Unmarried patients with cancer may experience poorer outcomes such as presenting with metastatic cancer, being undertreated, and dying from their disease when compared with their married counterparts, according to a recent database study that received a fair amount of media attention (?JCO doi: 10.1200/JCO.2013.49.6489).
Fortunately, though, the oncology care team can point single individuals who feel isolated to a variety of services that may prove beneficial to their health.
Encourage Patients to Designate a Caregiver
Oncologists and other health care professionals should first encourage unmarried patients to designate a caregiver who can provide them with ongoing support, said Richard McQuellon, PhD, Professor and Director of the Psychosocial Oncology and Cancer Patient Support Programs at Wake Forest Baptist Medical Center. “For cancer patients, the diagnosis can be like going to the moon, feeling so foreign or alien, that having a companion is helpful.
“It just takes one person to make a huge difference for the cancer survivor. And if you have more than one loving, involved caregiver, that's even better.”
Marriage isn't necessarily the answer to better outcomes, said Justin Yopp, PhD, Clinical Psychologist and Assistant Professor of Psychiatry at the University of North Carolina School of Medicine and a member of the UNC Comprehensive Cancer Support Program. “It's just that you need at least one person in your life who can provide emotional and instrumental support and be an advocate in navigating the health care system,” he said, adding that in the JCO study, this person just happens to be designated by marriage.
RICHARD P. MCQUELLON, PHD
But patients who aren't married can often find the support they need with a parent, son, daughter, brother, sister, or friend.
“The message is to have someone,” he said.
Develop Comprehensive Support Services
In addition to helping identify a caregiver, providers should ideally refer patients who are feeling isolated to a variety of support services, said the experts interviewed for this article.
These services should not distinguish patients by their single or partnered status because they may have equivalent levels of distress, said Barbara L. Andersen, PhD, Professor of Psychology at The Ohio State University Comprehensive Cancer Center. Unhappily married patients, for example, may also feel isolated, and marital distress may be related to lower levels of immunity.
Oncologists should be aware that marital status is one factor among many, including lower income, less education, a history of depression, and health comorbidities, that indicate that patients may be at risk of psychological difficulties, she said.
Cancer center programs should also offer “all levels of support,” to isolated patients, said Alyson B. Moadel, PhD, Director of Psychosocial Oncology at the Montefiore Einstein Center for Cancer Care. Specifically, patients need to have access to psychologists, social workers, mental health counselors, and chaplains, as well as peer-support programs.
Another integral component to a comprehensive program is having a designated social worker or financial counselor to help patient tackle medical expenses, said Sara Toth, RN, MSN, FNPC, AOCNP, an oncology nurse practitioner who leads the survivorship program for Texas Oncology.
The comprehensive support program at Wake Forest Baptist Medical Center provides psychosocial care in both the in-patient and out-patient settings, as well as instrumental and informational support with food, money, housing, symptom management, and insurance advice, McQuellon said. And while individual counseling is integral to the program, the center also offers a stress-reduction group, a weekly meeting called Survivorship Orientation, and yoga, music therapy, and massage services.
JUSTIN YOPP, PHD
While these services are not necessarily geared toward specifically married or unmarried patients, they are directed toward people “who are often fearful, sad, suffering, and isolated and need our help,” he said. “We're trying to help people who are disconnected, isolated, lonely, and scared and who often have no companion at the medical center. They can become invisible in the world.”
Another fundamental component is having doctors, nurse practitioners, and psychologists identify patients who are going through treatment alone and encourage them to access available services, Yopp said.
A standardized process of highlighting unmarried cancer patients in the electronic medical record to ensure that a licensed therapist provides them with additional vital psychosocial interventions, connections to appropriate resources, depression and anxiety symptom management, decision-making assistance, and education on coping strategies would be valuable, Hanna D. Johnson, LMSW, of Cancer Treatment Centers of America Southeastern Regional Medical Center, said via email.
Encourage Group Counseling
The primary benefit of a support group, whether the patient is an active participant or someone just sitting in the back of the room, is knowing that other people are going through a similar situation, possibly worse, Yopp said. “At least you know it's not just you. You don't have to feel as isolated in your experiences.”
If patients aren't in a relationship or if they don't have a designated individual to take care of such things as running to the pharmacy, sitting with them during chemotherapy treatments, or cleaning their house, a support group may be especially valuable, Toth noted. “It can make a world of difference in how they recover during or after treatment.”
The leaders of the support groups, though, Andersen said, should be professional therapists, since there is only weak clinical evidence that peer-led groups are beneficial to cancer patients, whereas the “evidence for groups led by a licensed mental health professional is very positive.”
“There's great heterogeneity in terms of what peer-led counseling is like,” she said. “When group interactions are not led or directed by a licensed professional, the outcomes are more variable and, on average, less effective in actually reducing distress and enhancing patients' coping.”
BARBARA L. ANDERSEN, PHD
Offer Peer-to-Mentor Programs
For patients who aren't comfortable sharing their experiences with a group, a peer-to-mentor program may be an option, Yopp said. “This is a good model where people who have gone through cancer diagnosis and treatment are looking to give back and act as a mentor to someone currently going through the process.”
The peer-mentor relationship doesn't take the place of a marriage or partnership, but at least patients are connected with someone who knows what they're going through, he added.
Still, Andersen cautioned that peer-mentor counseling may vary in quality as in the peer-led group setting because of lack of training or quality-control mechanisms.
Yopp pointed out, though, that a fair amount of training does go into the peer-to-mentor program, called Peer Connect, at the UNC School of Medicine. Mentors need to receive training to ensure they are not involving their own emotional issues and that they can provide support for the patient's needs, he explained. “It does take infrastructure, as well as a commitment on the part of hospital leadership, but patients have found the program invaluable.”
While peer-mentor programs don't always directly address the day-to-day challenges with treatment adherence and traveling to appointments, talking with a mentor about these potential barriers to care may help point patients toward accessing relevant services, he said.
Johnson said that cancer centers should also develop relationships with caregiving and nursing agencies to provide support and assistance to patients in need—for example, those who have undergone surgery but no longer meet inpatient hospital criteria.
Connecting to local and national organizations that can specifically address patient emotional support is also valuable. The nonprofit organization Imerman Angels, for example, focuses on creating one-on-one connections between patients and survivors by cancer type.
Johnson also recommends Stupid Cancer, a national nonprofit focused on helping young adults with cancer. Matthew Zachary, the organization's CEO and Founder, said that Stupid Cancer partners with numerous cancer centers to conduct local weekend conferences and seminars featuring speakers who address issues unique to young adults.
“Inherently, young adults are usually single, just getting life together, maybe dating, and building a life for themselves. From a quality-of-life and psychosocial perspective, the number one issue patients are dealing with is isolation, and if they're single, this is compounded.”
Cancer centers should also develop partnerships with organizations that help patients with instrumental support, Johnson said, pointing to, for example, the nonprofit Cleaning for a Reason, which cleans the homes of cancer patients free of charge.
Refer Patients to Online Support
In addition to the many services offered through cancer centers and community groups, online support can also help combat isolation, Yopp noted. The American Cancer Society and CancerCare are just two of the many organizations that offer this type of service.
Stupid Cancer has 14 major Facebook groups, based on geographic regions, through which patients can interact and find peer support, Zachary noted. The organization's Facebook wall is another forum through which patients can interact and tap into social services. The nonprofit also has Twitter and Instagram accounts, produces the Stupid Cancer Show, a live global podcast airing on Mondays, and recently launched a crowd-funding campaign for Instapeer, a mobile health app helping young patients find one-on-one peer connections.
Whatever the service is, he concluded, the bottom line is, patients “need a support network so they can survive with their quality of life and dignity intact.”