Male Caregivers of Patients With Breast and Gynecologic Cancer

Experiences From Caring for Their Spouses and Partners

Violeta Lopez, PhD, RN, FRCNA; Gina Copp, PhD, RN; Alexander Molassiotis, PhD, RN

Disclosures

Cancer Nurs. 2012;35(6):402-410. 

In This Article

Findings

Caregivers' Characteristics

The mean age of the caregivers was 60 (SD, 13) years (range, 27–74 years). Their level of education was relatively high, with 7 having completed secondary education, 4 college, and 4 university education. One-third (n = 5) were retired; 8 had full-time jobs, and 2 were not working. All were white, and all but one was Christian. Their spouses were diagnosed either with breast (n = 5) or gynecologic cancer (n = 10).

Impact of Male Caregiving Over Time

The Table shows the interrelated cognitive, physical, psychosocial/emotional, and gender-related impacts of caregiving experienced by male caregivers that extended nearly over 12 months. Findings from the study showed that within the 12-month period, each of the predominant categories takes on "an individual time period of their own." This was based on a careful assessment of the key issues raised by the interviewees over time, suggesting that some key issues in earlier assessment times were mentioned less frequency or were assigned with less importance in subsequent interviews. The following excerpts provide some of the findings extracted from the accounts of male caregivers whom we interviewed. The themes and categories have been organized according to the length of time they lasted in keeping with the prospective longitudinal nature of the study.

Theme 1: Caregiving Experience Observed to Last From 0 to 3 Months. Breaking Bad News to Others: Men have discussed the difficulties they had experienced in caregiving. During the first 3 months, they took it upon themselves to carry the responsibility to tell the family and friends about their wives'/partners' diagnosis as 2 caregivers said:

I had to let the family know what is happening. She [wife] does not want to do it, but I thought they had the right to know. I thought it was really unfair for the kids not to know, not being kept in the picture so I've told them. (GYC12 at T1)
I went to see our daughter. I do not want to tell her over the phone. (GYC03 at T2)

Theme 2: Caregiving Experiences Observed to Last From 0 to 6 Months. Tiredness, Pain, and Loss of Sleep: The accounts from the interviews showed time and time again the continual physical impact caregiving posed on the physical health of the male caregivers. Additional stress such as the physical toll of housework on top of caring for their wives/partners was often mentioned. The following excerpts highlighted some of the issues related to tiredness, pain, and loss of sleep.

I sort of do most of the running around in the house and shopping, and it was tiring. (GYC01 at T1)
I was getting all kinds of pain in my chest. I thought I pulled a muscle doing weights, so I stopped, but it wasn't going away, and I was getting quite stabbing pains and went to see the doctor, and he gave me something to relieve the pain. (GYC10 at T2)
I'm not feeling great at all… combination of everything, felt lousy, not sleeping well. I never felt like this in my life. (BREC03 at T2)

Accounts from interviews conducted at 6 months (T3) showed a dramatic change. The physical impact on health was no longer as prominent and appeared to have subsided around 6 months. During the interviews at this time point, the caregivers reported that they have settled to providing care to their wives/partners in a routine manner, treating it as a "routine job" they had to do. We observed from the accounts provided that both the caregivers and their wives/partners returned to some semblance of normality in their lives including doing housework as a normal part of their routine.

I was totally unprepared for the extra work I had to do. I had to become instant cook, cleaner, gardener, chauffeur. Yeah, it was tiring at first as I am not used to doing multiple jobs, but I handled them all well after getting used to it. (GYC12 at T3)
We are now a bit of mix and match. What I mean was, for example, I will iron the trousers, and my wife irons the shirts. (BREC04 at T3)

Searching for Information About the Disease: The cognitive impacts on caregiving were evident throughout the 6-month period. This ranged from searching for information to fears and seeking alternative treatment. When wives/partners were diagnosed with cancer, all caregivers wanted detailed and specific information about the diagnosis, treatment and management of symptoms, adverse effects, and physical care. When information was not provided by clinicians, they expressed frustration and continued to search for answers that they could easily understand. A number of caregivers reported:

I honestly didn't know what chemo was. I thought it was a machine you put on… like in radiation therapy. (BREC04 at T1)
I think there should be some form of simple explanation… explaining things. I'm sure it will help me understand. (GYCO3 at T1)
Not getting the information quickly enough is too frustrating. I never really thought of what is actually going on… but there's always, you know, questions. (BREC07 at T1)

Seeking Alternative Treatment: Caregivers' desire to help their wives/partners led them to seek alternative treatments, particularly medicinal herbs, which they perceived may help, such as:

We tried red clover to counteract the effects of the sort of instant menopause. We tried cod liver oil for aches and pains and regular exercise. (GYC01 at T1)
Fresh pineapple after chemo helps overcome side effects, so I cut up and give it to her. I also offer her ginger nuts with her tea to mitigate the symptoms. (BREC03 at T2)
I've seen articles about different chemotherapy drugs. One of them is derived from mint and will do the same things as tamoxifen without the sweats. (BREC07 at T3)

Theme 3: Caregiving Experiences Observed to Last From 0 to 9 Months. Unpreparedness for Female Tasks: Male caregivers were also unprepared to take on female usual work at home, but on the ninth month, they got used to doing housework and cooking. Although none complained of being caregivers and were satisfied with what they can give to their spouse/partners, it was the unpreparedness for the tasks that they found difficult:

I was totally unprepared for the extra work I had to do now that she always feels tired and helpless. (GYC12)
I had to become instant cook, cleaner, gardener, chauffer. (GYC12)
When I talk about what I do, I think how the hell do I find time to do all these things and also find time to do my own work [job]. (BREC03)

Theme 4: Caregiving Experiences Observed to Last From 0 to 12 Months. Difficulty Expressing Emotions: For the whole 12 months, male caregivers found it difficult to express their concerns to another person, especially their male friends. They did not know who to approach with their problems and reported greater levels of unexplained emotional distress. Difficulty expressing emotions was clear from these participants:

I'm not looking for sympathy, but who's caring for me, but there isn't anybody out there. I don't know where to go for support. (BREC03 at T2)
I can't explain what's wrong with me. Just something inside me is not right. It might be fear, I don't know. I need to get it off my chest. I want to feel supported. (GYC06 at T3)
I can't communicate really, my feelings. You can't go to the block standing next to you in the pub, you know, and start talking about my feelings. (GYC12 at T4)

Worrying About Finances: As well as the above, not being able to work while their wives/partners were sick proved to be a mental burden for some of the caregivers:

I've got quite a number of things in my mind such as paying the bills. (GYC06 at T1)
Paying the bills is still a problem. I need to work to pay the bills. (GYC06 at T2)
I tried to get Fridays off to be with my wife but have to work some nights as well, to keep my job. (GYC06 at T3)
It felt like you're running into a brick wall. I started realizing what life is really like. I was in agony for weeks, mental wise because of overdraft. (GYC06 at T4)
I was thinking of selling the house and buy a small flat and put the rest of the money in the bank. (GYC06 at T4)

Fear of Losing Wife/Partner: The psychological impact reported by the caregivers was not related to the physical work associated with caregiving, but it was predominantly about the diagnosis of cancer and its prognosis, which lasted throughout the year.

There are lots of things I wouldn't be able to do without her, to be honest, because we kind of rely on each other. (BREC04 at T2)
It's gradually starting to become more stressful, as you can imagine because you're worried that it's going to be bad news in the end… no treatment. (GYC01 at T3)
There's always a danger, always that thing at the back of your mind, I'm going to lose her. I know there is no guarantee. (BREC07 at T4)

Fear of the Unknown/uncertainty: Fear of the unknown and uncertainty of the future outcome of cancer treatment for their partners were also reported. However, most of the caregivers overcame these feelings within the year as they began to accept the diagnosis and cope with the uncertainty and adopted a "taking charge" attitude instead, an obligation they felt they had to do as husbands/partners.

Being told your wife got cancer, you automatically think that's it, she's finished, no cure, it's cancer. (GYC01 at T1)
It's very emotional you know. The thought of your partner being ill and maybe not get better, obviously, it's devastating. The side effects of treatment actually look as bad as the cancer itself. (GYC01 at T2)
I can't explain what's wrong with me. Just something inside me is not right. It might be fear. It's a frightening thought. I don't know. (GYCO1 at T3)
I'm coping with it now. It was just a shock in the beginning. I'm feeling better now. I'm coping with it now… yeah… no problem. It was a life-changing thing… just got to accept it. (CYG01 at T4)
It's part of the trials of life; bad things happen. I try to hope and get through and come out the other side and hope for the best for my wife. (CYG01 at T4)

Lack of Social Support and Limited Social Contacts: Male caregivers expressed their ignorance about female health problems and expressed the lack of support.

I'll be honest… men are quite ignorant of… women's health problems… and I'm no exception, but there's no one there to talk to about how I felt. (GYC12 at T1)
I've got no family over here. The friends and neighbors have been good, but there's a limit to what they can do. (BREC03 at T3)

As well as the perceived lack of social support, another psychosocial aspect of life that was affected appeared to relate directly to the treatment regimens and subsequent treatment-related symptoms of their wives/partners. For some of the caregivers, this meant changing their lifestyle especially during the first 9 months following diagnosis. Normal social routines such as going on holidays, seeing friends, and so on were disrupted. These disruptions further imposed limits to social contacts and support:

We had to cancel our holidays, which we've already booked 6 months ago. (GYC12 at T1)
Social life was affected for a while, but it's virtually back to normal. (GYC12 at T3)
It [cancer] certainly changed our lifestyle a great deal in the beginning. Nowadays, we just take it day-by-day and see how we feel. We went out for meals every now and then. (GYC12 at T4)

Contextual and Intervening Conditions and Their Influence on Male Caregivers

Throughout the 12-month period, most of the caregivers went to the extent of changing their lifestyle in order to support their wives/partners through the journey. Caregivers accepted that food and eating were particularly important and problematic in patients who have been diagnosed with cancer. Therefore, caregivers changed their eating habits to suit that of their wives/partners. Caregivers also did not appear to have problems in meal preparation and eating the same food as their partners.

I feel guilty eating all that stuff so what I did was change my diet to suit my wife's and actually started eating vegetables and brown bread. (GYC12)

Because of the treatment-related symptoms wives/partners experienced, caregivers also had to change their routine social life as exemplified below:

I go out every Tuesday night for darts and dominos with my friends, and I go bowling 4 nights a week and have a couple of beers with the rest of the team. I've cut that back now and come straight home to make sure wife is all right. (GYC12 at T2)

The quality of marital/partner interactions was also found to be strong as male caregivers attached importance to their intimate relationship by "sharing roles, working together, and understanding each other's needs" as well as adjusting their life styles as a number of caregivers said:

We are now a bit of a mix and match. What I mean is that, for example, I'll iron the trousers, and she'll iron the shirts. (BREC04)
Sex has been suspended for the past 6 months, but everything's back to normal. (GYC06)

Construction and Management of Caregiving Experiences

Although the cognitive, sexual, and physical impact slowly changed starting at 3 months after diagnosis, caregivers reported that their overall construction and management of their caregiving role were to "protect and care for" their spouses/partners overtime. Their immediate caring role was to "instill positive thoughts" to their wives/partners and enhance their coping mechanisms as that recounted:

I always tell her to be calm about it and be positive. Just don't think of what's happening now. Think about what's going to happen in 3 months, 6 months and be optimistic… that's the main thing. (GYC12 at T1)
I say to her, we've just had a nasty episode in our life, and it will be gone in no time. It's like an iron burn, a car crash, anything. It's happened, there's nothing we can do about it, and it's fine. We have to hope for the best outcome. (GYC10 at T2)
She has this thinking that her cancer is like a black beetle running around her body, and they're pumping poison into her. So I told her, first you've got to think positive; I don't run away and leave her cope with it. (BREC04 at T2)

Another aspect that supported their caring and protecting role was putting the wife/partner above self as something important and an obligation by caregivers:

She [wife] would always come first. I am more concerned about her (GYC12). I used to go out every Tuesday night for darts and dominos, and I go bowling 4 nights a week. I've cut that back down now and come home straight to make sure [wife] is all right (BREC04). I think both our priorities have changed since diagnosis. Now [12 months later], especially mine, you know, have changed… my needs and requirements. (BREC07)

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