A study on the negative perception of support groups among older breast cancer survivors was selected as a 2019 Best Original Research Paper in the journal Cancer Nursing.
Huibrie Pieters, PhD, DPhil, RN, an Associate Professor at the UCLA School of Nursing, was the primary author on the article “Perceptions of Support Groups Among Older Breast Cancer Survivors – I’ve Heard of Them but I Never Felt the Need to Go.”
“Looking at why women over 65 were not using the aromatase inhibitor prescribed by their physician after completing their primary cancer treatment, we heard from many women that they had a strong negative assumption about what goes on in support groups,” said Pieters. “The common refrain was ‘“I just don’t think it’s for me.’”
This is the first study about utilization of breast cancer support groups for women 65 and older and it brought to life what older women perceive a professional support group is like. A common misunderstanding was that groups were designed to primarily provide emotional support as opposed to providing valuable information. Many women in the study thought of support groups as a place where people shared their fears and grief, sadness was pervasive and the mood was negative. When asked what she thought happened in a support group, one woman replied “a bunch of old women sitting around crying.”
Cancer survivors transitioning from active treatment to post-treatment may lack critical support and information about their post-treatment care. During their primary cancer treatment, women usually have a strong support network of family, friends and health care providers. Once the treatment ends, family and friends return to their daily lives and patients are only seeing oncology provider once every six months.
Support groups have the potential to address the gap. They are an excellent place for women to get psychosocial support, education, practical tips, and network.
For example, explained Pieters, when women stopped taking the aromatase inhibitor because of side effects, they could get information about how to manage those effects if they were attending a support group.
“We know from previous research that women find strength in connecting and that connecting is part of the continued path to wellness,” said Pieters.
The researchers were surprised by the uniformity of the comment, “nope, this is not for me.”
“These were educated, open-minded people who had very negative assumptions that kept them from a powerful resource,” said Pieters. “They wanted to learn but didn’t want to utilize the support groups.”
“We hope that this article will help providers have a different understanding of how to communicate with and educate the women to allay some of the misinformation surrounding support groups,” said Miriam Sleven, RN, MS, OCN, co-author and cancer survivorship coordinator at Torrance Memorial Medical Center.
“It has changed how I counsel patients,” added Sleven. “I am more attentive to how patients understand support groups and strive to find resources that meet what the patient seems to need.”
Study co-authors were Emily Green, PhD, RN; Amelework Wodajo, MSN, CCRN, AGACNP-BC, and Yajuan Yang, MS, RN.