J Cancer Surviv DOI 10.1007/s11764-015-0449-8

REVIEW

Cultural considerations for South Asian women with breast cancer Manveen Bedi 1 & Gerald M. Devins 1,2,3

Received: 31 July 2014 / Accepted: 19 March 2015 # Springer Science+Business Media New York 2015

Abstract Purpose Cultural values shape a woman’s experience of disease and introduce novel stressors that influence psychosocial needs and adaptation. This literature review examines the psychosocial impact of breast cancer in South Asian women, a large group that has received little attention in this regard. Methods We conducted a comprehensive review of the literature published before April 2014 using Ovid MEDLINE, P s y c h I N F O , P u b M E D , C I N H A L , EM B A S E , a n d Sociological Abstracts. We searched for articles about the psychosocial impact of breast cancer in South Asian women. We retained 23 studies for review. Results The literature concerning South Asian women’s experiences identified culturally linked themes that play significant roles in shaping the illness experience; e.g., stigma and breast cancer, low priority of women’s health, collective experience of disease, and religion and spirituality. Conclusion There is a growing need for culturally sensitive care for South Asian women. By understanding the core cultural values and integrating them into clinical practice, Western healthcare providers may improve the quality of care they deliver and help women to extract the maximum benefit. Implications for Cancer Survivors Developing culturally competent support services may enhance effectiveness in addressing the healthcare needs of South Asian women and may serve other ethnic minorities in North America. * Gerald M. Devins [email protected] 1

University of Toronto, Toronto, ON, Canada

2

Princess Margaret Cancer Centre, Toronto, ON, Canada

3

Toronto General Hospital, (9EN-223) 200 Elizabeth Street, Toronto, Ontario M5G 2C4, Canada

Keywords Breast cancer . South Asian women . Culture . Psychosocial impact

Introduction Breast cancer is the most common cancer diagnosis in North American women and the second leading cause of cancer deaths [1, 2]. One in eight women is diagnosed with breast cancer in her lifetime; in the USA, approximately 226,000 new cases were identified in 2012 [2], resulting in an incidence rate of 124.6 per 100,000 across all races [3]. Rates for US Asian/Pacific Islanders are lower (93.6 per 100,000) [3]. By contrast, the rates in India are considerably lower than those reported in the USA (40–50 per 100,000 in women aged 35–69 years) [see 4]. As will become evident later in this review, cultural factors likely play an important role in accounting for these differences. Mortality rates, on the other hand, present less striking disparities; e.g., in US women (all races) mortality is 22.2 per 100,000 [3]; in US Asian/Pacific Islanders, the rate is 11.3 per 100,000 [3], and in India, the rate is estimated at 15–20 per 100,000 [4]. A wide range of treatment options are available for breast cancer [5]; the 5-year survival rate is now 88 % [1]. Despite improved prognosis, women with breast cancer face many psychological stressors, such as fear of death and recurrence [6], depression [7], stigma [8], body image disturbances [9], and compromised romantic life [9]. Culture strongly influences health attitudes and introduces novel stressors. For instance, South Asian women (SA) prefer interacting with female healthcare professionals, which can cause trepidation when they must discuss breast-related concerns with men [10–13]; cultural values of modesty can lead to reluctance about undergoing mammography [13, 14].

J Cancer Surviv

International migration has changed North American Society. In the USA, the Asian population increased 43 % from 2000 to 2010; SAs represented the fastest growing Asian group [15, 16]. People of color represent 16.2 % of the Canadian population; SA is the largest group [17]. The increasing SA population in North America underscores the need to understand the psychosocial impact of breast cancer in this group and to ensure they can access healthcare services as freely as others. As compared to non-Asian populations, SA women in UK, USA, and Canada demonstrate significantly lower uptake of breast cancer screening [10, 18–20]. Uptake rates differ, too, for surgical procedures: Asian women are less likely than their Caucasian counterparts, for example, to undergo breast reconstruction [21, 22]. Migration increases the cultural complexity of resident ethnic groups [23]. Immigrants adapt to their new environments and incorporate elements of the host culture into their culture of origin, resulting in an evolution of values, beliefs, and practices. This phenomenon has been termed glocalization, Bthe interpenetration of the global and the local resulting in unique outcomes in different geographic areas^ [24]. It is important to distinguish between glocalization and acculturation as the latter refers to an assimilation process whereby an individual or a group is absorbed into another culture and thereby relinquishes its original character [25]. To separate the effects of culture from the effects of immigration, this review will adopt a novel approach in examining the ways in which culture influences the health behavior of SAs residing in Asia or North America. We will do so by the following: (a) Reviewing published Western literature concerning the psychosocial impact of breast cancer on SA immigrant women and (b) Where possible, complement this knowledge by examining how the same health concerns are addressed in SA Exploring cultural belief systems involves a two-way knowledge exchange. In relation to healthcare, for example, it not only helps to identify ways to provide more sensitive care to people from culturally diverse backgrounds but also provides valuable lessons to improve the quality of care for the population at large. For the purposes of this review, BSAs^ will consist of people originating from Pakistan, India, Bangladesh, Sri Lanka, Bhutan, Nepal, or Maldives.

Methods Data sources and search A systematic review of the literature was conducted to identify studies pertaining to cultural beliefs about breast cancer, experiences of SA women with breast cancer, and the

psychosocial impact of breast cancer on SA women. We searched six electronic databases, PubMed, Ovid MEDL INE, PsychINFO, CINHAL, EMBASE, and Sociological Abstracts to identify articles published between 1806 and 1 April 2014. Our search strategy included the following keywords or their combinations: psychology/psychological, health attitude, female attitude, breast cancer/neoplasm, South Asian/Indian, India, Pakistan, Bangladesh, Nepal, Sri Lanka, Maldives, and Bhutan. Reference lists of included studies were also reviewed to identify additional eligible studies. Posters and conference abstracts were excluded. Study selection and data extraction Our search identified 1,043 articles, from which duplicates (n=108) were removed. The remaining 935 articles were screened for relevance; we excluded 550 articles pertaining to epidemiology (n=100), genetics (n=175), physiology of cancer (n=82), breast cancer treatment options (n=58), validation of quality of life instruments (n=11), ethnic minorities other than SA (n=76), or diseases other than cancer (n=48). We retrieved full-text articles of potentially relevant studies (n=385) and assessed them for eligibility. We excluded studies lacking an emphasis on culture (e.g., focusing on socioeconomic and demographic factors rather than variables such as collectivism or religion; n=295) and emphasizing screening strategies and awareness of breast cancer independently of culture (n=67). The process reduced the pool of relevant articles to 23 published papers. Only the first author was involved in determining the eligibility of studies for inclusion in this review. Figure 1 presents a flow diagram adapted from the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines [26]. It provides a pictorial representation of the process used to select studies to include in the systematic review. Study characteristics and quality Of the 23 articles selected for review, 17 investigated the experiences of SA women with breast cancer [6, 8, 10, 27–39]; the remainder involved healthy SA women (i.e., no history of breast cancer) and focused on cultural beliefs that influence help-seeking attitudes [11–14, 40–42]. Two dyadic studies focused on SA women and their caregivers [8, 10]. One study comprised a heterogeneous sample, consisting of women with breast or cervical cancer [6]. The majority of these were performed in South Asia: India [6, 35–38], Pakistan [12, 14, 30–33, 39, 41], Bangladesh [40], and Nepal [34]. Table 1 summarizes the main findings and highlights the methodological shortcomings. Only eight were conducted in Canada [8, 11, 13, 27–29, 42] and the UK [10]. None of the studies that satisfied our search criteria were conducted in the USA.

Fig. 1 Flow diagram representing the process of evaluation of studies in the systematic review (adapted from [26])

Identification

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1043 Records identified through database searching

Included

Eligibility

Screening

935 Records after 108 duplicates removed

935 Records screened

385 Full-text articles assessed for eligibility

Records excluded: 100 Epidemiology studies, 175 Genetics studies, 82 Physiology studies, 58 Breast cancer treatment studies, 11 Quality of life instruments studies, and 48 studies on diseases other than breast cancer

Full-text articles excluded: 295 studies lacking an emphasis on culture 67 studies focusing on screening strategies and awareness of breast cancer

23 Studies included in systematic analysis

The majority of articles (19 of 23) employed qualitative methods, such as ethnographic [8] and narrative [27, 29], to delineate the cultural beliefs of SA women with breast cancer [6, 8, 10–14, 27–36, 40, 42]. This approach offers in-depth insights into cultural influences on health attitudes, but the small sample sizes and subjective methods that often characterize qualitative studies limit generalizability and representativeness. Another challenge faced by researchers during oneon-one interviews was the hesitancy of SA women to discuss cultural beliefs and the fear of being considered uninformed [11, 14]. Some techniques that investigators used to overcome these barriers included cultivating rapport with participants [11] and employing research assistants or focus-group facilitators who shared language [8, 11, 27, 28] and ethnicity [11, 29] with the respondents. It can be beneficial to employ focusgroup sessions as compared to individual interviews because participants are less inhibited when interacting with similar others than in an individual interview [43–45]. As a result, focus groups can produce insights that may not come to light in one-on-one interviews [43–45]. The remaining four studies employed quantitative approaches. One employed a 38-item Urdu Familial Social Support Scale (FSSS) and the 20-item Urdu Siddiqui-Shah Depression Scale (SSDS) to investigate familial support and depression [39]. These instruments were developed in Pakistan and proved highly reliable (e.g., FSSS: Cronbach’s alpha=0.97; SSDS: alpha=0.91) [46, 47]. One study relied on author-constructed questionnaires to examine the roles of diverse factors in the surgical decision-making process (e.g.,

demographics, tumor-related variables, and patient satisfaction variables) [37]. Only one study used a mixed-methods approach to examine women’s beliefs about the etiology of breast cancer and screening [41]. One study employed psychological questionnaires to examine factors, such as fear of pain and malignancy, breast disfigurement, family concerns, stress, and depression [38]. Although quantitative studies boast some strengths relative to qualitative ones (e.g., objectivity, attention to psychometric adequacy, and larger sample sizes), other challenges arise, such as select sampling (e.g., limiting religious affiliation to a single group, such as Muslims) [39, 41] and convenience sampling [41]. These problems limit the representativeness of the research findings to the larger SA population and, as a result, limit generalizability. Two studies used purposive sampling to obtain a representative sample with regard to age [11], occupation [11], years of residency in Canada [11], socioeconomic status [11, 41], and religion [11]. This strategy was helpful in representing the diversity that characterizes the SA community in Canada. Table 2 provides information about sample socio-demographic characteristics, country of origin, and stage of cancer for studies included in this review. Differences in cultural beliefs associated with country of origin or stage of cancer are noted when reviewing a study’s findings (i.e., these issues will not be mentioned when no differences are evident). The literature selected for this review provides valuable insights into the core cultural and health beliefs of SA women diagnosed with breast cancer. Because most studies employed

N=200 women (24–63 years; 85 % married; 94.5 % homemakers; no history of breast cancer) and 100 general practitioners (GPs)

Raza et al. [14] Quantitative Self-designed questionnaires

Study type and instruments

N=66 patients, family, and community members, rural Bangladesh

N=140 patients with breast cancer Qualitative (aged 20–65 years) undergoing Interviews treatment

Story et al. [40]

Singh and Verma [35]

Qualitative Focus groups, semi-structured interviews, and community meetings

N=1 Nepalese patient with breast Case study cancer

Braun and Itano [34]

Ramanakumar et al. [6] N=52 survivors (27 breast and 25 Qualitative cervical cancer (34–72 years; Structured interviews, self-developed questionall married with the exception naire of 2 patients)

Sample population

Published articles concerning South Asian women’s experiences with breast cancer

Study

Table 1

Women’s educational background significantly influenced their knowledge of breast cancer 13 % of women feared that having breast cancer might bring disgrace to their families; 4 % believed that it might lead to rejection by their spouses or divorce 34 % of women felt embarrassed to undergo mammography 87 % of the women shared that undergoing mammography were not against their religious and cultural beliefs Women with breast cancer felt guilty, as they were unable to fulfill their familial obligations 20 % of women did not disclose their diagnosis even to close friends due to fear of stigmatization Majority of women (80 %) relied on religion Some believed yoga could help strengthen their mental ability to fight negative thoughts Participant had reduced awareness regarding breast cancer She placed familial responsibilities above her own health concerns Participant felt hesitant in asking questions from her physician as she believed that it may be construed as challenging her physician Some women were misinformed or had no knowledge about breast cancer Participants faced several barriers in accessing healthcare services, such as family’s restriction to attending such services, transportation, and lack of appropriate medical services Participants reported several reasons for delaying seeking medical attention, such as mistrust of the doctor, preference for female physicians, use of alternative medicine, lack of time due to household responsibility, and anticipation of financial burden following diagnosis and consequentially rejection by husband There were significant differences between the perspectives of older and younger women with breast cancer For instance, women above 50 years of age feared death as a consequence of cancer diagnosis and anticipated no positive outcomes of treatment They did have strong social and family support, attributed illness to God, and increased religious participation

Findings

Qualitative interviews were only a small part of a larger study on psychopathological profile of women with breast cancer

Study was conduced in a rural area, where people have lower awareness about breast cancer and healthcare services are not readily accessible

Case study may not be representative of the larger South Asian population

Conducted in an urban area where advanced curative treatment facilities were present. These facilities may be inaccessible for others Small sample size Both these issues limit generalizability and sample representativeness

Conducted with urban population, which limits generalizability to beliefs held by women in rural areas Participants were hesitant during one-on-one interviews and therefore, responses may be biased by perceived expectations

Comments

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N=97 patients (21–70 years) with stage II and III breast carcinoma;

N=80 Pakistani patients with breast cancer (19–74 years)

N=47 women with early breast Quantitative cancer on radiotherapy or on Self-designed questionnaire follow-up were interviewed; stage I or II breast cancer who underwent different treatment modalities

N=30 Pakistani women living with breast cancer

Khan et al. [38]

Nausheen and Kamal [39]

Agrawal et al. [37]

Banning et al. [30]

Qualitative Semi-structured interviews

Quantitative FSSS, SSDS

Quantitative Psychological questionnaires, CAT, PAI, BDI

N=32 patients with breast cancer Qualitative (31–70 years; 78.1 % married; Open-ended questions 34.3 % housewives), 40.6 % simple mastectomy, 50 % radical mastectomy, 6.2 % lumpectomy

David et al. [36]

Study type and instruments

Sample population

Study

Table 1 (continued)

As for younger women (

Cultural considerations for South Asian women with breast cancer.

Cultural values shape a woman's experience of disease and introduce novel stressors that influence psychosocial needs and adaptation. This literature ...
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