in women with endometriosis. In particular, research on perceived communication in social and professional contexts is missing. The aim of this study was to explore experiences of (in)validation in three key contexts (with healthcare providers, employers, and family/friends), and whether this may predict HRQoL in women with endometriosis.

Material and methods

In this cross-sectional study, data was collected during one month, fall 2022, through a digital survey nationally distributed through posters and social media, to reach women with self-reported endometriosis in Sweden. Eligible participants were directed to a webpage where they were informed about the study and consented to participate by ticking a box before entering the digital survey in a closed system for data collection provided by the university. The study was approved by the Swedish Ethical Review Authority (Dnr 2022-05874-01).

Participants

The inclusion criteria were [1] female (biological sex) [2], 18 years old or older [3] having received an endometriosis diagnosis. Among the initial 432 participants, five women were excluded due to a large proportion of missing data. In the remaining sample (N = 427), the mean age was 34 years (SD = 8.45; range 18–72), 79% were in a relationship, and 43% had children. More than half of the sample (54%) reported university as their highest completed education. 21% were on sick leave. Years with symptoms ranged between 1 and 58 years.

Measures

Participants were asked to keep their symptoms of endometriosis in mind when responding to the questionnaires, except for when rating depressive symptoms and anxiety. Swedish versions of all scales were used.

Demographics

Demographic information covered age, symptom duration, relationship status, children, educational level, and sick leave.

Symptoms of endometriosis

The Endometriosis Health Profile (EHP-30) [21] was used to assess endometriosis health status during the last four weeks on five subscales: pain, control and powerlessness, social support, emotional well-being and self-image. This scale entails 30 items where the respondent rates how often situations and symptoms occur, from “Never” to “Always” on a Likert- scale ranging from 1–5, with a total of 100 on each subscale. The total score was then computed by adding the subscales and dividing by five, resulting in a total score between 0 and 100, where 100 indicates the lowest possible endometriosis health status. The Swedish version of this scale has shown good psychometric properties [22], and in the current study, the internal consistency was excellent (α=.96).

Validation and invalidation

The Validation and Invalidation Response Scale (VIRS) [23] was used to explore experienced validating and invalidating communication in three different contexts. To this aim, the word “partner” in the original VIRS was changed to “healthcare providers”, “close family and friends” and “employers”. VIRS has been used in similar contexts in earlier research [24–26]. In line with these studies, we decreased the number of items from 16 (original VIRS) to 14. One item was left out because of its ambiguity of double negotiation, and another was left out because it’s only applicable in more intimate relationships. It was then more comparable to have the same content in all three versions of VIRS. The participant rated the frequency of different situations from “Never” (0) to “Almost all of the time” [4] on two subscales: validation (9 items) and invalidation (5 items). Internal consistency was excellent in all three contexts (healthcare providers α=.97; employers α=.96; close family and friends α=.96).

Depressive symptoms

Perceived Health Questionnaire 9 (PHQ-9) [27] was used to assess depressive symptoms during the last two weeks. This scale consists of nine items, which the respondent rates the frequency of on a 4-point Likert scale ranging from “Not at all” (0) to “Nearly every day” [4]. The total score ranges from 0 to 27, where high scores indicate a higher level of symptoms. The PHQ-9 has shown acceptable properties for identifying major depressive disorder at cutoff scores between 8 and 11 [28]. The Swedish version of PHQ-9 has shown good reliability and validity [29] and in the current study, the internal consistency was good (α=.89).

Anxiety

Generalized Anxiety Disorder 7 (GAD-7) [30] was used to assess symptoms of anxiety during the last two weeks. It consists of seven items, which are answered on a 4-point Likert scale ranging from “Not at all” (0) to “Nearly every day” [3]. The total score is 21, with high scores indicating higher levels of anxiety. The GAD-7 had shown acceptable properties for detecting GAD at cutoff scores 7–10 [31]. The original scale has shown good reliability and validity [30], and in the current study, internal consistency was good (α=.89).

Statistical analysis

IBM Statistical Package for Social Sciences (SPSS) version 28.0 was used for the analyses. Normality was inspected through skewness and kurtosis statistics in combination with visual inspection of Q-Q plots and Shapiro-Wilk tests. All study variables were normally distributed in all but the Shapiro-Wilk test. A non-parametric alternative was used to confirm the parametric Pearson product-moment correlation. As the results did not differ considerably in the Spearman’s rank coefficient of correlation, the results from the parametric tests are reported. Associations between study variables were investigated through Pearson’s product-moment correlations. To test whether experienced validation and invalidation differed between contexts, two separate one-way repeated measures ANOVA were executed, with the addition of pairwise comparisons based on estimated marginal means with Bonferroni adjustments for multiple comparisons [32].

The predictive value of depressive symptoms, anxiety and (in)validating communication on HRQoL was tested through hierarchical multiple regression analysis with two steps. In the first step, depressive symptoms and anxiety were entered. In the second step perceived validation from healthcare providers, employers and close family and friends was entered.

Results

Validating and invalidating communication in three different contexts

The group comparison of validating communication within the three contexts (healthcare providers, employers and close family and friends) showed statistically significant group differences (F(2, 812) = 105.7, p < .001, partial η² = .21). Pairwise comparisons revealed that the level of validating communication in all three contexts differed significantly from each other, see Table 1.

Table 1. Comparison of experienced validating communication in three contexts (n = 407).

	M	Sd	F (df)	η^2
Validating communication (VRS)
Healthcare providers (HCP)	18.27	9.74
Employers (E)	20.92	9.30
Close family & friends (CFF)	25.84	7.73
			105.7 (2, 812)***	.21

Note: VRS-HCP, VRS-E, and VRS-CFF, 0-36, *p < .05, **p < .01, ***p < .001.

Likewise, the group comparison of invalidating communication within the three contexts (healthcare providers, employers and close family and friends) showed statistically significant group differences (F(2, 806) = 72.41, p < .001, partial η² = .15). Pairwise comparisons revealed that the level of invalidating communication in all three contexts differed significantly from each other, see Table 2.

Table 2. Comparison of experienced invalidating communication in three different contexts (n = 404).

	M	Sd	F (df)	η^2
Invalidating communication (IRS)
Healthcare providers (HCP)	7.81	5.32
Employers (E)	5.30	4.77
Close family & friends (CFF)	4.71	4.20
			72.41 (2, 806)***	.15

Note: IRS-HCP, IRS-E, and IRS-CFF, 0-20, *p < .05, **p < .01, ***p < .001.

Validating and invalidating communication in three different contexts in relation to quality of life, depressive symptoms and anxiety

Due to high intercorrelations (d=–0.85, −0.73 and −0.84, p < .001) between validating and invalidating communication in the three contexts, these variables were combined into a composite measure of (in)validation. The composite measure entails a range where higher scores indicate more validation and less invalidation, whereas lower scores indicate low levels of validation and high levels of invalidation. The correlation analyses revealed moderate to strong correlations between (in)validation and quality of life, depressive symptoms and anxiety, as shown in Table 3.

Table 3. Correlations between the constructs of the study.

Variable	M	SD	1	2	3	4	5	6
1. (In)validation (VIRS-HCP): Healthcare providers	30.66	14.62	–	.31***	.22***	−.36***	−.31***	−.28***
2. (In)validation (VIRS-E): Employers	35.59	13.22		–	.43***	−.32***	−.32***	−.24***
3. (In)validation (VIRS-CFF): Close family & friends	41.23	11.45			–	−.34***	−.31***	−.24***
4. Health-related quality of life (EHP-30)	57.08	17.67				–	.66***	.55***
5. Depressive symptoms (PHQ-9)	12.00	6.69					–	.73***
6. Anxiety symptoms (GAD-7)	8.46	5.53						–

Note: VIRS-HCP, VIRS-E, and VIRS-CFF, 0-56; EHP30, 0-100; PHQ-9, 0-27; GAD-7, 0-21; *p < .05, **p < .01, ***p < .001.

When exploring the predictive value of depressive symptoms, anxiety and (in)validation on HRQoL in a hierarchical multiple regression, symptoms of depression and anxiety were entered in the first step. As seen in Table 4, the model was significant (F(2, 389)=164.99, p < .001), explaining 46% of the variance in endometriosis HRQoL. In the next step, (in)validating communication in three different contexts was added to the model, resulting in a significant total model (F(5, 386)=76.50, p < .001). All variables, except (in)validating communication from employers, contributed with unique variance in the model. In other words, higher levels of experienced (in)validating communication from healthcare providers and close family and friends, both significantly predicted higher levels of endometriosis HRQoL. Further, higher levels of symptoms of depression and anxiety predicted lower levels of endometriosis HRQoL.

Table 4. Multiple regression exploring the predictive value of depressive symptoms, anxiety and (in)validating communication in three contexts on endometriosis health-related quality of life.

Model	R2	b	SE	β	p	CI (95%)
Step 1
Intercept		36.14	1.33
Depressive symptoms (PHQ-9)		1.22	0.15	.47	<.001	1.13, 1.70
Anxiety symptoms (GAD-7)		0.53	0.18	.17	.003	0.18, 0.88
	.46
Step 2
Intercept		52.30	3.45
Depressive symptoms (PHQ-9)		1.22	0.15	.47	<.001	0.93, 1.51
Anxiety symptoms (GAD-7)		0.48	0.17	.15	.006	0.14, 0.81
(In)validation (VIRS):
Healthcare providers (HCP)		−0.17	0.05	−0.15	<.001	−0.26, −0.08
Employers (E)		−0.04	0.06	−0.03	.525, NS	−0.14, 0.07
Close family & friends (CFF)		−0.17	0.06	−0.11	.007	−0.29, −0.05
	.50

NS: not significant.

All variables except (in)validating communication from employers contributed with unique variance in the regression model. To put it differently, experienced (in)validating communication from healthcare providers and close family and friends, both significantly predicted endometriosis HRQoL, over and above symptoms of depression and anxiety. In comparison to the other factors, symptoms of depression contributed to the largest part of the variance in the model.

Discussion

The purpose of this study was to explore experienced (in)validation in three contexts among women with endometriosis, and its potential impact on HRQoL. The results showed that the degree of experienced (in)validation differed significantly between contexts. The findings from healthcare settings stood out, as compared to the other settings, with relatively low levels of validation and high levels of invalidation. This aligns with previous research, where women with endometriosis have reported instances of being dismissed and having their treatment neglected by healthcare providers [9–11]. In fact, relational support has been pointed out as the most important aspect of care [33], highlighting the necessity of validation from healthcare providers. Grundström et al. also identified having continuous contact with a gynecologist responsible for treatment, care and follow-up, as an independent predictor of high patient-centeredness among women [33].

The participants indicated that employers were perceived as more validating than healthcare providers, yet not as validating as close family and friends. This observation can be understood in the context of earlier research, wherein women have expressed challenges in discussing endometriosis-related concerns with colleagues and employers, possibly due to the stigma they have encountered [13,14].

The highest levels of experienced validation were obtained in the context of close family and friends. This aligns with research by Van Niekerk et al. [16], who emphasized that heightened emotional closeness can foster a sense of comprehension and support, or in essence, validation. Yet, other studies have reported that women with endometriosis experience negative reactions from family and friends [10]. The findings from our study indicate a more nuanced picture, highlighting family and friends as relatively supportive contexts in comparison to healthcare and work settings.

As anticipated, depressive symptoms and anxiety were strongly associated with reduced HRQoL, explaining almost fifty per cent of the variance. Still, even after controlling for both depressive symptoms and anxiety, (in)validation from healthcare providers and from close family and friends were significant predictors of HRQoL. This indicates that (in)validation indeed plays an important role for HRQoL in women with endometriosis, beyond the impact of depression and anxiety. These outcomes align with findings from other pain-related populations [17], where validation has been established as pivotal for positive outcomes.

One limitation of the present study is its cross-sectional design, which precludes the ability to establish causality. Furthermore, the dataset relied on retrospective self-reports, having a risk of memory biases. The Swedish versions of VIRS and GAD-7 are well-established and have been commonly used in research and clinical practice, but they are not formally validated, which is another limitation. It is also important to note that the measure of (in)validation was initially developed for intimate partner relations and has not been validated in healthcare and work contexts. Yet, this study was a first step to exploring the role of (in)validation in different settings for women with endometriosis. The findings suggest a connection between the encounter of (in)validation and health-related quality of life, independent of depressive symptoms and anxiety. Notably, within healthcare environments, there appears to be potential for enhancement. A potential subsequent stride could involve formulating strategies to educate healthcare professionals treating women with endometriosis on effective communication methods that promote validation.

Acknowledgments

The authors would like to thank all the women participating in this study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data that support the findings of this study are available from the corresponding author, HG, upon reasonable request.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.