Cancer in the Family

Cancer is a disease for the entire family to survive, whether in terms of emotional hurt or the provision of concrete physical care. And alongside partners, spouses, and friends, many survivors care for young children. Kathryn E. Weaver, PhD, of Wake Forest University School of Medicine and her fellow researchers estimate that 1.58 million US cancer survivors live with minor children, totaling 2.85 million young people in all (Cancer. 2010; 116:4395-4401). Many other cancer survivors are themselves young children, leaving parents balancing complicated medical care decisions with a host of other family responsibilities. A number of papers and presentations at the Cancer Survivorship Research Conference addressed the role of the family in cancer survivorship.

Long-term care needs often taxing for caregivers
Although the diagnosis of cancer can be psychologically painful, it can also be a moment for personal growth and transformation. Research has shown that family caregivers can also experience such growth in the time after diagnosis—but what about over the long term? The University of Miami’s Youngmee Kim, PhD, and fellow researchers found that caregivers’ personal growth experiences may peak during the caregiving experience and the period immediately thereafter. The study included 381 caregivers, polled at approximately 2 years and again at 5 years after diagnosis. Caregivers experienced a decrease in appreciating life, and women in particular were less likely to accept what had happened. Those who were still actively providing care after 5 years reported being less close with their families.

Kim speculated that many caregivers energetically respond to the initial diagnosis, unaware that cancer may be a chronic illness often requiring longterm care. “Some family members might have dedicated their time and effort when they heard the C word in the family for the first time and observed their loved one going through cancer treatment, with the idea and hope it would be a temporary 24/7 dedication,” Kim noted. “When it gets extended without much notice or education in advance, even family members or close friends would feel resentful about their role as a caregiver, being exhausted and distant to their family.” In other cases, Kim suggested that families may be going through an anticipatory grief process.

In a related study led by Rachel L. Spillers, BS, researchers found that race plays a significant role in the support provided to caregivers by significant others. Level of support from significant others among non-white caregivers was associated with poorer mental functioning and better physical functioning.

“Perhaps non-white spousal caregivers perceived the high level of social support they received from their significant other to be inadequate, thus creating an adverse effect on their own mental health,” writes Spillers. “This could be explained by the possible cultural differences among non-whites (ie, African American, Asian, Hispanic, etc) and whites with regard to their perception of adequate social support.”

Another study identified caregivers’ need for education and assistance. Ostomy care is a challenge for patients and caregivers alike. This challenge is heightened by comorbidities that come with aging. Kaiser Permanente’s Mark C. Hornbrook, PhD, and other researchers looked into how survivorship care plans can help address these difficulties. Sixtyfour pairs of survivors with ostomies and their caregivers participated in this ethnographic study, which em ployed interviews and participant observation meth odologies. Re sults were thematically coded and analyzed.

Researchers found that caregivers with health problems had “limited...ability to assist with many aspects of ostomy care,” whereas caregivers with “low health literacy demonstrated poor problem recognition, persistence with obsolete care regimens, and lower likelihood of asking for help.” The study also found that survivors only received unpaid ostomy care assistance from spouses, and that “obese patients and those with hernias needed more help with wafer placement.” Researchers concluded that survivorship care plans should be particularly attuned to colorectal cancer survivors without a spousal caregiver, and pay special attention to factors such as obesity, hernias, family health, and changes in living situation.

Another team of researchers led by Kaiser Permanente’s Carmit K. McMullen, PhD, studied the factors that contribute to caregiver advocacy. Caregivers who view “ostomy care as part of the marriage commitment” were more likely to advocate on behalf of the survivor’s needs, “which may facilitate prompt detection and treatment of disability-related complications.” Other factors include the survivor’s desire to receive such assistance, a clear understanding of roles, and the caregiver’s acceptance of the ostomy and its implications. Poor family relationships can, however, pose barriers to caregiver advocacy. Researchers recommend increased support for caregivers.

Psychosocial needs of survivors often overlooked
Grace J. Yoo, PhD, of San Francisco State University and her fellow researchers studied the social support for racial and ethnic minority breast cancer survivors. Researchers used in-depth qualitative interviews and quantitative survey measures to analyze the posttreatment experience of 176 survivors, in - cluding 45 African Americans, 52 Asian/Pacific Islander Americans, 54 white Americans, and 25 Latino Am - ericans. Survivors of all races were able to access the same levels of information and tangible support, but African Americans reported the greatest level of spiritual support. Researchers concluded that providers should pay more attention to racial and ethnic variation in survivorship strategies, some of which may be religious.

“Traditionally, social support has been measured along the domains of informational, tangible, and emotional types of support,” writes Yoo. “There has been a lack of studies on the need and access to spiritual support posttreatment.”

Ofelia O. Villero and Nancy Burke, PhD, of the University of Cali fornia San Francisco’s Helen Diller Family Comprehensive Cancer Center ex - plored a similar issue, looking at the role of religion among Filipino-American breast cancer survivors. Researchers conducted 72 in-depth interviews and observed 63 support groups. They found that religion played a major role in recovery for Filipino-American survivors. Family and friends are also critical, because they are often asked to pray for survivors or form prayer groups.

“Our study hopes to contribute to the development of culturally resonant healthcare and sustainable support services for this sector of the population through an analysis of how Filipino- American women perceive and deal with breast cancer in the context of their religious beliefs and practices.”

Villero suggests that educational campaigns reach out to informal religious groups, and that the particulars of Filipino-American culture be provided for when designing support services.

Daniel Dohan, PhD, of the University of San Francisco’s Institute for Health Policy Studies and fellow researchers discovered that low-income and medically underserved cancer survivors came to identify other members of a support group as “family.” Participants were also more oriented to fighting the disease than adjusting to a life of survival. Researchers suggest that this orientation “reflected the social circumstances of cancer and survivorship among the underserved, especially survivors’ general social isolation and the lack of role models within the community of survivors who had coped with the psychosocial impact of cancer.” This study reveals how the function and effect of support groups differ among various patient populations.

Patients with orbitofacial disfigurement confront a number of social challenges. Alessandro Bonanno, PhD, a sociologist at Sam Houston State University, and Bita Esmaeli, MD, of The M. D. Anderson Cancer Center, conducted in-depth interviews with 14 survivors—including of adenoid cystic carcinoma of lacrimal gland, squamous cell carcinoma of conjunctiva/eyelid, conjunctival melanoma, eyelid sebaceous gland carcinoma, transitional cell carcinoma of lacrimal sac, adenocarcinoma of orbit, neuroendocrine carcinoma of orbit, and basal cell carcinoma of eyelid—and 14 family members. Patients do not experience stigmatization among friends and family. But “unsolicited attention” from acquaintances or strang ers is stigmatizing, whereas “benign neglect” in a large group is not. Sympathy has different results depending on what is expressed and the size of the group.

“Patients and their families are not adequately informed about the circumstances generating stigma,” writes Bonanno. “If they are informed and if caregivers are knowledgeable about the events and conditions engendering stigma, the overall well-being of survivors and their families will be significantly improved.”

Survivors of prostate cancer must often live with erectile dysfunction commonly caused by prostatectomy. Men and their partners experience associated difficulties in sexual functioning that are rarely addressed in their medical ap - pointments. This, along with their own discomfort with discussing the problem, makes them less likely to seek help. Daniela Wittmann, MSW, and other researchers from the University of Michigan, Ann Arbor’s Depart ment of Urology undertook a 1-day retreat to facilitate increased communication and sexual recovery.

“It didn’t take me long to realize that if you want to work with men who want to work on their sexual capacity, you have to work with their partners as well,” says Wittmann. “The female partners are mostly postmenopausal and have their own sexual issues and concerns, so working on it together was the most powerful way to do it. Most people don’t know much about how to help their sexual functioning when they start having problems due to an illness such as cancer.”

Twenty-six couples attended the retreat, filling out satisfaction questionnaires directly after the retreat, and a survey on sexual health before the retreat and then at 3 and 6 months after. The retreat got high marks for the information and peer support provided. Pre - liminary results (at 3 months) show increased knowledge about dealing with the side effects of a prostatectomy, awareness of sexual issues common after age 50, and confidence in speaking to their partner about sexual issues. Twenty couples responded at baseline and 3 months. There was, however, no in crease in the frequency of sexual activity. But Wittmann suggests that a quantitative approach may not be the best when it comes to sexual activity.

“We always think in terms of increasing something,” she says. “But maybe it’s enough that increased knowledge and more open communication lead to more intimacy within the couples. Maybe their sex is better even if they’re not having more of it. So I don’t know if ‘no increase in the frequency of sexual activity’ is really a negative finding.”

Researchers suggest that a future study should test a larger sample size if the positive effects continue at 6 months.

Importance of family long term
Families have a particularly important role to play in the recovery of children with cancer, taking the lead not only in medical decision-making but also in providing information to young survivors. Amii Corbisiero, PhD, of The Research Institute at Nationwide Children’s Hospital’s Center for Bio - behavioral Health, and her fellow researchers recruited 110 of 125 eligible families of children aged 5 to 17 years, 1 to 2 months after diagnosis. Although physicians reported a risk of 25% to 32% for late effects in physical, cognitive, and qualify-of-life measures, parents estimated risks to be at 19% to 25%. “Although parents agreed that talking to children about late effects was somewhat to very important,” the study found, “they had discussed this only on occasion. Parents had more discussions with older children.”

“Understandably, with all the other information parents have to process early in their child’s treatment, the possibility of late effects are often secondary to the immediate urgency of starting treatment and getting their child into remission,” writes Corbisiero. “The risk for long-term side effects or late effects is something that can easily get pushed aside to think about later, or they plan to deal with it when or if it becomes a problem down the road. Quite simply, parents want and need to be optimistic about their child’s future; they hope for the best.”

Researchers recommend a more “prospective approach to family education,” so that families and survivors are better able to navigate the years of long-term follow-up.

“It might not be the highest priority for healthcare providers or families soon after diagnosis, but we have the most opportunities for education and regular contact with families during treatment,” he writes. “Written materials, ongoing conversations initiated by the child’s nurses and physicians, as well as family educational seminars should be available early on and throughout treatment and survivorship.”