**2.1.1 Recruitment and participants**

The larger study from which the participants were drawn was advertised via cancer and carer-specific newsletters, websites, and organisations, as well as through media releases, cancer support groups and cancer clinics across New South Wales. Family members, partners or friends of people with cancer, who self identified as providing care, and who volunteered to take part in the research, were asked to complete an online or postal questionnaire. A subset of the participants, who indicated willingness, were invited to take part in an in-depth interview. Ethical approval was granted from all relevant Committees including 10 Area Health Services across New South Wales, Australia, The Cancer Council New South Wales, and the University of Western Sydney. Three hundred and twenty nine carers participated in this larger study.  One hundred and twenty-two participants (43 men, 79 women), or 78% of this sub-sample reported that the onset of cancer had negatively impacted upon their sexuality and their sexual relationship and completed open-ended questions describing the changes. When we examined the type of cancers associated with changes to sexuality postcancer, the rate was 90% for partners of men with prostate cancer, 71% for partners of women with gynaecological cancer, and 78% for partners of women with breast cancer. Overall, the percentage of partner carers of partners with 'non-sexual' cancers who reported an impact on the sexual relationship was 76%, and the percentage of those caring for partners with cancers involving 'sexual' sites was 84%. Forty-six percent of partner carers indicated a willingness to be interviewed about sexuality and 20 were selected on the basis of whether they had been involved in, or were currently involved in, a sexual or intimate relationship with the person for whom they care/d, and self-reported changes to sexuality since the diagnosis of their partner's cancer, stratified by gender, cancer stage and type.

Sample characteristics are presented in Table 1. Ninety-six percent of the participants reported being in a heterosexual relationship, with the remaining in a lesbian relationship, and 1 participant in a gay male relationship. Participant ages ranged from 28 to 79, with a mean age of 57 (SD = 10.73; skewness = -.47), with their partner ages (person with cancer) displaying a comparable profile ranging from 29 to 93, with a mean age of 59 (SD = 11.83; skewness = -.15). Colorectal/digestive, breast and haematological cancer types account for 44.2% of the reported cancer types, 35% indicating an advanced stage of cancer, and the average time since diagnosis was 3.49 years. Carer partners reported spending an average of 10 hours per day providing direct care. There were 26 bereaved participants (11 men, 15 women), with the time of partner's death ranging from 1 month to 4 years, who reported retrospectively on their experience of caring for their partner.

The study described in this chapter is part of a larger cross sectional project evaluating the needs and experiences of informal cancer carers in New South Wales, Australia. This chapter focuses on the experiences of a sub-set of carers who were caring for their partners. All participants completed standardised questionnaires measuring depression and anxiety, burden of care, as well as questions regarding changes in sexuality post-cancer. Participants who reported changes in sexuality after the diagnosis of cancer, completed open-ended questions describing the changes. From these participants, a sample was selected to take

The larger study from which the participants were drawn was advertised via cancer and carer-specific newsletters, websites, and organisations, as well as through media releases, cancer support groups and cancer clinics across New South Wales. Family members, partners or friends of people with cancer, who self identified as providing care, and who volunteered to take part in the research, were asked to complete an online or postal questionnaire. A subset of the participants, who indicated willingness, were invited to take part in an in-depth interview. Ethical approval was granted from all relevant Committees including 10 Area Health Services across New South Wales, Australia, The Cancer Council New South Wales, and the University of Western Sydney. Three hundred and twenty nine carers participated in this larger study.  One hundred and twenty-two participants (43 men, 79 women), or 78% of this sub-sample reported that the onset of cancer had negatively impacted upon their sexuality and their sexual relationship and completed open-ended questions describing the changes. When we examined the type of cancers associated with changes to sexuality postcancer, the rate was 90% for partners of men with prostate cancer, 71% for partners of women with gynaecological cancer, and 78% for partners of women with breast cancer. Overall, the percentage of partner carers of partners with 'non-sexual' cancers who reported an impact on the sexual relationship was 76%, and the percentage of those caring for partners with cancers involving 'sexual' sites was 84%. Forty-six percent of partner carers indicated a willingness to be interviewed about sexuality and 20 were selected on the basis of whether they had been involved in, or were currently involved in, a sexual or intimate relationship with the person for whom they care/d, and self-reported changes to sexuality since the diagnosis of their partner's

Sample characteristics are presented in Table 1. Ninety-six percent of the participants reported being in a heterosexual relationship, with the remaining in a lesbian relationship, and 1 participant in a gay male relationship. Participant ages ranged from 28 to 79, with a mean age of 57 (SD = 10.73; skewness = -.47), with their partner ages (person with cancer) displaying a comparable profile ranging from 29 to 93, with a mean age of 59 (SD = 11.83; skewness = -.15). Colorectal/digestive, breast and haematological cancer types account for 44.2% of the reported cancer types, 35% indicating an advanced stage of cancer, and the average time since diagnosis was 3.49 years. Carer partners reported spending an average of 10 hours per day providing direct care. There were 26 bereaved participants (11 men, 15 women), with the time of partner's death ranging from 1 month to 4 years, who reported

part in in-depth interviews to examine these issues in more detail.

**2.1.1 Recruitment and participants**

cancer, stratified by gender, cancer stage and type.

retrospectively on their experience of caring for their partner.

**2. Methods 2.1 Design**

#### **2.2 Quantitative methods and analyses 2.2.1 Measures**

The Hospital Anxiety and Depression Scale (HADS) (Zigmond et al., 1983), was used to provide a brief measure of the presence of anxiety and depression. The HADS has very well established psychometric properties and is a reliable and valid instrument, with Cronbach alphas at .80 to .93 for the anxiety and .81 to .90 for the depression subscales (Herrmann, 1997, Janda et al., 2008). Higher scores indicate higher psychological disturbances.

The Caregiver Reaction Assessment Scale (CRA) (Nijboer, 1999) was used to examine caregiver burden. Subscales include: Disrupted Schedule, Financial Problems, Lack of Family Support, Health Problems, and Self-Esteem. As an assessment of both positive and negative reactions to care-giving by partners of patients with cancer, the CRA has been described as a reliable and valid instrument, with Cronbach alpha coefficients ranging from .62 to .83 for the separate subscales (Nijoboer, 1999). A higher score indicates a stronger impact of the attribute.

Questions on sexuality were also developed for the study, in consultation with the study's steering advisory committee, which comprised of two carer representatives from an independent advocacy organisation (Cancer Voices New South Wales), professionals providing support services to cancer patients and their carers, an oncologist, and researchers working in the field of psycho-oncology, sexuality, health, and gender. Three dichotomous questions (no, yes), asked participants: if they were in a sexual relationship with the patient; have there been changes to the sexual relationship post-cancer; and if so, have issues about sexuality been discussed with a health care provider?

#### **2.2.2 Statistical analyses**

Cronbach alpha coefficients were calculated to assess the internal consistency of HADS and CRA subscales. Cronbach alpha values above .80 were considered estimates of good reliability, while scores above .60 were considered adequate*.* A multivariate logistic regression with backward selection was conducted to determine the relationship between CRA subscales and impact on the sexual relationship to test the research question of the impact of burden of care on changes to the sexual relationship post-cancer. Univariate linear regressions with impact on the sexual relationship as a predictor and HADS Anxiety and Depression subscales as outcome variables, were conducted to assess the association between changes to the sexual relationship and psychological well-being. This analysis excluded data from the 26 bereaved participants, given that the HADS measures psychological well-being over last 7 days. To examine the potential moderating influence of participant gender, age, hours of provided direct care, and cancer type (dichotomised as non-sexual or sexual type), a series of multiple regressions were conducted where interactions with these variables were examined in addition to the main effect of impact on the sexual relationship. Cancer stage was not examined, due to the small cell size in early stage cancer. Equations with continuous predictor variables were centred as suggested by Howell (2002). An alpha level of .05 was used for all analyses.

#### **2.3 Qualitative methods and analysis**

#### **2.3.1 Measures**

Two open-ended questionnaire items concerning changes in sexuality post-cancer were: please describe the changes to your sexual relationship; and, if your role as carer has made

Sexuality and Intimacy in the Context of Cancer 79

 Disrupted schedule 152 17.17 5.18 0 – 25 Health problems 153 13.23 2.56 3 - 19 Lack of family support 155 9.28 4.75 0 - 25 Financial problems 152 8.30 3.26 0 - 15 Self esteem 152 26.19 4.49 5 - 35

 Anxiety 126 10.79 4.40 1 - 20 Depression 125 7.38 4.11 0 - 19 *N* **%**

141 90.4

**Variable** *N* **Mean S.D. Range**  Partner carer age 153 57 10.63 28 - 79 Person with cancer age 154 59 11.83 29 - 93 Hours of direct care per day 116 10.25 9.06 0 – 24 Years since diagnosis 153 3.48 4.36 2mths – 23yrs

CRA subscale scores:

 Heterosexual 149 95.5 Lesbian / Gay 7 4.5

 Asian 3 1.3 Not stated 12 7.7

 Colorectal/Digestive 24 15.4 Breast 23 14.7 Haematological 22 14.1 Multiple Non-Sexual 15 9.6 Multiple Sexual 10 6.4 Prostrate 10 6.4 Other\* 52 33.4

 No longer detectable 29 18.6 Early 10 6.4 Advanced 56 35 Not sure/applicable 61 39

\* "Other" includes: Respiratory, Gynaecological, Brain, Mesothelioma, Pancreatic and missing.

Table 1. Sample characteristics for partner carer and person with cancer

HADS subscale scores:

Sexual orientation:

 White European /Aust

Ethnicity:

Cancer type:

Stage of disease:

any difference to your sexual relationship, please describe this difference. Participants who were interviewed were asked the same set of questions, with scope to elaborate on topics or issues as they arose.

A semi-structured interview, audio-recorded and conducted on a face-to-face or telephone basis, lasting approximately 1 hour, was used to examine in depth partners' experiences of sexuality post-cancer. The interview discussion focused on: changes to partners' intimate/sexual relationship; feelings about their intimate/sexual relationship; communication with the person with cancer about intimacy; and experiences with health care professionals. In accordance with established protocols in qualitative research, sampling was discontinued when information redundancy was reached, and no additional information was forthcoming (Miles et al., 1994).

## **2.3.2 Analysis of open-ended questions and interviews**

All of the interviews were transcribed verbatim, and thematic analysis was used to analyse the data (Braun et al., 2006). After transcription, the interviews and open-ended questionnaire responses were independently read by two researchers, in order to ascertain the major themes, and to develop a coding frame. Following discussion between the researchers, and other members of the research team, the coding system was used to organise the data into conceptual categories which were based on participants' stories and responses. The research was, therefore, largely inductive, where the concepts and categories came from the data, rather than being deductive or informed by existing preconceptions about cancer caring and sexuality (Janesick, 1994). The interviews and responses were then coded thematically by two of the researchers, using consensus discussion, with a third researcher available to discuss any disagreements. NVivo software, a program which allows for qualitative data to be organised thematically, as well as across demographic, or other key variables, was used to organise the coded data. The coding frame focused on the following major themes: Nature of changes to sexuality (cessation; reduction; renegotiation); Reasons given for changes to sexuality (Impact of cancer or cancer treatment: caring role; repositioning of person with cancer as patient); and Feelings about such changes (positive and negative). Discussion and competing explanations between the two researchers during the coding process, as well as discussions with the broader team, allowed the coding frame to be refined (Barbour, 2001). Responses from the questionnaire were also tabulated and counted to identify frequency and patterning within and across groups, specifically gender and cancer type.

### **3. Results**

#### **3.1 Quantitative results**

#### **3.1.1 Reliability estimates**

HADS Anxiety and Depression subscales displayed good reliability with Chronbach alpha scores >.80 (.87 and .81 respectively), while the CRA subscales 'Disrupted Schedule' (.77) and 'Lack of Family Support' (.67) had adequate internal consistency with scores >.60). Cronbach alpha scores for the remaining CRA subscales were <.60 ('Self Esteem' at .56; 'Financial Problems' at .44; and 'Health Problem' at -.17). Descriptive statistics for the HADS and CRA subscale scores are presented in Table 1.

any difference to your sexual relationship, please describe this difference. Participants who were interviewed were asked the same set of questions, with scope to elaborate on topics or

A semi-structured interview, audio-recorded and conducted on a face-to-face or telephone basis, lasting approximately 1 hour, was used to examine in depth partners' experiences of sexuality post-cancer. The interview discussion focused on: changes to partners' intimate/sexual relationship; feelings about their intimate/sexual relationship; communication with the person with cancer about intimacy; and experiences with health care professionals. In accordance with established protocols in qualitative research, sampling was discontinued when information redundancy was reached, and no additional

All of the interviews were transcribed verbatim, and thematic analysis was used to analyse the data (Braun et al., 2006). After transcription, the interviews and open-ended questionnaire responses were independently read by two researchers, in order to ascertain the major themes, and to develop a coding frame. Following discussion between the researchers, and other members of the research team, the coding system was used to organise the data into conceptual categories which were based on participants' stories and responses. The research was, therefore, largely inductive, where the concepts and categories came from the data, rather than being deductive or informed by existing preconceptions about cancer caring and sexuality (Janesick, 1994). The interviews and responses were then coded thematically by two of the researchers, using consensus discussion, with a third researcher available to discuss any disagreements. NVivo software, a program which allows for qualitative data to be organised thematically, as well as across demographic, or other key variables, was used to organise the coded data. The coding frame focused on the following major themes: Nature of changes to sexuality (cessation; reduction; renegotiation); Reasons given for changes to sexuality (Impact of cancer or cancer treatment: caring role; repositioning of person with cancer as patient); and Feelings about such changes (positive and negative). Discussion and competing explanations between the two researchers during the coding process, as well as discussions with the broader team, allowed the coding frame to be refined (Barbour, 2001). Responses from the questionnaire were also tabulated and counted to identify frequency and patterning within and across groups, specifically gender and

HADS Anxiety and Depression subscales displayed good reliability with Chronbach alpha scores >.80 (.87 and .81 respectively), while the CRA subscales 'Disrupted Schedule' (.77) and 'Lack of Family Support' (.67) had adequate internal consistency with scores >.60). Cronbach alpha scores for the remaining CRA subscales were <.60 ('Self Esteem' at .56; 'Financial Problems' at .44; and 'Health Problem' at -.17). Descriptive statistics for the HADS

issues as they arose.

cancer type.

**3. Results**

**3.1 Quantitative results 3.1.1 Reliability estimates**

and CRA subscale scores are presented in Table 1.

information was forthcoming (Miles et al., 1994).

**2.3.2 Analysis of open-ended questions and interviews**

 \* "Other" includes: Respiratory, Gynaecological, Brain, Mesothelioma, Pancreatic and missing. Table 1. Sample characteristics for partner carer and person with cancer

Sexuality and Intimacy in the Context of Cancer 81

One hundred and twenty two partners, including 26 who were bereaved, elaborated on the changes to their sexual relationship they had experienced post-cancer, in open-ended responses. These responses concerned the status of the sexual relationship, perceived reasons for the changes, and partners' feelings about the changed relationship. Each theme is reported below, illustrated by extracts from the questionnaires and the interviews. Demographic information is provided for longer quotes stemming from the interviews. For readability, these specific details are not provided for every questionnaire and interview quote. Percentages cited refer to the open ended questionnaire responses, completed by 122

Two major themes characterised accounts of the current status of the sexual relationship: cessation or decreased frequency of sex or intimacy; and re-negotiation of sex or intimacy. *Cessation or decreased frequency of sex and intimacy.* Complete cessation of sex, decrease in the frequency of sex, or a reduction in the frequency or quality of intimacy and closeness, was reported by 59% of women and 79% of men.  For other participants, it was a gradual change: "Initially we found other ways to be intimate, however over time our sex life has ceased". The impact of both the cessation of sex, and the loss of intimacy, was evident in the

A big… big chunk of your life is lost, And I don't just mean the physical aspects of it…  Others simply described a change in frequency: "Virtually non-existent"; "This aspect of our marriage has nearly stopped". Many participants also reported decreased closeness and intimacy. Responses included: "…I couldn't cuddle like we used to" and, "Often feel frustrated that it doesn't happen like it used to – he is not as romantic either". Participants also shared these sentiments in the

I don't know whether you just take this huge step back and you're not feeling that intimacy, because I think it comes from fear that you start to think well, maybe they won't be around, and if this is the way it's going to be then I should start preparing

*Renegotiation of sexual and non-sexual intimacy post-cancer.* Renegotiation of their sexual relationship, in terms of non-coital sexual practices, or the development of non-sexual intimacy, was reported by 19% of women and 14% of men. Men (12%) were more likely than women (1%) to report having developed alternative sexual behaviours to those practiced

*57 year old woman caring for 53 year old husband with brain cancer*

myself rather than being clingy and wanting to be in their space. *52 year old woman caring for 55 year old husband with prostate cancer*

**3.2 Qualitative results**

following interview extract:

around.

interviews, for example:

**3.2.1 Status of current sexual relationship**

participants.

#### **3.1.2 Predictors of changes to the sexual relationship**

Table 2 summarises the odds ratios (*Exp(B)*) for CRA subscales as predictor variables in a model predicting changes to the sexual relationship post-cancer. The CRA subscale "Disrupted Schedule' was the single significant predictor of changes to the sexual relationship (*Exp(B*) = 1.20, *p* = .002, CI = 1.05 – 1.22), indicating that a person with a onepoint increase in CRA "Disrupted Schedule' would be 1.2 times more likely to report that the sexual relationship had changed post-cancer. No other CRA subscales emerged as predictors of change to the sexual relationship post-cancer.

Note: Model significant at the level of 0.01; -2 log likelihood = 145.84; X2 = 10.21.

Table 2. Multivariate logistic regression results for factors associated with a change in the sexual relationship post cancer (*N* = 146)

#### **3.1.3 Impact of changes in the sexual relationship upon psychological well-being**

Table 3 presents the results of univariate regression analyses conducted to examine the contribution of the predictor variable 'changes to the sexual relationship post-cancer' on participant's HADS Anxiety and Depression scores. Changes to the sexual relationship was a significant predictor of HADS Anxiety scores (*t*(124) = 2.04, *p* = .04) and HADS Depression scores (*t*(124) = 2.02, *p* = .04) respectively. Multiple regressions testing the main effect of changes to the sexual relationship and interaction terms representing potential moderating variables were conducted separately for gender, age, hours of provided direct care, and cancer type. No significant interaction effects were found predicting either HADS Anxiety or HADS Depression scores.

Note: For HADS Anxiety, R2 = .03; For HADS Depression, R2 = .03. \* p < .05.

Table 3. Univariate regression results for change in the sexual relationship upon psychological wellbeing (*N* = 124)

#### **3.2 Qualitative results**

80 Topics in Cancer Survivorship

Table 2 summarises the odds ratios (*Exp(B)*) for CRA subscales as predictor variables in a model predicting changes to the sexual relationship post-cancer. The CRA subscale "Disrupted Schedule' was the single significant predictor of changes to the sexual relationship (*Exp(B*) = 1.20, *p* = .002, CI = 1.05 – 1.22), indicating that a person with a onepoint increase in CRA "Disrupted Schedule' would be 1.2 times more likely to report that the sexual relationship had changed post-cancer. No other CRA subscales emerged as

CRA Subscale *Exp(B)* Significance 95% CI

Disrupted Schedule 1.20 .002 1.05 – 1.22

 Health Problems .02 .86 .85 – 1.22 Lack of Family Support .07 .16 .97 – 1.19 Financial Problems .03 .73 .88 – 1.20 Self Esteem -.02 .64 .89 – 1.07

Table 2. Multivariate logistic regression results for factors associated with a change in the

**3.1.3 Impact of changes in the sexual relationship upon psychological well-being**  Table 3 presents the results of univariate regression analyses conducted to examine the contribution of the predictor variable 'changes to the sexual relationship post-cancer' on participant's HADS Anxiety and Depression scores. Changes to the sexual relationship was a significant predictor of HADS Anxiety scores (*t*(124) = 2.04, *p* = .04) and HADS Depression scores (*t*(124) = 2.02, *p* = .04) respectively. Multiple regressions testing the main effect of changes to the sexual relationship and interaction terms representing potential moderating variables were conducted separately for gender, age, hours of provided direct care, and cancer type. No significant interaction effects were found predicting either HADS Anxiety

Change in the sexual relationship 1.82 .89 .18\*

Change in the sexual relationship 1.68 .83 .18\*

Note: For HADS Anxiety, R2 = .03; For HADS Depression, R2 = .03. \* p < .05. Table 3. Univariate regression results for change in the sexual relationship upon

*B SE B ß*

Note: Model significant at the level of 0.01; -2 log likelihood = 145.84; X2 = 10.21.

**3.1.2 Predictors of changes to the sexual relationship**

predictors of change to the sexual relationship post-cancer.

Constant -.73 .26

*Variables in the model*

*Variables not in the model*

sexual relationship post cancer (*N* = 146)

or HADS Depression scores.

*HADS Anxiety Subscale*

*HADS Depression Subscale*

psychological wellbeing (*N* = 124)

One hundred and twenty two partners, including 26 who were bereaved, elaborated on the changes to their sexual relationship they had experienced post-cancer, in open-ended responses. These responses concerned the status of the sexual relationship, perceived reasons for the changes, and partners' feelings about the changed relationship. Each theme is reported below, illustrated by extracts from the questionnaires and the interviews. Demographic information is provided for longer quotes stemming from the interviews. For readability, these specific details are not provided for every questionnaire and interview quote. Percentages cited refer to the open ended questionnaire responses, completed by 122 participants.

#### **3.2.1 Status of current sexual relationship**

Two major themes characterised accounts of the current status of the sexual relationship: cessation or decreased frequency of sex or intimacy; and re-negotiation of sex or intimacy.

*Cessation or decreased frequency of sex and intimacy.* Complete cessation of sex, decrease in the frequency of sex, or a reduction in the frequency or quality of intimacy and closeness, was reported by 59% of women and 79% of men.  For other participants, it was a gradual change: "Initially we found other ways to be intimate, however over time our sex life has ceased". The impact of both the cessation of sex, and the loss of intimacy, was evident in the following interview extract:

A big… big chunk of your life is lost, And I don't just mean the physical aspects of it…  Others simply described a change in frequency: "Virtually non-existent"; "This aspect of our marriage has nearly stopped". Many participants also reported decreased closeness and intimacy. Responses included: "…I couldn't cuddle like we used to" and, "Often feel frustrated that it doesn't happen like it used to – he is not as romantic either". Participants also shared these sentiments in the interviews, for example:

I don't know whether you just take this huge step back and you're not feeling that intimacy, because I think it comes from fear that you start to think well, maybe they won't be around, and if this is the way it's going to be then I should start preparing myself rather than being clingy and wanting to be in their space.

*52 year old woman caring for 55 year old husband with prostate cancer*

*Renegotiation of sexual and non-sexual intimacy post-cancer.* Renegotiation of their sexual relationship, in terms of non-coital sexual practices, or the development of non-sexual intimacy, was reported by 19% of women and 14% of men. Men (12%) were more likely than women (1%) to report having developed alternative sexual behaviours to those practiced

Sexuality and Intimacy in the Context of Cancer 83

"He was just too exhausted". The impact of cancer treatment on the self-esteem and selfimage of their partner was also identified as a reason for changes to the sexual relationship

*Exhaustion resulting from the caring role.* In citing reasons for changes to the sexual relationship, exhaustion resulting from the caring role was positioned as the cause by 16% of the women and 9% of the men. The responses included: "We don't really have any intimacy anymore for reasons including his health and my exhaustion"; "Exhaustion, brain still ticking about things to be organised"; "Even if he was still interested in the sexual side of our marriage I think I would have been too exhausted to have taken part". Participants also commented on revised prioritisation, centred on coping and survival, leaving no time for

…sexual relations of any sort were not an option as I had to be on the go all the time,

I just wanted to treat her the same as I always did but I couldn't get the thought out of

When you are a carer it's hard to be a lover, for either party, when dealing with incontinence of both bowel and bladder infections, along with the daily grind of showering, dressing, shaving, etc, then transferring from bed to wheelchair and return. *59 year old woman who cared for 63 year old male partner with haematological cancer, bereaved*  A number of male participants gave accounts which suggested sex was 'inappropriate' with a person with cancer: "I was very aware of my role as carer and never did anything to embarrass my wife. There was never any inappropriate behaviour". This could result in

I feel disgusted with myself that I would inflict sex upon a dying woman, having said that my wife does not object and occasionally welcomes it, saying it is a life giving and loving act and a part of our sacrament…. I was never a fast lover, but now I try and get

In the interviews, a number of the women participants also described now positioning their

Participants also reported a redefined role or status as carer rather than lover. Examples included: "My role as a carer has overridden my role as a wife…"; "Having to spend more time on house/garden chores and be carer/nurse, one feels more like a housekeeper than a

*Re-positioning of person with cancer as patient.* For 28% of women and 47% of men caring for a partner with cancer, the caring role was reported to have resulted in a re-positioning of the person with cancer as a patient, which subsequently influenced their sexual relationship. Many partners described emotional effects of the caring role, or concern for their partner's feelings and health status. Comments included: "With all the worry and stress that my husband is most likely to die, I now have very little desire for sex"; "Curbed by concerns

*61 year old man caring for 43 year old female partner with lung cancer, bereaved*

looking after her.  When I did have sex at the beginning she would accuse me of not treating her the

in a number of cases.  This consisted of changed sexual positions when attempting intercourse: "I am obviously more careful, having adjusted positions"; as well as the development of "workable alternatives to achieve partner satisfaction... within restrictions caused by the treatments", including oral sex, massage, masturbation, or the use of a vibrator.

Women (18%) were more likely than men (5%) to report that re-negotiation involved nonsexual intimacy, such as hugging and cuddling: "I'd put my legs up on his lap, and he'd put his arms around me, and I'd cuddle into him, and we'd watch TV".

The last week of my husband's life, he wanted to make love, but physically could not due to his illness. We talked this over as we always did and he knew that hugs, cuddles and closeness were far more important than the actual act of making love.

*64 year old woman who cared for 64 year old husband with pancreatic cancer, bereaved*

The importance of this closeness to the well-being of both the partner and the person with cancer was emphasized by many of the interviewees. In the excerpt below, one partner describes how important it was to maintain physical closeness with her husband, despite the significant physical barriers that could have served to restrict the expression of intimacy.

We deliberately had kept the double bed. And then, when he got sick, and they needed a more supportive bed, I brought my single bed in, and we got this special height, set at the same height, so that we was always next to me. … I remember the morning he died, I remember cuddling him all night. (…)  These were: the impact of cancer treatment; exhaustion resulting from the caring role; and the re-positioning of the person with cancer as a patient, rather than as a sexual partner.

*Impact of cancer treatment.* Participants referred to "cancer" and then specified the impact of cancer treatment as the major reason for changes to the sexual relationship. Within this theme, reports of physical barriers to sex were reported by 30% of men and 33% of women.  For others, abstinence was due to overall bodily restrictions: "… He is physically unable to position himself for sex now".

In June an epidural catheter was inserted into my husband's chest and commenced on morphine 30 mgs three times a day. Not only was there no energy or inclination, because of the pain and reduced energy, there was now a 'physical barrier' to our relationship as well as all the side effects of morphine.

*59 year old woman who cared for 56 year old husband with mesothelioma, bereaved*

Many of the participants also described side effects of the treatment such as pain, fatigue, and exhaustion. Pain was described thus: "When he is unwell because of treatment I tend to be very careful in touching him in case it causes further pain/discomfort". Descriptions of fatigue being given as a reason for changes to the sexual relationship included: "As a result of treatment (chemotherapy) my wife is tired more of the time and her libido is reduced";

prior to the cancer. This consisted of changed sexual positions when attempting intercourse: "I am obviously more careful, having adjusted positions"; as well as the development of "workable alternatives to achieve partner satisfaction... within restrictions caused by the

Women (18%) were more likely than men (5%) to report that re-negotiation involved nonsexual intimacy, such as hugging and cuddling: "I'd put my legs up on his lap, and he'd put

The last week of my husband's life, he wanted to make love, but physically could not due to his illness. We talked this over as we always did and he knew that hugs, cuddles

We deliberately had kept the double bed. And then, when he got sick, and they needed a more supportive bed, I brought my single bed in, and we got this special height, set at the same height, so that we was always next to me. … I remember the morning he died, I remember cuddling him all night. (…) Just to have your… to have your arm around

treatments", including oral sex, massage, masturbation, or the use of a vibrator.

and closeness were far more important than the actual act of making love. *64 year old woman who cared for 64 year old husband with pancreatic cancer, bereaved*  The importance of this closeness to the well-being of both the partner and the person with cancer was emphasized by many of the interviewees. In the excerpt below, one partner describes how important it was to maintain physical closeness with her husband, despite the significant physical barriers that could have served to restrict the expression of intimacy.

*59 year old woman who cared for 69 year old husband with mesothelioma, bereaved*

Many of the participants provided reasons for changes in their sexual relationship postcancer. These were: the impact of cancer treatment; exhaustion resulting from the caring role; and the re-positioning of the person with cancer as a patient, rather than as a sexual

*Impact of cancer treatment.* Participants referred to "cancer" and then specified the impact of cancer treatment as the major reason for changes to the sexual relationship. Within this theme, reports of physical barriers to sex were reported by 30% of men and 33% of women.  For others, abstinence was due to overall bodily restrictions: "… He is physically unable to

In June an epidural catheter was inserted into my husband's chest and commenced on morphine 30 mgs three times a day. Not only was there no energy or inclination, because of the pain and reduced energy, there was now a 'physical barrier' to our

*59 year old woman who cared for 56 year old husband with mesothelioma, bereaved*

Many of the participants also described side effects of the treatment such as pain, fatigue, and exhaustion. Pain was described thus: "When he is unwell because of treatment I tend to be very careful in touching him in case it causes further pain/discomfort". Descriptions of fatigue being given as a reason for changes to the sexual relationship included: "As a result of treatment (chemotherapy) my wife is tired more of the time and her libido is reduced";

his arms around me, and I'd cuddle into him, and we'd watch TV".

him was just so, so good.

position himself for sex now".

partner.

**3.2.2 Reasons for changes in sexual relationships**

relationship as well as all the side effects of morphine.

"He was just too exhausted". The impact of cancer treatment on the self-esteem and selfimage of their partner was also identified as a reason for changes to the sexual relationship in a number of cases. For example, one partner commented that:

As her health declined she had very low self esteem caused by loss of hair and muscle tone. When I did have sex at the beginning she would accuse me of not treating her the same as I did in the past and get depressed.

*61 year old man caring for 43 year old female partner with lung cancer, bereaved*

*Exhaustion resulting from the caring role.* In citing reasons for changes to the sexual relationship, exhaustion resulting from the caring role was positioned as the cause by 16% of the women and 9% of the men. The responses included: "We don't really have any intimacy anymore for reasons including his health and my exhaustion"; "Exhaustion, brain still ticking about things to be organised"; "Even if he was still interested in the sexual side of our marriage I think I would have been too exhausted to have taken part". Participants also commented on revised prioritisation, centred on coping and survival, leaving no time for sex or intimacy.

…sexual relations of any sort were not an option as I had to be on the go all the time,

looking after her.  For 28% of women and 47% of men caring for a partner with cancer, the caring role was reported to have resulted in a re-positioning of the person with cancer as a patient, which subsequently influenced their sexual relationship. Many partners described emotional effects of the caring role, or concern for their partner's feelings and health status. Comments included: "With all the worry and stress that my husband is most likely to die, I now have very little desire for sex"; "Curbed by concerns about inflicting pain or discomfort";

I just wanted to treat her the same as I always did but I couldn't get the thought out of my head that she was terminally ill.

*61 year old man caring for 43 year old female partner with lung cancer, bereaved*

Participants also reported a redefined role or status as carer rather than lover. Examples included: "My role as a carer has overridden my role as a wife…"; "Having to spend more time on house/garden chores and be carer/nurse, one feels more like a housekeeper than a lover".

When you are a carer it's hard to be a lover, for either party, when dealing with incontinence of both bowel and bladder infections, along with the daily grind of showering, dressing, shaving, etc, then transferring from bed to wheelchair and return.

*59 year old woman who cared for 63 year old male partner with haematological cancer, bereaved*  A number of male participants gave accounts which suggested sex was 'inappropriate' with a person with cancer: "I was very aware of my role as carer and never did anything to embarrass my wife. There was never any inappropriate behaviour". This could result in ambivalent feelings in the face of the partners' own desires.

I feel disgusted with myself that I would inflict sex upon a dying woman, having said that my wife does not object and occasionally welcomes it, saying it is a life giving and loving act and a part of our sacrament…. I was never a fast lover, but now I try and get it over and done with for her.

*45 year old man caring for 44 year old wife with breast cancer*

In the interviews, a number of the women participants also described now positioning their partner as a child, which was antithetical to sexuality:

Sexuality and Intimacy in the Context of Cancer 85

Some participants mentioned feelings of perceived obligation. For men, it was usually in relation to feeling that their partner felt obliged to provide sex. Examples included: "On the infrequent occasions we now have sex she wants it over and done with as quickly as possible"; "She became less interested in sex and only accommodated me as if it was a wifey duty". For women participants, obligation was positioned in terms of themselves feeling

At the early stages of the diagnosis I felt that I couldn't say no to him which put a lot of pressure on me.  Sadness at the loss of their sexual relationship was also evident in many of the accounts: "There is just an enormous sadness that we can no longer have this intimacy…"; "Still this whole traumatic experience has left me feeling very upset"; "it's profound sadness, I mean very, very sad", resulting in feeling "terribly fragile and

In response to a question regarding whether there had been discussion of sexuality with a health professional, 20% of partners indicated that there had. The rate of discussion differed across cancer types, ranging from 50% of prostate cancer partner carers, to 0% of respiratory cancer. The rates across the other main cancer types were: 33% brain; 33% pancreatic; 30% breast; 29% gynaecological; 20% multiple – sexual; 17% colorectal/digestive; 17% mesothelioma; 15% multiple – non sexual; 15% other; and 9% haematological. Of those who had discussed sexuality with health care providers, 30% stated that they were not at all or not very satisfied, 33% said that they were neither satisfied nor dissatisfied, and 37%

In the interviews, a number of the partners commented on their discussions with health professionals, in each case giving a critical account. When they asked about sexual matters, partners reported being told "Oh you don't need to know that and things like that", or told that they were "irresponsible to be thinking about having children" in raising fertility as a concern. The majority, however, gave accounts of sexuality not being discussed at all: "I haven't got a lot of medical advice about how we should continue to conduct our intimate

Prostate cancer has required removal of the sac that produces sperm. I am 36 and had always taken for granted I would fall pregnant in the most natural and intimate way. Once my partner is stronger, we will seek advice from an IVF Clinic regarding artificial insemination (hence my partner has secured enough in the sperm bank!). Still this

fail twice after some minutes, then succeed the next day. *45 year old man caring for 44 year old wife with breast cancer*

chance of feeling that I didn't want to make love to him.

whole traumatic experience has left me feeling very upset. *36 year old woman caring for 59 year old husband with prostate cancer*

vulnerable and sad, and so sorry that it was all going".

indicated that they were satisfied or very satisfied.

relationship"; "they did not educate us on anything… at all".

**3.2.4 Discussions of sexuality with health professionals**

 *59 year old woman caring for 63 year old husband with gastric adenocarcinoma*

obliged to engage in sex.

and fertility:

 …leaves me less satisfied – there was a time shortly a few weeks after she was diagnosed with breast-bone cancer where I found it hard to orgasm/ejaculate – I would

it's like looking after …one of your children now. That's the feelings that you have, you know, you don't have any ..sexual feelings for your children … (so) I just don't have them anymore.

*57 year old woman, caring for 53 year old husband with advanced brain cancer.*

#### **3.2.3 Partners' feelings about their changed sexual relationship**

In the open-ended questions, a number of the participants made comments about the emotions they experienced in response to these changes in their sexual relationship postcancer. These were evenly divided between positive and negative responses.

*Positive responses.* Positive accounts were provided by 17% of women and 16% of men.

Treatment makes my partner feel sick and makes me worry about him so this means we don't feel up to sex… This is not an issue – just a fact/reality of current situation.

*39 year old woman caring for 53 year old male partner with lung cancer*

A number of participants also reported affection and companionate devotion:

Sexual urge had gone but my husband made me feel the most loved and cared for woman on this earth by his loving actions, his consideration, his caring attitude and the advice I sought even up till 12 hours before he died. I loved this man totally and he me. *68 year old woman who cared for 69 year old husband with brain cancer, bereaved*

In the interviews, a number of participants reported that the cancer experience had actually brought them closer together, with one man saying he "probably has a more affectionate relationship at this point in our lives, and marriage" than prior to the onset of cancer, and another commenting "with the exclusion of sex, our intimacy is closer probably than it's been for a long time".  Increased emotional closeness, despite absence of sex, was also evident in a number of the women participants' interviews:

We are so much closer now than we were….we wouldn't be as close now and we wouldn't be able to talk about absolutely anything now…Just seeing him at night, just makes my heart just go hshshsh…. Whereas before I don't think we appreciated that about each other.

*29 year old woman caring for 33 year old husband with brain cancer*

*Negative responses.* Negative feelings were reported by 13% of the women and 21% of the men who said that there had been a change in their sexual relationship. These responses included self-blame, "No sex for 12 months – more my fault", and rejection by their partners "I felt excluded and unwanted.  A number of woman participants also expressed rejection toward their partners:

I don't feel the desire to have a physical relationship with my husband. It almost makes me feel ill to even contemplate it. His whole physical appearance repels me.

*52 year old woman caring for 55 year old husband with prostate cancer*

Participants also reported lack of fulfilment in relation to sex: "Not able to relax and enjoy"; "Often feel frustrated that it doesn't happen like it used to"; "At times, I have considered having an affair purely for sexual gratification".

In the open-ended questions, a number of the participants made comments about the emotions they experienced in response to these changes in their sexual relationship post-

*Positive responses.* Positive accounts were provided by 17% of women and 16% of men. Within this theme, participants described feelings of understanding or acceptance of the

Treatment makes my partner feel sick and makes me worry about him so this means we don't feel up to sex… This is not an issue – just a fact/reality of current situation.

Sexual urge had gone but my husband made me feel the most loved and cared for woman on this earth by his loving actions, his consideration, his caring attitude and the advice I sought even up till 12 hours before he died. I loved this man totally and he me.

In the interviews, a number of participants reported that the cancer experience had actually brought them closer together, with one man saying he "probably has a more affectionate relationship at this point in our lives, and marriage" than prior to the onset of cancer, and another commenting "with the exclusion of sex, our intimacy is closer probably than it's been for a long time".  Increased emotional closeness, despite absence of sex, was also evident in a number of the women participants'

We are so much closer now than we were….we wouldn't be as close now and we wouldn't be able to talk about absolutely anything now…Just seeing him at night, just makes my heart just go hshshsh…. Whereas before I don't think we appreciated that

*Negative responses.* Negative feelings were reported by 13% of the women and 21% of the men who said that there had been a change in their sexual relationship. These responses included self-blame, "No sex for 12 months – more my fault", and rejection by their partners "I felt excluded and unwanted.  A number of woman participants also expressed

I don't feel the desire to have a physical relationship with my husband. It almost makes

Participants also reported lack of fulfilment in relation to sex: "Not able to relax and enjoy"; "Often feel frustrated that it doesn't happen like it used to"; "At times, I have considered

me feel ill to even contemplate it.   That's the feelings that you have, you know, you don't have any ..sexual feelings for your children … (so) I just don't have  …leaves me less satisfied – there was a time shortly a few weeks after she was diagnosed with breast-bone cancer where I found it hard to orgasm/ejaculate – I would fail twice after some minutes, then succeed the next day.

*45 year old man caring for 44 year old wife with breast cancer*

Some participants mentioned feelings of perceived obligation. For men, it was usually in relation to feeling that their partner felt obliged to provide sex. Examples included: "On the infrequent occasions we now have sex she wants it over and done with as quickly as possible"; "She became less interested in sex and only accommodated me as if it was a wifey duty". For women participants, obligation was positioned in terms of themselves feeling obliged to engage in sex.

At the early stages of the diagnosis I felt that I couldn't say no to him which put a lot of pressure on me. I had to make sure that I could respond to him and not give him any chance of feeling that I didn't want to make love to him.

 *59 year old woman caring for 63 year old husband with gastric adenocarcinoma*

A small number of women participants shared negative feelings regarding family planning and fertility:

Prostate cancer has required removal of the sac that produces sperm. I am 36 and had always taken for granted I would fall pregnant in the most natural and intimate way. Once my partner is stronger, we will seek advice from an IVF Clinic regarding artificial insemination (hence my partner has secured enough in the sperm bank!). Still this whole traumatic experience has left me feeling very upset.

*36 year old woman caring for 59 year old husband with prostate cancer*

Some participants reported feeling angry that their sexual relationship was 'lost', as one woman commented, "(I'm) so much crosser…because a big part of our relationship had just gone out the window". Sadness at the loss of their sexual relationship was also evident in many of the accounts: "There is just an enormous sadness that we can no longer have this intimacy…"; "Still this whole traumatic experience has left me feeling very upset"; "it's profound sadness, I mean very, very sad", resulting in feeling "terribly fragile and vulnerable and sad, and so sorry that it was all going".

#### **3.2.4 Discussions of sexuality with health professionals**

In response to a question regarding whether there had been discussion of sexuality with a health professional, 20% of partners indicated that there had. The rate of discussion differed across cancer types, ranging from 50% of prostate cancer partner carers, to 0% of respiratory cancer. The rates across the other main cancer types were: 33% brain; 33% pancreatic; 30% breast; 29% gynaecological; 20% multiple – sexual; 17% colorectal/digestive; 17% mesothelioma; 15% multiple – non sexual; 15% other; and 9% haematological. Of those who had discussed sexuality with health care providers, 30% stated that they were not at all or not very satisfied, 33% said that they were neither satisfied nor dissatisfied, and 37% indicated that they were satisfied or very satisfied.

In the interviews, a number of the partners commented on their discussions with health professionals, in each case giving a critical account. When they asked about sexual matters, partners reported being told "Oh you don't need to know that and things like that", or told that they were "irresponsible to be thinking about having children" in raising fertility as a concern. The majority, however, gave accounts of sexuality not being discussed at all: "I haven't got a lot of medical advice about how we should continue to conduct our intimate relationship"; "they did not educate us on anything… at all".

Sexuality and Intimacy in the Context of Cancer 87

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 (O'Grady, 2005), and to cultural constructions of normative heterosexuality which expect men to initiate sex (Ussher, 1997b). Previous research has found that partners are reluctant to initiate sexual intimacy if the person with cancer does not initiate (Maughan et al., 2002), 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 can not 'perform' through sexual intercourse (Boehmer et al., 2001). 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

Equally, the 'male sex drive discourse' which positions men as 'needing' sex (Hollway, 1989, Potts, 2002), 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 post-cancer, or for alternative sexual practices to be developed, in contrast to women partners who were more likely to report that re-negotiated intimacy was non-sexual. The phallocentric bias evident in the research and clinical literature on cancer and sexuality (Hyde, 2006), which serves to reinforce the notion that 'normal' sex = coitus, and emphasises 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 post-cancer. However, in the present study, four of the six lesbian partners all reported complete cessation of sex, suggesting that even couples positioned outside of a heterosexual matrix

Whilst previous research has attributed changes in sexuality and intimacy post-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 also had an impact on the sexual relationship (Hawkins et al., 2009). Participants who reported changes in sexuality post-cancer reported significantly higher scores on the disrupted schedule sub-scale of the Caregiver Reaction Assessment Scale, suggesting aspects of burden of care were associated with such changes. In the interviews and open ended questions, these participants also associated sexual changes with stress, fatigue and exhaustion, revised prioritisation centred on coping and survival, and a redefined status as carer rather than 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 (1999, p. 186) found that the initial period of 'becoming a caregiver' is particularly stressful, as carers are focused not only 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 (Foy et al., 2001). The finding in the present study that women were more likely to report that exhaustion had an impact on sexuality is in line with previous research which found that women cancer carers experience greater personal costs from caring (Lutsky et al., 1994, Ussher et al., 2008). As these personal costs have been found to be associated with higher rates of depression and anxiety, as well as lower life satisfaction and quality of life ratings, (Hagedoorn et al., 2000, Bookwala et

terms of a man's sense of self (Tiefer, 1994).

al., 2000), it is a serious health issue.

(Butler, 1990) can experience changes to sexuality post-cancer.

it's not properly addressed by the medical profession, it is just completely glossed over.