“There should be some kind of checklist for the soul”– A qualitative interview study of support needs after end of treatment for gynecologic cancer in young women

Supportive care needs of women with gynaecological cancer: A systematic review and synthesis of qualitative studies

“…Almost all included studies ( n = 10) focused on the period of active treatment and after primary treatment. Participants in six studies (Afiyanti et al, 2021; Ljungman et al, 2021; Lloyd et al, 2014; Mattsson et al, 2020; Thomas et al, 2018; Williams et al, 2020) were women who had completed initial gynaecological cancer treatment. Four studies (Ge et al, 2019; Lopez et al, 2019; Marcusson‐Rababi et al, 2019; Walton et al, 2010) also included women who were undergoing active treatment for gynaecological cancer, and participants in another study (Holt et al, 2014) were women during the diagnosis period.…”

“…However, women lacked support in handling these issues. Women expressed a desire for reassurance and emotional support from healthcare professionals (Afiyanti et al, 2021; Ljungman et al, 2021; Walton et al, 2010; Williams et al, 2020), in relation to uncertainty around prognosis and fear of recurrence (Afiyanti et al, 2021; Ljungman et al, 2021; Lopez et al, 2019; Thomas et al, 2018), stigma and shame related to cancer (Afiyanti et al, 2021;Ge et al, 2019; Lopez et al, 2019), functional discomfort due to persistent and new symptoms and side effects of cancer treatment (Afiyanti et al, 2021; Thomas et al, 2018), distress regarding sexuality and fertility (Mattsson et al, 2020), disturbance and strangeness due to changes in body image and female identity (Ge et al, 2019; Lopez et al, 2019), as well additional financial stress resulting from cancer treatments (Afiyanti et al, 2021; Marcusson‐Rababi et al, 2019). Healthcare provider behaviours can alleviate or exacerbate negative psychological consequences.…”

“…Healthcare provider behaviours can alleviate or exacerbate negative psychological consequences. Women felt heard and cared for when the healthcare provider developed a rapport and built a trusting relationship with them (Marcusson‐Rababi et al, 2019; Williams et al, 2020), whereas women who received insufficient emotional support from healthcare providers tended towards frustration and disappointment (Afiyanti et al, 2021; Ljungman et al, 2021; Walton et al, 2010).

I don't know how to say about this disease.

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“…Information provided by healthcare professionals has two important characteristics: content and amount of information. First, all women with gynaecological cancer desired adequate and multi‐faceted information related to their disease status, treatment options, side effects, symptom management, preventive measures, monitoring recurrence risk and how they could improve their quality of life (Afiyanti et al, 2021; Ge et al, 2019; Holt et al, 2014; Ljungman et al, 2021; Lloyd et al, 2014; Lopez et al, 2019; Marcusson‐Rababi et al, 2019; Mattsson et al, 2020; Thomas et al, 2018;Walton et al, 2010; Williams et al, 2020). However, these needs were often not adequately met.…”

‘Sometimes I can't look in the mirror’: Recognising the importance of the sociocultural context in patient experiences of sexuality, relationships and body image after ovarian cancer

“…Participants reported strong associations between feelings of being a woman and biological motherhood. Women viewed infertility as an inability to fulfil their role as a female which situated them as ‘less than’ or ‘no longer’ a woman, a view that aligns with a social norm in which motherhood and reproduction are the primary roles and identities for women (Kirkman et al, 2014 ; Ljungman et al, 2021 ; Ussher et al, 2014 ). These findings are consistent with previous research in breast and other cancers (Bajpai & Shylasree, 2018 ; Dryden et al, 2014 ) suggesting these norms and social identities transcend cancer type and outcomes.…”