The Psychosocial Needs of Underserved Breast Cancer Survivors and Perspectives of their Clinicians and Support Providers

Abstract

Purpose:

Breast cancer survivors (BrCS) experience many psychosocial difficulties following treatment, leading to an increased risk of psychological distress compared to the general population. This is especially true for underserved BrCS whose unmet supportive care needs can result in worse physical and mental health outcomes. This qualitative study compared health care and support providers’ perceptions of BrCS’ needs to survivors’ perceptions of their own needs.

Methods:

Semi-structured in-depth interviews were conducted with 25 underserved BrCS and 20 cancer survivorship stakeholders identified using purposeful sampling. Using the constant comparison method and content analysis, data were analyzed via an iterative process of coding and discussion. Data were summarized according to three intermediate and proximal themes mentioned by both stakeholders and survivors: 1) psychosocial needs of cancer survivors; 2) support; and 3) benefit finding/positive feelings about cancer. Demographic data were analyzed by calculating descriptive statistics.

Results:

There was consistency in providers’ and survivors’ perceptions of post-treatment mood changes, financial burden, familial stress, and physical changes. Providers and survivors differed in perceptions of BrCS’ preferred sources of care and support, effects of cancer treatment on body image, the effects of fear of cancer recurrence on follow-up care, and benefit finding.

Conclusions:

This study provides valuable insight into areas in which health care and support providers’ perceptions may differ from underserved BrCS’ lived experiences. Results from this study can be used to develop interventions and inform health care and support providers on how to provide high quality care to underserved BrCS.

INTRODUCTION

More than 3.5 million breast cancer survivors (BrCS) currently reside in the U.S. [1, 2]. After active treatment, BrCS undergo several transitions [3]. They must navigate the health care system while interacting less frequently with medical providers [4]; cope with physical and psychosocial late effects of cancer and treatment [5]; resume social and familial roles[6]; address financial or occupational repercussions of cancer treatment [7]; and adjust to life after treatment [4].

Psychological distress among BrCS is common [8, 9]. They are at increased risk for distress compared to the general population [10], with approximately one in five experiencing depression [11] and two out of ten experiencing anxiety after diagnosis [12]. Some research has documented increased psychological morbidity among underserved BrCS (i.e., ethnic or racial minorities or those who have socio-economic or access barriers to cancer care) [13-16], but other research has not found racial and ethnic differences [16, 17]. Compared to BrCS in the general population, less research has explored specific unmet psychosocial needs that may contribute to distress among underserved BrCS. Unmet psychosocial needs experienced by BrCS in general include fear of cancer recurrence, body image concerns, relationship problems, lack of emotional support, sexual dysfunction, and occupational concerns [9, 12, 18-22].

People who provide health care, mental health care, and other assistance to BrCS (i.e., stakeholders) should accurately understand psychosocial needs of BrCS to provide appropriate care [23]. However, it is not clear whether providers’ perceptions of BrCS’ needs are congruent with survivors’ reports of their own needs. Little research has compared the medical community’s perceptions of BrCS’ psychosocial needs with the perceptions of survivors themselves. Some research suggests healthcare providers are able to accurately identify cancer patients’ psychological concerns [24], but other research has found differences in perceptions of psychosocial needs between providers and survivors [25]. There is also research indicating healthcare providers overestimate BrCS’ psychological distress [24, 26-29] or fail to detect patients’ psychological distress [30] which can lead to detrimental outcomes. To our knowledge, no study has specifically examined convergence/divergence between underserved BrCS’ psychosocial needs and healthcare and support providers’ perceptions of those needs. This exploratory qualitative study compared medically underserved BrCS’ and healthcare and support providers’ perceptions of BrCS’ psychosocial needs and experiences. Qualitative methods enable researchers to “describe the essence of a phenomena by exploring it from the perspective of those who experienced it.” [31] This qualitative study can identify ways in which healthcare and support providers can better understand BrCS’ psychosocial needs, which would allow them to provide better care to BrCS.

METHODS

Overview

This cross-sectional qualitative study was approved by three Institutional Review Boards and followed COREQ guidelines [32, 33] (see Online Resource 1 for the COREQ checklist). Participants provided informed consent before participating in a study examining barriers and facilitators to survivorship care among BrCS prescribed endocrine therapy [13, 14]. This study was based on the National Institutes of Health Centers for Population Health and Health Disparities Model (NIHCPHHD Model) [34]. A five-member Community Advisory Board (CAB) provided assistance with drafting the interview guide and referring potential participants and organizations.

Participants

Participants were 25 underserved, hormone-receptor positive (HR+) BrCS who underwent surgery, chemotherapy or radiation; and 20 cancer survivorship stakeholders defined as people who provide health care, mental health care, and other assistance to BrCS. Survivors were recruited from a National Cancer Institute-designated comprehensive cancer center in the southeastern U.S. Survivors were considered underserved if they: 1) were a member of a historically underserved ethnic or racial minority group; 2) lacked private health insurance; 3) participated in a hospital charity care program; 4) received public health insurance; or 5) received Medicare without a supplemental insurance or prescription plan. Underserved BrCS also had to: 1) be ≥ 18 years; 2) be female; 3) be able to speak English or Spanish; 4) have been initially diagnosed with BC in stages 1 to 3 within the past five years; 5) have completed surgery, chemotherapy, and/or radiation; 6) live in the geographic area served by the Cancer Center; and 7) be able to provide informed consent. Stakeholders were recruited from community agencies and health care organizations in Tampa, Florida, and San Diego, California, and provided health care, mental health care, or assistance to BrCS. Stakeholders were eligible if they: 1) were ≥ 18 years; 2) had worked with medically underserved BrCS for at least one year; 3) were able to speak English or Spanish; and 4) were able to provide informed consent.

Procedure

Using purposeful sampling [35], participants were identified by the investigative team, the CAB, the cancer center or health system staff, and via an electronic health record review. As described elsewhere [13, 14], between August 2012 and June 2013, a research coordinator reviewed the electronic health records of BCS to identify participants who potentially met inclusion criteria. The research coordinator then attempted to contact potential participants to further screen them for inclusion in the study. For those who met inclusion criteria and were interested in participating, an in-person appointment was scheduled for the individual interview. Stakeholder participants were referred from a wide range of sources, including members of the study team and CAB and were also identified via internet searches of community organizations which assist individuals diagnosed with cancer. Stakeholder participants were contacted via email and telephone, and an in-person appointment was made to interview those who expressed interest in participating in the study. Stakeholder participants were individually interviewed between January 2012 and February 2014. Three trained female research coordinators (RCs) with master’s degrees in public health or psychology and experience in cancer research conducted interviews. Participants were not known to the RC prior to the interviews and were interviewed alone. RCs made up to five telephone or email attempts to contact potential participants who were not known to them.

RCs met potential participants in person at a private location of their choice, further explained the study, and verified study inclusion criteria for those who provided informed consent. RCs used semi-structured, in-depth interview guides to assess perspectives regarding the psychosocial needs of BrCS at each level of the NIHCPHHD Model. Using the NIHCPHHD Model, these interview guides were developed by two members of the project team with experience in qualitative research and were refined by other members of the project team and the CAB (see Online Resource 2 for questions from both interview guides). Interviews lasted between 27 and 120 minutes and were conducted in either English or Spanish. Participants completed a written survey in either English or Spanish to assess age, race, ethnicity, gender (stakeholders only), marital status (BrCS only), highest level of education, occupation, country of birth (BrCS only), and primary language. Interviews were audio recorded using a digital audio recorder and transcribed verbatim. Interviews conducted in Spanish were translated to English by bilingual staff. After 25 survivors and 20 stakeholders were interviewed, transcripts from all participants were reviewed, and it was determined that theoretical saturation had been achieved [35]. No member checking of qualitative data was done.

Data Analysis

Five study authors initially read all interview transcripts for the purposes of understanding study data and the development of a code list. The constant comparison method [36] and content analysis were used to develop a preliminary code list, based on the a priori themes of the interview guide. There were 10 a priori themes: 1) psychosocial needs of cancer survivors; 2) survivorship care details; 3) logistic/health system barriers to care; 4) facilitators to care; 5) support; 6) endocrine therapy descriptors; 7) endocrine therapy barriers; 8) endocrine therapy facilitators; 9) suggestions for change; and 10) preferences for health information. Data were then organized into these a priori code categories and re-examined for emergent themes and new codes. There were two emergent themes: 1) cancer center; and 2) benefit finding/positive feelings about cancer. The final codebook contained agreed upon code definitions. Codes were defined in the codebook with specific examples of each code. Using Atlas TI [37], data were further analyzed using the code mapping function [38]. Three of the five study authors who initially read all interview transcripts then reviewed the transcripts for a second time and coded the interview transcripts. Data described in this study were summarized according to three intermediate and proximal themes [34] mentioned by both stakeholders and survivors: 1) psychosocial needs of cancer survivors; 2) support; and 3) benefit finding/positive feelings about cancer. Demographic data were entered into an SPSS database for descriptive analysis [39].

RESULTS

Survivors

Medical records of 745 BrCS were reviewed. Of those, 69 met inclusion criteria. Thirty-three survivors could not be reached, 11 declined to participate, and 25 survivors took part in interviews. Demographic and clinical data are summarized in Table 1 [13, 14]. The mean age of BrCS was 59.92 years (SD=6.82).

Table 1.

Demographic Characteristics of Breast Cancer Survivor (n = 25) and Stakeholder (n = 20) Participants. ^*

Characteristic	Number of Participants (Survivors)	% (Survivors)	Number of Participants (Stakeholders)	% (Stakeholders)
Hispanic/Latina
No	15	60	14	70
Yes	10	40	6	30
Race
White	13	52	14	70
African American or Black	7	28	2	10
Asian	1	4	1	5
Other	4	16	3	15
Primary Language
English	16	64	17	85
Spanish	8	32	2	10
Other	1	4	1	5
Marital Status
Single	4	16
Married	8	32
Separated	11	44
Widowed	2	8
Employment
Not currently employed	11	44
Part-time	8	32
Full-time	6	24
Occupation
Social worker			2	10
Nurse or nurse practitioner			3	15
Physician			1	5
Executive leadership			6	30
Manager or coordinator			2	10
Service provider			4	20
Researcher			1	5
Unemployed/volunteer			1	5
Country of Birth
Colombia	2	8
Cuba	2	8
Dominican Republic	1	4
Germany	1	4
Honduras	1	4
Panama Canal Zone	1	4
Puerto Rico	3	12
United States	14	56

^*Table is adapted from the following publications: 1) Ustjanauskas AE, Quinn GP, Pan TM, Rivera M, Vazquez-Otero C, Ung D, Roetzheim RG, Laronga C, Johnson K, Norton M, Carrizosa C, Munoz D, Goldenstein M, Nuhaily S, Wells KJ. (2017). Facilitators of Survivorship Care Among Underserved Breast Cancer Survivors: a Qualitative Study. Journal of Cancer Education 32: 756-763.; and 2) Wells KJ, Pan TM, Vazquez-Otero C, Ung D, Ustjanauskas AE, Munoz D, Laronga C, Roetzheim RG, Goldenstein M, Carrizosa C, Nuhaily S, Johnson K, Norton M, Sims E, Quinn GP. (2016). Barriers and facilitators to endocrine therapy adherence among underserved hormone-receptor-positive breast cancer survivors: a qualitative study. Supportive Care in Cancer 24: 4123-4130.

Stakeholders

Twenty-seven stakeholders were referred and contacted by telephone and/or email. The RC was unable to establish contact with five referred stakeholders, two stakeholders did not meet inclusion criteria, and 20 stakeholders provided consent and took part in interviews. Demographic data are presented in Table 1. The mean age of stakeholders was 45.80 years (SD = 12.27).

Psychosocial and Physical Issues

Mood.

About one-third of BrCS described mood-related issues they faced. Some BrCS described experiencing depression symptoms because of BC: “since I was diagnosed with breast cancer, I was always depressed.” (survivor 14) Other survivors discussed feelings of anxiety and irritability: “…things that never bugged you, bug you now…” (survivor 20) BrCS reported taking psychotropic medications and seeking counseling to treat depression and anxiety: “…they facilitated a psychologist because you could see in my face I was depress[ed]…they helped me with the medications that kept me relaxed…” (survivor 29)

Similarly, about half of stakeholders discussed experiences with BrCS suffering depression symptoms related to their cancer diagnosis and treatment. Some described how physicians focus on physical symptoms and side effects without addressing emotional aspects of being a cancer survivor: “…we can’t seem to fix them. The doctors…continue to write them prescriptions…because they have all these pains. What they are is unable to cope mentally.” (stakeholder 5) Stakeholders noted that BrCS need more continuous emotional support services. One-third of stakeholders indicated that survivors need coping tools to manage emotions that come with a cancer diagnosis and adjustment to life as a survivor: “we need to be able to provide a way… to help families know how to help that person cope.” (stakeholder 7)

Cancer-related fear.

About one-third of BrCS expressed fear of potential cancer recurrence. These survivors felt this fear was eased by seeing a medical provider: “I was just anxious to get in because I was curious to know if all the cancer had been removed and make sure it wasn’t traveling and spreading into my body.” (survivor 21) Often these fears were experienced during post-treatment surveillance: “sometimes I get scared because…they do it, and you sit outside to see if everything is ok, and then there are times that they had me go in like 5 times, and I get worried, and say ‘this is because she sees something’ and she says ‘no, it is because…they want to be very sure.’” (survivor 29) Most stakeholders viewed BrCS’ fear as either motivating them to or preventing them from getting follow-up survivorship care: “I have ladies who will run around telling everybody ‘have you gotten a mammogram… I want to go every day if I could.’ And then there are the women who…put it off because they’re so scared that they’ll have to relive that experience.” (stakeholder 102)

Body image.

One quarter of survivors and stakeholders described body image concerns affecting BrCS. Both BrCS and stakeholders emphasized body image issues related to surgery: “you have just physically been marred…and you’re never going to be the same…There’s a loss of body parts.” (stakeholder 5) Many survivors described their scars as unattractive and disfiguring: “the area where they cut my breast, under the arm where they took out the lymph node, that area looks very, very ugly.” (survivor 29) A few survivors acknowledged the need to accept their scars to truly appreciate their survival: “I am alive and that is the important fact, right? …but I always get a bit emotional when I look at it.” (survivor 29) Some survivors discussed traumatic feelings related to the physical changes they experienced during their treatment: “I mean the loss of a breast is traumatic, but now with reconstruction your focus is to be different, you look at the whole thing as I may have lost part of my body, but I’m still surviving.” (survivor 37) Several survivors, but only one stakeholder, discussed hair loss. Many survivors described losing their hair as one of the more difficult physical changes they experienced: “people don’t know what the heck I looked like before, because this is not me. I had long hair.…having my hair so short like this…I’m just having a difficult time adjusting.” (survivor 22)

Sleep/fatigue/insomnia.

Both BrCS and stakeholders described sleep disturbances experienced by survivors (e.g., disruption in sleep patterns, extreme fatigue): “I’d come home from work, and I’d go to bed I was so tired.” (survivor 19) About one quarter of stakeholders reported BrCS experienced insomnia or fatigue that disrupted their everyday lives: “(they) may not understand why they’re so fatigued and they’re having trouble managing their household or going back to work.” (stakeholder 3)

Changes in relationships/loneliness.

About one-third of BrCS and stakeholders described that survivors experienced changes and stress related to relationships after treatment. Some BrCS described experiencing loneliness and isolation post-treatment: “…all my other friends, I never hear from them. I call them, they don’t call me back, so I said to myself, the hell with them.” (survivor 32) Survivors and stakeholders described changes in how others treat BrCS post-treatment: “I think a lot of them feel a little bit abandoned at the very end. They’ve had so much support and then…it’s kind of done and everyone is like oh great, you’re cured, you’re better.” (stakeholder 103)

Family roles.

Many stakeholders described BrCS experiencing stress related to family roles: “…they have got to provide for their families, they have to take care of other people so they…are motivated to care for themselves so they can continue to do that.” (stakeholder 2) Stakeholders also reported BrCS would often put their family’s needs ahead of their own: “…balancing the family and balancing work and providing for a family. And women generally take a back seat and make sure that everyone is cared for before them.” (stakeholder 2) Other stakeholders discussed many BrCS were concerned about being a burden to their families, particularly in Hispanic communities: “I think what gets overlooked is that it can also be a huge source of stress… They have to put a strong face. They don’t want to burden their children. They don’t want to burden their husband.” (stakeholder 6) Some BrCS also experienced stress from family roles, particularly being a burden on their family: “I am sure if I did (ask for financial help) they would probably help. But I do not like to do that. They have their own lives and own problems, own bills…” (survivor 38); “I didn’t want to burden my children, and I didn’t want to give up my freedom…I’m independent.” (survivor 30)

Work disruption and financial instability.

Half of stakeholders and several BrCS reported survivors experienced financial stress. Stakeholders discussed how BrCS often lose their jobs or are unable to return to work. Stakeholders described BrCS who were unable to pay for basic needs, such as food, rent, and transportation: “If they don’t have any income, how can they go to the grocery store to buy food for their children? …utilities…are a big concern…and…transportation.” (stakeholder 101) Stakeholders also believed financial stress may interfere with a survivor’s ability to heal quickly. “…whether they are going to be able to eat next week and whether…they are going to pay their rent, where they are going to live. And I am sure that that stress, that emotional stress and financial stress affects their ability to heal…” (stakeholder 31) BrCS described how medical bills left them with little money to pay for everyday expenses: “…bills don’t stop coming…financially…we’re behind in everything.” (survivor 20) Survivors also reported their inability to work contributed to financial insecurity, in addition to feeling a lack of independence or purpose: “You can’t work in a normal job, and all of that makes you or other people feel…inferior… you can’t work because your muscles won’t let you.” (survivor 40)

Return to “normal” life and identity.

About one quarter of BrCS and most stakeholders reported survivors and their families experienced changes in their lives and identities following a cancer diagnosis. As described by a stakeholder (103), “…there was that misconception that once you’re done with your treatments then your life just magically turns back around.” Another stakeholder (5) stated, “They all think when you come home that day that you’re gonna be like you were before cancer…and they don’t understand that you can never be that person that you were before cancer…” Some stakeholders, but few BrCS, noted it was helpful for survivors to have a renewed perspective on life and view themselves in a positive manner: “She looks at her life completely different, now she lives every day…with life, rather than being depressed and gloomy she realized she had an opportunity to live according to what she wanted to do in her life” (stakeholder 7). A few survivors did view themselves in a positive manner during survivorship: “Well actually I give thanks to God that this has left me to enjoy life, to savor life (laughs) this, both with my family, with my grandchildren. I have been feeling good as well, that difficult time has already passed” (survivor 11).

Support

Sources of support.

BrCS most commonly described support provided by family followed by support provided by friends and church or faith/spirituality. Stakeholders, in contrast, most commonly described programs or organizations as sources of support for BrCS.

Types of support.

BrCS and stakeholders discussed the provision of various types of social support to BrCS, including emotional, instrumental, and informational support. Several survivors described emotional support they received from friends and family: “Yeah, I have… friends that help me, emotionally and support, whatever she can do, my best friend will do that.” (survivor 37) Stakeholders also described emotional support provided to BrCS through counseling, support groups, spirituality, relaxation activities, and by family and friends.

Most BrCS and stakeholders also described instrumental support. BrCS most commonly described receiving instrumental support with transportation followed by finances, food, and daily activities (e.g., chores, childcare): “The social worker…some program she knows because financially they help you …It was just an application she gave me and I sent that in and then they sent you like a $250 check.” (survivor 15) Similarly, stakeholders most commonly described financial and food assistance and assistance with daily activities.

About half of survivors and most stakeholders described informational support provided to BrCS. Survivors reported they were provided informational support through seminars, classes, camps, websites with BrCS forums, medical personnel, friends or clients, brochures/pamphlets, and church. Stakeholders also described provision of informational support through classes, camps, awareness events, websites, healthcare providers, brochures/pamphlets, books, hotlines, word of mouth, and other survivors.

DISCUSSION

This study compared underserved BrCS’ and stakeholders’ perceptions of survivors’ experiences and psychosocial needs and identified similarities and key differences affecting BrCS’ psychosocial needs. The study sample primarily included African American BrCS, Latina BrCS, and BrCS who lacked health insurance or had public health insurance, along with BC survivorship stakeholders who worked or volunteered at several organizations. Consistent with previous research in general populations and diverse BrCS [9-12, 21, 25, 40-43], both stakeholders and BrCS perceived concerns regarding finances, family roles, being a burden, mood, sleep, fatigue, and insomnia as common and highly stressful to BrCS. Research suggests health professionals recognize patients’ financial and work concerns, but may not feel competent to address them [41, 44]. Studies have found some health professionals recognize that survivors experience stress regarding family roles [41], while others do not recognize this concern [25].

Similar to previous research in general populations of BrCS in Australia [25, 42] BrCS described their loneliness and isolation after treatment. Stakeholders reported friends and family of cancer patients tend to decrease or withdraw their support after treatment completion, which is similar to previous research among a general sample of BrCS indicating that support from friends and family decreases after diagnosis [45]. Stakeholders and survivors had similar perceptions of the variety and importance of support provided to BrCS. Stakeholders more frequently discussed programs or organizations, while survivors more frequently discussed family and friends as sources of support.

Stakeholders and BrCS differed on their perceptions of several aspects of the cancer survivorship experience, such as body image, a concern experienced by many BrCS with various backgrounds [17, 25, 46-50]. The main concerns of BrCS interviewed were scars and hair loss, but only one stakeholder mentioned hair loss as a concern. It is not clear whether stakeholders’ lack of discussion of hair loss represents less awareness of this issue or the fact that this concern was not one that the stakeholders commonly assessed or addressed in their professional role. In previous studies with African American and Latina BrCS, hair loss was noted as a common concern [47, 48, 51].

Similar to previous studies among general populations of BrCS, African American BrCS, Latina BrCS, and health care providers [22, 25, 40, 42, 47, 49, 52, 53], in the current study both survivors and stakeholders indicated fear of cancer recurrence was a major concern. Previous research indicates that Latina BrCS with lower levels of acculturation had the highest fear of recurrence, when compared to White and African American BrCS [52, 53]. In the current study, BrCS and stakeholders had different perceptions of how this fear affected follow-up care. Consistent with prior research [21, 54, 55], BrCS and stakeholders described fear of recurrence as a motivator to obtain survivorship care among some survivors. Stakeholders also noted fear of cancer recurrence was a barrier to survivorship care, which has been noted in a study of younger BrCS recruited in Australia [21].

Similar to our study, Jefford et al. [42] indicated that a concern of Australian BrCS was that family and friends perceived they should “get back to normal” which is similar to the perspectives of both stakeholders and BrCS in our study. Furthermore, the findings from our study reflect results from other qualitative studies among “middle-class” educated, mostly service worker BrCS in Belgium [44] and BrCS from a general population sample whose experiences reflect Frank’s narratives of illness [56]. In these studies, BrCS reported three different patterns of disability from breast cancer: 1) complete and sometimes permanent disruption of their lives and work (i.e., chaos); 2) a brief episode of disability followed by return to work and other life activities (i.e., restitution); and 3) having a period of time away from work to discover new meaning in life (i.e., quest) [44, 56]. In our current study, stakeholders more frequently mentioned BrCS discovering new meaning in life or a “quest” narrative following breast cancer treatment; however, it is not clear if this narrative is as common among BrCS with lower socioeconomic status. Previous research has found that BrCS with lower levels of education in Sweden are more likely to report work-related disability; thus, BrCS with fewer resources may be more likely to face more permanent disruption of their lives and work from BC diagnosis and treatment. On the other hand, in previous studies African American and Latina BrCS reported becoming role models of people who had survived BC in their community [49, 57]. The different perspectives found in our and previous studies suggest that providers may need to re-assess BrCS’ psychosocial concerns during the transition from treatment to post-treatment survivorship as BrCS may continue to experience distress and may need additional support.

Finally, similar to previous research suggesting physicians and rehabilitation counselors perceive patients’ need for counseling to be higher than patients themselves do [58], stakeholders believed there were unmet psychosocial needs of BrCS and that BrCS needed additional assistance to cope with the diagnosis and treatment. The BrCS in this study did not mention a lack of services, perhaps because as found in a previous studies of African American and Latina BrCS [43, 47, 49, 57, 59, 60], they looked to family, friends, their church, and faith/spirituality as their main source of social support. Previous studies examining support actually provided to underserved BrCS are conflicting and may depend on the population and setting being studied. For example, one study found that BrCS of color and BrCS with lower education reported having less helpful emotional support from friends than Caucasian BrCS and BrCS with more education [45], and another study [59] found that African American BrCS had low access to support services during treatment. Some studies have found that African American BrCS preferred to attend support groups specifically for African American cancer survivors or be connected to other African American BrCS [57, 59, 60]. Multiple studies of African American and Latina BrCS indicated that they faced stigma, feared stigma, or had concerns regarding sharing their BC diagnosis with others, [43, 47, 49, 57, 59] and that BC stigma reduced their quality of life [61]. On the other hand, Latina BrCS reported obtaining more instrumental and informational support from family members, when compared to non-Latina white BrCS [62]. In a study of support group use among Latina BrCS, only one-third reported attending support groups, primarily because they did not need the support, received enough support, or were unaware of support groups [63]. Latina BrCS with high spiritual well-being were also unlikely to attend support groups, indicating the importance of their faith/spirituality in providing support [63].

Findings from this study have implications for survivorship care and future interventions. First, many of the concerns of underserved BrCS who participated in this study are similar to general populations as well as other underserved BrCSs who have participated in other studies conducted in the United States, Canada, and Europe. The results of our study and others point to the fact that some concerns, such as fear of recurrence, stigma, and hair loss, may be particularly salient in underserved BrCS, but that each ethnic, racial, and cultural group may experience them differently. Thus, it can be difficult for healthcare and service providers to fully understand underserved survivors’ experiences and preferences, and interventions should be specifically targeted for particular cultural, racial, or ethnic groups or tailored based on other characteristics individual survivors may have (i.e., high fear of recurrence, low support from family). Survivors in this study and others reported experiencing distress, loneliness, and isolation, yet more commonly described receiving informal emotional support (e.g., family, friends, faith/spirituality) compared to formal emotional support (e.g., counseling, support groups). In general, health care and support providers and future interventions delivered to underserved survivors should facilitate establishment and maintenance of informal social support networks and spiritual/faith-based support, while continuing to highlight formal support options. However, when facilitating support, it should be recognized that our study and other studies have found that there is stigma related to BC among some cultures which may prevent BrCS from obtaining support; thus, BrCS may need assistance with determining to whom they should disclose their BC diagnosis in order to obtain adequate support. Also, our study found that care providers may overestimate underserved survivors’ perceptions of a renewed perspective after treatment; thus, interventions and providers should assess individual survivors’ perceptions on these issues as BrCS transition to post-treatment survivorship care.

While findings are novel, the study does have limitations. First, while BrCS were diverse, all were recruited from one comprehensive cancer center in the southeastern U.S., where they continued to receive survivorship care. Thus, the BrCS may differ from individuals receiving survivorship care outside of a comprehensive cancer center in the southeastern U.S. Stakeholders were recruited in two locations in the U.S. Second, we did not use random sampling to obtain the sample of participants in the study. Instead, we used purposeful sampling, a sampling approach commonly used in qualitative research to select participants who are especially knowledgeable about the phenomenon being studied. While this technique allowed us to obtain a wide range of BrCS and stakeholder perspectives, it may have introduced biases into the study. Third, although BrCS participants would have had access to services available to all patients at the cancer center (i.e., social work, support groups) and to community members with cancer, we did not assess support services that they knew about but did not use for various reasons. Thus, we are unable to draw conclusions regarding whether gaps in care were related to difficulties using existing support services. Fourth, this exploratory study used qualitative methods which did not allow for the testing of specific hypotheses. Finally, while we did assess the occupation of stakeholder participants and the services provided by the organizations at which they worked or volunteered, we did not formally assess their roles within the organization. This information may have provided better insight into the perspectives of each stakeholder.

In conclusion, this study found that while underserved BrCS and service providers had similar perceptions regarding many psychosocial concerns and the importance of social support, they differed in perceptions of BrCS’ fear of cancer recurrence, body image concerns, sources of support, and benefit finding. Findings demonstrate the importance of incorporating perspectives of both BrCS and stakeholders in development of interventions designed to meet psychosocial needs of underserved BrCS. Future research should focus on continuing to improve communication around psychosocial needs between BrCS and their health care and support providers.

Figure 1.

Summary of Results