Page 65 - MBCA_FULL REPORT_FINAL_FOR_WEB

2. Emotional Support

For MBC patients, emotional support from family, friends, community, other people living with MBC,
and HCPs plays a crucial role in decreasing psychosocial distress. Research across many diseases
indicates that emotional support is strongly associated with improving health outcomes and even
extending life. Between married and single patients with MBC who feel hopeless, the single patients
are more vulnerable to depression [65] .

In surveys, MBC patients generally report receiving adequate emotional support from friends, family,
community sources, and HCPs. However, survey respondents are more likely than other MBC patients Emotional support is
to be partnered and have sufficient financial and social resources, and they may therefore be less strongly associated
isolated overall. with improving health
outcomes and even
extending life.
Chronic, debilitating illness such as MBC often leads to increasing social withdrawal [66] . Sometimes
described as “a marathon, not a sprint,” life with MBC involves challenges that last for months and
years, not days and weeks. Over time, sources of support can erode. Friends and family may not
comprehend the toll that continuous treatment takes or the inevitability of disease progression.
Even patients who feel well supported initially or in times of medical crisis may find that support from
friends, family, and community tends to wane with time and as the disease progresses [57, 61] .

Nearly half of surveyed MBC patients report a sense of stigma, of feeling like outcasts or feeling
isolated, especially within the larger social context of the breast cancer community. Symbolized
by ubiquitous pink ribbons, support for patients with early breast cancer is highly visible and
widespread [58-60] . MBC patients can feel silenced by the “triumphant, happy and healthy” rhetoric of
breast cancer organizations [67] .

Access to online peer support is important to many MBC patients who are Internet users. Surveys and
studies have reported great benefit from contact with other MBC patients [3, 58, 59] . Most MBC patients
say they highly value information and support from patients like themselves and that it helps them
to cope and to feel less alone. However, few of these patients’ HCPs recommend support groups or
other contact with peers [57] .

A cost of spending time with other MBC patients is the inevitable disease progression, which may be
perceived as “too depressing” and may heighten emotional distress to the point where the sense of
camaraderie and support is outweighed by grief and fear [68, 69] . Studies of hospital-based groups do not
tend to be nearly as positive regarding peer support as are studies of online support groups [70, 71] .

65