I have a friend who feels he is divorced today because his wife could not handle the ramifications of the treatment of prostate cancer particularly the recovery to potency or lack thereof. He felt she felt he was “damaged goods.” When I learned I had prostate cancer initially I felt I was damaged goods. That I had let my family down.
Now about my relationship, I had been married about 30 years, at the time, was the best it ever had been. My wife stepped up and was a beautiful person during this time. I chronicle some of that in my book and have mentioned it under “wifes and partners” of this blog. Some of my memorable times married involved all the stuff we went through “together” as I was recovering from my prostatectomy. It brings a smile to my face now thinking about it. Kinda wish I was in that frame of mind now like we were then.
So same situation different reaction to it. As the article says, there is some stuff that comes down when a couple has to deal with all this. And it’s not what you’d think….
As Yogi said, ” 90% of baseball is 50% mental.” Or something like that.
I bet Jo An has something to say about this!
The Lonely Female Partner
A Central Aspect of Prostate Cancer
Poul Bruun, PhD, RN; Birthe D. Pedersen, PhD, MScN, BA; Palle J. Osther, MD, PhD; Lis Wagner, Dr PH, RN
Posted: 01/02/2012; Urol Nurs. 2011;31(5):294-299. © 2011 Society of Urologic Nurses and Associates
Abstract and Introduction
Introduction Experiences of prostate cancer affect the whole family. The health of the patient with prostate cancer can improve if the family’s need for care and professional support is acknowledged.
Purpose The focus of this study is life with incurable prostate cancer from the perspective of the female partner with the intent of better understanding female partners’ everyday experiences.
Method The investigation takes a phenomenological-hermeneutic approach and is a qualitative, longitudinal study.
Findings Different forms of loneliness are experienced when one’s male partner is diagnosed with incurable prostate cancer; the loneliness is imposed and self-inflicted.
Conclusion Results of this study point to a need for further research into the experience of loneliness in female partners of men with prostate cancer and how these women can be supported as they go through the process.
Level of Evidence – VI (Melnyk & Fineout-Overholt, 2011)
Globally, prostate cancer is among the most frequent forms of cancer, with approximately 650,000 new cases diagnosed in 2002 and over 220,000 deaths in the same year (Parkin, Bray, Ferlay, & Pisani, 2005). Incurable prostate cancer is defined as a cancer that cannot be treated with curable intent by means of traditional treatment modalities, such as radical prostatectomy, external radiation therapy, or brachytherapy due to disease extending beyond the prostate capsule (locally advanced disease), metastases to lymph nodes, and/or distant metastases (usually to bone).
Experiences of prostate cancer affect the whole family. The health of the patient with prostate cancer can improve if the family’s need for care and professional support is acknowledged. The most common phenomena in adapting to changes in daily life with prostate cancer are existential challenges. After hospital discharge, nursing services are needed to support the patient and the family with managing the physical and emotional effects related to the cancer diagnosis and treatment (Bottorff et al., 2008; Butler, Downe-Wamboldt, Marsh, Bell, & Jarvi, 2000; Giarelli, McCorkle, & Monturo, 2003; Ka’opua, Gotay, & Boehm, 2007; Ka’opua, Gotay, Hannum, & Bunghanoy, 2005).
Qualitative study on prostate cancer has shown that following diagnosis, the female partner was considered to be the patient’s most important support in life (Arrington, 2005). No studies were found dealing with the female partner’s experiences of and perspective on life where the man is suffering from incurable prostate cancer.
The focus of this study is life with incurable prostate cancer from the perspective of the female partner with the intent of better understanding female partners’ everyday experiences. This knowledge may support female partners’ and their families’ capacity to cope with daily life.
The investigation takes a phenomenological-hermeneutic approach and is a qualitative, longitudinal study. The design was inspired by the French philosopher Ricoeur’s (1979) work on narratives and interpretation.
The study was undertaken at the Research Unit of Nursing, University of Southern Denmark and the Urological Research Centre at Fredericia Hospital, Hospital Littlebelt, Denmark. The facility draws patients from an area with 400,000 inhabitants, has 700 beds, employs 4200 staff, and treats approximately 60,000 inpatients and 425,000 outpatients every year. It is a general service, teaching hospital, and for some departments, a university facility.
The recruitment of informants was carried out over a period of nine months. Eight adult, Danish-speaking, female partners of men recently diagnosed with incurable prostate cancer were invited to participate, and five consented. Excluded were those who were burdened with many family commitments or who were partnered with men with prostate cancer in the terminal phase. Informants ranged in age from 54 to 73 years, four were married, and one was cohabitating. They all had children.
Data collection was carried out in the form of qualitative interviews over a period of 15 months. Four informants were interviewed in their own homes. One informant wished to be interviewed at the hospital. Each interview lasted approximately one hour and was tape-recorded.
Informants were interviewed at 3 and 10 months after the male partner’s diagnosis. A semi-structured interview guide with open-ended questions was used in the interviews, which opened with the following questions: How did you feel when you found out your partner was sick? How do you experience daily life with your husband? How do you manage your daily life on a practical level? During the interview, further elaboration and description were encouraged. At the second set of interviews, adjustments were made to the interview guide used in the original interviews to analyze relevant themes that emerged from the first interviews.
The interviews were transferred to the Qualitative Media Analyzer (Skou, 2001), a soundbased data program that facilitates analysis of sound data. Analysis and interpretation were based on the method inspired by Ricoeur (1979) and took place on three levels: naïve reading, structural analysis and critical interpretation, and discussion (Lindseth & Norberg, 2004; Pedersen, 1999; Ricoeur, 1979).
In the naïve reading, the female partners’ experiences of their male partners’ illness came to light, as did the significance of their search for meaning in their new life. The analysis brought into focus experiences of social isolation from resources and values in life, and from ways to cope with life with a chronically ill partner. These areas became the subject of further analysis and interpretation.
The structural analysis pointed to one main theme, coping with life, and three subthemes described as aspects of loneliness, informal care, and the significance of relationships.
In the following critical interpretation, the results are set out. The sections are structured in relation to the themes from the structural analysis.
Aspects of Loneliness. Different types of loneliness emerged in the attempt to manage daily life with the male partner’s chronic illness. In this sense, loneliness can be said to have many faces. An imposed loneliness was seen, caused by silence about the illness from everyone around, and a self-inflicted loneliness, where life is lived as before while apparently ignoring the illness.
The imposed loneliness became apparent when the illness was not discussed. For example, after three months, the following was expressed: “He keeps it (the illness) very much inside himself.” Silence about the illness was experienced and attributed to the male partner’s unspoken wish or lack of ability to share his feelings and experiences of the illness with others. Silence was experienced as a means the man used to better control his daily life.
The female partner experienced the man’s silence as a discomforting factor in their joint daily life that contributed to the couple isolating themselves from each other. The female partner found herself alone with her thoughts and feelings, which intruded on her in connection with the partner’s illness. In this way, the feeling of loneliness can be interpreted as an imposed loneliness.
In some cases, this loneliness became worse over time in that the male partner’s silence about the illness spread to the family and the social network. After 10 months, the following was expressed: “People really don’t want to hear about the illness and especially not the children.” The quotation discloses a decrease in conversation about the illness, both within the close family and in the social network. This experience of loneliness seems to become worse if the family and the social network pretend the illness does not exist and do not talk about it. The quotation expresses powerlessness and a failing hope that one could use conversation to be free of loneliness.
Thoughts and experiences about the illness and the associated silence are believed to affect both the social and psychological situation. Silence about the illness from everyone around and the accompanying imposed loneliness seems to affect daily life to such a degree that exhaustion can develop in the attempt to cope with life.
Self-inflicted loneliness emerged as another aspect of loneliness. After three months, the following was expressed: “We stay more or less at home on our own.” This statement suggests an apparent isolation in the home – an isolation that can be the couple’s strategy to avoid daily questions about the illness and its consequences. In this physical and social isolation, self-inflicted loneliness can be one way to support the male partner.
Self-inflicted loneliness express ed itself further in the couple’s way of managing everyday life. After three months, it was stated: “We don’t let it have too much influence on our daily lives…we’re both agreed on that, so we do what we usually do.” The quotation shows how an attempt is made to live with the illness in everyday life so it is invisible and dominates as little as possible. This approach ignores the illness and is believed to be a tool to control the consequences of the illness and thereby a way of managing to live with it.
Even though self-inflicted loneliness could be of positive significance, the study also showed that one’s own needs were disregarded, perhaps out of a sense of duty to support the male partner. Isolation in the home can be experienced over time as a further burden on top of the male partner’s illness, which is expressed in the following quotation at a 10-month interview: “I don’t like being here (at home); I need to be out where there are other people.” The quotation suggests the wish to get out and be among other people, and that the need for social company and conversation becomes stronger over time.
In the endeavor to cope with life with an ill partner, the need to free oneself from the loneliness from isolation in the home that worsens by not talking openly about the illness took on a particular significance. This lack of openness was sustained after many months and is expressed in the following quotation: “We don’t talk about it much… he’d rather it was like it’s always been.”
Informal Care. The analysis showed that the female partners felt a duty, a need, and a wish to provide care, both in relation to their partner and to the family. A dilemma was experienced with regard to care for the family in that their own needs were put aside. The sense of natural care was expressed at three months as a wish or a need: “I have always wanted to help others.” The need is expressed here as a will or a duty to provide care and thereby ensure others are looked after. The need or duty to provide care for the family is considered to be completely fundamental, and the duty of care is never questioned for the partner and family in the course of the illness.
During the course of the study, the dilemma regarding neglect of one’s own needs began to be seen. Caregiving focuses on others’ needs expressed here in an interview at 10 months: “I’m the type to put myself last and make sure everyone else is okay.” There was an imbalance between looking after oneself and looking after others. The quotation shows the capacity for self-care is weakened because the need to look after others overshadows the recognition of one’s own needs.
The following statement at three months expresses how informal caregiving takes up a lot of time in daily life: “I spend all my time on caring for my husband.” The statement shows that in the first few months of the illness, there is little time for anything apart from a range of duties in connection with the partner’s illness.
The analysis shows informal care is considered to be very time-consuming in the first period after the diagnosis, but the nature of care is considered to change and perhaps ease over time. This is expressed in an interview after 10 months: “It’s about care, but hardly at all about duty (care burden).” The quotation shows that informal care has changed over time from needing to be constantly available to providing care in the usual sense where warmth and closeness are expressed. It is a type of care that allows for the female partner’s freedom and a balance between feeling and common sense.
The Significance of Relationships. The analysis showed that one way to manage life during a partner’s illness was to find strength in love, both the love the couple once had and now has for each other and from the family. A further strength that played an important role was faith in a higher power.
The study showed that love and care in daily life was significant, which at three months was expressed as: “A tenderness between us, it’s like we look after one another a lot.” The quotation expresses a love between the partners that was the foundation for and an important dimension of having the strength to cope with life. The strength found in love is not considered to lessen over time but is more obvious. The following was expressed after 10 months: “We really look after each other a lot; we’ve always done so, but recently, it’s perhaps been a bit more obvious.”
The love and togetherness of the couple also show in the female partner’s loneliness. Out of love for the male partner, she accepts living in isolation as well as the male partner’s silence about the illness and his wish to have a normal life where the illness is ignored. She feels she is living alone in her own world.
One aspect of love exists between the couple, and another aspect encompasses love and togetherness in the family, which finds expression in help and support. For example, at three months: “We can go (to the family) if we need help.” Such help and support is shown to be significant if it is found in the family and is valued throughout the course of the illness. At 10 months, the following was expressed: “But if there’s anything, no matter how small…I know I can just ring my son and daughter-in-law.” This statement shows a culture and value system where it is meaningful to help and support each other. This shows natural care and concern, where there are no boundaries to prevent assisting and supporting the family.
Aside from the tenderness and love shown between the couple and the family, the study also showed that having faith (for example, belief in God) was of major significance. The following quotation was expressed: “It (faith) helps us, especially because we believe in life after death, we have somewhere to take our anxiety and our joy and our whole life…it means one takes it all more calmly.”
For some female partners, faith in God contributes to a foundation of peace in life in relation to the illness. The analysis showed that faith did not become less significant over the period; on the contrary, it was strengthened. At 10 months, the following statement was made: “I pray to God whenever there’s anything…” The quotation suggests that faith has become more significant during the period.
Results are discussed here, and the sections are structured in relation to the themes from the structural analysis.
Aspects of Loneliness
The study showed that thoughts and considerations about the illness and its consequences are unique to each individual. If true, the family structure and roles may change over time. Other studies describe prostate cancer as a social crisis that can alter aspects of the family structure (for example, the hierarchy of the family) (Arrington, 2005). The lack of openness in the family and the social network may end up controlling the family’s way of communicating, and in that way, isolate the individual with his or her own thoughts and feelings.
Comparable findings are seen in a study where the male partner’s silence about his own illness could lead to others in the family and the social network avoiding talking about his health (Gray, Fitch, Phillips, Labrecque, & Fergus, 2000). In this way, a form of censorship can arise, preventing individuals from discussing their feelings and experiences of the illness. This is inexpedient. Although openness in itself is not the only condition, it is necessary for the recognition and a reciprocal understanding of the illness, which can help in the process of coping with life when a serious illness affects the family.
According to Eriksson (2008), the loneliness a person experiences when he or she loses a loved one is unbearable. In relation to this study, the family communication and conversations about the illness are played down, and the worry about losing one’s partner remains unspoken. This results in a reduction in contact with the family and social network. When the life of a loved one has been lost, the imposed loneliness that may ensue can be difficult to bear and can perhaps be completely unendurable. Over a period of time, this feeling seems to worsen, which can make coping with life more difficult.
Eriksson (2008) noted how this type of loneliness can become a form of hardship. In the current study, the imposed loneliness can hamper individuals both socially and psychologically. If left untreated, the loneliness can develop into a hardship, which can make life seem more difficult to manage. Eriksson (2008) described that the hardship makes sense if one is allowed to realize one’s suffering. The current study showed that self-inflicted loneliness seemed to make sense by a realization of one’s own inner needs, which in the study was seen as a sense of duty to support and help.
Noddings (2003) described how a woman often defines herself as a person with duties and capacities to provide care for others. This study showed the female partner feels a duty, a need, and a wish as a woman to care for her family. Eriksson’s (2008) concept of suffering, where suffering includes informal caregiving, can be applied to the current study. Meaning is given to the hardship the partner’s illness has brought upon the family, which is significant.
The family finds itself in a new situation where the male partner’s health is threatened by an incurable cancer. The study showed that the sense of duty, need, or wish to provide natural care for the partner can lead to an imbalance between care for others and oneself. The role of care in the family is altered; reciprocal caring between the male and female partners is replaced with the female partner as informal caregiver for her ill partner. This is a new situation for the female partner who, according to Boehmer and Babayan (2005), displays anxiety in the stressful situation. In this way, the female partner is put in a situation where she is very vulnerable and where it becomes more difficult to find resources to manage daily life.
A person is considered either more or less vulnerable through the relationships and assets he or she brings to an event or crisis, but also the ability to mobilize resources and support during that event (Schröder-Butterfill & Marianti, 2006). In this regard, Proot and colleagues (2003) found that factors such as care burden, fear, and uncertainty may contribute to the caregiver’s increased vulnerability in a family coping with a serious illness. The current study showed that the care burden took up all of the female partner’s time at the beginning of the illness, when it could be difficult to mobilize resources to manage life. Uncertainty in the new situation, fear, and time spent on care can be a threat that can make the individual more vulnerable in her attempt to handle life with her male partner’s illness.
The care burden, however, appeared to be reduced over the time period. In this regard, Phillips and colleagues (2000) found that when care routines had become established, uncertainty and anxiety of providing care disappeared. Ka’opua et al. (2005) found that observation and continual learning resulted in control over care in daily life. The current study showed over time, the type of care given changed to become more caring in the usual sense, where warmth and closeness were expressed. Over time, the possibility to develop skills in caring arises so that a freedom is possible, a balance that makes it easier to manage life with an ill partner.
The Significance of Relationships
Noddings (2003) described the love for close family, the innermost circle, as the foundation for care or the strength to give care. The current study showed that love is expressed between couples as tenderness and in looking after one another. Furthermore, there was an apparent culture in the family, where supporting and helping each other was valued. According to Noddings (2005), this suggests the strength to cope with life and the consequences of the male partner’s illness are found in love within the family’s innermost circle.
Proot et al. (2003) found that caring for a very ill person at home requires continuous balancing between care burden and the capacity to cope. Whether or not the caregiver will succeed in keeping an optimum balance is dependent on a number of factors impinging on their vulnerability.
In the loneliness, a silence is experienced, followed by social and psychological isolation. Informal care followed the burden of care. There is a constant balancing between the consequences of the male partner’s illness and the strength that love gives to manage daily life. Consequences of illness or actions in the family life may disturb the love within the family. According to Proot et al. (2003), this will increase the individual’s vulnerability in the attempt to cope with life. Eriksson (2008) stated the mystery of suffering is found in an individual’s capacity to love, confirmation of life, and simultaneously, unconditional integration of the painful and unavoidable suffering. The significance of love apparently grows over time during the illness, which is also seen in this study as strength in coping with life.
Ka’opua et al. (2005, 2007) found spirituality and religious beliefs were the most important resources in adapting to life with the male partner’s prostate cancer and ordinary everyday problems. Giarelli et al. (2003) found the female partner believed praying to God would help her to maintain her inner strength. Comparable results have been described by Taylor (2003), who found it was important for the caregiver of the patient with cancer to receive and give love and be able to pray privately to God. Similarly, the current study showed that faith became more significant over this period.
Strengths and Limitations
The phenomenological-hermeneutic design involving qualitative interviews was significant to disclose opinions, meanings, and lived experiences. In the course of the interview, the informant and the researcher tried to generate a narrative – a text that would give the opportunity to put words on experiences. All female partners except one were interviewed in the safe and known environment of their own homes. Finally, the longitudinal design made it possible to study experiences and changes over time.
The study should be seen as a contribution to the understanding of the female partner’s experiences of and perspectives on prostate cancer. The results and conclusion of the study are limited in that only five female partners’ experiences and perspectives of men with incurable prostate cancer were included, and it therefore highlights only one perspective of a family’s life. Five female partners participated in the study, but the longitudinal design of any qualitative research has an inherent risk of data overload; a substantial amount of information is generated by return contact with the same participants. It is advisable, therefore, to limit the number of participants in qualitative studies (Morse, 1993). The sample was assessed as being quite typical in age for patients with incurable prostate cancer; only one informant was younger than average. The experiences from this female partner may be atypical because of her age.
Implications for Urologic Nursing
Results from this investigation can suggest the need for urologic nurses to promote or initiate prostate cancer support groups for female partners, prostate cancer schools for relatives with subjects (such as psycho-social consequences of advanced prostate cancer and how to cope), and hotlines for relatives. Nurses can also screen for loneliness among female partners and offer support.
Different forms of loneliness are experienced when a woman’s male partner is diagnosed with incurable prostate cancer: a loneliness that can be imposed and/or self-inflicted. Imposed loneliness can lead to isolation, and eventually, to exhaustion, making it hard to cope with life. Self-inflicted loneliness can occur as an obligation to care, but it is not logical if it causes one’s own needs to be suppressed or completely neglected. Informal care is experienced as a dilemma because of the imbalance between caring for the male partner and caring for oneself. The strength to cope with life is found through reciprocal love in the family and in the power of faith. Female partners of men with incurable cancer may find different ways to manage their life.
Results of this study point to a need for further research into the experience of loneliness in female partners of men with incurable prostate cancer and how one can support them as they go through the process. Finally, more knowledge is required about how the whole family experiences and manages daily life with a man diagnosed with incurable prostate cancer.
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SchröThe Lonely Female Partner
A Central Aspect of Prostate Cancer