The psychosocial experiences of breast cancer amongst Black, South Asian and White survivors: do differences exist between ethnic groups?

Very little UK‐based research has examined breast cancer‐related experiences of Black and Minority Ethnic populations, and we do not know whether the psychosocial impact of diagnosis and treatment in this group is any different to that of White women. Therefore, this study examined similarities and differences amongst Black, South Asian and White breast cancer survivors.


Introduction
Breast cancer is the most common type of cancer worldwide. The latest United Kingdom (UK) data shows that more than 50 000 women were diagnosed with the disease in 2011 [1]. An extensive body of research has documented the various psychosocial issues associated with its diagnosis and treatment, including depression, anxiety, body image issues, variations in support networks and social stigma associated with the disease [2,3], all of which can have a profound impact on patients' quality of life. The majority of this research has been conducted with White women and very little attention has been paid to the experiences of Black and Ethnic Minority (BME) women, particularly in the UK [4].
The most recent available figures, based on the 2011 Census, show that more than 8 million people living in the UK are from ethnic minority groups [5]. Black and South Asian populations represent the largest ethnic minority communities (8.8%). The need to conduct research on BME populations is reinforced by the UK's increasingly diverse multi-ethnic society. Researching Black and South Asian women's experiences of breast cancer is important for two reasons. First, these women may be influenced by elements of their cultural backgrounds (such as beliefs, values, language and religion) and, as a result, their healthcare needs may differ to White women's. Second, differences exist in the epidemiology of the disease in BME and White women. For example, UK data suggest that although Black and South Asian women have a lower incidence of breast cancer, they tend to be diagnosed at a younger age, are more likely to be diagnosed at an advanced stage and with more aggressive forms of the disease than White women [6][7][8]. These differences suggest that BME and White women's experiences of breast cancer may differ.
In recent years, a small number of studies exploring BME women's experiences of being diagnosed and treated for breast cancer have been reported [9][10][11][12][13]. These UK-based, Canadian-based and North American-based studies have highlighted the relevance of socio-cultural norms, behaviours and beliefs in shaping BME women's experiences. For example, Gurm et al. [10] interviewed 20 Canadian Punjabi breast cancer survivors (BCS) and found that the influence of their cultural background meant they felt obliged to resume daily chores and domestic responsibilities immediately after treatment. Many wanted to seek support from other BCS but felt isolated due to cultural pressures to keep personal issues private. Women's distress was further exacerbated by judgemental and insensitive comments they received from uneducated and older generation community members. Receiving information and talking to others in their own language were important to these women, as was spirituality and religion in helping them to manage the experience. The only two qualitative studies conducted within the UK to date also highlight the importance of social support, spirituality, body image (including concerns regarding limited availability of suitable wigs and skin-coloured breast prostheses), and cultural issues (such as taboos around cancer and language issues, including a preference to communicate with healthcare professionals and other BCS in their mother tongue) [9,12].
While there is a limited, albeit growing body of research exploring this phenomenon, these studies have mainly adopted qualitative methods, such as individual or focus group interviews. These have generated descriptive and detailed data that can provide in-depth understanding of a particular research question [14]. However, sample sizes tend to be small, as the focus is on understanding experiences rather than generalising to the wider population [15].
Quantitative research into the psychosocial impact of breast cancer in relation to ethnicity has included American-based populations of Black, White and/or Hispanic participants [16][17][18][19]. For example, Culver et al. [17] compared coping patterns between Black, White and Hispanic BCS, and found that religion was a more commonly used coping strategy amongst BME groups. Quantitative research in the UK, particularly amongst South Asian BCS, is extremely sparse [18,20]. The available comparative studies show that breast cancer experiences differ between White and BME women, where BME women tend to report the poorest outcomes [18,20]. Further UK-based quantitative research is needed in order to gain a better understanding of the psychosocial impact of diagnosis and treatment of breast cancer amongst BME women, and how this may be similar or different to the experiences of White women. The majority (87.9%) of the UK population are White [21]. Comparing the experiences of BME and White BCS can help to identify whether changes to practice and/or policy are needed to ensure all patients are provided with appropriate care and support. The need for such research has been highlighted in the most recent government policy, aimed at improving cancer outcomes in order to reduce health inequalities and improve BME patients' cancer experiences [22]. Therefore, the aim of this study was to compare the psychosocial impact of breast cancer amongst Black, South Asian and White BCS living in the UK.
This study was part of a larger mixed methods research programme exploring the psychosocial impact of breast cancer diagnosis and treatment in Black and South Asian women [23]. This included three qualitative studies that highlighted how psychosocial and cultural factors influence BME women's experiences of breast cancer, including psychological functioning, support, body image concerns and beliefs about cancer. These findings (discussed elsewhere [12,24]) consequently informed the development of the present study. The use of qualitative findings to inform quantitative research is a useful strategy in developing high-quality survey questions [25]. Based on the research highlighted earlier, it is hypothesised that BME women's experiences of breast cancer will differ to White women's. Specifically, Black and South Asian BCS will report greater levels of anxiety and depression, poorer levels of quality of life, greater body image concerns, and be more likely to turn to religion for support than White women.

Method
Design A quantitative, cross-sectional design was adopted. The design of the questionnaire was based on findings from the previous qualitative studies and published literature. Relevant standardised measures were selected for the questionnaire, with the exception of 'support', which was measured using a self-constructed question (see subsequent details). The rationale for the choice of measures and design of the questionnaire is described in detail elsewhere [23].

Participants
Participants were recruited through breast cancer support groups and National Health Service (NHS) Trusts (hospitals) in cities with a high BME population in England, namely, Bristol, Birmingham, London and Coventry. Inclusion criteria included English-speaking/ literate women, aged 18 and above, of White, Black or South Asian ethnicity, with a diagnosis of primary breast cancer and who were between 6 months and 5 years post diagnosis. Women still undergoing treatment and/or diagnosed with secondary cancer were excluded. Women who were not English speaking/literate were excluded as it was not possible to translate the questionnaire in the various South Asian languages that exist, and doing so could affect the psychometric properties of the measures.
A total of 581 (481 via the NHS and 100 via support groups) questionnaires packs were sent to potential participants; 185 women completed the questionnaire, giving a response rate of 31.8%. However, 12 of these responses were omitted from analysis as they did not meet the eligibility criteria (two did not report their ethnic identity, four described their ethnic identity as East Asian (e.g. Chinese), three reported having breast cancer, which exceeded the 5-year time frame, and three reported having secondary breast cancer). Therefore, data from a total of 173 BCS were available for analysis; 147 of these participants were recruited through the NHS and 26 through support groups. Support group facilitators and NHS staff (breast care/research nurses) were contacted by the researcher to determine their interest in supporting recruitment for the study. Those interested were sent questionnaire packs to hand out to any potential participants. Alternatively, eligible participants could contact the researcher directly for an information pack. Support group facilitators and NHS staff identified eligible participants through their databases or during support group meetings or follow-up consultations. The questionnaire pack contained a letter of invitation, an information sheet, a questionnaire and a stamped addressed envelope for its return to the researcher. Consent was indicated by returning a completed questionnaire.

Measures
Self-reported demographic and breast cancer information: The following information was collected: age, city/town of residence, employment status, marital status, education background, ethnic identity, religion, type of breast cancer, time since diagnosis and treatment(s) received.
Quality of life was assessed by the Functional Assessment of Cancer Therapy-General [26], which consists of 27 items, with four sub-scales: physical, social/family, emotional and functional well-being. It is based on a 5-point Likert scale ranging from 0 (not at all) to 4 (very much). Each sub-scale can be summed to give an overall quality of life score (score range 0-108); the higher the score, the better the quality of life. Internal consistency (as measured by Cronbach's alpha): physical well-being (α = 0.88), social/family well-being (α = 0.87), emotional well-being (α = 0.76) and functional well-being (α = 0.90).
Psychological functioning was measured with the Hospital Anxiety and Depression Scale [27], which consists of 14 items on two sub-scales (anxiety and depression). Each item is rated on a 4-point Likert scale ranging from 0 to 3 (score range: 0-21); high scores indicate higher distress levels. Internal consistency: anxiety (α = 0.84) and depression (α = 0.83).
Body image was assessed via the Body Image after Breast Cancer Questionnaire [31], which consists of 53 items, with six sub-scales: vulnerability, limitations, body concerns, body stigma, transparency and arm concerns (the latter three sub-scales were used in this study because the items pertain to the relevant body image issues that were identified as particularly pertinent to participants in the previous qualitative studies that were part of the first author's programme of research). Responses are given on a 5-point Likert scale ranging from: 1 (strongly disagree) to 5 (strongly agree) or 1 (never/almost never) to 5 (always/almost always). A high score indicates greater body image concerns (score range: 1-135). Internal consistency of the sub-scales: body stigma (α = 0.89), transparency (α = 0.78) and arm concerns (α = 0.77).
Support: A list of potential sources of support (family, husband/partner, friends, work colleagues, religion/spirituality, cancer support groups, community groups and healthcare professionals) were provided. Participants were required to select all the sources that provided them with support. Response options were yes (1) and no (0). The aim of this measure was to determine who provided participants with support. Standardised instruments such as the short form Supportive Care Needs Survey (NS-SF34 [32]) and the Sources of Social Support Scale [33] were considered but did not meet the aim of what we wanted to assess. For example, the Sources of Social Support Scale measures type of support (e.g. emotional, informational and practical support) received from husband/partner, adult women in the family, other family members, friends and healthcare professionals. It does not consider other sources such as work colleagues, community groups or support groups. Therefore, a self-constructed item was used for this study. Furthermore, a single item was used to keep the overall questionnaire brief in order to avoid over-burdening participants.

Data analysis
A minimum of 120 participants (40 in each group) were needed in order to run appropriate statistical tests. This number is based on Cohen's [34] values of alpha (0.05), power (0.80) and a medium effect size (0.5).
Data were entered and analysed using the statistical program, SPSS (version 19). Descriptive statistics of the demographic and breast cancer information were performed for the overall sample and for each ethnic group (Tables 1  and 2). One-way analysis of variances (ANOVAs) 2 and chi-square tests examined group differences for each variable (Tables 3 and 4). Significant results were further examined using Tukey's post hoc tests and cross tabulations, as appropriate.

Descriptive data
Of the 173 participants, 80 (46%) described their ethnic identity as White, 53 (31%) as Asian or British Asian (42 Indian, 10 Pakistani and 1 Bangladeshi) and 40 as Black or British Black (35 Black Caribbean and 1 Black African). Participants' ages ranged from 32 to 81 years (mean age = 58.0 years; SD = 9.82). Time since diagnosis ranged from 6 to 60 months (mean = 29.2 months; SD = 14.2). The majority had undergone surgical and adjuvant treatments.

Inferential data
Comparisons to other normative data are detailed elsewhere [23].

Quality of life
One-way ANOVA showed a significant difference on overall quality of life between the ethnic groups (F (2, 84.93) = 8.59, MSE = 319.74, p < 0.001), where White women reported a better quality of life than South Asian women (p < 0.05).

Beliefs about cancer
Significant differences were found for ILOC, CLOC and GHLOC between the ethnic groups ((F (2, 164) = 3.62, MSE = 31.73, p < 0.05), (F (2, 163) = 6.58, MSE = 45.05, p < 0.05) and (F (2, 164) = 35.64, MSE = 76.55, p < 0.001), respectively). South Asian women reported higher levels of ILOC compared with the White women (p < 0.05). South Asian women reported higher levels of CLOC compared with the White and Black women (p < 0.05). South Asian and Black women reported higher levels of GHLOC compared with the White women (p < 0.05). OPLOC did not differ significantly between the ethnic groups (p > 0.05). Cell counts (n) and percentages (%) are reported for ordinal data; mean and standard deviations (in parenthesis) are reported for interval data. 1 High school (aged 11-16 years) qualifications are equivalent to General Certificates of Secondary Education; college level is equivalent to A-level/diploma; university level includes advanced or higher diploma (HND), undergraduate degree (BSc/BA) or postgraduate degree (MSc/MA/PhD). NB: Total percentages will not always equal 100 because figures have been rounded up to the nearest whole number.

Body image
There was a significant difference on body image scores reported by the groups (F (2, 165) = 9.84, MSE = 253.76, p < 0.001); Black and South Asian women reported greater levels of body image concerns than the White women (p < 0.05).

Discussion
Our findings show that BME women's experiences of breast cancer are different to White women's experiences, and further support existing research that has examined ethnic group differences amongst cancer survivors [18,20,35]. Group differences were predominantly between White and South Asian women; South Asian women reported higher levels of anxiety, depression, internal and fatalistic beliefs pertaining to cancer, more likely to turn to religion for support, and poorer quality of life than White women. South Asian and Black women reported having a poorer body image and held a greater belief that God was in control of their cancer than White women.
These findings can be explained by cultural differences that exist between different ethnic groups. The coping with breast cancer and ethnicity literature has consistently found that ethnic minority women rely more heavily on religion as a source of support compared with White women [16,17]. The present findings corroborate with those findings and also show that Black and South Asian  Cell counts (n) and percentages (%) are reported for ordinal data; mean and standard deviations (in parenthesis) are reported for interval data. NB: Total percentages will not always equal 100 because figures have been rounded up to the nearest whole number. *Participants had more than one treatment. women held stronger beliefs that God was in control of their cancer. South Asian women were also more likely to attribute their cancer to chance. A fatalistic attitude such as 'it's written for me' and the belief that 'God is in control of the cancer' can easily be interpreted to mean the same thing, as concepts such as fate are often perceived to be influenced by God [12]. Within the western society, cancer as an illness is feared and is almost always associated with negative connotations such as killer and death, especially if the illness is not well understood. Additional cultural taboos and stigma related to cancer exist in BME communities. For example, modesty and honour are highly valued in these cultures, and a great emphasis is placed on the woman (particularly in the South Asian communities) to maintain the family's honour and reputation [36]. Therefore, it is not considered appropriate to openly talk about an illness that can compromise the family's status and bring shame upon them. Another common belief in the BME communities is that cancer is seen as a form of punishment from God, and consequently, women are often subjected to negative comments from their community members who insinuate they must have done something bad to deserve the cancer. It is possible that cultural taboos and stigma of cancer resulted in South Asian women keeping the cancer private. Not openly talking about it may have contributed to their high levels of anxiety, depression and poor quality of life, which can also explain why South Asian women were least likely to seek or receive support from their community groups. However, the findings show that Black women were more likely to seek/receive support from their community groups. This could be due to the fact that Black communities have a tendency to hold fictive kinships (regarding people as family without being related by blood or through marriage) with friends and church members, with whom they feel open to share their experiences and rely on for support [37]. This can aid our understanding as to why more Black women in the present study received support from their community.
Research has also found that BME women (particularly first generation immigrant women) tend to have a limited understanding and awareness of breast cancer, particularly those who are less educated and less acculturated to the western ways of living [38]. This can consequently result in a later diagnosis of cancer whereby the disease may be more advanced and therefore require more aggressive forms of treatment such as mastectomy or chemotherapy. A greater number of BME women in the present study underwent a mastectomy, received chemotherapy treatment and experienced lymphoedema compared with White women; all of which can have a negative impact on one's quality of life. A loss of breast(s) and/or hair are also more likely to instigate higher body image concerns and can explain why the BME women in this study reported greater body image concerns than White women. As well as instigating body image concerns, lymphoedema can be painful and limit physical activity, which can have a negative impact on one's quality of life. Furthermore, culturally suitable wigs, breast prostheses and lymphoedema sleeves are not as readily available for BME women, which can further add to women's body image concerns [9,12,13].
The design of the study warrants discussion. A particular strength is the large sample size, allowing appropriate statistical comparisons to be made between BME and White BCS. However, as only Black and South Asian participants were recruited, the findings are not representative of other BME groups such as East Asian or Middle Eastern populations. It is possible that the experiences of women in these population subgroups may differ from not only White women but also with Black and South Asian women. Further research is needed to explore these issues amongst other BME populations. Another limitation is the exclusion of non-English-speaking groups. It is possible that their experiences and needs may differ to English-speaking BME women. This also warrants further research.
It is also important to discuss the measures that were used for this study. The majority of measures have been assessed on White, English-speaking populations [39]. Consequently, some measures may not reflect the concerns and problems that may be present in BME samples. Therefore, when researching BME groups, it is important to ensure that measures selected are appropriate to the sample being assessed, and include and/or develop culturally sensitive measures to enhance understanding of a particular group. However, this can be challenging when researching different ethnic populations, particularly when making comparisons between groups.
It would also be beneficial to translate measures into other languages. For example, the Hospital Anxiety and Depression Scale has been validated in Urdu [20], and the Mental Adjustment to Cancer scale has been validated amongst patients of other ethnicities and countries [40,41]. For the current study, it was not possible to translate measures into other languages as the time constraints of the project made it impossible to translate the surveys into the many South Asian languages that exist.
The findings of this study show that differences exist in women's breast cancer experiences. This has implications for health care professionals to be aware of the differing healthcare experiences and needs of BME patients. The need to improve cancer care by reducing inequalities has been highlighted by the Department of Health [42] and National Cancer Equality Initiative (NCEI) [43]. While cancer services have improved in recent years, the care and support provided to BME groups is still varied, suggesting that more needs to be done to ensure that the NHS is equipped to meet BME patients' cancer needs from a cultural perspective [22].

Conclusion
This is one of very few UK-based studies to compare psychosocial issues amongst BCS from different ethnic groups. These findings add to the current literature to not only show how breast cancer experiences differ between ethnic groups but also why this may be the case, providing valuable information for healthcare professionals to help improve ethnic minority women's breast cancer experiences.