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“So, when a woman becomes ill, the total structure of the family is affected, they can’t do anything…” Voices from the community on women with breast cancer in India: a qualitative focus group study

Abstract

Background

Psychological symptoms are common in women with breast cancer and profoundly affect their role in the family and wider community, varying across cultural backgrounds. Breast cancer is becoming the most common cancer among women in India. We aimed to understand the cultural context within which Indian women with breast cancer living in India, experience psychological concerns from the perspectives of healthcare professionals, volunteers and church members.

Methods

Five focus groups were conducted in South India (clinicians (2 groups)) lay public (3 groups). A topic guide was explored: understanding of breast cancer, experiences of patients with regard to diagnosis and treatment and psychological impact. Groups were audio-recorded and verbatim transcribed. Lay groups were conducted in Malayalam with translation and back-translation. Transcripts were subjected to thematic analysis using “cultural task analysis” as a lens for analysis.

Results

Forty-five (oncologists (5), nurses (10), church members (16) and community volunteers working in a palliative care unit (14) participated. Three major themes psychosocial issues related to diagnosis, psychosocial impact of cancer treatment and coping with diagnosis and treatment and nine subthemes emerged from the two groups. All described psychological impact on women with breast cancer including body image, change of family role and their need for support. Family and faith were recognised as the major framework providing key support but also significant stress. Clinicians were also concerned about financial implications and issues around early cancer detection. Laypeople and nurses also commented that poor communication and lack of empathy from doctors aggravated distress.

Conclusion

Clinical and lay communities were aware of the widespread psychological impact affecting women with breast cancer which are amplified by the patriarchal context within which they live, which extends into clinical practice. Family and faith provide a strong support structure and are a cause of distress, as core roles and expectations are challenged by this disease of womanhood.

Background

Breast cancer is the most prevalent cancer among women globally. Psychological distress is common and is related to the impact of this disease on the woman’s role in the family and wider community [1,2,3]. A recent systematic review [2] found that Indian women with breast cancer, living in India or as immigrants in Canada experienced distress, both ameliorated and exacerbated by similar cultural issues. India is the world’s second-most populous country, with a rich culture including patriarchy, strong family systems and religious beliefs. The role of women in society has changed over time from a high position during the early Indus Valley civilisation [4, 5] to one of submissiveness to father, husband and son [6, 7]. A joint family system where several married couples and their children may live in the same house [8] has persisted and is further reinforced by urban-industrial civilisation [9]. Four major religions (Hinduism, Buddhism, Sikhism, Jainism) originated in India alongside indigenous faiths and tribal creeds which have survived for centuries. The influence of religion is embedded within the culture and “travels” with the person [2], influencing the responses and behaviours of Indian women anywhere in the world.

Breast cancer prevalence has been rising steadily in India, where it is currently the most common female cancer (25 to 31%) [10]. Unfortunately, most breast cancers are detected at a late stage; 50% are locally advanced at diagnosis. This is probably due to lack of awareness, a non-existent breast cancer screening programme, sociocultural barriers like the Purdah system and an unwillingness to expose themselves or subject themselves to breast examinations and imaging [11]. The primary modality of treatment is surgery, radiotherapy and chemotherapy, and is delivered through public sector hospitals or funded through private- and employer-funded insurance, personal out-of-pocket fees, community-based and non-profit organisations, and by external funds from loans and grants [12, 13]. A recent qualitative study among women with breast cancer [3] highlighted the psychological distress in Indian women in relation to prevailing societal attitudes regarding the role of women as wife, mother and the carer of older in-laws and hair loss as a particular source of distress. Greater support from the community and other social networks are shown to improve the quality of life of breast cancer patients after diagnosis [14] and their views will help us to understand the cultural context within which Indian women experience breast cancer, which is important for clinicians involved in their care.

We therefore explored this cultural context for Indian women living with breast cancer in one region in India from the perspectives of healthcare professionals, volunteers and church members.

Methods

Study design

We conducted a qualitative study using thematic analysis [15] as a theoretically flexible approach. Five focus groups (one group each of doctors, nurses and members of a local church’s women’s group and two groups of volunteers working with palliative care patients) gave data between October 2015 and January 2016. Doctors and nurses were selected to get an in-depth understanding of the perceptions of a healthcare worker with regard to breast cancer while experiences from laypeople were obtained from trained palliative care volunteers, who are part of neighbourhood network programme in palliative care [16]. A faith group is important because faith is such a structural influence in the state and the church group was selected as a convenience sample as it was the local church of the researcher (S.D.).

Ethics

Institutional and ethical approvals (Research Ethics Committee, Hull York Medical School, UK) were gained prior to data collection.

Setting

A single tertiary hospital, a single Christian church and a community palliative care unit are the volunteer group in the South Indian State of Kerala.

Participants, invitation and sampling

Eligible participants who were able to give written informed consent were approached from (i) Department of Oncology, doctors and nurses; (ii) Department of Palliative Medicine, community-based volunteers and (iii) members of a local church’s women’s group.

Convenience samples for each group were obtained. Doctors were invited by S.D. and nurses by the Director of Nursing. Members of the church group were invited through the parish priest. Community volunteers were invited by palliative care staff. Participants gave written informed consent for audio-recording, use of anonymised quotes and use of data in future research.

Data collection

Five semi-structured focus groups of approximately 45 min were conducted (S.D., with C.V., C.S.) using a topic guide to explore understanding of breast cancer, experiences of patients regarding diagnosis and treatment and psychological impact (Table 1).

Table 1 Focus group discussion topic guide

Clinicians’ groups were conducted in English and lay groups in Malayalam (regional language), recorded and transcribed. Those in Malayalam were translated into English (S.D.) and back-translated (C.V.). There were no study withdrawals.

Data analysis

Transcripts and field notes were anonymised and checked for accuracy. NVivo 12 software was used to manage data. Data were subjected to thematic analysis [15] using “cultural task analysis” [17] as a lens, which describes how cultural nuances like patriarchy and the role of women in the family can affect how they experience the disease [18, 19] and make decisions with regard to treatment.

The following steps were conducted: (i) data familiarisation; (ii) line-by-line coding: S.D., C.V. and M.J. independently coded a group transcript and agreed to a code list, whilst allowing new codes to present; (iii) coding of all transcripts (S.D.); (iv) discussion (S.D., M.J.) to describe developing patterns of commonality (themes or convergence) and (v) agreement of analytic themes through further discussion (S.D., M.J.) ensuring distinct themes with consistent data [15]. Analysis was performed continuously; issues raised influenced subsequent group discussions. Data saturation was considered adequate when no new codes were emerging.

Analysis in English allowed the non-Indian researcher (M.J.) to participate helping to address potential challenges in reflexivity (S.D. and C.V. were Department physicians (palliative care, psychiatry) and both from the culture involved). M.J. is a UK clinical academic palliative physician.

Results

Participants

Characteristics of the 45 participants are summarised in Table 2.

Table 2 Sociodemographic characteristics of participants

Findings

Three major themes psychosocial issues related to diagnosis, psychosocial impact of cancer treatment and coping with diagnosis and treatment and seven subthemes emerged from the groups. We present the findings below with quotes given in Tables 3, 4 and 5 including other quotes supporting the results.

Table 3 Theme 1: Psychosocial issues related to diagnosis
Table 4 Theme 2: Psychosocial impact of cancer treatment
Table 5 Theme 3: Coping with diagnosis and treatment

Theme 1: Psychosocial issues related to diagnosis (Table 3)

  1. a)

    Recognition of psychological distress

    All groups felt that the psychological symptoms in women can start at diagnosis or any time during treatment and can be triggered by various factors including treatment-related body image changes on their sense of womanhood, fears of social stigma and thoughts of being abandoned by their spouse (quote 1).

    These fears could affect behaviour and relationships, with sometimes extreme consequences (quote 2), aggravated by insufficient information or the opportunity to ask questions. Whilst some doctors acknowledged the need to address these symptoms and that they did not assess psychological distress systematically, most considered psychological distress would settle with tumour-related treatment alone (quote 3). If there were persistent psychological concerns, doctors felt unable to provide mental health support due to a perceived lack of time and an apparent choice to believe it is not their responsibility; these issues are just “part of their [patient’s] life” (quote 4). However, some commented that a dedicated team to provide psychological support or trained personnel to help them through the process of explaining the various modalities of treatment to the patient would help them address these issues better.

    Nurses acknowledged that short consultation times did not permit doctors to go into detailed support, but they felt doctors could improve their communication within their current resources. For example, one extra sentence, e.g. to reassure that hair would regrow following chemotherapy (quote 5) or to ask the nurse to arrange support from another patient, could help the patient significantly.

  2. b)

    Delayed diagnosis

Clinicians were concerned that cancer is usually detected at an advanced stage, due to the lack of universally accessible screening programmes (quote 7). This also concerned the lay groups who felt that such a screening system was a public health priority (quote 8). They had witnessed suffering due to late presentation and called for screening to be available, irrespective of ability to pay. Women also tended to ignore or hide their health needs because of reluctance to be examined by a male doctor and/or putting the needs of their families above their own (quote 9).

Stigma and false beliefs regarding cancer aetiology and diagnosis can stop women from seeking care. Most families still practiced arranged marriages and news of cancer in a family can seriously affect the marriage prospects of their daughters (quote 12). Delayed diagnosis may also be because the family is unable to afford the investigations or time away from work. Sometimes, they have to travel miles to attend an affordable cancer hospital, taking considerable time off work, thereby adding to their financial worries (quote 13). This can sometimes affect treatment decisions as women try to hide the news of cancer recurrence from the community by refusing treatment (quote 14).

Theme 2: Psychosocial impact of cancer treatment (Table 4)

  1. a)

    Experience of treatment

    There were concerns regarding the lack of national standard guidelines for treatment delivery (quote 15). The doctors felt that breast conservation may not be offered assuming that women are not bothered by how they look or the traditional Indian dress will cover any cosmetic disadvantage due to mastectomy (quote 17).

    However, the lay groups felt that breast removal does affect the women psychologically and highlighted the need for counselling (quote 18). They considered “long hair and breasts as the yardsticks of womanhood”. They also mentioned the crucial role of women in the Indian family and how there is a “disruption of the rhythm of family in all aspects”.

    Clinicians were very aware of and concerned about the financial impact of cancer treatment on the families of their patients (quote 20). Treatment side effects and body image issues are a major concern. Some patients develop lymphoedema, which the nurses felt could have been avoided/ameliorated by regular exercise and better post-operative care (quote 21), but which would carry additional costs for the family.

  2. b)

    Experience of medical care

    The lay groups expressed mixed opinions about the empathy and communication skills of the doctors that they have encountered. One member from the church group described how the “doctor gets angry when asked any questions” and complaints to the hospital management were apparently unaddressed (quote 26).

    Participants were very vocal about the financial gain of private hospitals, perceiving this to be to the detriment of patients (quote 27). They also reported lack of empathy and compassion from doctors except those working in palliative care (quote 29). The community-based volunteers worked with a public health palliative care unit felt that the government-funded hospitals had improved and were satisfied with the care they had witnessed (quote 30).

  3. c)

    Solutions

Note, solutions are also related to some aspects of themes 1 and 3, but are presented here. Solutions were suggested at a number of levels:

  1. I.

    National: Screening programmes and public health education would address the public perception that breast cancer was usually incurable and encourage women to present earlier. Implementation of national cancer treatment guidelines would improve confidence that management was not primarily profit driven (quote 31).

  2. II.

    Service: Increased resources to employ other clinical disciplines trained in mental health support such as social workers. Access to basic mental health and communication skills training for all clinicians and the development of peer support groups/buddy systems would also be helpful (quote 32). Inter-disciplinary team working, currently rare, would address some of the unhelpful role self-perceptions (e.g. “it’s not my job”) perpetuating unempathetic consultations by doctors.

  3. III.

    Individuals: Timely, frank and honest conversations with the patients and family were needed. Lack of time was recognised as a challenge, but should not be seen as an excuse to abdicate responsibility. The need for doctors, in particular, to have an understanding of the impact of treatment side effects and to show empathy was highlighted. For example, acknowledgement of the distress due to hair loss and reassurance of re-growth would be a simple and non-time-consuming (quote 35).

Theme 3: Coping with diagnosis and treatment (Table 5)

  1. a)

    Response to illness

    Some women adapted to their different circumstances, finding ways to continue with their lives relatively undisturbed (quote 39). However, others were greatly affected by the disease and treatment. The distress caused by a cancer of such a key female organ, the distress related to breast surgery and its impact on the spousal relationship, in the context of the role of the Indian woman, was appreciated (quote 40).

  2. b)

    Sources of support

Family, children and motherhood were seen as a strong motivation, a means of coping and provided something to live for and the reason to undergo treatment (quote 43), with an implied obligation to undergo treatment for the sake of the family. In general, doctors viewed Indian women as self-sacrificing and nurturing mothers who ignore their own health while they look after the family. Faith and religion were seen as strong sources of support by all participants irrespective of their own religion, with an assumption that faith would make patients stronger and help them think positively (quote 44), though a thought was shared about a woman refusing surgery in view of “organ being given by God which cannot be cut” (quote 51) similar to faith fatalism.

However, some women feel unsupported by family when unable to carry out their expected role due to illness and feared spousal abandonment (quote 47). This may be complicated by cultural expression, or lack of expression, of emotion. Indian men rarely demonstrate emotions openly which may then be misinterpreted as being unsupportive (quote 48).

Congruence and dissonance between professional and lay groups (Table 6)

Table 6 Areas of agreement, disagreement or silence between the groups

In general, professional and lay groups agreed that psychological distress was significant, affecting treatment choices and responses to the disease. Both lay groups identified the vicious cycle of late presentation and stigma associated with erroneous health beliefs as being aggravated by the lack of national screening and public education programmes. All groups were quick to identify family and faith as strong sources of support. However, all admitted that these could also cause significant distress.

The main differences between the professional and lay groups centred on responsibilities and solutions. The doctors recognised the distress although, apart from some exceptions, did not address this, denying responsibility, skills or time. Their solutions were more time and additional trained staff. Other participants felt that the doctor did have an important role in providing empathic communication, and nurses felt that even small changes within resources would make a big difference to patients. Lay groups were suspicious of financial motivation for treatment, with poor confidence that treatment provided was standard, aggravated by poor information giving by doctors. However, clinicians were themselves distressed at the financial burden placed on patients and their families by treatment costs.

Discussion

When viewed through the lens of the “cultural task analysis” [17], the cultural nuances within which an Indian woman experiences her breast cancer strongly affect her psychological experience. This was particularly seen in relation to patriarchy, also visible within the clinical teams; the role of women and family and faith. Significant distress affected how women presented with and responded to breast cancer, accessed support and navigated family role changes. A vicious cycle of erroneous health beliefs, late presentation and a lack of national screening programme was identified. Family and faith were considered a major support by all, but the impact of breast cancer on a woman’s primary role in the home was seen as particularly hard, adversely affecting the whole family. Therefore, although the family provided support, it also caused distress if the woman, or those around her, felt she was unable to fulfil her priority role, aggravated by a lack of displays of reassuring affection from male relatives. A range of solutions was suggested, from national programmes of education and screening to better care—especially regarding empathic clinical communication skills, and local peer “buddy” support. Nurses and lay groups felt doctors could communicate better even within time constraints, but doctors—good examples of care notwithstanding—were constrained by a bio-medical focus, lack of time and other team resources, e.g. social workers, appearing to choose to view the women’s distress as the women’s responsibility.

Diagnostic delay and late presentation (about half of newly diagnosed breast cancers in India [20, 21]) contribute to a worse prognosis and a belief that breast cancer is incurable. This fuels delayed presentation and diagnosis. The lack of an organised screening programme [22] was seen as a key factor in this vicious cycle. Indian women, particularly older women [23], despite reporting poorer health than men, have lower rates of healthcare utilisation, with fewer hospitalisation and outpatient encounters [24]. Indian women living in rural and peri-urban neighbourhoods have poor knowledge of breast cancer, with a minority practicing self-examination and none presenting for clinical breast examination [25]. Immigrant Indian women living in the West who are more educated and acculturated appear to engage better with the breast cancer screening services [26, 27]. National programmes to increase awareness with affordable (free to patient) screening would foster early presentation.

Stigma was highlighted by all, contributing to delayed diagnosis, affecting how women coped with the disease, affected treatment decision and from other work, a lack of active involvement during medical encounters or decision-making [28]. Women usually have arranged marriages and have repeated reminders of the importance of the birth of a first child within the first year of marriage [29]. These philosophies can affect the health-seeking behaviour of women, with some refusing treatment because of fears of infertility and stigma, with hair loss seen as a “hallmark” of cancer. Women appear to be particularly vulnerable to social stigma and seem to be a factor in treatment delay in other conditions like tuberculosis [30].

The patriarchal culture influences the way women respond to illness [31]. This is consistent with other reports from patients from a similar cultural background [3]. Incomplete information and the lack of opportunity to ask questions have been noted; women are usually accompanied by a “male carer who did all the talking” and remained passive during consultations [28]. Exclusion from decision-making was a cause of psychological distress of Indian women in Canada [32], exacerbated by language barriers. Our doctor participants considered that a well-informed patient coped better, but prevailing attitudes keeping the doctor at top of a hierarchy, seems difficult to change and even suggestions from nurses (often women) similar to ones from our study regarding communication may neither be given nor received easily.

The collectivist family [33] was considered as strong sources of support. However, consistent with our previous work [2, 3], a “two-edged sword” was described whereby some women felt “unsupported” and worried particularly about “spousal abandonment”, aggravated by a cultural reluctance of Indian men to show emotion. Similarly, faith practice is described as a major source of strength and resilience consistent in various other cultures [34, 35]. However, as with our previous work, issues in relation to faith can also be a cause of distress [2, 3].

Our study gives insight into the experiences in both the public and private healthcare sector; our clinicians were employed in a private institution; volunteers were attached to a government community team; church members had a mixed experience but mainly accessed private care. Church group members raised concerns about the influence of financial drivers for institutions, aggravated by the lack of national treatment guidelines, and the poor quality of medical care regarding compassionate communication and information giving. Reports of corrupt and irrational practices including referrals for unnecessary investigations and practice of non-evidence-based treatment for commercial gain are widely known in medical circles, but public dialogue on this is lacking in India [36, 37]. Another study of clinicians’ perspectives described the medical encounter as both “authoritarian” and “consumerist”, although power incongruities in the doctor-patient relationship are variable and subject to change [28]. However, there were pockets of good practice in our clinician’s data as shown from the study of women with breast cancer receiving care from the same private hospital as the clinicians in our study [3]. They reported mainly good, compassionate care from their oncologists, but found this surprising, and in contrast to previous poor medical encounters [3].

The need for better communication, particularly by doctors, was emphasised by all. This appears to be both an individual and system issue, with no priority given at the institutional level to communication skills training, or inclusion of suitably skilled team members (such as social workers). Cultural differences in communication are recognised and the paternalistic, hierarchical communication style in South East Asia is common, but not well received by patients [38]. Poor communication is reported elsewhere, for example, in chronic non-communicable disease management clinics [39]. Communication skills training is recognised as necessary for clinicians but there is no structured programme and limited availability [40]. Lack of effective communication and poor doctor-patient relationships lead to patient and carer dissatisfaction and are associated with litigation [41], and even violence against doctors in the country [42, 43]. Consultation models [44] which cater to disclosure of concerns, ideas and expectations by patients should be a part of “gathering information” within the communication framework and exemplify a patient-centred approach [45]. In response to a universal call for a change, the undergraduate medical training in the country has recently been amended to a competency-based curriculum with the aim to introduce the Attitude, Ethics and Communication module (AETCOM) as a longitudinal programme over the duration of the course [46]. A similar nationwide approach to post-graduate training would build on this, but issues around professional identity culture and funding priorities at individual institutions would need to be addressed. Of note, none of our participants mentioned communication skills training as a solution.

Strengths and limitations

This is the first qualitative study from India to explore the understanding of clinicians and non-clinicians on the topic, enabling interpretation of clinicians’ views in the light of the lay public opinion. We captured experiences of public and private healthcare settings, from both upper and lower socio-economic groups. These data will not be, and are not intended to be, representative of the whole South Asian population. However, our findings are likely to be applicable to Indian women elsewhere, such as the experiences of accessing medical care [2], and the principle need to be cognisant of the woman’s cultural context when providing breast cancer care can be extrapolated to the rest of the country and to migrant Indian women who often “take their culture with them” [2]. Lay volunteers have some clinical experience and so will not be totally representative of lay voices with no experience; however, this experience is firmly rooted in the community rather than in the hospital. The inclusion of only one Christian church is a limitation; however, Kerala State is recognised for its inter-faith harmony and understanding of other faith cultures. Furthermore, the participants were almost all women; indeed, this study aimed to highlight the experience of women, in a culture where this voice is typically less prominent. However, although men were represented in both professional and lay groups, we recognise that we have fewer direct accounts of men’s experiences. Of note, men were invited to the church group as well as women, but only women attended. Although this may indicate that the topic is viewed as a “women’s problem only”, the data we generated clearly indicated how this “woman’s problem” affected the whole of family life and society. The experience of breast cancer patients was reported by individuals who did not experience the illness themselves.

Clinical and research implications

A call for a screening programme and public education, particularly in rural communities, was voiced, surely a priority for this prevalent cancer. Post-graduate communication skills training for doctors and nurses, prioritised by institutions, would help address a lack of effective empathic communication. A greater emphasis and understanding of multi-disciplinary team working, with resources to include social workers, are needed. Culturally tailored community support groups and/or patient “buddy” systems can provide women with psychological and practical help.

Conclusions

Indian women with breast cancer experience widespread psychological impacts. These are amplified by the patriarchal context within which they live, which extends into clinical practice. Family and faith provide a strong support structure and are a cause of distress, as core roles and expectations are challenged by this disease of womanhood. Poor education, late presentation and lack of universal screening lead to a vicious cycle of stigma aggravating distress. These findings are important for all clinicians caring for Indian women with breast cancer.

Data availability

Requests by authorised researchers for access to anonymised data may be made to the corresponding authors.

Code availability

Not applicable.

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Acknowledgements

We wish to thank all the participants, both clinicians and members of the public who shared their experiences and stories, as well as the clinicians and parish priests who assisted with the selection of the participants.

Funding

Self-funded.

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Authors

Contributions

Concept—S.D.; design—S.D., C.V., M.J.J.; interview—S.D., C.V., C.S.; data analysis—S.D.; C.V., M.J.J.; data interpretation—all authors; first draft—S.D.; revisions and final manuscript—all authors.

Corresponding author

Correspondence to Sunitha Daniel.

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Ethics approval

Institutional approval was gained prior to data collection. Ethical approval was obtained from the ethical committee of Hull York Medical School, UK. The study was performed in accordance with the 1964 Declaration of Helsinki and its later amendments.

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Informed consent was taken prior to the interview, including for use of anonymised quotes for publication.

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Informed consent was taken prior to the interview, including for use of anonymised quotes for publication.

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The authors declare no competing interests.

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Daniel, S., Venkateswaran, C., Singh, C. et al. “So, when a woman becomes ill, the total structure of the family is affected, they can’t do anything…” Voices from the community on women with breast cancer in India: a qualitative focus group study. Support Care Cancer (2021). https://doi.org/10.1007/s00520-021-06475-4

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Keyword

  • Breast neoplasms; Psychological; Distress; Indian; Body image; Hair loss; Patriarchy; Family; Culture