En enkät insändes helt blank, och i en enkät hade endast de fyra första frågorna besvarats. Några enkäter hade internt bortfall och detta gällde framför allt frågorna om vilken information de hade fått och vilken information de hade velat få. Att frågorna i enkäten är utvecklade utifrån den första delstudien med kvalitativa intervjuer är en styrka. För att kontrollera att frågorna var rätt formulerade, kunde andra cancerpatienter ha getts möjlighet att läsa igenom dem,
vilket skulle ha ökat validiteten och kanske minskat internbortfallet. Sex informanter uppgav anledningar till att de inte besvarat frågorna om vilken information de hade velat få. Anledningarna var att de var för gamla, att de inte hade någon partner eller att de inte haft sexuell aktivitet på många år. I mindre utsträckning var det bortfall på frågan om hur de önskade få sin information och vem som hade gett dem information. Någon uppgav att de inte förstod ordet fertilitet. En person hade inte förstått vad som åsyftades med ”Ville du få information om...?”.
SUMMARY
This study focuses on cancer patients’ need of information about sexual health. The overarching aim was to investigate to what extent men and women with cancer need such information, as well as what information they have had with regard to sexual health in relation to cancer and cancer treatment. The incidence and prevalence of cancer are increasing, that is, a growing number of people either have had cancer that has been cured or live with a chronic disease. Treatments such as surgery, hormonal treatment, external radiation therapy, brachytherapy, and chemotherapy may all impact sexual health. The psychological aspects of having or having had a serious disease also have to be taken into account. Earlier research shows that the sexuality of both men and women is affected by cancer. The relations to one’s partner may be negatively impacted, especially if the couple have trouble communicating about the situation. Healthcare staff are obliged to inform about treatments and their side effects. However, both national and international studies show that the information about sexual health is deficient. In the literature, changes in sexual health caused by cancer are described, often focusing on the effects on fertility, or on sexual problems in general. Clinical experience shows that those areas where information is most often requested are fertility, sexual desire, and sexual functioning, and the ambition of this research project was, consequently, to contribute to new perspectives on those areas.
Empirical data was collected through a qualitative (I) and a quantitative (II) study, both of which are predominantly descriptive. The starting point for the thesis was the assumption that sexuality is a social construction, and the result of the studies was analysed and discussed using the theory of sexual scripts.
The qualitative study (study I) is based on interviews with eleven women with gynaecological cancer. The result points to a lack of knowledge among the women that affects their feelings towards their own body and gives rise to worries about corporeal changes. The women described how sexual abstinence affects one’s well-being when one is in a relationship, and they also expressed thoughts about what their sexual life might be like in the future. The women wished for healthcare staff to arrange conversations about sexuality and sexual relations, for the sake of both the woman herself and, as the case may be, her partner. The result of the study showed that those couples whose ability to communicate with each other was good were also able to deal with the changed sexual situation. It emerged, further, that healthcare staff should have an open-minded and sensitive attitude to issues related to sexuality and an ability to sense when the time is right for each individual woman to have a conversation about these issues. Although it is important that the woman’s partner is invited to take part in the conversation, an awareness of what the situation is like in each individual case is necessary. In order for staff to be ready to meet each woman’s need of information, they must be knowledgeable about the impact of cancer and cancer treatments on sexual life and about the importance of this impact, as well as possessing a sensitivity to the wishes of each individual woman with regard to this kind of information.
In the quantitative study (study II), where 106 men and women with different kinds of cancer answered a questionnaire, the result shows that 48 % of the respondents had not had any information at all regarding the areas of inquiry . There was a discrepancy between the information they had wished for and the information they had actually received, and the most significant difference concerned the question of whether sexual activity should be avoided. A considerably larger number of men than women had been given information about
fertility and sexual desire. The men had also had more information about sexual functioning than the women, but the difference was not significant.
The results from both studies show that information about the impact of cancer and cancer treatments on sexuality is not provided on a regular basis. Is this because in Sweden sexual scripts make us see persons with cancer as devoid of sexuality and a sexual life? Our patients’ lives proceed regardless of whether they receive information or not about the sexual impact of disease and treatment, but their lives may improve if we prepare them for the changes that may arise as a consequence of disease and treatment.
TACK
Det finns många personer som engagerat sig i mig och mitt arbete, med denna licentiatstudie, och som jag vill tacka. Men först och främst vill jag tacka alla kvinnor och män som deltagit i min forsk- ning, genom att delge sina erfarenheter som cancerpatient. Det är ni som gett mig energi och inspiration att fortsätta framåt.
Min huvudhandledare, Lars Plantin, som uppmuntrade mig att fortsätta efter min mastersexamen. Eva Elmerstig, bihandledare, med grundprofession i ”min” värld. Tillsammans har ni två fört mig framåt i processen. Tack för ert tålamod och för givande diskussioner där olika traditioner har mötts. Bibbi Thomé som är ”ansvarig” för min väg in i forskningen och som sedan varit ett fortsatt stöd och numera även kär vän, tack.
Tack för all uppmuntran och hejarop från onkologiska kliniken med Barbro Gunnars, Katarina Sjövall, Karin Petersson och Maria Hellbom. Till mina kära kollegor på sektionen för cancer rehabilitering, allt gnäll som ni fått lyssna på om den hopplösa statistikkursen, bland annat. Tack, min ”gamla” kollega och vän, Stinne Glasdam, som inspirerat under vägens gång.
Jag vill tacka mina före detta studievänner från masters programmet i sexologi för trevliga ostkvällar. Där utrymme för många olika sex- diskussioner funnits. Extra tack till Jack Lukkerz som dessutom fick uppdraget att bli min mentor.
Under min doktorandtid har hjärnan behövt avkoppling och där har bland andra Videdals GIF med alla härliga medlemmar hjälpt till. Mycket svett och tårar (av glädje) har fått utlopp där. Min tränings- kompis, granne, vän och brorsdotter, Elin Blohmé, en viktig person som alltid stöttat och lyssnat. Fina vänner från Arlöv, Kvarnby och Lomma som har gett mitt liv ett socialt innehåll.
Maria Nygren min ”syster” i vått och torrt. Tack till Er alla
Slutligen, mina kära killar; Staffan, Erik och Oskar, tack för all support. Med figurer och tabeller som hoppar omkring i doku- mentet, tvätt, städning men framförallt för mysiga familjemiddagar. Jag älskar Er!
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APPENDIX I
Intervjuguide
Inledande fråga
Berätta vilka tankar du hade om sexualitet och samliv efter det att du blivit sjuk.
Övriga frågor som bör belysas under intervjun
Hur ser du på sexualitet och samliv i förhållande till välbefinnande? Vem önskar du att samtalet kring sexualitet och samliv initieras av? Vilken kunskap tycker du är viktig att få?
När under sjukdom och behandlingstid bör informationen ges? (På vilket sätt tror du att sjukdom och behandling påverkat din partner i ert samliv? )
APPENDIX II
Syftet med denna studie är att undersöka vad du som patient har fått för information och vad du vill få för information om sexuell påverkan vid sjukdom och/eller behandling. Enkäten besvarar du anonymt.