Expectations and reality: Perceptions of support among African American breast cancer survivors

Abstract

Objective

The experience of an illness such as breast cancer is not a static event. Just as physiological needs change as a patient transitions through diagnosis, treatment, to long-term survivorship, so too will their needs for social support. We applied a transitions theory framework to explore how African American women with breast cancer conceptualized and experienced support along their breast cancer journey.

Design

We recruited 16 African American women with breast cancer from a regional cancer center in South Carolina to complete qualitative, semi-structured interviews. We iteratively examined verbatim transcripts using thematic analysis.

Results

Three core themes emerged: “I guess she was supposed to”: When support meets patient expectations; “I wasn’t expecting that and that just made me feel so good”: When reality exceeds expectations; and “Don’t try to make an invalid out of me”: When support given wasn’t what was desired. Survivors shared how their family, friends and clergy met their needs for emotional (e.g., prayer, sharing affirmations about God) and instrumental support (e.g., cooking meals, house cleaning). They emphasized how receiving emotional support from their healthcare providers was a pleasant surprise. However, survivors also described unexpected disappointments when family members offered support that was un-needed or un-desired.

Conclusions

Applying transitions theory, we found that social support is a process of bidirectional negotiation where African American women with breast cancer perceive support as helpful and acceptable depending on who offers support, what type of support is offered, and when it is offered. Members of their social support network (e.g., family, friends, providers) should periodically assess the survivor’s evolving needs to ensure the social support harmonizes with the needs and expectations of the survivor.

Introduction

Breast cancer is the most prevalent cancer among women in the United States (US) resulting in over 40,000 deaths each year (American Cancer Society 2017). Currently more than 3.1 million US women have a history of invasive breast cancer and almost 252,710 women are expected to be diagnosed this year (DeSantis et al. 2014, American Cancer Society 2017). The breast cancer incidence rate for non-Hispanic White women in the US is 128.3 per 100,000; African American women have lower incidence at 125.1 per 100,000. However, African American women experience significant disparities related to breast cancer incidence and mortality rates. While White women have the highest incidence of breast cancer, African American women have the highest mortality at every age (Howlader et al. 2015), with a mortality rate of 30.0 per 100,000, as compared to 21.1 per 100,000 for non-Hispanic White women is (American Cancer Society, 2017). The complex interplay of potential Black-White differences in breast cancer biology, access to care, treatment responses and regimens, and behavioral and psychosocial factors (e.g. social support) contribute to these racial disparities (Wheeler, Reeder-Hayes, Carey 2013). Appropriate and tailored social support for African American women diagnosed with breast cancer is likely to enhance resiliency as patients transition through treatment to surviorship, and may mitigate the disparities suffered by this vulnerable population (Wells et al. 2014, Stewart and Yuen 2011).

Breast cancer researchers have long investigated social support as a determinant of biopsychosocial wellness for White, middle-class patients navigating cancer (Helgeson and Cohen 1996, Carlsson and Hamrin 1994). Previous breast cancer support research has focused on support conceptualized as emotional, instrumental and informational (Hamilton and Sandelowski 2004, Helgeson and Cohen 1996, Lewis et al. 2012, House and Kahn 1985, Tilden 1985). Emotional support describes listening, confiding and being present during the cancer experience. Instrumental support involves practical aid with the day-to-day demands of living with cancer such as changing dressings and rehabilitation activities. Informational support addresses the educational needs of prognosis, treatment or psychosocial adjustment. However, only recently has research focused on African American cancer survivors’ experiences of support, using a sociocultural lens (Hamilton and Sandelowski 2004). For example, cancer treatment side effects and cancer-associated stigma within the African American community have been identified as unique factors negatively influencing patient support-seeking behavior (Hamilton et al. 2010). Many African American survivors rely upon prayer and spiritual support from God, religious communities, family, friends and even health care personnel (Hamilton et al. 2010, Roff et al. 2009). Finally, the health care provider’s degree of emotional support, respect and honesty, as well as shared decision making have been found to be important determinants in African American cancer patients’ recovery (Song, Hamilton, and Moore 2011). Unfortunately, African American (vs. White) breast cancer survivors experience greater declines in perceived social support over time (Thompson et al. 2013). Therefore, understanding how they perceive their desire for different types of social support from members of their social network (e.g., healthcare providers, family) at different times along their cancer trajectory is critical to ensuring that their evolving support needs are addressed (Arora et al. 2007).

Theoretical Framework

The experience of an illness such as breast cancer is not a static event. Patients may experience a linear trajectory of diagnosis, treatment, and survivorship; more likely, they will experience unexpected setbacks such as treatment side effects, sub-optimal medication response, metastasis or tumor recurrence, or lingering physical effects of treatment. Just as physiological needs change as a patient transitions through diagnosis, treatment, and recovery, so too will their need for various types (e.g., instrumental, spiritual, etc.) of support. Recognizing varying support needs, we used the middle range theory of transitions as a framework to better understand how African American women survivors of breast cancer conceptualized and experienced support as related to their illness (Meleis et al. 2000).

Meleis and colleagues describe transitions as containing complex and iterative properties (Meleis et al. 2000). These properties include awareness (e.g., the daily impact of breast cancer symptoms), engagement (e.g., desiring independence in daily activities), change and difference (e.g., the need for more instrumental support when fatigued from chemotherapy treatments), time span (e.g., the ongoing nature of breast cancer follow-up care), and critical events (e.g., unexpected setbacks such as recurrence). Individuals experiencing health-illness transitions rarely experience them in isolation, but rather in context with family, friends, and various healthcare providers, including nurses, social workers, physicians, and pharmacists. These relationships may affect how African American women respond and adapt to the complex transitions associated with breast cancer. Understanding how patients experience support within the context of these intersecting properties may better prepare patients, families, friends, and healthcare providers to facilitate healthy transitions in a fluid and responsive fashion. Thus, the purpose of this qualitative descriptive study was to examine how African American breast cancer survivors understood the concept of support, and explore their recollected experiences with and perceptions of support along their journey through diagnosis, treatment, and survivorship.

Methods

Setting and Participant Recruitment

Aligned with best practices in research engaging racial and ethnic populations (Fryer et. al 2016), our diverse (e.g., racially concordant interviewers), multidisciplinary team possessed previous experience with qualitative research, strong interpersonal skills, and cultural sensitivity toward our participants (Table 1). We conducted this research in South Carolina, where mortality from breast cancer is more than 60% higher among African American women as compared to White women, given their respected incidence rates (Hébert et al. 2009). The original study and an amendment for this follow-up investigation were approved by the primary hospital review board and the collaborating university. All participants in the original study signed research consents, authorizations for chart review and, with few exceptions, agreements to be contacted for future studies.

Table 1.

Personal and Professional Characteristics of the Research Team

Member Initials	Race/Ethnicity & Gender	Occupation	Credentials (Discipline(s))	Experience & Training	Study Role
TMF	African American Female	Assistant Professor	PhD, MSW (Sociology, Social Work, Public Health)	Expertise in breast cancer and health disparities; previous experience conducting and coding qualitative interviews	Data coding, analysis and interpretation
RDE	Caucasian Female	Nurse Practitioner, Assistant Professor	PhD, RN, CPNP-PC (Nursing: Pediatric)	Expertise in qualitative research methods and health disparities; Extensive experience leading, conducting and teaching qualitative research	Data coding, analysis and interpretation
JQ	African American Female	Nurse Practitioner, Assistant Professor	DNP, APRN, FNP-BC, ACNP-BC (Nursing: Primary & acute care)	Previous experience conducting qualitative interviews and focus groups with African Americans	Interviewer, data coding
KWP	Caucasian Male	Associate Clinical Professor	MD, LMFT (Psychology, Medicine)	Expertise in components of biopsychosocial-spiritual health; licensed medical family therapist; previous experience conducting qualitative research with African Americans	Data analysis and interpretation
PH	Caucasian Female	Doctoral student	MPH, BSN, RN (Nursing, Public Health)	Previous experience in conducting qualitative research; extensive training in qualitative research methods	Data analysis and interpretation
SPH	Caucasian Female	Research Professor	PhD, RN (Nursing: Psychiatric mental health)	Expertise in psycho-oncology and breast cancer among African Americans; extensive training in communication skills; previous experience conducting qualitative research	Principal investigator; Interviewer, data analysis and interpretation
CW	African American Female	Project Coordinator, Doctoral student	BS, MA (Biology; Health Service Management)	Previous experience conducting qualitative interviews and focus groups with African Americans	Interviewer

Participants interviewed were recruited from the control arm (n = 93) of a previously conducted, National Institutes of Health funded study, “Sisters Tell Others and Revive Yourself (STORY). STORY was a randomized controlled trial designed to test the effectiveness of a teleconference-based therapeutic group for African American women with breast cancer in the southeastern US (Heiney et al. 2012). Of the original 93 individuals, 92 consented to re-contact. The PI (SPH) conducted medical chart reviews of these individuals, identifying 38 participants meeting inclusion criteria: 1) had a confirmed diagnosis of breast cancer and vital status; 2) resided in the southeastern US; 3) received radiation or chemotherapy; 4) received treatment at a specific regional cancer center; and 5) had no evidence of a new cancer.

We used a staged sampling and recruitment process in which we mailed invitation letters to participants and conducted follow-up telephone calls to determine interest in the study. The letter included the STORY project logo and a phone number to call if the participant did not want us to call her about the current study. None of the participants requested “no call”. Participants were scheduled for the consent and interview appointment. As each “batch” of participants was contacted, a subsequent mailing occurred. As we accrued participants, we checked medical and STORY data to assure that we had a heterogeneous mix of participants across different levels of income, education, treatment location and treatment protocols. By the end of the sixteenth interview, the study team determined that thematic saturation had been reached (Morse 2015) and recruitment was suspended.

Data Collection Procedures

Two African American women conducted 14 of the 16 the open-ended, semi-structured interviews with the participants between December 2011 and August 2012. At the time of study, one interviewer had a Doctorate of Nursing Practice and 15 years of clinical nursing experience. The other interviewer had over five years of experience as a project coordinator for community-based research studies involving African American participants and was a recruiter for the original study. Thus, she may have had previous, but limited contact with current participants, as all were recruited from the control group. The PI of the original study (SPH), who had over 25 years of psychosocial oncology practice experience with African American patients, conducted the two remaining interviews. To facilitate participant comfort and privacy, each woman decided on the location of her interview. All women chose to be interviewed in their home with the exception of one who requested to be interviewed in a private room at the University. One participant elected to be interviewed along with her daughter.

Interviews began with a global question; probes were used to stimulate further discussion on what they understood support to mean and how that understanding might change during their breast cancer treatment experience (Table 2). Further questions explored how support or the lack thereof affected their decision making and expectations during and following treatment. The interviewers encouraged participants to share their perspectives and feelings, and continue to talk until they felt they reached the end of their thoughts on the particular matter. In order to encourage reflexivity and increase rigor, at the end of each interview the interviewers wrote field notes about the location/setting, participant appearance, and participant behaviors, as well as self-reflective notes regarding the experience (Patton 2015). Each digitally, audio-recorded interview lasted between 11 and 77 minutes. A professional transcription company transcribed the audio-data. Subsequently, the PI compared selected sections of the transcripts to the original recordings to assure they represented what the participants said as accurately as possible. A full description of methods used can be found elsewhere (Heiney et al., 2017).

Table 2.

Interview Questions

Global questions

Sample probe questions related to support

I want to talk to you about your experience with cancer treatment. You say whatever is in your heart and seems right to you. There are no right or wrong answers. Whatever you feel is right is the correct answer. I want to learn about what happened as you heard about your treatment options and about how you made choices about treatment.

What kind of support did you receive from your doctor to help you get through treatment? What kind of information did nurses give you about the cancer treatment? What kind of support or advice did you get from nurses to help you through your treatment? What information or support did you receive from other professionals? (ex., social worker, nurse navigator, radiation therapist, etc) How did the information or support (from the person named above) gave you make a difference in your treatment experience? Tell me about the involvement of other people in your treatment decision. Tell me about your support system or lack of support that you had when making decisions about your treatment.

Data Analysis

We used transitions theory (Meleis et al. 2000) to guide and describe the analysis of the data. Using the six-step thematic analysis approach (Braun and Clarke 2006, Clarke and Braun 2013), we distributed the verbatim transcripts to three research team members (TMF, RDE, JQ) for independent reading so they could become familiarized with the content of the interviews. In order to encourage reflexivity during the analysis phase, we then met as a team to discuss our initial thoughts, assumptions, and understandings of key concepts related to support. Next, two team members (RDE & JQ) independently conducted initial coding of each transcript and began searching for themes. These two team members then met to compare and contrast the individually identified codes and themes, and pondered the relationship between themes and discussed how well the themes reflected the stories about support as told by these breast cancer survivors. After subsequent and iterative re-readings of the data, the refined themes were then brought back to the entire research team for final discussion on the relationship of the themes to the transitions theoretical framework, confirmation, naming of themes, and final write-up (Meleis et al. 2000, Braun and Clarke 2006, Clarke and Braun 2013). In reporting the results, all names used are pseudonyms.

Results

Of the17 women eligible for our study, one declined as she did not want to revisit the difficult period of her treatment, leaving a total of 16 participants. On average, the participants were 60 years old (range 37–72) and 5 years post breast cancer diagnosis (range 4–8) (Table 3). More than half of the women had obtained a two-year college degree or less (n=12) and reported incomes of under $30,000 per year (n=9). Nine of the participants were married.

Table 3.

Selected Sociodemographic Variables of Sample

Characteristics	N = 16
Age in years, mean ± SD (range)	59.88 ±8.85 (37 – 42)
Years since diagnosis, mean ± SD (range)	5.41± 1.24 (3.9 – 7.6)
Education, n (%)
Some high school	3 (18.8)
High school graduate	4 (25)
Two-year degree	5 (31.3)
Four-year degree	2 (12.5)
Masters	2 (12.5)
Incomea n (%)
Less than $10,000	1 (6.3)
$10,000 – $19,999	6 (37.5)
$20,000 – $29,999	2 (12.5)
$30,000 – $39,999	1 (6.3)
$40,000 +	2 (12.5)
Marital Status, n (%)
Married	9 (56.3)
Single	5 (31.3)
Divorced	1 (6.3)
Widowed	1 (6.3)

^a= Four women preferred not to answer.

In analyzing the transcripts of the interviews, we identified three core themes related to the experience of support by African American women breast cancer survivors: “I guess she was supposed to”: When support meets patient expectations; “I wasn’t expecting that and that just made me feel so good”: When reality exceeds expectations; and “Don’t try to make an invalid out of me”: When support given wasn’t what was desired. These broad categories, along with sub-categories and raw data themes, are presented in Table 4. For clarity, we removed irrelevant words or phrases such as “you know” for readability from the selected quotes.

Table 4.

Overview of themes and sub-categories related to middle range theory of transitions framework (Meleis et al. 2000)

Main themes	Number of responses in sub-category	Sub-categories	Relevant framework properties	Raw data themes
“I guess she was supposed to”: When support meets expectations	8	Role of healthcare providers	Awareness Engagement	Anticipatory guidance on medication side effects, physical changes Referral to support groups Answers to patient’s questions “Pep talks” Credibility
	13	Role of family members and friends	Awareness Engagement	Encouragement to seek medical intervention Reassurance that the treatment plan is good Facilitating logistics of treatment plan (e.g., transportation to clinic) Instrumental support (e.g., folding clothes, preparing meals, helping with bath) Being physically present
	5	Role of clergy/spiritual leaders	Awareness Engagement	Spiritual support/advice Reassurance that the treatment plan is good Affirming that “God has a plan” Prayer
“I wasn’t expecting that and that just made me feel so good”: When support exceeds expectations.	12	Support from unexpected people	Awareness Engagement	Relating personal information/family history to engender connection Physical connectivity (e.g., hugs) Establishment of a “friend” relationship
“Don’t try to make me an invalid”: When support mismatches expectations	11	Lack of flexibility in how support needs change over time	Change and difference Time span Critical events	Desire for privacy Not wanting support when feeling better Need for particular types of support
	8	Need to protect others’ feelings	Awareness Engagement Change and difference Time span Critical events	Must be strong for others Keep painful information to yourself, don’t burden others Need to give support to vulnerable family members Accepting support when not needed or wanted
	13	Feelings of loss	Awareness Change and difference Critical events	Loss of relationships after “cure” Changes in family dynamics Unmet promises and expectations
	6	Expressing doubt in decision making/treatment plan	Awareness Critical events	Suggesting that decision making is wrong Suggesting alternative treatment plans

“I guess she was supposed to”: When support meets patient expectations

The unifying concept for this theme was that of role expectations. The participants had very clear conceptualizations of what the role of each person in their breast cancer experience should be, and the types of support they should provide. When each person gave support that was expected from the role they played in the participant’s life, the support was perceived as positive and helpful. For the participant’s healthcare providers, including physicians, nurses, social workers, and pharmacists, the support given was perceived to be a part of their job description; as Lenora, a 61 year old survivor related: “I got answers for everything just about that I needed to know….I guess she (the nurse) was supposed to.” Thus, the participants conceptualized support from the healthcare providers to mean the provision of information and advice related to their illness and management of treatment side effects. The women often referred to healthcare providers giving them targeted information that was pro-active and pre-emptive, so that the women would not be “shocked” or caught off guard by changes that were likely to occur in their bodies. When the women heeded the provider’s advice or information, and found it to be helpful and/or accurate, it added to the healthcare providers’ credibility:

He (the oncologist) recommended different support groups at (the cancer center). He recommended for me to attend a class on lymphedema. He recommended me to attend a class on make-up application and wig selections, if I choose to wear a wig and that type thing. That was really helpful because I did it all. (Lissa, age 58, 7 year post-diagnosis) I received a lot of information, printout information and stuff, and if I had any questions, I was given a number that I called. When I went to the hospital to have my port put in and everything, they were real nice there. They sent me a lot of information and I had a person that if I had any questions she was right there for me. All I had to do was make a phone call and, anything I needed, she was right there. (Lydia, age 52, 5 years post-diagnosis)

The participants expected their family to not only encourage them to seek medical guidance, but also to support—with unquestioning acceptance—the physician’s recommended treatment plan The survivors’ equated this lack of questioning about treatment decisions from their family with inherent support:

I just happened to be feeling up there and just kind of felt this lump and then one of my daughters said, ‘You should go see Dr. Garvin, and that’s what I did. (Frankie, age 66, business owner)

Nobody doubted me and told me, “No, I wouldn’t do this, I wouldn’t do that.” I didn’t have that. And I have heard a lot of people say that’s what they went through. They was, “I wouldn’t go through with this”, but I didn’t have that. I had the support. (Daisy, age 66, 7 years post-diagnosis)

Well, I had support of my family, but they didn’t necessarily help me decide my treatment. Only my doctor and I decided that. So, but, I had good family support and I told them what treatments the doctor had recommended, so they were very supportive of that. They didn’t ask any questions about that. (Lissa, age 58, 7 years post-diagnosis)

The participants also expected and appreciated receiving instrumental support, such as transportation to and from clinic visits and treatment sessions, meal preparation, house cleaning, and assistance with activities of daily living, from family members and friends. Family members and friends often coordinated and scheduled instrumental support activities to assist the participants with doing “whatever you needed them to do:”

Yeah, my cousins and my…husband he went sometimes…and my son and my cousin and my daughters…they took me and they took me. They wouldn’t let me drive. They would take me all the time to the treatments and everything. They was very helpful. (Flossie, age 72, 4 years post-diagnosis)

You really need the participation of everybody when you go through the treatment. It’s not something you can just say, I’m going to stand alone on this one, because you can’t. You pretty much need everybody. So, that’s why I pretty much had to involve them. And my sisters. I got, my sisters, I got brothers. My family was there, nieces, whoever. It’s like whoever you call did whatever you needed them to do. (Zora, age 50, 4 years post-diagnosis)

Spiritual support was an integral to most of the participants’ experiences, often sensed through their own personal connection with God, the presence of clergy and others with similar spiritual beliefs (i.e., family members). The participants anticipated and received support throughout the diagnostic, treatment, and recovery phases from these spiritually supportive individuals, who shared Bible verses, prayer, and affirmations that God puts you through these things to make you a better person (Lydia). Despite the uncertainty surrounding transitions through breast cancer treatment, this type of spiritual support provided survivors with assurance that their treatment outcome would be favorable:

He (her pastor) prayed and said everything was going to be alright and just do as they say do and not try to listen to other people in the street. (Eddie, age 37, 5 years post-diagnosis)

What’s my best support, was knowing that God was going to see me through. (Diane, 64 years old, 5 years post-diagnosis)

My church members. They was just there! And really and truly, they were, ‘how you feel today?’ I said, ‘Oh I feel wonderful.’ I said, ‘and I thank God every day, for a new day, because it’s a day I’ve never seen before’. (Minnie, age 62, 5 years post-diagnosis)

“I wasn’t expecting that and that just made me feel so good”: When reality exceeds expectations

A unique finding of this study was the consistent identification of healthcare professionals (e.g., physicians, nurses, social workers, support group leaders) as more than just providers of health care, but as substantial and integral sources of support in these women’s lives. The participants expressed surprise and delight with how their providers encouraged and cared for them beyond what they expected. The participants saw their providers as friends, who often engendered trust and connectivity by sharing personal stories and experiences with breast cancer suffered by their own family members:

(My doctor) said that my mother was lost (he also cared for the participant’s mother who died of breast cancer) and he did not want to lose me…that saved my life. (Katie Mae, age 54, 5 years post-diagnosis)

He [my doctor] said, ‘you’ll be fine’. The doctor that he referred me to was actually…actually treated his wife and, of course his wife passed away, but he said she lived a long time. She did very well up under him, and he ended up sending me to the same doctor. And, that kind of eased my mind… because he shared his personal experience with me and that made a difference with my treatment. (Eddie, age 56, 5 years post-diagnosis)

Once trust was established, the participants framed the little things that their healthcare providers did and said as positive, welcomed support. Participants commented on how their healthcare providers were consistently available and willing to engage with them at “anytime.” Rather than a delineated, patient-provider relationship, their providers encouraged and fostered sincere and caring relationships with them:

She (support group mentor) really encourage me…she was my friend…I just looked forward to seeing her (Katie Mae, a 54 year old, 5 years post-diagnosis).

Yeah, I had the same two nurses the entire time. If one was out of vacation, then the other nurses would fill in and come and help, but the whole time they made the experience smooth. They told me to call them anytime. Even right now, I still call them. They just built that kind of rapport with us…with me, with all the patients, and they said anytime I had a question or wanted to know anything, to just call and they would be willing to talk to me and help me out. (Eddie, age 56, 5 years post-diagnosis)

He (oncologist) had given me a lot of support and hope. After I had my last treatment, he give me a big hug and told me, he said, now you need to get out of here because there’s a lot of sick people we need to take care of. I don’t think you sick, though. You go and be blessed and enjoy your life. So, that was hope. (Daisy, age 66, 8 years post-diagnosis)

“Don’t try to make an invalid out of me”: When support given wasn’t what was desired

The participants as a whole expressed that they had received overwhelmingly positive support from their healthcare providers, family members, friends, and clergy. However, participants also described instances where the support offered did not fit the perceived needs or expectations of the participant. From the participant’s perspective, there was a mismatch between the type of support being offered and the person offering it. This mismatch occurred if the participant expected a certain person to provide a specific type of support and they failed to do so. For example, Diane, a 64 year old, related a friend’s cancer story of the doctor not doing what he supposed to do as a bitter experience. The mismatch also occurred if a specific person offered support that the participant felt was someone else’s role. As described previously, for our participants, treatment decision making was done primarily by the physician, with occasional and rare input from the participant. When family members (versus healthcare providers) tried to take on the role of providing informational support, their suggestions regarding treatment options were perceived as unhelpful:

I got a lot of suggestions about doing something else and taking some kind of pills or medicine some other way, …one of my relatives that made that suggestion. I just wanted to follow the instruction of Dr. Porter, what he said. (Frankie, age 66, 7 years post-diagnosis)

What often led to these mismatches in support was that family members and friends were unaware of the participant’s changing conceptualizations of what support was, and how much they needed:

My husband would say do what you have to do, you know, but that’s not enough and I felt alone, very alone with that one. (Ella, age 64, 5 years post-diagnosis)

My children, my pastor, I mean they just came by. My deacons and, oh my God! When you see all the love and it just make you wanna do. And sometimes I have to say, oh now, it’s time for ya’ll to leave…Then say, “well, I need a little rest”, but they the next day they’re right back. (Minnie, age 62, 5 years post-diagnosis)

(Everyone was) trying to do too much…sometimes you just have to say ‘back off, I’m okay’. (Shelly Ann, age 64, 6 years post-diagnosis)

This lack of awareness on the part of family members and friends was at times even more problematic, leading participants to feeling compelled to give support rather than receive it. Some made decisions to suppress the truth about their experience with cancer in order to provide emotional support to their family members:

I didn’t tell them nothing [about the cancer diagnosis] because I don’t them to be moping and crying over me, so I didn’t tell them. (Liza Jane, age 70, 7 years post-diagnosis)

I think she’s [referring to her daughter] angry, too, that I got sick.… She really feels that God turned his back on me because I was her mother and I was just a good mother and…she thinks that shouldn’t have happened to me. So, around her, I have to pretend that I’ve overcome it and it’s just a game that you sometimes win and you sometimes lose. (Etta, age 65, 4 years post-diagnosis)

A particularly poignant experience for these breast cancer survivors was the loss of support after completion of treatment. Even though it was a happy time, the lingering fear that the cancer could recur was ever-present. Some participants experienced a sense of disconnection from their family members and friends, while others expressed a discrepancy between how they thought they should feel, and their current reality. Knowing that other women had gone through similar experiences and seemed so happy made this feeling of loss especially difficult:

I’m still here, and I’ve finished my treatment, I’ve finished the chemo. I look at some woman on TV and they have been through it and they seem so happy that they went through it and on the other side and I feel like I’m still stuck there. I feel like I’m still stuck there. When is the joy going to come? (Etta, age 65, 4 years post-diagnosis)

Discussion

This qualitative study explored African American breast cancer survivors’ recollected experiences with and perceptions of support during diagnosis, treatment, and survivorship. The emergence of our main themes from participant narratives illustrates how social support is not merely a unidirectional process assumed as inherently acceptable simply because it was offered. Rather, support is a process of bidirectional negotiation where the overall perception of social support as helpful and acceptable depends on who is offering the support, what type of support is being offered, and when it is being offered. By applying the lens of transitions theory, we found that African American breast cancer survivors’ perceptions of social support offered by their family, friends and health care providers varied based on the presence of transition properties and the intersections between them.

Awareness and engagement were transition properties consistently observed in participant narratives where social support met expectations. In order for support to meet expectations, three conditions had to be met. First, the survivor and the individual providing the support had to be aware of the survivor’s need for support. Second, the individual had to offer the type of support that the survivor desired at that time. Third, the support had to be offered by the individual in the survivor’s social network that the survivor expected it to come from. From the narratives in this study it seemed that survivors expected healthcare providers to offer informational support, and family and friends to provide instrumental and emotional support. For example, survivors described demonstrations of nonverbal emotional support when their families “did whatever you needed them to do,” or clergy reminded them “God was going to see me through.” This finding aligns with the seminal work of Helgeson and Cohen (Helgeson and Cohen 1996) which discussed how cancer survivors expected and desired certain types of support to come from key individuals in their lives (e.g., desired emotional support from family and friends, etc.).

Comparatively, awareness and engagement were also consistent properties for when support exceeded the participant’s expectation. An interesting observation within this theme was that participants primarily described exceptional support as coming from cancer care professionals (e.g., nurses, support group mentor, etc.) versus their family or friends. This finding resonates with Schulz (Schulz et al. 2008) where African American cancer patients discussed how much they valued the support of their treatment team, with one patient illustrating the notion of support exceeding their expectations by describing their nurse as their “guardian angel.” Unlike some other forms of medical care, in oncology cancer care professionals have frequent contact with patients, providing an ongoing opportunity for patients to develop trust. As survivors in this study were control participants who did not receive benefit of the previous intervention (Heiney et al. 2012), this clearly improved relations with cancer care team members. Additionally, cancer care providers and professionals are highly knowledgeable and aware of the ongoing physical and psychological effects that a cancer diagnosis and its treatments can have on a patient. Their high level of awareness prepares them to anticipate and attend to the evolving supportive needs that survivors may experience over time.

An additional explanation for why participants may have viewed support from cancer care professionals as exceptional may be related to the power differential between the patients the professionals. All of our participants were African American and more than half of them reported annual incomes of less than $30,000 per year; this difference in status had the potential to add to their perceptions of vulnerability during the course of their interactions with healthcare professionals. Further, limited information from the survivors’ medical records indicated that some of their surgeons and medical oncologists were African American men; thus, potential racial and/or gender differences in the survivor-provider relationship may have also contributed to these perceptions. Given the life-threatening nature of a cancer diagnosis, cancer patients may feel an urgent need to quickly establish trust in their oncologist regarding the diagnosis and treatment plan (Hillen et al. 2012). As noted previously, the survivors were very grateful for this type of support from their providers. However, their pleasant surprise of the additional, emotional engagement the providers established with them may have been related to the survivors having no expectations for receiving the type of support they generally expected to come from their family, friends, and clergy.

When the survivors’ support needs were unmet, the data subcategories we identified were associated with a much more complex intersection of transition properties that the participants, family, and friends were required to negotiate. In addition to awareness and engagement, critical points and events, change and difference and time span emerged as important transitions framework properties. A common element of these three properties is an indication of some sort of “shift” in the life of the survivor, whether brought on by an identifiable moment (e.g., cancer diagnosis, completion of treatment), change in perception (e.g., when survivor wanted to do more for themselves versus receive support from others) or time span (e.g., state of feeling disconnected from “happy survivors” on television versus reality of feeling loss). This theme demonstrated that the survivor’s supportive needs were unmet when they themselves, their family members, or healthcare providers were unaware of or failed to recognize the survivor’s supportive needs may change in various situations. Survivors in our study revealed that there were times they did not tell their family and friends that they needed some other form of support because they did not want to be a burden. Similar to the concept of “meddling” that emerged from previous research with African American cancer survivors (Schulz et al. 2008), our participants confronted difference when family members offered support that was dissonant to their needs or provided support that discounted their ability to care of themselves. In these situations, survivors changed their perceptions of what type of support they needed, shifting from dependence on their family members for emotional or instrumental support to more of a sense of independence. However, the survivors’ desire for independence was also mixed with feelings of loss of support when transitioning from active treatment. Completion of treatment is a critical event in the breast cancer journey, where survivors shift from engaging with cancer care providers on a daily to weekly basis, to every 3, 6 or even 12 months. This change in care resulted in survivors and members of their social network being unaware of and unprepared for the potential impact that this transition could have on the survivors’ perceptions of and expectation for support from others.

Practice Implications

Cancer survivor outcomes are optimal when their care is being coordinated by a comprehensive team of providers across specialties (e.g., oncology, primary care), disciplines (e.g., medicine, nursing, social work) and institutional settings (e.g., academic or community cancer centers) (McCabe et al. 2013). These Providers can mediate conversations between breast cancer survivors and members of their social support network (e.g., family members, friends, clergy) about what supportive role the survivor expects each person to play. Providers can initiate these conversations by administering social support assessments throughout the breast cancer experience, and especially during critical moments, such as the point of diagnosis, completion of treatment, and recovery period. Providers should create space and time for this conversation to be iterative and ongoing, underscoring that the survivor’s needs, abilities and expectations for support are likely to change and vary over time. The survivor’s multidisciplinary care team are best suited to determine who, how and when these conversations should be initiated.

Transitions theory suggests key facilitators, such as preparation and knowledge and community conditions (Meleis et al. 2000), that providers can implement to enhance transitions of support for breast cancer survivors. Acts of preparation and knowledge could include providers not only giving anticipatory guidance on physical changes that a patient might experience, but also informing them about changes they may experience in their familial and social relationships during their cancer journey. Providers may also want to prepare survivors for the possibility that their experiences with breast cancer may differ from what they see in popular media. Training for survivors should focus on increasing their skills and ability to negotiate the support that they need at a given time and make it clear to family, friends and providers that those needs may change over time (Hoffman, Lent, and Raque-Bogdan 2013). In addition to survivors, providers should assess the survivor’s community conditions, which includes their familial or spiritual sources of social support. Members of their social networks should be educated on how to be aware and intuitive in their offers of support, and flexible with the survivor as to what levels of support they desire as they move into longer-term survivorship.

Conclusion

Understanding African American women breast cancer survivors’ perceptions of social support within the context of transitions theory provides a framework for ensuring that their needs and expectations for support are met during their cancer experience. Our findings highlight that survivors perceive support as helpful when they receive the right type of support from the right person at the right time. Otherwise, survivors may perceive the support given as unhelpful which could lead to unintended consequences, such as greater emotional distress. Family, friends and health care providers should be encouraged to periodically assess the survivor’s evolving needs to ensure the social support they receive is the support they desire.

Key messages.

1. In the United States, African American women have the highest rates of breast cancer mortality at every age compared to non-Hispanic White women.

2. Appropriate and tailored social support for African American women diagnosed with breast cancer may enhance resiliency during their cancer journey, and may mitigate the disparities suffered by this vulnerable population.

3. Multiple sources (e.g., family, friends, providers) and types (e.g.., instrumental, emotional) of social support are important to African American breast cancer survivors’ successfully coping with cancer but support must harmonize with the needs and expectations of the survivor.