Future disorientation following gynaecological cancer: Women's conceptualisation of risk after a life threatening illness

Abstract

The purpose of this study was to develop an understanding of the experience of a gynaecological cancer diagnosis on women and their family in the year following treatment. The psychological and social consequences of gynaecological cancer and treatment have received little attention in research or practice until recently. Cancer service developments, however, are increasingly looking towards nurses to address the psychosocial needs of patients and families without necessarily having sufficient knowledge of what those needs are. This Grounded Theory study used symbolic interactionism as an interpretive framework. Twenty women were interviewed who were at least 12 months post-surgical treatment for gynaecological cancer. The analysis highlighted the degree of biographical disruption that occurs following illness that can affect both women and partners and a theory of future disorientation was developed. This study advances a conceptualisation of the chronicity of gynaecological cancer survivorship in relation to the challenge of living with the risk of the cancer returning, and how women's approaches to managing that risk affect their perception of the future. Cancer services within primary care must develop skilled professionals and interventions to provide appropriate and timely support for patients following cancer treatment, so that the successful outcome of a cure is not clouded by women having to live for many years with the fear of cancer recurrence.

“A peculiar time in my life”: making sense of illness and recovery with gynaecological cancer

“…For the women in this study, these were recent experiences, whereas many studies took place much later, from 12 months post-surgery (Roberts & Clarke, 2009) to up to 16 years post-diagnosis (Molassiotis et al, 2002), in which time, narratives will almost certainly become reconstructed as they are told and retold (Smith, 1994). Additionally, the potential for changing health goals over time, with a “new normal” being created, suggests that better understanding is needed of these developments, particularly as this changing need may require support from healthcare professionals and those in support roles.…”

“…In England, uterine, ovarian and cervical cancer were the third most common type of new cancer registered in women, following on from breast and lung cancers (Bannister, 2016). While gynaecological cancers make up a significant proportion of female cancers, research on survivorship is under-studied (Hughes, Whitford, Collins, & Denson, 2014; Roberts & Clarke, 2009), especially in comparison to breast cancer.…”

“…Cancer removal is prioritized for newly diagnosed patients, whereas those surviving long-term (at least 5 years) may begin re-evaluating life purpose and meaning (Sekse, Raaheim, Blaaka, & Gjengedal, 2010). Additionally, survivors integrate past events into accounts of the present (Roberts & Clarke, 2009), meaning that both time point and cumulative experiences are important aspects for consideration. While Hammer, Mogensen and Hall (2009) conducted their research immediately after diagnosis, most other work, both qualitative and quantitative, has taken place some time after diagnosis or treatment, from 12 months post-surgery (Roberts & Clarke, 2009), 5 years post-diagnosis (Reb, 2007; Sekse et al, 2010; Walton, Reeve, Brown, & Farquhar, 2010) and up to 16 years post-diagnosis (Molassiotis, Chan, Yam, Chan, & Lam, 2002).…”

“…Additionally, qualitative research has expanded to explore the experience of cancer, particularly in relation to topics such as hope (Hammer et al, 2013; Reb, 2007), meaning (Akyüz, Güvenç, Üstünsöz, & Kaya, 2008; Roberts & Clarke, 2009; Sekse et al, 2010), the impact of childlessness or loss of fertility for younger women (Molassiotis et al, 2002; Roberts & Clarke, 2009) and changing family roles (Akyüz et al, 2008). Other topics identified included uncertainty and risk (Roberts & Clarke, 2009; Sekse et al, 2010), body image and sexual function (Ekwall et al, 2003; Maughan, Heyman, & Matthews, 2002; Molassiotis et al, 2002). Much of this research has been at the intersection of individual experience with healthcare providers, and often from a nursing perspective (e.g., Ekwall et al, 2003; Reb, 2007; Roberts & Clarke, 2009; Walton et al, 2010), without drawing on relevant psychological theory.…”

“…Other topics identified included uncertainty and risk (Roberts & Clarke, 2009; Sekse et al, 2010), body image and sexual function (Ekwall et al, 2003; Maughan, Heyman, & Matthews, 2002; Molassiotis et al, 2002). Much of this research has been at the intersection of individual experience with healthcare providers, and often from a nursing perspective (e.g., Ekwall et al, 2003; Reb, 2007; Roberts & Clarke, 2009; Walton et al, 2010), without drawing on relevant psychological theory.…”