Ambiguous experience: Destructive or Constructive

Being treated with ignorance was associated with feelings of invisibility, disbelief; while being acknowledged was linked to increased self-esteem, confirmation and visibility.

Key Points

Highlights

• For the first time, the experiences of endometriosis patients in healthcare settings are reported as being double-edged: both destructive and constructive.

 Importance

• Research on experiences of women with endometriosis in health settings is important for improving clinical nursing and medical care for this population, however, studies are lacking.
• This study explored the experiences of endometriosis patients in healthcare settings with different healthcare professionals (HCPs).

 Key Results

• Women with endometriosis reported being treated with ignorance, leading to destructive experiences, or being acknowledged, leading to constructive experiences.
• For the first time, experiences of women with endometriosis are found to be “double-edged”, as all women reported both destructive and constructive encounters.
• Destructive experiences were associated with feelings of invisibility, disbelief, and the risk of mental and physical exposure, whereas constructive experiences were linked to feelings of self-esteem, visibility, and validation.

 What’s Done Here

• This qualitative study was conducted using an interpretative phenomenological approach, allowing for a deep understanding of the lived experiences of healthcare encounters of women with endometriosis.
• Interviews were conducted with nine women with endometriosis, which were analyzed according to Moustakas’ modification of the Stevick–Colaizzi–Keen method, adding interpretation.

 Limitations of the Study

• As this study was qualitative, the authors report that findings are not intended for generalization but should rather inform the experiences of other women in similar contexts.

Lay Summary

A diagnostic delay of 4-12 years is reported among women with endometriosis, which is explained by the lack of awareness of endometriosis as a medical condition among patients and healthcare professionals. In searching for a diagnosis, patients encounter many healthcare professionals (HCPs), however, little research has explored their experiences. The purpose of this study was to provide an insight to the healthcare experiences of women with endometriosis.

Nine women with endometriosis were interviewed and were analyzed using an interpretative phenomenological approach. The analysis of these interviews showed two general themes: being treated with ignorance or being acknowledged. These two themes were brought together to form the essence: “the double-edged experience”.

Being treated with ignorance was associated with disbelief in women’s symptoms by HCPs, along with the attitude that patients exaggerated their symptoms and that such symptoms during menstruation were normal. Women felt that some HCPs lacked knowledge about endometriosis and tried to find a quick and easy explanation for their symptoms. They reported feeling that they were not being listened to, that HCPs were distant, and that they were alone and unsupported by the HCP throughout the process. In addition, they felt physically and emotionally exposed. In contrast, the women who felt acknowledged reported feeling that they were being listened to and that they were able to discuss their experiences openly, which were validated by the HCP. Patients reported that the HCP had good people skills as well as sufficient knowledge about endometriosis. They also felt less exposed both physically and emotionally compared to patients being treated with ignorance.

The authors refer to the findings as “the double-edged experience of healthcare encounters” as women’s experience was both destructive and constructive. While being treated with ignorance was associated with feelings of invisibility, disbelief, and physical and mental exposure (destructive), being acknowledged was linked to increased self-esteem, confirmation and visibility (constructive). These positive effects were due to a better comprehension of their condition as a result of the diagnosis.

The finding that the experience of women with endometriosis is “double-edged” is unique as previous research has portrayed negative healthcare encounters. The results are consistent in terms of women reporting mental and physical exposure, diagnostic delay, and an experience of the normalization of symptoms.

The authors question why delays in diagnosing endometriosis still exist despite increasing knowledge about the condition and suggest that symptoms of endometriosis being treated as “normal” by HCPs and lack of disclosing menstrual irregularities by patients due to stigma may be reasons. They suggest HCPs to create a more open dialogue about menstruation irregularities.

Research Source: https://www.ncbi.nlm.nih.gov/pubmed/28493635