Lived experiences of gynaecological cancer survivors in Oman: a qualitative study

Summary of main results

Lived experiences of Omani women with gynaecological cancers who participated in this study consisted of four major themes (figure 1).

Results in the context of published literature

We chose a qualitative study design to have an in-depth exploration of the experiences of women with gynaecological cancers, including the balance between treatment and the sexual, psychosocial and financial effects of treatment. The diagnosis of cancer was shocking for Omani women with gynaecological cancers; some of them doubted the diagnosis even after starting the treatment and living with the disease and treatment complications. All participants linked the cancer diagnosis to death. Despite advances in cancer care and the increased number of cancer survivors, perceiving a cancer diagnosis as a death sentence is a worldwide phenomenon and has been widely reported in the literature.14 15

Many participants explained their diagnosis of cancer to Gods’ will, and another participant linked it to ‘Black Magic’. A qualitative study exploring the coping strategies of Omani women with breast cancer showed that Omani breast cancer survivors struggled to find a meaning or reason for their illness, and they related their illness to ‘super-power’, rather than physiological/anatomical changes.16

Based on the participants’ accounts, cancer treatments had a profound effect on their lives. Two main complications affected them the most: ‘how they looked’ and ‘losing their fertility’. Changes in body image due to treatment complications have been widely reported in the literature.17 18 A recent survey from Canada reported that participants reported feeling ‘ugly’ and ‘disfigured’. This made many of them to experience emotional distress, which affected their daily lives and their relationships.18

All gynaecological cancers pose a potential threat to loss of fertility due to treatment complications. Surgical intervention, chemotherapy and radiotherapy all have the potential to damage or alter the women’s reproductive organs.19 All women included in this study were less than 50 years of age; therefore, loss of fertility was a major concern for both married and unmarried women. Studies showed that infertility is a concern for women with gynaecological cancers and influences their cancer treatment plans, as parenthood is perceived by many as the most important in life. Infertility affects the QoL due to side effects of treatment, self-perception, depression and unstable relationships. Several studies report infertility as a concern, second only to the chances of recurrence in survivors of gynaecological cancers.20

In many countries, women are offered fertility preservation services, which were not the case for the participants in this study.19 None of the participants mentioned anything about fertility preservation, which raises a question of whether to offer such services and their importance for young women with cancer.

The participants expressed carrying a lot of psychological burden through their cancer journey. Studies report the prevalence of cancer-related distress in the gynaecological cancer survivors to be as high as 85%.21 Multimodal treatment, a history of psychological distress and a high body mass index predict a higher rate of distress.22 23 Lived experiences of patients with gynaecological cancer reveal the role of social support—or its absence, selective withholding of information and existential loneliness in women as the major factors for the distress.24

Several participants experienced disturbance of their roles as daughters, wives and mothers due to low energy levels. This observation is consistent with earlier studies.25 Treatment can be debilitating, limiting activities of daily living. Patients may feel depressed, emotionally labile and develop guilt that they bring disgrace to their families and may stay indoors because of perceived altered body image.26

Another important theme was the quality of sexual health. Participants reported decreased sexual desire, reduced interest and satisfaction, feelings of guilt, fatigue and low mood. Survivors experience a broad range of sexual concerns.6 Common concerns are dyspareunia, decreased sexual activity, decreased libido, alterations in body image, anxiety related to sexual performance, difficulty maintaining previous sexual roles, emotional distancing from the partner and perceived change in the partner’s level of sexual interest. The treatment of gynaecological cancers can have varying impacts on sexuality across different cultures and populations. For example, one study reported women experienced a change in their sexual functioning after treatment; however, not all women experienced a negative sexuality change, and many reported both pleasurable and difficult sexual experiences.27 Half of the participants reported a significant disruption in their sexual lives prior to treatment due to severe symptoms.

The authors challenge the argument that treatment for gynaecological cancer has a greater negative effect on women’s sexual functioning than the symptoms of the disease themselves. The symptoms prior to diagnosis may be worse compared with treatment side effects. Several women described a process of re-embodiment after treatment, where they came to accept and celebrate their sexual identity. Higher rates of sexual dysfunction and distress were observed in patients with ovarian cancer compared with the general population, mainly due to gaps in communication with healthcare providers and using different strategies for coping.28

Most participants in the current study reported religion and social support as positive and supportive coping factors. Significant positive correlations between social support and hope scores in women with newly diagnosed or recurring gynaecological cancer have been reported previously.21 The burden of physical symptoms may worsen the emotional well-being of gynaecological cancer survivors who have fewer social support resources.29

The participants in our study used religious beliefs to cope in a positive way. They believed in the will of God and accepted the diagnosis as beyond their control. They were convinced that they would receive a reward from God later. Having a positive relationship with God made them gain the sense of self-acceptance and emotional comfort. Practising rituals and prayers served as a soothing mechanism and reduction of negative emotions. A strong relation between patients’ reliance on religious beliefs and practices has been reported previously.30 31 Among Tunisian women newly diagnosed with breast cancer, who had a moderate to high level of religiosity, a weak correlation was found between religious coping scores and depression, as well as anxiety scores. High levels of affective religiosity were the main predictive factor of positive religious coping.25 Religious beliefs and practices helped Arab–Palestinian women with breast cancer to handle psychological distress.32 Among American Indian women, 93% used a variety of spiritual or religious coping.33 Duman reported a positive correlation between religious attitudes of Muslim women with gynaecological cancer and mental adjustment.34 Coping and spiritual well-being were positively affected by spiritual intervention carried out by oncology nurses with spiritual training in Indonesia.35

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