Focus group study of endometriosis: Struggle, loss and the medical merry‐go‐round

Abstract

Women with endometriosis experience a range of problems for which they may or may not be adequately supported. This paper reports on one aspect of a study conducted at the Epworth Hospital, Melbourne, to identify the information needs of women facing laparoscopy for endometriosis. A number of focus groups were conducted that provided women with a forum for communicating their experiences of endometriosis and laparoscopy. The findings include the experiences of 61 women who described the lack of support, the struggles and the losses involved in living with endometriosis. By far the worst experience that these women described was the encounter with health professionals and the ways in which their symptoms were trivialised and dismissed. There is a great deal for nurses to learn about the experience of living with endometriosis if they are to support women with this chronic illness in their search for well-being.

Arquétipos do conjunto de dados essenciais de enfermagem para atendimento de portadoras de endometriose

“…However, in other countries, this kind of treatment is guaranteed and considered important (12) . Nurses who participated in this research stated that they do not know a nursing treatment, to women with endometriosis, developed in Brazil.…”

“…Considering that endometriosis is difficult to diagnose, nurses play a significant role in facilitating this task, performing an evaluation and an adequate screening, besides providing education, orientation and support, helping to alleviate the consequences that endometriosis can bring to patients. It can be done by playing an important role on holistic care, by the preoperative period and by an understanding on the these women´ daily life (11)(12) . So, the guiding question to this work is: what information is essential for the creation of a data set in medical records, leading nursing records during these treatments?…”

Abordagem Psicológica Na Endometriose: Experiência De Dor E Melhora Na Qualidade De Vida Das Mulheres

“…There are several quantitative studies describing symptoms however, little qualitative research has been conducted (Ballard, Lowton, & Wrigt, 2006;Cox, Henderson, Andersen, Cagliarini, & Ski, 2003;Gylmour, Huntington, & Wilson, 2008). Specifically one focusing on women's pain experience -and much of what exists lacks rigour in key areas (Denny & Khan, 2006).…”

“…Qualitative study: Accordingly to similar work (Cox, Henderson, Andersen, Cagliarini, & Ski, 2003), broad categories are expected to emerge from women's reports: diagnosis struggle, health care dissatisfaction, depression, pain, relationship difficulties, fertility issues and financial burden. Primary outcomes: considering this study effort to focus intensively in beliefs and behaviors associated with women's pain experience, we expect to find cognitive and behavioral themes providing further insight about women's perceptions/ appraisals, main concerns and ways of dealing with symptoms/life situations.…”

Avaliação de dor e depressão em mulheres com endometriose após intervenção multiprofissional em grupo

“…Apesar de todo conhecimento atual sobre a endometriose, ainda não existe uma conduta ideal sem recidiva de sintomas e da doença. Muitas mulheres mantêm a queixa de dor ou de perda da fertilidade mesmo após se submeterem a diversas intervenções, gerando assim, um desgaste emocional devido ao longo caminho percorrido entre o início dos sintomas, diagnóstico e várias tentativas de tratamento da endometriose [1][2][3][4][5] . Além do sofrimento físico causado pelos sintomas, a endometriose provoca um impacto negativo na vida da mulher, alterando seu rendimento profissional, sua relação familiar e afetiva, reduzindo sua qualidade de vida e principalmente sua auto-estima 1,4-9 .…”