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An Integrative Review of Psychosocial Concerns Among Young African American Breast Cancer Survivors

Nolan, Timiya, S., PhD; Frank, Jennifer, PhD; Gisiger-Camata, Silvia, MPH; Meneses, Karen, PhD

doi: 10.1097/NCC.0000000000000477
ARTICLES
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Background: African American (AA) women are more likely to be given a diagnosis of breast cancer at an early age, experience morbidity after treatment, and exhibit disparities in survivorship. Although psychosocial well-being is largely studied among breast cancer survivors, data are sparse regarding young AA survivors.

Objective: This integrative review examined psychosocial concerns in survivorship among young AA survivors using a quality-of-life framework.

Methods: PubMed, CINHAL, EMBASE, PsychINFO, and Scopus were searched for articles exploring psychosocial well-being in young AA survivors.

Results: The search yielded 237 articles that were retrieved and reviewed for relevance. Of these, 16 articles were selected based on inclusion/exclusion criteria. Data were evaluated and synthesized based on the quality-of-life model. Selected articles omitted the study of several psychological subconstructs and identified existing psychosocial concerns that require mitigation.

Conclusions: The review revealed key areas of psychosocial concerns among young AA survivors including ongoing anxiety/depression, cognitive changes, and relationships. Identified gaps include paucity of research with young AA survivors and their residual psychosocial concerns.

Implications for Practice: Review findings indicate a need to increase survivorship research on young AA survivors. Researchers, clinicians, and young AA survivors must partner in efforts to understand psychosocial concerns and translate findings into clinical practice (ie, use of psychosocial distress tools, distress de-escalation protocols, and individualized survivorship care plans) toward reduction of quality-of-life health disparities among young AA survivors.

Author Affiliation: School of Nursing, University of Alabama at Birmingham.

Timiya S. Nolan was supported by a Doctoral Degree in Cancer Nursing Scholarship (DSCN-15-073-01) from the American Cancer Society, Komen Graduate Training in Disparities Research Award (GTDR15329376; MPI: Drs. Meneses and Demark-Wahnefried), Jonas Nurse Leadership Scholarship, and Gladys F. Colvin Doctoral Fellowship. Dr Meneses is supported by the Cancer Prevention and Control Training Program from the National Cancer Institute, #5 R2-CA047888-29 (MPI: Meneses/Demark-Wahnefried); Speed of Processing in Middle Aged and Older Breast Cancer Survivors grant from the National Institute of Aging Center for the UAB Translational Research on Aging and Mobility (P30-AG022838; PI: K. Ball); the Comprehensive Cancer Center Core Support Grant (#5P30CA013148-40; PI: E. Partridge). Dr Meneses and Ms Gisiger-Camata are supported by the CDC Project, Increasing Awareness and Support for Young Women with Breast Cancer in the Gulf South, (#PH-15-111-071; PI: Dr Williams; Meneses subcontract); and the Young Breast Cancer Survivorship Network Initiative in the UAB School of Nursing by the Women’s Breast Health Foundation of Greater Birmingham, (no number assigned; Project Director: Meneses). Dr Frank has no related research funding to disclose.

Correspondence: Timiya S. Nolan, PhD, College of Nursing, The Ohio State University, 379 Newton Hall, 1585 Neil Ave, Columbus, OH, 43210 (nolan.261@osu.edu).

Accepted for publication December 14, 2016.

Breast cancer is the most common cancer among women in the United States and the second most common cause of cancer deaths among African American (AA) and white women.1 Approximately 11% of the estimated 231 840 women who were given a diagnosis of breast cancer in 2015 were young (younger than 45 years).1 Young AA survivors are underserved and likely to experience health-related disparities throughout survivorship compared with young white survivors.1,2 Such disparities include higher incidence of disease, higher mortality, and greater chronic symptom burden associated with poorer quality of life than young whites—particularly physical, social, and psychological well-being.1,2 In light of such health disparities, it is essential to understand quality of life among young AA survivors.

Quality-of-life frameworks generally encompass 4 domains: physical, psychological, social, and spiritual well-being experiences.3 The Quality of Life Applied to Breast Cancer Model (QOL-BC) (Figure 1), one of the more frequently used quality-of-life models, illustrates that the 4 domains are interconnected and further explained by subconstructs.3 Quality-of-life outcomes from previous studies reported health-related disparities among AA breast cancer survivors, identifying poorer overall, physical, and social quality of life in AA survivors when compared with whites.4–8 However, psychological (emotional) well-being has been reported to be significantly higher4,6,7,9 and lower5,8 in AA survivors than whites. Others found that variables such as body mass index and low socioeconomic status were better predictors of poorer quality of life than AA race.8,10

Figure 1

Figure 1

In a review of AA patients transitioning to survivors, Mollica and Newman11 identified that psychological concerns are prevalent on the completion of active treatment of breast cancer. In a systematic review, young survivors expressed distress within psychosocial and physical well-being domains.12 Still, little is known about quality of life among young AA survivors. As AA women, young survivors are more likely to experience psychological hardships.13 One study reported that young AA survivors described greater concerns in physical, social, and psychological well-being than young white survivors.2 A previous review14 of quality of life in young AA survivors came to a similar conclusion; however, the review included young AA women in active treatment along with those who had completed treatment. Furthermore, there are serious methodological limitations in many studies of survivorship including small sample sizes, homogeneous white samples, and poor conceptualization of quality-of-life constructs as they relate to AA survivors.11,15 Although disparity has been noted among young AA survivors, the characteristics of quality-of-life constructs that may contribute to their comparatively poor quality of life are not well understood. Thus, a more expansive and targeted view of culturally specific psychosocial survivorship concerns among young AA survivors was needed.

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Methods

The integrative review of experimental and nonexperimental research was conducted to provide a comprehensive understanding of psychosocial aspects of breast cancer survivorship among young AA survivors as identified through the QOL-BC model.3 Whittemore and Knafl’s16 integrative review framework provided a stepwise research approach to reduce systematic bias while reviewing and synthesizing current literature on the topic of interest.

This integrative review includes English-language articles retrieved from Web sites and multidisciplinary academic databases: PubMed, Cumulative Index to Nursing and Allied Health Literature, EMBASE, PsychINFO, and Scopus. The current knowledge of posttreatment young AA survivors’ psychosocial state was surveyed using keywords and MESH terms (“breast cancer” or “neoplasm,” “survivor,” “African American,” “quality of life,” OR “well-being”) in the title or abstract. The search term “young” was not used. When searching the aforementioned terms in addition to the term “young” in the title or abstract, no references were generated.

Review was limited to available full-text articles from January 2005 to September 2016 to assess current literature on the topic. Accordingly, inclusion criteria were applied to purposively sample articles for review. Articles were reviewed if they met the following inclusion criteria: sampled young AA survivors and described concepts of quality of life as identified by the QOL-BC. Although there are many other definitions of “young,” for the purposes of this article, it is defined as younger than 45 years; articles were included if the reported mean age or the mean age with 1 SD was less than 45 years. In addition, “survivor” is defined as one who has a previous diagnosis of breast cancer and has completed active treatment. These definitions of “young” and “survivor” strengthen this review’s ability to describe quality-of-life experiences of younger AA survivors who have integrated back into their routines, which have not been the explicit criteria in previous reviews.11,14 All articles were reviewed for relevance. If articles met the inclusion criteria (adding to information and depth about young AA survivors or describing psychosocial survivorship or quality of life in young AA survivors), they were included in the review.

The search yielded 61 PubMed, 24 Cumulative Index to Nursing and Allied Health Literature, 49 EMBASE, 33 PsychINFO, and 70 Scopus references—a total of 237. One hundred twelve duplicate articles were removed. Of the 125 remaining articles, 109 were excluded based on the inclusion criteria (49 were not related to psychosocial quality of life in young AA survivors, 5 reported mixed data from patients and survivors, 10 did not describe psychosocial quality of life by age, 7 reported mixed data from a multicultural sample, 3 reported mixed data from a multicancer sample, and 35 reported data from participants whose mean age plus or minus 1 SD was greater than 44 years). The remaining 16 eligible articles were placed in a table for organization and critical analysis (see Figure 2).

Figure 2

Figure 2

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Critical Analysis and Quality Appraisal

Two independent reviewers (T.S.N. and J.F.) analyzed the 16 eligible articles. Data were abstracted, including identification of findings that aligned with Dow et al’s3 descriptions of psychological and social well-being domains. Along with data abstraction, 1 reviewer (T.S.N.) rated each article using appropriate Critical Appraisal Skills Program (CASP)17 or Strengthening the Reporting of Observational Studies (STROBE)18 checklists to standardize quality appraisal. The ratings were spot-checked with full agreement by a second reviewer (J.F.). The CASP and STROBE scores are also displayed as a fraction (score earned/total possible score) in the Table, which further describes the articles by author/title, design/purpose/theory, sample, methods, and strengths/limitations. Content experts (S.G.C. and K.M.) validated analytical procedures. No articles were excluded after quality appraisal.

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Results

Overview

The 16 selected articles are described in the Table and include seven that used qualitative methodology and nine that used quantitative methodology. Of the qualitative studies, two20,29 used grounded theory analytics, and five24,28,30,33,34 used exploratory or descriptive analytics. The quantitative studies used both descriptive (2)22,26 and experimental (7)19,21,23,25,27,31,32 designs. Six of the 17 studies were guided by the following theoretical frameworks: Behavioral Model for Health Services Utilization and Afrocentric Model,33 Biophysical Model of Breast Cancer Survivorship for AA Women,22 Contextual Model of HRQOL and Cognitive-behavioral Model,19 Health-related Quality of Life Model,24 Theory of Psychological Well-being from the QOL-BC,26 and Theory of Uncertainty in Illness.25 Of the quantitative studies, all used measurement tools that had been previously validated (see Table).

Table

Table

The studies in all articles reported young AA survivorship outcomes from the psychological and social well-being domains of the QOL-BC. Abstracted data were synthesized and are presented hereinafter.

Across articles, the total number of AA survivors across the 16 studies was 1 477. The mean age of participants was determined at the time of diagnosis only in 1 study28 and at the time of study participation in all others. Mean age ranged from 37 years to greater than 56 years, although in all included studies, participants had a mean age minus 1 SD that was less than 45 years. Thus, participants in the selected articles were somewhat heterogeneous with respect to age. Five22,30–33 articles reported mean length of survivorship (3–10 years). Samples within the selected articles were generally highly educated. Among the 12 studies21–25,27–32,34 that reported marital/partnership status, 15% to 67% of AA survivors reported being married. One intervention (Sisters Peer Counseling in Reproductive Issues after Treatment) was addressed in 2 articles,31,32 with intervention efficacy discussed separately from psychological and social outcomes. In addition, the Project Care intervention was addressed in 2 articles,23,27 with intervention efficacy discussed separately from the assessment of physical activity on quality of life and negative mood.

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Psychological Quality of Life

Among the selected articles, psychological well-being was studied as a single construct,19,21,23,27 as well as by many of its subconstructs from the QOL-BC: anxiety/depression,20–22,24,27–29,31,32 distress of diagnosis and treatment,22,24,27,28 fear of recurrence/tests,24–27,29,33,34 concentration/memory,24,29,34 and coping.24,25,28–30,33,34 However, subconstructs of usefulness, control, emotional pain, happiness/satisfaction, and overall perception of QOL were not addressed by the selected articles. The following is a synthesis of findings by subconstruct.

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ANXIETY/DEPRESSION

Psychological well-being was greatly affected by breast cancer diagnosis and treatment. In 1 qualitative study,24 6 of 8 participants reported concern within psychological well-being. In another qualitative study,28 23 of 33 young AA survivors reported a need for psychological support, and 7 of 33 reported having psychological difficulties. The subconstruct anxiety/depression was predominately reported separately as “anxiety” and “depression.” However, qualitative reports of both “anxiety” and “depression” reflect associations between the two,24 in addition to financial burden,20 fear,28,29 and loss of support.29 The association was further supported in a quantitative study.31 There were conflicting reports of whether anxiety/depression were20,28 or were not22 associated with lower socioeconomic status. Yet, there was evidence that anxiety/depression and distress of diagnosis and treatment were related.

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DISTRESS OF DIAGNOSIS AND TREATMENT

The subconstruct distress of diagnosis and treatment or psychological distress was expressed as sorrow for oneself and depression24,28 and as chronic stress.22 In a study of 155 AA survivors,22 chronic stress was a significant predictor of anxiety and depression (P < .001); however, young age was not a predictor of distress.22

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FEAR OF RECURRENCE/TESTS

Gibson and colleagues26 reported distress of diagnosis and treatment as a component of fear. However, the qualitative descriptions of fear among young AA survivors were multimodal—being associated with recurrence/tests,33 in addition to thoughts of death/dying,28,34 interruption of caretaker role,20 financial instability,20 stigma,28 and uncertainty about the future.28,34 For some, in a qualitative study of 10 AA survivors, fear was a motivator to follow up with healthcare providers, whereas others saw it as a barrier to follow-up.33 Moreover, the fear and stigma surrounding cancer diagnosis and cultural norms sometimes caused participants to delay seeking healthcare.28

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CONCENTRATION/MEMORY

Cognitive changes such as forgetfulness (memory loss) and confusion after breast cancer treatment were concerns of AA survivors.24,29,34 Eight of 8 AA survivors ranked cognitive changes fifth of the 6 concern domains.24 Two articles29,34 reported concerns in the physical well-being domain, whereas another24 reported cognitive concerns consistent with the QOL-BC in the psychological well-being domain.

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Coping

Management of breast cancer diagnosis, treatment, and sequelae was a frequently identified subconstruct within the selected studies. AA survivors used many strategies to cope including faith and prayer,24,28–30,33,34 social support,28,29 positivity,34 avoidance,33 and continuing daily activities.34 The most commonly reported strategy among young AA survivors was reliance on spiritual/religious beliefs and activities. Survivors reported strengthening relationships with God (seen as a positive change) and coping through spirituality.24 In seeking higher spirituality, some felt the presence of God guiding them throughout diagnosis and survivorship.28,30,34 Others remarked that their spirituality helped them to deal with daily life and decreased fears related to fertility.29,31,34 In fact, 1 study30 found that participants would be comfortable with healthcare providers offering spiritual care.

This section described interrelations between psychological and social well-being within the QOL-BC model. The next section will further elucidate interrelations while addressing results concerning social well-being.

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Social Quality of Life

Among the selected articles, social well-being was studied as a construct,21,23 as were all of its subconstructs: family distress,28,29,33,34 home activities,28 isolation,20,28 employment,28 financial burden,20,24,28,33,34 support/other,28–30,33 personal relationships,31–33 and sexuality.24,28,31,32,34 The following is a synthesis of findings by subconstruct.

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FAMILY DISTRESS, HOME ACTIVITIES, PERSONAL RELATIONSHIPS, AND ISOLATION

The subconstructs of family distress, home activities, personal relationships, and isolation were briefly described in a number of the selected qualitative studies. Descriptions were sparse, and the subconstructs were frequently discussed in conjunction with one another. First, many AA survivors adapting to their new normal feared and/or experienced role changes in relationships with others, moving from provider to recipient of care among their children and partners/husbands.24,28,29,33,34 Yet, 15 AA survivors in a qualitative study expressed pride in having strength to “not allow cancer to consume their lives.”34

In addition to mothering, young AA survivors also reported challenges with personal relationships with partners/husbands and dating. Two-thirds (22) of young AA participants perceived that partnered (committed) relationships were changed during survivorship.28 Both married and unmarried young AA survivor participants feared or noted rejection from men.28,34 Although some participants felt very supported during and after treatment, others described feeling isolated and alone due to their diagnosis.20,28 Particularly, young AA survivors felt the absence of survivors from similar life stages.28

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EMPLOYMENT AND FINANCIAL BURDEN

The findings from selected articles reveal that employment and finances were related to fear and anxiety/depression.20 African American survivors reported needing to feel a return of normalcy—both as a sign of resiliency and of financial stability posttreatment.28,33,34 For example, Lewis and colleagues28 reported that, for the 93% (31/33) of young AA survivors who were employed, nearly half reported no changes related to diagnosis and treatment. Yet, Darby and colleagues20 described 36 AA survivors’ experiences with financial concerns using 3 themes: lack of access to adequate care, long-term financial burden of this disease due to out-of-pocket expenses, and non-medical expenses. Financial concerns were also cited by 10 of 10 AA survivors as a barrier to continuing medical follow-ups.33 Another selected study34 noted that some of the 15 AA survivors had non–treatment-related bills for expenses such as travel, whereas others did not.

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SUPPORT/OTHER

Support outside the home was important to participants who needed assistance from multiple sources. Particularly, 1 study noted that 4 of 10 AA survivors experienced mixed familial support.33 Many participants said that other survivors who have endured similar circumstances were valuable resources.28,29,33,34 In addition to referrals to support groups, some participants reported that healthcare providers were a positive source of support.33 Lack of healthcare provider information was described as a barrier; some AA survivors reported that healthcare providers need to better understand and respond to individual survivorship concerns.24,29,30,34 Physician-patient interactions were variable in trust and quality of care.24,29,34 Finally, support outside the home, particularly psychological, obtained from spiritual/religious interactions with others was important.28,34 Some participants received social support from spiritual relationships at church and in daily life; others felt neglected and ostracized because of the diagnosis.30 However, the need for spiritual support led some participants to seek other churches and spiritual individuals.28,30

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SEXUALITY

Sexuality was associated with both psychological and physical well-being subconstructs.3 Many AA survivors reported that breast cancer and/or its treatment negatively impacted aspects of their sexuality, citing difficulties in sexual functioning (eg, vaginal dryness and pain),28,29,31 menstruation/fertility,28 desire/libido,28 and body image/attractiveness.28,34 Sexual activity and intimacy with partners were disrupted by treatment, fatigue, pain, decreased libido, and ineffective coping among young AA survivors and their partners.24,28

Unlike chiefly negative changes in sexual desire, body image/attractiveness was variable with 22 of 33 AA survivors reporting feeling somewhat to very attractive despite having scars and prostheses28 and others reporting feeling less attractive.24,28 Participants described how surgery and hair loss resulted in negative reactions from their partners/husbands, leaving them with feelings of being damaged and less feminine than before their diagnosis.28,33 Importantly, unmarried young AA survivors faced greater challenges when dating and establishing sexual relationships with partners.24,28,31 Furthermore, fertility was also a concern for women on the younger end of the age spectrum, especially those given a diagnosis before having children.28,31,32

Although concerns were identified, 73% (24/33) of young AA survivors reported that their healthcare providers did not address sexual concerns.28

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Psychological and Social Well-being Interventions

Mitigating psychological effects of breast cancer diagnosis and treatment was a central concern for this review’s selected interventions studies. Cognitive-behavioral/psychoeducation19,21,23,25,27,31,32 and social support21,31,32 interventions targeted varying psychological concerns, with 419,23,25,31,32 of 5 interventions showing significant intervention effects. One study25 showed that cognitive-behavioral/psychoeducation (Younger Breast Cancer Survivor Uncertainty Management Intervention) using 4 scripted, weekly training calls from a nurse interventionist (related to breathing relaxation, calming self-talk, communication strategies, and improving knowledge of long-term adverse effects) significantly reduced psychological distress of uncertainty when compared with an attention control group (P = .01). Another intervention (Sisters Peer Counseling in Reproductive Issues after Treatment) described in two of the selected articles showed that its culturally tailored workbook and counseling sessions significantly improved stress (with AA survivors who were initially the most distressed showing the greatest reduction in stress; P = .0022)32 and sexual dysfunction (P = .0167)31 but did not affect menopausal symptoms when compared with the attention control group.31

A study of a culturally sensitive, cognitive-behavioral/psychoeducation intervention for stress management (Project CARE) as compared with a breast cancer wellness attention control group showed improvement in psychological well-being and overall including overall quality; this study yielded no significant differences between groups over time.27 Among participants of the aforementioned study, those who participated in physical activity showed improved mood and social and spiritual well-being scores when compared with those who did not participate (Ps = .021 and .004, respectively).23 Moreover, these interventions also had components that are related to social and physical well-being. The Embracing Hope intervention, which used a holistic informational booklet and telephone calls from trained research staff, significantly increased emotional well-being over a control group that received the booklet only (P < .003).19 Finally, a self-advocacy skill-building intervention with small social worker–led group sessions showed no difference in overall quality of life, depression, or skills when compared with a medication adherence educational session and standard care.21

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Discussion

As illustrated in this integrative review of psychosocial concerns among young AA survivors, breast cancer and its treatment can result in long-term effects on quality of life. This review supports and extends findings of previous reviews.11,14 As defined by Dow and colleagues,3 psychological and social well-being concerns have been studied among young AA survivors. However, the current literature on well-being or quality of life is scarce and ill-defined among young AA survivors, often using other quality-of-life models and scales to assess this concept. Considering the abstracted data from this review within the context of the QOL-BC model, all social well-being subconstructs were described and/or examined among this population. However, psychological well-being subconstructs were not all described (ie, usefulness, control, emotional pain, happiness/satisfaction, and overall perception of QOL). The absence of the aforementioned subconstructs from the literature may be attributable to lack of studies or may suggest that the model does not fully describe quality of life in young AA survivors. With the interrelation of quality-of-life constructs demonstrated by this review, it is important to more fully understand concerns in psychological well-being along with those in social well-being.

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Psychological Well-being

This review revealed that psychological concerns are associated with aspects of physical, social, and spiritual quality of life—related to individual and social factors such as anxiety/depression, distress of diagnosis and treatment, fears, social roles and interaction, and uncertainty of the future. Stigma also was associated with avoiding discussion of cancer diagnosis and treatment,28,34 which may contribute to psychological dysfunction. Literature shows that psychological concerns may be more severe as a function of younger age and more advanced stage at diagnosis.14,35 Younger AA survivors reported greater fear of recurrence, death, and familial role changes; fear of recurrence was also positively associated with distress and negatively associated with quality of life.36 Given that AA women are more likely to be given a diagnosis at young ages with advanced stages of disease,1 further assessment of psychological concerns using both qualitative and quantitative methodologies (and subsequent study of mitigation/prevention strategies) is warranted.

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Social Well-being

This review also illustrated young AA survivors’ support needs/concerns and sources (eg, survivors, healthcare providers, family, and church). Importance was placed on having access to socialization and support (eg, other survivors and family)—elements that formed the basis of several survivorship interventions within this review. This need for socialization and support has been seen throughout the literature in AA survivors.37 Noting the psychological and social well-being interrelation, understanding of the role of socialization in young survivors is needed to design tools to assess social/familial relationships and to inform future interventions. Also indicated in the review, young AA survivors are likely to be single, want children, and report greater psychosocial concerns; in addition, they may endure personal and social scrutiny when dating. However, this review is limited to the perspective of AA survivors; it is unknown whether AA survivors’ mates or potential mates perceive them negatively. Future studies can be directed at exploring the impact of family composition, marital status, and fertility on young AA survivorship with the aim of developing interventions to address the identified social concerns.

Although financial burden was not well represented in this review, it is well documented that AA survivors with and without established healthcare providers tend to have less access to care and fewer resources for survivorship needs than white survivors.38 Thus, young AA survivors may experience greater financial concerns than young white survivors.2 As those with fewer resources report inadequate access to healthcare providers for survivorship care,39 further study of financial implications of young AA survivors survivorship is needed.

Healthcare providers are often the initial source from whom young AA survivors seek support. As shown in this review, healthcare providers deliver resources that are vital to both survival and quality of life (eg, screening, treatment, survivorship care, support). In addition to resources, healthcare providers have knowledge that can connect young AA survivors with specific survivorship resources (eg, support groups, complementary therapies, and nutritional advice), although studies33,34 within this review found that some survivors were not referred. Moreover, approximately one-third of 462 multiethnic cancer survivors in 1 study rated the survivorship information they receive as only “fair or poor.”40 In addition, AA race has been associated with healthcare provider–patient communication deficits.41 Particularly notable in the review, young AA survivors reported lack of information related to sexuality and fertility. Yet, it is unclear what other factors were associated with poor communication. Therefore, future studies must explore barriers to healthcare provider–survivor relationship and communication.

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Mitigation of Psychological and Social Well-being Concerns

In this review, young AA survivors spoke of striving to avoid and/or cope with psychological and social concerns, aiming to return to normalcy. Mitigation of concerns was described via the psychological construct of coping and intervention research. Here, AA survivors described the importance of showing strength throughout illness and maintenance of normalcy. As with other studies of older AA survivors,42 young AA survivors reported spirituality as a primary coping strategy, showing the interrelations between psychological and social well-being and spiritual well-being constructs (positive/spiritual change,24,28–30 spiritual activity,24,28,30 uncertainty25,29). Spirituality must be explored to understand interactions that impact young AA survivorship, develop culturally sensitive scales to measure subconstructs, and inform survivorship intervention development for young AA survivors.

In relation to intervention research and mitigation of concerns, the 6 reviewed articles describing intervention results primarily targeted psychosocial outcomes of anxiety/depression, mood/affect, and sexuality. Importantly, this review revealed improved outcomes in both intervention and attention control conditions. Furthermore, the interventions that were targeted toward AA survivors were more likely to produce significant outcomes than those without consideration of culture. This finding supported the National Comprehensive Cancer Network’s recommendations to adapt existing evidence-based interventions for all cancer survivors.43 Yet, young AA survivors who are mothers and caregivers take on the responsibility of helping others cope with their illness.44,45 Moreover, this review highlighted other concerns such as fear, personal relationship challenges, concerns about fertility, and rearing children that have not been well defined in the literature. Although evidence was found to suggest that survivors cope with assistance of both family and community, the effects of cancer diagnosis on community members are understudied.

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Strengths and Limitations of Review

This integrative review used systematic methods to capture articles that detail aspects of young AA survivors’ psychosocial survivorship concerns. The following discussion details the strengths and weaknesses of methods used in this review.

The integrative review was conducted using Whittemore and Knafl’s16 stepwise method. Selected articles were examined for rigor and relevance before inclusion in the review—of which all were found to have good to high quality (CASP and STROBE scores > 60%). Moreover, the inclusion of both qualitative and quantitative methodologies improved comprehension of the phenomenon.

There are several limitations found throughout the literature reviewed. First, few survivorship articles address young AA survivorship exclusively. Only 1 study28 within this review contained a pure sample of women younger than 45 years; all other studies contained mixed samples of women who were predominately older than 45 years. Second, several articles related to psychological and social quality of life were excluded because they combined data on young AA survivors (without specifying the percentage of young AA survivors) and other cancer survivors. Third, this review analyzed abstracted data from articles with variable underlying conceptual quality-of-life frameworks. Although incorporating the basic understanding of quality of life as a product of physical psychological, social, and spiritual well-being, the operational definitions within this review varied. Other reviews14,37 of literature on AA and young AA survivors at any stage of survivorship cited similar concerns with the validity of findings. Given the limitations, assumptions made from this review may not be truly representative of all young AA survivors. Therefore, there is a need to further explore young AA survivors’ psychosocial survivorship experience and concerns.

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Research Implications

Much of what we know about psychosocial concerns among young AA survivors has not been validated among pure samples of young AA survivors. The paucity of literature describing the psychosocial concerns of young AA survivors necessitates further study. The Table reveals outcomes and pertinent methodological limitations that should be addressed in future studies. Four important considerations for the future of survivorship research among young AA survivors emerged: sampling, remodeling of quality-of-life framework, intervention methodology, and co-survivor perspective exploration.

First, sampling strategies must be considered to further advance research on this population. Representative samples are needed to improve the generalizability of findings to the entire population. Among minorities, cultural competency and establishment of rapport are key features needed to achieve adequate sampling.46 Findings from representative samples of young AA survivors may then be used to develop interventions targeted by age and culture, which may positively impact health disparities in young AA survivorship and add to the breast cancer literature.

Second, this review reveals possible indications for remodeling of the QOL-BC.3 Although the model describes concerns revealed in this review, the interrelation of well-being constructs as they relate to young AA survivors may need to be refined. As indicated, the model shows direct interrelation of psychological well-being with physical and spiritual well-being. However, the direct interrelation between psychological and social well-being is not addressed. Therefore, further research with appropriate sampling should be used to extend the QOL-BC model and validate it among young AA survivors.

Third, future research intervention methodology may be improved by adhering to the psychosocial concerns of young AA survivors. This review noted the importance of spirituality and community in coping with survivorship concerns. Furthermore, the intervention studies within the review that used culturally relevant approaches showed positive outcomes. One recent study47 used community-based participatory research strategies with stakeholders (young AA survivors and their families, healthcare providers and centers, breast cancer organizations) to address psychosocial and reproductive concerns among young AA survivors; its outcomes showed effectiveness in the delivery of educational content. Thus, integrating such strategies may improve cultural relevance and sensitivity, thereby increasing the understanding of survivorship needs and best practices to include in intervention research.46 Moreover, with greater understanding of young AA psychological and social survivorship, future psychosocial distress interventions may be more effective in reducing barriers and health disparities in psychosocial quality of life among young AA survivors.

Finally, this review identified a need to further explore the perspectives of co-survivors. It is widely accepted that cancer survivorship includes others affected by the cancer diagnosis. Given that studies suggest that co-survivors may feel more fearful and stressed than survivors themselves,48 research on this group’s concerns and potential mitigating effects of spirituality should be further explored.

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Clinical Implications

Healthcare providers have the opportunity and responsibility to assist young AA survivors with quality-of-life concerns throughout the entire spectrum of survivorship. Selected studies in this review show that there are facilitators and barriers that influence psychosocial quality of life among young AA survivors. Noting such factors, healthcare providers should use screening tools to identify young AA survivors at a high risk for or experiencing psychosocial distress followed by the initiation of appropriate de-escalation protocols.

Furthermore, the National Academies of Medicine (formerly the Institutes of Medicine) recommended that high-quality, coordinated care for cancer survivors be facilitated by survivorship care plans.49 Care plans should consist of individual treatment plans that provide an infrastructure for continuing treatment, screening, and referral to community resources (eg, support groups, complementary therapies, and nutritional advice).49 Healthcare providers should acknowledge the potential for psychosocial needs in conjunction with traditional survivorship care plans to improve overall survivorship care. With improved survivorship care, young AA survivors may be afforded better quality of life.

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Conclusions

The integrative review synthesized a composite description of young AA survivors’ psychosocial concerns of survivorship within the framework of the QOL-BC model.3 The review revealed key areas of psychosocial concerns among young AA survivors including ongoing anxiety/depression, cognitive changes, and relationships. Identified gaps include paucity of research on the psychosocial concerns of young AA survivors. Findings indicate a need to increase survivorship research on young AA survivors. Researchers, clinicians, and young AA survivors must partner in efforts to understand psychosocial concerns and translate findings into clinical practice, toward the reduction of quality-of-life health disparities among young AA survivors.

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References

1. American Cancer Society. Breast Cancer Facts & Figures 2015–2016. Atlanta, GA: American Cancer Society, Inc; 2015.
2. Morrow PK, Broxson AC, Munsell MF, et al. Effect of age and race on quality of life in young breast cancer survivors. Clin Breast Cancer. 2014;14(2):e21–e31.
3. Dow KH, Ferrell BR, Leigh S, Ly J, Gulasekaram P. An evaluation of the quality of life among long-term survivors of breast cancer. Breast Cancer Res Treat. 1996;39(3):261–273.
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Keywords:

African American; Breast cancer; Quality of life; Survivorship; Young survivors

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