This study supports previous research that highlights the need for adequate information regarding sexuality and intimacy for partners of patients with cancer. Except a self-reported negative impact of cancer, no characteristics (age, gender, stage of disease, time from diagnosis and type of treatment) were associated with a higher need for sexuality related information. Partners prefer to receive information from a healthcare professional and were most interested in information consisting of practical advice and experiences from others.
In previous research among cancer patients, younger age and male gender were identified to be associated with a higher need for information regarding sexuality and intimacy (Davison et al., 2002; Gilbert et al., 2016; Sporn et al., 2015). In our study, age and gender were not associated with the higher need, nor was the type of partners’ treatment. The need of information may independent of characteristics (age, gender, treatment) of their partners with cancer. This highlights the need to acknowledge sexual concerns of all partners of a someone with cancer. Literature reveals that partners of patients with cancer may experience feelings of shame and guilt regarding their sexual desires and they feel sexual needs are inappropriate (Hawkins et al., 2009). Hence, they might be less likely to report a need for support and information regarding sexuality and intimacy. It can be argued that information should be easily accessible and actively provided to partners, as they indicate in this survey.
Current literature revealed that the majority of partners were not satisfied with the information and support regarding sexuality and intimacy (Gilbert et al., 2016). Current findings suggest that partners of patients with cancer are in need of practical advice regarding sexuality and intimacy and experiences from others. Suitable information with respect to sexuality and intimacy for partners can be helpful to prepare partners for sexual side effects and create realistic expectations about sexual function after cancer (Mehta et al., 2019). Lack of knowledge regarding sexual side effects can lead to unmet sexual needs, which can negatively influence quality of life and may result in lower levels of relationship satisfaction (Acquati et al., 2018; Dobinson et al., 2016; Park & Hwang 2012).
Patients with cancer reported to prefer their partners to be involved in communication regarding sexuality and intimacy and sexual recovery with a healthcare professional, and so do their partners (Mehta et al., 2019). In accordance with our study, in current medical practice, a discussion about sexuality and intimacy with a healthcare professional does not take place for most cancer patients and partners. This might be due to mismatched expectations or barriers by healthcare professionals or patients to bring up the subject (Ben Charif et al., 2016a; Gilbert et al., 2016; Hawkins et al., 2009; Hordern & Street 2007; Krouwel et al. 2019). Therefore, it is recommended that information regarding sexuality and intimacy is also widely available independent of healthcare professional.
Strength of this study is a larger sample size than existing studies regarding our topic (Davison et al., 2002; Gilbert et al., 2009, 2016; Grondhuis Palacios et al., 2018; Hawkins et al., 2009). A number of limitations need to be considered. No data was collected on sexual orientation (heterosexual, gay, lesbian), duration of the relationship, ethnical and religious aspects, which might influence the negative impact on sexuality and the need of information. The response rate might have caused nonresponse bias. Our response rate is slightly higher in comparison with surveys about sexuality among partners of patients with cancer (Gilbert et al., 2016). Selection bias might have occurred. Besides, recall bias might have occurred. Sexuality and intimacy problems are known to be a late effect of cancer and are likely to continue during long-term survival (Bober & Varela 2012). According to our survey, partners of cancer patients are mostly affected in the first five years after diagnosis. Following on from this, the need for information was also highest in the first five years. However, some partners describe sexuality and intimacy as a nonissue during treatment (Oldertroen Solli et al., 2019). In time, people want life after treatment to return to as normal as possible again and may have more attention for sexuality and intimacy. They need to find a new approach to sexuality and intimacy. During this phase, information regarding sexuality and intimacy might be also important. This supports our findings that half of the partners stated a need for information more than ten years after diagnosis.