Comparing provider and patient views of issues for low‐resourced breast cancer patients

Abstract

Objective: The purpose of this study was to compare provider and patient views from the same clinical settings on issues raised by low-socioeconomic status (SES) breast cancer survivors. Methods:We conducted qualitative interviews among two groups: low-SES breast cancer survivors (n = 37) and medical personnel (ie, physicians, nurses, and navigators; n = 8) who interact and serve with these patients from two geographically distinct low-resourced clinical settings. These semistructured qualitative interviews used grounded theory to identify several potential themes, such as finances, resources, and medical care. Transcripts were coded and summarized into themes. Results:We analyzed each type of interview data separately then compared patient and provider perspectives. From these qualitative interviews, we discovered that low-SES breast cancer survivors reported many unmet needs, including transportation, housing, health literacy, and language, among others. Providers reported that many of these needs are served by the extensive network of supports surrounding these patients. Conclusions:These results illustrate that low-SES breast cancer survivors have unique needs that differ from other breast cancer survivors. Many providers feel that these needs are being met, but patients have more diverse experiences. By better addressing the links between resource needs and low-SES breast cancer survivors, quality of life can be improved.

Psychosocial experiences of breast cancer survivors: a meta-review

“…nutrition and exercise) [ 45 , 54 , 80 , 81 ]. Other populations/topics explored included low SES survivors [ 39 , 82 ], sexuality and gender diverse survivors [ 83 ], infant feeding [ 84 ], healthcare experience [ 85 – 87 ], economic burden [ 71 ], parenthood [ 88 ], posttraumatic growth [ 89 ], fear of recurrence [ 90 – 92 ], adjuvant endocrine therapy persistence/management [ 93 , 94 ], and religion/spirituality [ 94 ]. Other papers had a wider scope, exploring BC survivors’ experiences and psychosocial needs.…”

“…Maintaining secrecy : Participants hid their cancer for various reasons including: not wanting their family to be depressed, the hereditary nature of cancer may mean woman are not proposed to as children are more likely to have cancer, concerns people would ask unnecessary questions and misconception of cancer being incurable exacerbating the disease condition leading to bad feelings 6. Needs: Participants expressed needs for a) financial assistance; b) information about post-treatment care such as diet, exercise, and follow-up; 3) family support; 4) counseling to provide moral support and to help think positively 9/10 (F) Enzler et al 2019 [ 82 ] USA Assess needs of low-income BC patients from patient and provider perspectives Qualitative 26 Low-income 1. Patient finances a barrier to quality care and a burden on survivors 2.…”

“…It's a disappointment [Review: [37]] We feel lost, really. There is a lot of information missing-information about knowing what to do, where to call [Paper: [60]] Survivors also noted a need for relevant information, empathy and support from health services, otherwise they felt dismissed, unsupported and alone [Reviews: [36,37]; Papers: [40,46,51,68,72,82,84,85,90,91,97,105]]. I wished that my pain at home was followed up much more [Review: [37]]…”

“…It's a county hospital, so it's an overly stressed system … They don't have resources … I was told that in a private institute, you were assigned a nutritionist, a social worker and a binder that had everything broken down … I wish we had a universal medical system and when you get cancer this is what you get [Paper: [39]]. Several primary papers highlighted the ongoing financial burden/barrier associated with BC due to healthcare cost and productivity loss [Papers: [82,99,103,105,112]], including BC survivors with lymphoedema [Paper: [71]]. I lost my job 'cause I got diagnosed with breast cancer so financially it was very difficult … I was out of work for almost a year … with the chemo… I was really sick and then I went back against the doctor's orders 'cause I needed to make money… When I came back to work that's when they expected me to resume all of the duties… full force and…I got fired… [Paper: [71]].…”

“…The transition into survivorship and loss of regular contact with the treatment team heightened many women’s fears of cancer recurrence (FCR) [Review: [ 14 ]]. FCR, recently defined as “fear, worry or concern relating to the possibility that cancer will come back or progress” (p. 3266)[ 111 ], was a common and significant issue for survivors [Reviews: [ 28 , 30 , 36 – 38 , 108 ]; Papers: [ 52 , 55 – 57 , 82 , 90 – 92 , 99 , 101 , 109 , 110 , 112 ]]. FCR focused women on the uncertainty of their future [Review: [ 5 ]].…”