Based on the American Cancer Society’s 2016 estimates of 1,685,210 new cancer diagnoses this year, there are an estimated 1.6 million new cancer caregivers (ACS, 2016). With the majority of estimated new cancer diagnoses made in men and women 45 and older at 1,543,920, with about 50 per cent or more married or partnered, there are an estimated 771,960 new spousal or partner cancer caregivers (ACS, 2016; U.S. Census Bureau, 1999). Spousal caregivers represent about 6 per cent of the overall population, with 44.4% cancer family caregivers being married or partnered cancer caregivers (National Alliance for Caregiving, 2009; Williams & Bakitas, 2012). Of the cancer family caregivers, 66.7% are typically female (Williams & Bakitas, 2012). It should be emphasized that often spousal caregivers, like many caregivers, take care of more than just a spouse, in that the caregiver may have children and parents they also care for (National Alliance for Caregiving, 2009). In fact, statistics from the National Alliance for Caregiving (2009) report, documented that 37% of surveyed caregivers actually take care of two or more people.
With November being National Family Caregiver Month, it is important to pay tribute and acknowledge one of the most intense and challenging spousal caregiver situations: the impact of cancer on the couple. There is a level of heightened anxiety and mortality that is commonly experienced for both the cancer patient and caregiver dealing with the uncertainty and intense medical diagnostic tests, procedures, treatments, and the potential for recurrence. Based on a research review and my own full-time spousal cancer caregiving experience, this article provides a broad review on theoretical models playing a role for cancer couples, the protective and risk factors documented by research, and my own proposed 10 common challenges couples deal with when coping with cancer.
Adult Transition Theory
There are many potential factors impacting an adult’s adjustment to cancer, which becomes more complicated when considering the couple’s transition to cancer and cancer’s diagnosis, treatment, and survivorship. The couple is a dyad interaction or system, which may be part of a larger family system if there are children, which involves three pairs and the family unit interaction. Additionally, family structural theory tells us that the spousal couple with children are first the couple pair and second, the co-parent unit. Family systems theory, in addition to internal and external factors, all explain the many factors affecting the couples to navigate cancer individually and as a couple system.
Anderson, Goodman, and Schlossberg (2012) developed a four-faceted theory on what coping resources impact adults in transition. These factors include: Self (personal characteristics and psychological resources), Situation or characteristics of the event (trigger, timing, control, role change, duration, previous experience, and concurrent stress), Social support (types, circle of support, function, options), and coping responses (information seeking, direct action, and inhibition of action) and functions. Cancer, similar to parenthood, is a transition process that includes phases of assimilation and continuous appraisal as people move in, through it, and never fully out of it.
Positive psychology, which focuses on the study of posttraumatic growth, hypothesizes that highly challenging life circumstances may bring about positive psychological change and increased functioning (Broderick & Blewitt, 2010). The gains found by researchers Tedeschi and Calhoun (2004) were an altered set of priorities about life, a greater appreciation for one’s life, closer and more positive relationships with others, improved sense of life’s possibilities, and increased spirituality. Relatedly, Helgeson and Lopez (2010) developed a theoretical model outlining the most common domains of growth following a stressor to include new possibilities (e.g. a change in career), personal strength (e.g. better able to cope with stress), spirituality (e.g. become closer to God), appreciation of life (e.g. live each day one day at a time), and improved relationships (e.g. closer to one’s spouse).
Protective and Mitigating Factors
Upon reviewing eight research articles relating to the couples’ coping with cancer and family cancer caregivers, here are the documented protective and mitigating factors:
Positive dyadic coping of cancer related distress is associated with lower levels of distress for both partners and patients, though patients have more distress than partners (Badr et al., 2010).
Personal control buffers low spousal support and distress for patients and partners (Dagan et al., 2011).
Optimism and social support serve as protective factors for quality of life in advanced cancer patients (Applebaum et al., 2014).
Effective partner support (defined as matching patient’s quality and quantity needs) is associated with lower distress in survivors’ of stem cell transplants (Rini et al., 2011).
Daily shared good news and greater perceived partner responsiveness is positively associated with daily feelings of intimacy occurred for both patients and partners (Otto, Laurenceau, Siegel, & Belcher, 2015).
Female patients whose husbands reported higher marital satisfaction reported receiving more partner support but had no impact on patient’s mood on support (Boeding et al., 2014).
Positive mood of female patients’ was associated with receiving more support from husbands (Boeding et al., 2014).
Concerning overall cancer family caregivers sources of resilience, some cancer family caregivers found strength in religious practices and their belief in fate or a creator, their social network of family and friends, personal strength and competence with the health care system due to prior losses, and a minority of caregivers who realized the importance of self-care (Williams & Bakitas, 2012).
Upon reviewing seven research articles relating to the couples’ coping with cancer, here are the documented risk factors:
Male prostrate cancer patients’ wellness and other-focus was negatively correlated when female partners were low in other-focus (Wilson, Barrineau, Butner, & Berg, 2014).
For both partners and patients, depressive rumination (negative thoughts of loss and harm of cancer) relate to depressive symptoms (Steiner et al., 2014).
Women report consistently more distress than men regardless of their role as patient or partner (Hagedoorn et al., 2008).
Holding back sharing concerns is associated with decreases in the couples’ intimacy and relationship satisfaction (Manne et al., 2015).
Male partner’s high emotional arousal may interfere with the female patient’s ability to openly experience their distress during social support conversations with their partners (Fischer et al., 2015).
Male partner’s unsupportive behavior and female patient’s perceptions of male partner’s support, negatively impacted quality of life for women with early stage breast cancer (Manne, Winkel, Ostroff, & Grana, 2005).
The couple’s perceptions of each other’s unsupportive behaviors (e.g. mental and behavioral disengagement) may have detrimental effects on both partner’s social and cognitive processing and adaptation to cancer (Manne, Siegel, Kashy, & Virtue, 2014).
Survivors of couples after testicular cancer report less sexual satisfaction than during testicular cancer (Tuinman et al., 2005).
Prior experience with loss and caregiving further contributed to some cancer caregivers sense of despair (Williams & Bakitas, 2012).
Some spousal cancer caregivers expressed their role of acting as a buffer or shield from the social network as burdensome (Williams & Bakitas, 2012).
Many cancer family caregivers struggled to find meaning in their experience, with uncertainty, and confronted mortality. For most caregivers, the uncertainty of the future was a tremendous strain impacting their ability to enjoy the present (Williams & Bakitas, 2012).
There are, of course, limitations to address in these aforementioned studies. There are complex relational and interactional processes involved with the couples’ adaptation to cancer and relationship satisfaction. Gender, coping styles, perceptions of support, communication of negative and positive feelings, age at diagnosis, parenthood status, relationship satisfaction prior to cancer, and many other yet to be researched and identified factors may all play a role into impacting the transition of cancer on the couple’s relationship satisfaction.
Secondly, the research results are not consistent and conclusive about the role of the partner’s mood, support, and other variables on the patient and vice versa. Thirdly, other limitation of current research include the fact that most of the couples research are married heterosexual couples, with the female patient having breast cancer or the male patient having prostrate or testicular cancer. Lastly, the research failed to identify and take into account parenthood status, age, relationship, emotional connectedness, and sexual satisfaction pre-cancer.
Ten Proposed Factors That May Challenge Couples
Because on the lack of research on the transition for the cancer couple and marital satisfaction, I have proposed ten possible factors that may cause couples difficulty. I developed these factors from my own personal experience as a full-time spousal cancer caregiver, along with my education and clinical experience in grief counseling, crisis counseling, and caregiver issues.
1. Differing Grief Reactions
Each couple may respond, process, and move through grief very differently, as one partner may be an intuitive adaptive (more emotion-focused) griever, while another is an instrumental adaptive griever. One partner may cope by talking and conducting research, while the other partner copes by avoiding and taking one’s mind off cancer and grief surrounding cancer and other losses through focusing on hobbies.
2. Caregiver Burnout
There is a danger of trying to do too much, and not relying or requesting more support. Caregiver burnout, which is associated with increased depression and anxiety, ultimately impacts the emotional health of the care receiver and the marriage/partnership.
3. Cancer Interferes With Couple Time
If the relationships of in-laws and your families are negative and challenging, this becomes another source of relationship stress. Cancer tends to bring around more visits from family and friends, and this also means, less alone time for you as the couple. Intense in-patient and out-patient treatments also limits the quality and quantity of alone time for the couple.
Additionally, as noted by Williams and Bakitas (2012), cancer often impacts the cancer caregiver’s ability to enjoy the present, due to a sense of increased anxiety over uncertainty and meaninglessness. This anxiety ultimately may impact the couple’s ability to connect in a more normal, light-hearted, and meaningful way.
4. Roles Changes, New Identities
Being a caregiver is not a traditional role for most men, and a spouse’s illness may interfere with one’s ability to earn a living. Undergoing cancer treatment may mean permanently or temporarily letting go of work, parenting, and/or social roles, all of which are losses and transition points.
5. Infertility or Delaying Parenting Goals
For a young childless couple that wants children, a cancer diagnosis and treatment means delaying and even permanently denying the couple’s goals to bear children. Depending on the acuteness of the cancer, there may not be sufficient time to plan for sperm or egg banking options.
6. Pain and Fatigue
Lack of sleep, increased pain, and fatigue are all associated with increased or exaggerated responses to normal daily stressors and irritability, which may increase opportunities for conflict.
7. Intimacy Decreases
It is not uncommon for couples facing cancer diagnosis and treatment to experience a decrease in both frequency and overall satisfaction with intimacy, including sexual intimacy. There are many potential causes to a decline in intimacy, to include reduced libido (e.g. associated with fatigue, depression, grief, medications, chemotherapy, and/or radiation), increased body image insecurities, difficulties with performance and orgasm, and lack of privacy when dealing with hospitalizations and lack of alone time.
8. Stress around Work, Child care, and Finances
It is not uncommon for intense cancer treatment to necessitate the patient to resign from work, put career goals on hold, and qualify for disability status, while the partner may have to also leave work or pay for third-party caregiver and child care support. And for those without sufficient medical insurance, the cost of medications. Lengthy hospital stays, and experimental treatments will add another layer of financial burden. All these changes that need to be negotiated upset the financial balance.
9. Prioritizing Medical Treatments Over the Marriage/Partnership
The over focus on cancer may cause the couple to focus on their roles as patient and caregiver to the exclusion of their relationship as spouse/partner. Over time, this lack of nurturing the couple’s relationship may have negative consequences on the couple’s relationship satisfaction, intimacy, and foundation.
10. Emotional Changes & Individual Differences in Uncertainty, Negative Feelings, and Mortality Tolerance
Research has established that both patients and the non-patient spouse experience increases in both anxiety and depressive symptoms during the early diagnosis phase to survivorhood. Additionally, cancer brings with it enormous uncertainty and waiting around during the diagnosis, treatment, and survivorhood/prevention phases. I would argue that individual differences concerning faith, meaning of life, and meaning of death, and differences with sharing, processing, and receiving negative feelings and feedback, all have the potential to add conflict, distress, and distorted perceptions for the couple.
There are many potential internal, situational, and systemic factors that influence how the couple copes with the cancer journey from diagnosis onward. Transition theory, family systems, research, and clinical and personal experience all together suggest the complexities among the protective and risk factors, which together impact the cancer couple in unique way. Despite the challenges outlined for the cancer couple, as evidenced by positive psychology research on resilience and posttraumatic growth, it is important to remember that with every crises, there is the potential and actual realized growth and that there are protective factors which serve to buffer the trauma of cancer diagnosis, treatments, and outcomes for the couple.
Couples counseling for the cancer couple, as offered by myself, would seek to assess the caregiver, care receiver, and overall system for both protective and risk factors, and seek to build your resolve to navigate the cancer journey together. Using Gottman Couples Method techniques, with Existential and Acceptance and Commitment Therapies to address and build more intimacy, friendship, meaning, and acceptance in the face of uncertainty and crisis, I will collaborate and support your partnership on this challenging road of cancer from diagnoses to survivorhood or end of life.
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