viernes, 11 de marzo de 2011

Experiencia de las parejas sexuales de las personas con Cáncer

Discussion

This study examined changes to sexuality after the diagnosis and treatment of cancer for informal carers who were the partner of a person with cancer. Most participants reported that the cancer experience had impacted on their sexual relationship, resulting in a cessation or reduction of sexual activity, with only a minority renegotiating sexual intimacy after cancer. This supports previous research demonstrating that the impact of cancer and cancer treatment extends beyond the person with cancer,[3-5,7,30] reinforcing the need for acknowledgment of the sexual and intimate needs of partners and of people with cancer. Rather than restricting our sample to partners caring for a person with cancer affecting the reproductive areas of the body, we examined changes to sexuality after cancer across a range of cancer types. Most participants who were providing support to a person with prostate, breast, or gynecologic cancer cited an impact, confirming previous research.[4,13,14] However, the finding that a high proportion of partners of a person with nonreproductive cancer also reported changes highlights the pressing need to acknowledge and attend to the sexual concerns and needs of all partners who care for a person with cancer.
There were some gender differences in the accounts of the nature of changes to the sexual relationship after cancer. Reports of complete cessation of sex were more common for women than for men, and very few women gave accounts of developing alternative sexual practices if intercourse was no longer possible. This could be attributed to women being more likely to assume that they should subordinate their own needs to the needs of their partner[31] and to cultural constructions of normative heterosexuality, which expect men to initiate sex.[32]Previous research has found that partners are reluctant to initiate sexual intimacy if the person with cancer does not initiate[4] and that heterosexual women partners do not wish to initiate sex or discuss alternatives to coital sex for fear of emasculating their partner if he cannot "perform" through sexual intercourse.[33] This is consistent with research that has demonstrated that sexual performance is positioned as central to heterosexual constructions of "manhood," with failure having negative consequences in terms of a man's sense of self.[34] Equally, the "male sex drive discourse," which positions men as "needing" sex,[35,36] may result in the sexual needs of male partners being classified by either or both members of the couple as being "important enough" for sex to continue after cancer or for alternative sexual practices to be developed, in contrast with women partners, who were more likely to report that renegotiated intimacy was nonsexual. The phallocentric bias evident in the research and clinical literature on cancer and sexuality,[37] which serves to reinforce the notion that "normal" sex equals coitus and emphasizes sexual "functioning" with little attention to alternative practices, needs to be challenged, as this potentially plays a significant role in the construction of truths about sexuality, which people with cancer and their partners take up, limiting their exploration of alternatives to coitus after cancer. However, in the present study, 4 of the 6 lesbian partners all reported complete cessation of sex, suggesting that even couples positioned outside of a heterosexual matrix[38] can experience changes to sexuality after cancer.
Although previous research has attributed changes in sexuality and intimacy after cancer to the physiological effects of cancer or cancer treatment, a finding confirmed by many of the accounts in the present study, our findings also showed that the caring role had an impact on the sexual relationship. Participants associated sexual changes with stress, fatigue and exhaustion, revised prioritization centered on coping and survival, and a redefined status as a carer rather than as a lover. Past research that has explored carers' experiences of stress and exhaustion primarily focuses on the impact upon carers' general health and well-being. For example, Brown and Stetz[39] (p186) found that the initial period of "becoming a caregiver" is particularly stressful, as carers not only are focused on their new role but also have to "face the present," negotiate their choice/or lack thereof to care, develop competency around their caring tasks, and evaluate their future. It is important to further investigate how the stresses involved in being a caregiver impact upon a carer's sexuality and how this may in turn impact on quality of life.
The impact of the repositioning of the person with cancer as patient or "child," rather than as "lover," is an important issue that requires further investigation. The finding that the physical symptoms of cancer or the physical tasks associated with cancer caring make it difficult for many carers to continue to see their partner as a sexual person confirms patterns found in other spheres of healthcare.[17] This assignment of individuals with cancer with a "sick" or "childlike" identity, which is antithetical to an identity as a person with sexual desires and needs, can significantly impact on the sexual and intimate relationship of a couple facing cancer.[40] Sex can be positioned as "inappropriate" or as a "frivolous activity,"[41] resulting in carers experiencing guilt in the face of their own sexual needs or desires and the avoidance of any discussion or renegotiation of sexual practices, as was reported in the present study. This could be seen as one aspect of a broader practice of self-silencing in cancer carers, where the needs of the carer are repressed because the person with cancer has to be put first.[42] However, it is also associated with cultural discourses that position people with cancer as having limited sexual needs or as asexual,[19,43] resulting in a different set of norms being applied to what is an acceptable behavior.[44] The finding that male partners were more likely to report an impact of repositioning the person with cancer as a patient may result from the role of carer being a more unfamiliar position for men to take up, given the congruence between femininity and the caring role.[31] It may thus be more difficult for men to eroticize a partner with cancer who is in need of care. This matter is worthy of further investigation in future research.
As most partners positioned these changes to their sexual relationship as problematic, confirming previous research,[10,12,15,45] this suggests that education and information about sexuality after cancer, which challenges myths and provides a framework for renegotiation of sexual relationships, need to be included in advice and supportive interventions for partner carers. However, although it has been recognized that healthcare professionals need to discuss issues of sexuality and intimacy with patients in cancer and palliative care[46] and can play a vital role in providing "permission" for sexual intimacy between couples after the onset of cancer by legitimating such discussions,[47] the findings of the present study confirm previous research that found that these discussions are not taking place for most people with cancer or their partners,[48] particularly for those outside the sphere of prostate cancer. Even when sexuality was discussed, this was not at a level that was satisfactory to most participants in the present study. This confirms recent Australian research that reported mismatched expectations and unmet needs in relation to communication about sexuality between healthcare professionals and individuals with cancer,[49,50] suggesting that further education and training of healthcare professionals are required so that they will be able to advise couples affected by cancer on issues of sexuality and intimacy and address their unmet needs in this arena.[51] Although specific interventions have been developed to address sexuality issues in relation to cancer,[52] models of intervention that have been developed for persons with disability[53,54] or individuals who are older aged[55,56] can also be used to facilitate communication about sexuality between couples facing cancer so that they will understand and feel confident about trying "alternative" modes of sexual behavior, such as intimate touching or oral sex, without feelings of guilt or inadequacy. More specifically, couples can benefit from encouragement and permission to raise concerns about sexual functioning, allowing them to ask for and be provided with information within a supportive environment that fosters open communication with healthcare professionals.[52] Strategies that can be used include using normalizing statements to show that discussing sexual issues comprises standard and routine care, adopting a positive attitude toward such discussions, embedding individualized information in other aspects of care, and eliciting basic understanding of concerns and of the individual's motivation to address the issue to offer specific suggestions.[52]
A number of methodological issues need to be considered when evaluating the findings of this research. First, the issue of selection bias must be examined. The present study used self-selection in response to advertisement or information sheets distributed by cancer organizations or clinics and thus may not have tapped a representative sample of informal cancer carers. However, there was a good distribution across cancer type, stage, gender, and age group, in contrast with many previous studies of cancer and sexuality that focused solely on cancers affecting the reproductive organs. Equally, as the participants were recruited for a general study on cancer caring, answering questions on sexuality as part of a broader questionnaire or interview, it could be argued that we have recruited individuals who would not usually respond to requests to take part in a research study on sexuality and thus have obtained a broader sample for our research. Second, this study did not use standardized measures of sexual functioning or sexual or relationship satisfaction but rather focused on subjective reports through open-ended questionnaire items or interview. Future mixed-method research in this field could usefully adopt these standardized measures alongside qualitative measures to allow for greater triangulation of data in evaluating the extent and impact of changes to sexuality after cancer. Third, the cross-sectional design meant that all assessments of change were retrospective. A longitudinal design would more effectively allow for the evaluation of changes to sexuality across cancer stage and allow precancer and postcancer treatment changes to be evaluated more thoroughly.
In conclusion, sexuality and intimacy are central aspects of quality of life that have often been neglected in examinations of the well-being of partners of a person with cancer, particularly for nonreproductive cancers. The findings of the present study add further support to the suggestion that sex should not be positioned as inappropriate or "trivial" in the context of cancer care but rather be recognized as an aspect of couple relationships, which is associated with well-being.[57] Having healthcare professionals legitimate sexuality by "giving permission" for couples to be sexually active or physically intimate when undergoing and recovering from treatment for cancer is one of the key strategies that could assist in this repositioning.[47] The positive consequences of this may include increased feelings of well-being on the part of the partner carer and closeness between the couple, which will have positive consequences for the physical and psychological well-being of the person with cancer,[1] the central aim of professional cancer care. There is thus no justification for sexuality and intimacy being ignored or dismissed; partner cancer carers are telling us that it is important, it is time for healthcare professionals to recognize this need and to act accordingly.

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