Healthcare providers’ perspectives of the supportive care needs of women with advanced breast cancer in Ghana

Abstract

Background

The study sought to understand the supportive care needs of women with advanced breast cancer from the perspectives of healthcare professionals (HCPs) and key informants of charitable/non-governmental organisations (NGOs), that provide supportive care services to women with advanced breast cancer, in Ghana.

Methods

A qualitative descriptive approach was employed via one-to-one semi-structured interviews with 13 HCPs and key informants of charitable/NGOs in Ghana that provide supportive care services to women with advanced breast cancer. The study was underpinned by Bradshaw’s taxonomy of social needs and Fitch’s supportive care framework. The data were analysed using a deductive content analysis approach.

Results

Healthcare providers and key informants perceived that women with advanced breast cancer in Ghana have numerous and complex supportive care needs in key areas that align with Fitch’s supportive care framework, including informational, psychological, emotional, physical, practical, social, sexuality and spiritual needs.

Conclusion

Participants perceived that women who have advanced breast cancer in Ghana require ongoing information about their condition, treatments and related effects, as well as spiritual support and guidance particularly due to the fatalistic beliefs they often associate with the condition. Tailored supportive care interventions and services, which address the unique sociocultural circumstances for this cohort, are required. Additional research is needed to explore how multidisciplinary teams can work collaboratively to provide comprehensive support to women in addressing their needs.

Background

In 2020, breast cancer was the most frequently diagnosed cancer in women worldwide [1] and accounted for 29.5% of cancer incidence and 22.1% of cancer deaths in Africa [2]. In Ghana, breast cancer accounted for 31.8% of cancer incidence [2]. It is more common to be diagnosed with advanced breast cancer in African countries, when compared to Western countries, [3, 4] as evidenced by around 70% of women being initially diagnosed in Ghana with advanced breast cancer breast cancer [5]. Contributing factors for this phenomenon include poor recognition and appraisal of breast cancer symptoms, fear and denial, sociocultural beliefs, financial and health system impediments, and the absence of screening programs [6,7,8,9].

Women with advanced breast cancer have been found to experience multiple and complex supportive care needs across seven domains [10], more specifically informational (e.g., underserved with available information), psychological (e.g., shame, guilt, depression), emotional (e.g., neglect), social (e.g., withdrawal, isolation), physical (e.g., pain, fatigue), practical (e.g., unemployment, decline in income) and sexuality related needs (reduced libido, intimacy issues) arising from their illness and treatments [11,12,13,14,15,16]. Recognition and validation of patients’ needs enhances open dialogue between patients and healthcare professionals (HCPs) which leads to referrals to appropriate services [17].

The negative impact of cancer and its treatment on patients has been acknowledged by HCPs worldwide [10]. Earlier studies undertaken in Western developed countries have investigated HCPs’ perspectives on supportive care needs of patients with advanced prostate cancer [18], colorectal cancer [19], cancer patients during oncology treatment [20], and their caregivers [21], and on the prevalence, barriers, and management of psychosocial issues in cancer care [22]. To the best of our knowledge, no study has investigated the supportive care needs of women with advanced breast cancer from HCPs’ perspective in Ghana. Hence the aim of this study was to understand the supportive care needs of women with advanced breast cancer from the perspectives of HCPs and key informants, of charitable/non-governmental organisations (NGOs) in Ghana that provide services to women with advanced breast cancer, to help inform the planning and establishment of tailored interventions to address such needs.

The supportive care needs of women with advanced breast cancer in Ghana have recently been assessed, and reported, from the perspective of the women [11]. However, the needs of these women from the perspective of the HCPs and key informants of charitable/NGOs have not, to the best of our knowledge, been considered. Therefore, it remains unclear to what extent HCPs understand the supportive care and health service needs of women with advanced breast cancer in Ghana. The external assessment of the needs of patients by their HCPs is important in their management [23]. HCPs have acknowledged the impact of the effects of cancer and its treatments on patients [23,24,25] hence the need to provide better supportive care and health services to address the needs of these patients. Furthermore, insight into HCPs’ perspectives of the needs of this cohort may help ensure that appropriate and effective care and disease management care pathways and activities are instituted through appropriate referral process.

Methods

Conceptual framework

This qualitative exploratory study was part of a multiphase study that aimed to explore the supportive care and health service needs of women with advanced breast cancer. Bradshaw’s taxonomy of social need [26] and Fitch’s supportive care framework [10] underpin this study. Bradshaw classifies need into four interrelated categories: normative (desires defined by experts), felt (subjective desire for things), expressed (when such desires are turned into actions) and comparative (comparisons with others not in need) [26]. This paper reports patients’ needs according to the perception of experts (normative needs) [26], as conceptualised using Fitch’s [10] supportive care framework as an analytical framework, which includes psychological, emotional, physical, social, practical, informational, and spiritual domains.

Participants and setting

Using a mixed, purposive sampling strategy, which employed both a nomination selection strategy [27] and maximum variation sampling [28], HCPs and key informants of charitable/NGOs (from here referred to as experts) who support women with breast cancer in Ghana were recruited. The participants were selected from the oncology directorate/unit of Komfo Anokye Teaching Hospital and Peace and Love Hospital and the NGOs of Breast Care International and Breasted One Foundation in Ghana.

Procedures

Recruitment site executives identified potential experts and provided them with study information. Interested experts were contacted by the researcher, upon their permission, by email, phone and in person to explain the study further and to answer questions. Each of these experts received an information leaflet. Written consent was received prior to interview.

Data collection strategy

One-to-one, semi-structured interviews were conducted by phone or face-to-face at the expert’s workplace in 2019; duration average was 38 min (range 17–67 min). To ensure all relevant and related concepts were explored, a purpose-specific interview guide (Additional file 1) was piloted with an oncology clinician and a key informant in Ghana from a similar NGO. Topics covered the supportive care needs of women with advance breast cancer and the existing services available to address such needs. Each interview session was digitally recorded with participant consent.

Data analysis

The study was conducted following the COREQ criteria [29]. Interview recordings were transcribed verbatim. An established deductive/directed content analysis method was utilized [30]. The lead author read the transcripts multiple times to gain understanding of the data. Key concepts, based on Fitch’s [10] supportive care framework, were used to develop the initial coding scheme. The categorisation matrix comprised subcategories and broader tentative categories of data. The assignment of codes to categories was randomly assessed by author 2; changes were made as appropriate upon agreement. Categories were continuously refined until all statements/responses were appropriately coded. All authors reviewed the categorisation matrix to establish congruence of understanding and to reconcile ambiguous interpretations [31].

Study trustworthiness

Study credibility was strengthened by establishing rapport with participants. The first author is a nurse and had previously cared for women with advanced breast cancer. Purposive sampling, and the collection and analysis of thick and rich descriptive data, boosted transferability of results. Dependability of study results was increased as the study protocol was reviewed by independent researchers, by using data analysis processes that involved more than one researcher, and by peer debriefings during analysis processes. An audit trail of research activities enhanced study confirmability [32].

Results

Sample characteristics

All 13 eligible potential experts identified consented to participate. Their median age was 40 years (range 25–61 years) and most were female (61.5%). Table 1 summarises the characteristics of the experts.

Table 1 Characteristics of the expert participants

Supportive care needs

Data were categorised into Fitch’s [10] original seven domains of supportive care needs. Upon analysis, an additional domain—sexuality needs—was created. Sexuality needs, as a domain, were originally embedded within the psychological domain of Fitch’s framework. However, these data were grouped in a separate category due to the extent and depth of findings relating to sexuality needs. Results are reported against first and second level categories that align with the supportive care domains (details in Table 2).

Table 2 Supportive care needs as perceived by the experts

Informational needs

The second level categories identified include ‘understand the disease process’, ‘understand service/treatment issues/care processes’, and ‘sources of information’.

Understand the disease process

The provision of information to women to help them to understand what cancer means needs to be conveyed in their own dialect and in easy-to-understand terminology. According to the experts, the cause/risk factors related to breast cancer should be part of the information provided to these women, as they tend to have different views of what causes cancer. They described some of the misconceptions/myths/fallacies about breast cancer that need to be dispelled, such as the cancer being caused by spiritual forces. These beliefs tend to be strong, particularly when there is no family history of breast cancer. They also noted that the women need to be proactive about seeking information about their condition. (Table 3, quotes 1–4).

Table 3 Informational need; categories identified and related quotes from the experts’ perception of the supportive care needs of women with advanced breast cancer

Understand service/treatment issues/care processes

Stepping the women through the various processes of their treating facilities, treatment issues, and/or the disease care pathways will ensure that they will be in a better position to cope with their condition, treatments, and related consequences. The women, too, need to be made aware of incurring high out-of-pocket expenses that are associated with receiving breast cancer treatments, as not all treatments and ongoing diagnostic tests are currently covered by the National Health Insurance Scheme (NHIS) in Ghana. Furthermore, some of the experts noted that these women need access to information about existing support and health services (Table 3, quotes 5–11).

Sources of information

The women could access breast cancer information in writing, via the internet, and in audio-visual format, however, most experts noted that oral communication of the relevant information is best for this cohort. Some experts suggested that the information be provided by members of the multidisciplinary team, including social workers and psychologists, adding a caveat that these personnel must have a good understanding of breast cancer and related topics to well equip the women for their cancer trajectory (Table 3, quotes 12–18).

Psychological needs

‘Keep a positive outlook’ and ‘psychological support’ were the second level categories that were identified by the experts.

Keep a positive outlook

Fungating lesions experienced by women with advanced breast cancer, due to ulcerations and necrosis of the breast, may exude a foul odour which can lead the women to withdraw. Side effects from treatments, such as loss of a breast, a wound, and/or a scar from radiotherapy can interfere with the choice and styles of clothes they wish to wear. These issues aside, according to the experts, the most pressing problem experienced by these women is the importance that society places on women’s breasts as the most important external identification of femininity. As these issues can negatively impact women’s self-esteem, these issues need to be acknowledged and address to assist them to keep a positive outlook. (Table 4, quote 1–2).

Table 4 Psychological and Emotional needs; categories identified and related quotes from the experts’ perception of the supportive care needs of women with advanced breast cancer

Psychological support

The experts noted that women feel a sense of depression due to the loss/mutilation of a breast as feelings of reduced femineity ensue. Fatalistic ideas related to a cancer diagnosis in the Ghanaian context further causes fear. Experts also noted that the women need help to work through their psychological issues such as anxiety, uncertainty related to their condition, fear for their future and the unknown, and fear of recurrence and death (Table 4, quotes 3–5).

Emotional needs

The second level categories that explain the experts’ perceptions of the Emotional needs of this cohort included ‘manage feelings’ and ‘moral support’.

Manage feelings

Women with advanced breast cancer experience shame due to the cancer diagnosis, and according to the experts, these issues need to be addressed to support their emotional stability. The experts noted that women are often abandoned, which has negative consequences. In their opinion, these women need more comfort and love than was needed prior to their diagnosis, and as such, need to feel appreciated and heard (Table 4, quotes 6–8).

Moral support

The experts noted that these women need empathy and constant reassurance from their families and friends, HCPs, and from other women in similar situations. Interacting with other women who have thus far survived having breast cancer can provide women with a sense of belonging and moral support as they share stories of their disease trajectory. (Table 4, quotes 9–12).

Physical needs

The second level categories that derive from this domain include ‘physical comfort’ and ‘physical support’.

Physical comfort

According to the experts addressing physical symptoms, such as pain, fatigue, nausea/vomiting, ulceration of the breast, and offensive odour, is paramount to help women cope with their condition. Furthermore, the experts believe the women need comprehensive preparation to adapt well to and cope with life before and after treatment. (Table 5, quotes 1–3).

Table 5 Physical and Practical needs; categories identified and related quotes from the experts’ perception of the supportive care needs of women with advanced breast cancer

Physical support

Some of the experts noted that the women need physical support in relation to nutrition and exercise advice due to the significant impact that the disease progression, and its management, can have on their eating patterns and bone density. (Table 5, quote 4–5).

Practical needs

The second level category of this domain is ‘practical support’.

Practical support

The women require practical assistance with daily tasks, such as washing and cooking, due to the side-effects/complications of the disease and/or the treatments endured, which include becoming fatigued and anaemic, and from developing lymphedema.

In addition to high out-of-pocket costs associated with treatment, the nature of the disease and its treatments impacts the women’s physical strength, thereby limiting their work participation leaving them unemployed and financially drained. This results in the women needing financial and employment assistance for their business, and occupational counselling. Furthermore, as the women are physically weakened by their condition and treatment, they likely need to be accompanied to appointments and may need childcare support.

According to the experts, most women who access the two local oncology sites at Kumasi, live more than 300kms away. Some of these women are likely to need to be at the clinic a day prior to their appointments due to travel requirements. Consequently, these women need accommodation support to enable them to attend their scheduled appointments and to adhere to treatments (Table 5, quotes 6–11).

Social needs

The second level category identified within the Social needs domain is ‘acceptance’.

Acceptance

The experts unanimously raised the issue of the stigma that these women endure from their families and society generally, explaining that as breast cancer in Ghanaian society is often branded as a condition contracted due to one’s sinful deeds or spiritual forces, these women tend to not openly discuss their diagnosis. Hence, community acceptance and support, which incorporates family and peer support, is needed by these women (Table 6, quotes 1–3).

Table 6 Social, Sexuality and Spiritual needs; categories identified and related quotes from the experts’ perception of the supportive care needs of women with advanced breast cancer

Sexuality needs

The identified second level categories of this domain were ‘counselling on sexual relations’ and ‘physiological advice’.

Counselling on sexual relations

According to the experts, the women encounter sexual problems, such as reduced libido, which impacts their intimate relationships. In their opinion, women with advanced breast cancer need spousal support, however many women do not receive such support (Table 6, quotes 4–6).

Physiological advice

The experts claimed that younger women with advanced breast cancer, in particular, need physiological advice from HCPs in relation to being propelled into early and often abrupt menopause, and/or experiencing the temporary cessation of their menstrual cycle, due to the cancer treatments, and consequential fertility concerns (Table 6, quote 7–8).

Spiritual needs

The second level categories related to this domain are ‘find meaning and purpose’ and ‘find peace’.

Find meaning and purpose

Women with advanced breast cancer pursue meaning in their diagnosis. One way they navigate their diagnosis, according to the experts, is by seeking help from their religious leaders. The need for existential understanding, that is to find answers to questions that may lead to understanding the purpose of God in their lives, to be more accepting of their situation, and to truly value their remaining days, is often expressed by these women (Table 6, quotes 9–12).

Find peace

The experts reported that many Ghanaian women believe in the spiritual aspects of the disease and often tend to seek spiritual peace more than the physiological benefits of treatments. Paying attention to their spiritual concerns, by supporting, guiding and affirming that they can seek both spiritual and physiological benefits while being treated for the disease, may help the women to find peace (Table 6, quotes 13–16).

Discussion

To the best of the authors’ knowledge this is one of few studies to explore the needs of women with advanced breast cancer in Ghana from the perspectives of relevant experts. Although the findings of this study are consistent with those of other studies which indicate that women with advanced breast cancer have numerous supportive care needs [11,12,13,14,15,16], this study provides additional insights from these experts’ perspectives about the plight of women in Ghana.

Similar to other studies of women with advanced breast cancer [12,13,14], informational needs are an important priority for women in Ghana. These women require ongoing information about their condition, treatment modalities, expected side effects/complications and prognosis/outcomes, as well as the expected costs involved with investigations and treatments, and the need to comply with disease management instructions. Participants noted that women can have many beliefs and misconceptions that need to be understood, considered and explored to encourage adherence to treatments [33]. Such information can be provided in a range of formats, such as in written or audio-visual format, according to their needs and in their spoken language [34].

Psychological issues raised by the experts focused on loss of control in relation to the women’s depression, anxiety, fear, altered body image and low self-esteem. These findings are similar to those reported by women with advanced breast cancer in European countries, Ghana, Iran and Canada [14, 35,36,37]. The breast plays an important role in the definition of womanhood, attraction and beauty therefore losing a breast can psychologically impacts the woman’s self-worth [38, 39]. Gaining personal control by changing one’s perspective of the condition and looking for positive opportunities in face of their circumstances proved to be helpful according to the experts.

Experts in this study noted that women with advanced breast cancer can feel embarrassed, unloved and feel that their concerns and feelings are not considered, similar to findings from a global study of women with advanced breast cancer [14]. Support, provided by their treating team, family members, friends and breast cancer survivors, is required to help them manage such feelings to facilitate their emotional stability as they navigate their cancer trajectory [40].

Symptoms, side effects and complications experienced by women were also noted by the experts as requiring prompt and effective management, including nutrition and exercise advice. Not all the experts agreed that the women with advanced breast cancer in Ghana are prepared in these areas, highlighting that more comprehensive supportive interventions before and during treatment are warranted [41].

The practical needs raised by the experts are similar to those raised by the women with advanced breast cancer in a global population-based representative study [14] and by women living with breast cancer in rural Canada [37]. Managing activities of daily living when faced with advanced illness is problematic [42]. Employment issues together with the out-of-pocket costs related to cancer treatments and investigations contribute to the women’s financial difficulties. Accommodation and transport are issues for many Ghanaian women who live far from treatment sites. These issues require intervention at the policy and community level to provide financial support and community development programs.

Women with advanced breast cancer need to feel accepted by both their families and their communities and in a country, such as Ghana, this is vital where there is no advanced breast cancer peer support groups [43]. Similar to the views expressed by the experts in this study, Cardoso and colleagues [14] reported that many women perceive that society views women negatively once diagnosed with advanced breast cancer, leading to a sense of rejection. The experts noted that a diagnosis of advanced breast cancer further puts a strain on the women’s relationships with others and, by default, they do not receive the social support they need. The experts in this study suggested social support be provided by the treating team as it may be the only social support the women receive.

According to Barsotti and colleagues [38], a range of sociocultural factors can negatively impact women diagnosed with breast cancer, including a traditional emphasis on women’s sexual expression being contained within marriage, prioritisation of male sexual pleasure, and notions of the female breasts and their sexual attractiveness. These factors can prevent the women from seeking the support needed to address sexual issues, such as reduced libido and intimacy problems [38]. Moreover, a women’s relationship with her spouse/partner can be negatively affected due to changes in mood or negative perceptions about themselves [14]. Women often link their appearance, weight, and body image to their perceptions of attractiveness which can impact sexual relationships after a diagnosis of, and treatment for, ABC [39, 44]. At a time when women with advanced breast cancer need support from their intimate partners, experts in this study observed that women can feel abandoned. This differs somewhat from findings of a Brazilian study which reported that women’s partners supported them despite the intense emotional stressors they experienced [38]. Fertility and menstruation/menopause issues were also concerns for women, as noted in other studies [45]. The provision of timely and appropriate advice from qualified HCPs is needed to address these sexual and fertility concerns to support the women.

The experts in this study also highlighted that women with advanced breast cancer can struggle with existential concerns and have unrealistic expectations about life post-diagnosis. Spiritual needs have been reported by cancer patients in other studies [46, 47] including a study in Iran [48]. Spiritual support and guidance is therefore an essential component of support services as the diagnosis is often attributed to spiritual causes and this belief often interferes with treatment adherence [33]. Ascertaining and accurately documenting spiritual concerns and beliefs in relation to their diagnosis will assist HCPs to address the women’s spiritual concerns effectively [36]. One New Zealand study [49], that focused on improving the consistency and quality of spiritual care, reported that fostering inter-professional and patient collaboration can be useful to women with advanced breast cancer.

Strengths and limitations

Due to the sampling methods used, transferability of the study findings should be undertaken with caution. In addition, the number of participating experts, particularly the key informants of breast cancer organisations, was limited. Most of the experts who participated in this study were aligned to only one of the two recruitment sites in this study. However, as this site is the second largest treating centre for women with breast cancer with multidisciplinary treating teams in Ghana, the experts’ breadth of experience is likely to be extensive. Furthermore, the categories generated from the interview data were consistent with the existing literature on the needs of this cohort.

Conclusion

This study explored experts’ perspectives of the supportive care needs of women with advanced breast cancer in Ghana. As women continue to present in the advanced stages at healthcare facilities for breast cancer treatment, it is imperative to frequently assess their needs. The study findings highlight the need for more and improved evidence-based, tailored, supportive care interventions to be established for women with advanced breast cancer in Ghana particularly regarding information about their condition, treatments and related effects, as well as spiritual support and guidance due to the fatalistic beliefs they often associate with the condition. Additional research is needed to explore how multidisciplinary teams can work collaboratively to provide comprehensive support to the women in addressing their needs.