Nearly one in two people will receive a cancer diagnosis in their lifetime. It’s a frightening statistic, but it’s one that Macmillan are confronting head-on on behalf of cancer patients of all backgrounds.
However, recent research has found that Black women are more likely to be diagnosed with certain types of cancer at later stages (stages three and four), when treatment is less likely to succeed. In light of this, Macmillan has launched a new campaign in Southeast London with the help of renowned salon Hype Coiffure, aiming to encourage conversations about cancer between Black women and their hairdressers to break down taboos and improve access to support.
Janet Clarke, Engagement Lead at Macmillan, shines a light on the cancer taboo amongst Black communities, how Macmillan and other charities are pioneering change, and why cancer treatment-related hair loss has a significant impact on Black women.
In your research, you found that African and Caribbean women were often diagnosed with cancer while in the later stages of the disease. What are the main reasons for this delay in diagnosis?
Lack of knowledge and information are well-known reasons, but we should also consider that information is sometimes not always accessible. For example, I often hear from patients that it would be reassuring to see images of people from the same cultural background as themselves on leaflets and other publications; though I am aware that steps have already been taken to address this.
Some patients also mention being treated like a ‘second class citizen’ when accessing healthcare, which is off-putting and can delay diagnosis.
Focus groups have found that cancer can be a taboo topic in some Black communities. Where do you think this taboo comes from?
This can stem from a combination of historical, cultural and social factors. There’s a longstanding mistrust among many in the Black community towards the medical system, rooted in historical abuses. This mistrust can lead to a reluctance to discuss or engage with health issues such as cancer for fear of discrimination, mistreatment or being used without consent in research.
In some cultures, including aspects of the Black communities, there can be a stigma attached to cancer, viewing it as a death sentence. This fear can discourage open discussions about cancer, leading to delays in seeking treatment or screening. The lack of conversation can perpetuate misinformation and fear.
Socioeconomic factors are one of the issues in regards to access to healthcare. It is a significant issue in many Black communities, with systemic inequalities affecting their ability to receive timely cancer screenings and treatments. The awareness and discussions around cancer can be limited by these systemic barriers, contributing to the topic becoming taboo as it highlights broader injustices and inequalities.
Religious or spiritual beliefs may influence perceptions of illness, including cancer. There might be a preference for spiritual healing and prayer over medical treatment or beliefs that discussing illness can bring it into existence. Such views can make it challenging to have open conversations about cancer.
Cultural values around privacy and maintaining a robust and independent facade can also play a role. Admitting to a cancer diagnosis may be seen as a sign of vulnerability or a burden to others, leading individuals to keep their health issues private.
There’s a lack of representation in healthcare and medical research concerning Black individuals. This underrepresentation can lead to a lack of culturally competent care and information, making it harder for Black communities to relate to the information and services provided, further entrenching the taboo around discussing cancer.
Understanding and addressing these factors requires culturally sensitive approaches, community engagement, and efforts to build trust and increase representation in healthcare. It’s also crucial to provide education that is accessible and relevant to the community’s needs, helping to break down the taboos surrounding cancer and encourage early detection and treatment.
Many people have been affected by cancer, whether they or a loved one have suffered with it. How have your personal experiences with cancer influenced the work that you do?
As one in two of us will get a cancer diagnosis in our lifetime, there are very few people who haven’t been impacted by the disease. Many of us at Macmillan have been directly or indirectly affected by cancer and it’s one of the reasons that we are such a dedicated and committed organisation. It really matters to us.
The connection between Black women and hair is unique. In many cases, hair is synonymous with identity. In your experience, what is the mental impact of cancer-related hair loss for black women?
For many Black women, hair is not just about aesthetics; it’s deeply intertwined with culture, heritage, and personal identity. This relationship makes the mental and emotional impact of cancer-related hair loss profound for Black women.
The experience of hair loss due to cancer treatment, such as chemotherapy, can be traumatic. It can lead to feelings of vulnerability, loss of identity, and diminished self-esteem. For Black women, these feelings can be amplified due to the societal and cultural significance placed on hair. Hair is often seen as a symbol of strength, beauty, and connection to African roots. Thus, losing it can feel like losing a part of oneself.
Moreover, the process of hair regrowth and the potential changes in texture and appearance can further affect a Black woman’s sense of self and confidence. The journey to reclaiming one’s identity and feeling comfortable with their new appearance can be challenging.
It’s also important to consider the support systems and resources available. The availability of culturally sensitive support services, including counselling and peer support groups that understand the unique relationship between Black women and their hair, can play a critical role in the healing process. Access to wigs and hairpieces that cater to Black women’s hair textures and styles can also provide a sense of normalcy and empowerment during a difficult time.
Overall, the mental impact of cancer-related hair loss on Black women is multifaceted, affecting their sense of identity, self-esteem and connection to their culture. Addressing these impacts requires a holistic approach that considers the cultural significance of hair and provides supportive resources tailored to their needs.
Macmillan has worked with iconic London salon Hype Coiffure to spread awareness amongst clientele. Tell us how this partnership came to fruition!
This great partnership came to fruition through two of the women who took part in one of the focus groups. They knew Hype Coiffure and have been clients at the salon. Both of the women had experiences with breast cancer and one of them told Macmillan about her stylist at Hype Coiffure, who had supported them throughout their breast cancer journey.
How can hairdressers support clientele who are affected by cancer?
Hairdressers can educate themselves about the effects of cancer treatments on hair, scalp, and skin. This includes understanding hair loss due to chemotherapy, radiation therapy and other treatments. Specialised training can also help in advising on wig care, scalp care, and the use of gentle hair products. We at Macmillan have created a training course for hairdressers covering some or most of the topics mentioned.
Providing a listening ear and emotional support can make a significant difference. Being empathetic and patient, understanding their journey, and providing a safe space for them to express their feelings and concerns are key. Creating a private space for consultations can also help clients feel more comfortable discussing their needs and concerns. Privacy is particularly important for those dealing with hair loss and considering wigs or head coverings.
Recommend gentle hair care practices and products that are suitable for sensitive scalps. This can include sulphate-free shampoos, natural products, and gentle styling techniques to minimise damage to the hair and scalp. Providing advice on selecting wigs, headscarves, and hats can be incredibly helpful. This includes tips on fitting, styling, and caring for wigs, as well as suggesting comfortable and stylish head coverings.
Offering flexible scheduling can accommodate clients who may have fluctuating energy levels and medical appointments. Understanding that they may need to cancel or reschedule at the last minute is important.
Connecting clients with support groups, resources, and community organisations can provide additional support. These resources can offer emotional, financial, and informational assistance.
Offering special services such as scalp massages, hair regrowth consultations, and personalised wig styling can cater specifically to the needs of clients affected by cancer. Try to stay updated with the latest research and trends in oncology aesthetics. This includes new treatments, products, and techniques that can benefit hairdressers’ clients.
Hairdressers should encourage a supportive and positive atmosphere in their salon that uplifts all clients, including those affected by cancer. Celebrate milestones and offer encouragement throughout their journey.
In what ways does Macmillan help Black women, in particular, with cancer?
Macmillan Cancer Support offers various forms of assistance specifically designed to meet the needs of Black women affected by cancer. One of the innovative projects is the new Beauty of Support initiative in Southeast London – piloting in the Lambeth, Lewisham and Southwark areas – which facilitates conversations about cancer between Black women and their hairdressers to break down taboos and improve access to support. This project emerged from focus group insights with women of African and Caribbean backgrounds and aims to increase breast cancer awareness, encourage early diagnosis, and provide resources for both those affected by cancer and the hairdressers who can play a crucial role in support and awareness.
Moreover, Macmillan Cancer Support provides practical advice on choosing and using wigs for those undergoing cancer treatment, including Black women and those from minority ethnic groups. They offer guidance on selecting wigs that match one’s style and colour before hair loss occurs, ensuring the wig looks natural. They also provide information on NHS wig suppliers that offer styles for people from any ethnic group, with recommendations to contact specialist wig suppliers or seek online options for more variety. Additionally, Macmillan provides tips for fitting and wearing wigs comfortably, managing costs through NHS prescriptions or charity grants, and caring for wigs to maintain their condition.
Training will be provided to hairdressers about Macmillan and their services, and how to have comfortable cancer conversations so they can respond to queries that their clients may have. Hairdressers will also be trained in simple health promotion messaging and motivational interviewing techniques to encourage the uptake of breast cancer screening and to encourage their clients to contact the Macmillan helpline.
What other organisations can you recommend to help Black women and their families with cancer?
Black Women Rising: This cancer support project was set up in 2019 by award-winning community champion Leanne Pero after she struggled with the aftermath of her own battle with breast cancer at just 30 years old.
In her quest to find the right services to aid her, Leanne soon realised that the NHS lacked cancer support packages for BAME cancer patients. Further investigation into the visibility of BAME cancer patients in the UK started to unravel that in most instances, the cancer stories of her community were being excluded from the UK’s mainstream media outlets, magazines, daily tabloids and more damagingly from reputable annual cancer campaigns by brands and charities failing miserably at diversifying their campaigns.
Cancer Hair Care: This is a unique charity service founded by Jasmin Julia Gupta. The service is run by the charity Caring Hair. They offer free, expert advice and support on all aspects of hair loss, hair loss prevention (scalp cooling) and hair care, before, during and after cancer treatment. They can also offer support to people with non-cancer treatment-related hair loss. If you are an individual who would like support, you can receive a host of free services from their experts.
DChanger community meet-ups: This a small organisation committed to supporting people who are battling cancer, especially BAME, through the provision of befriending, advice, signposting and counselling service. They run various workshops on different types of cancer, delivered by professionals such as oncologists, cancer nurses and dieticians. They also run a monthly meetup session, providing a safe environment where members can share their experience, forge friendships and build support networks. They also organise outings and get-togethers (including Christmas outing) for our members. As a Christian organisation, they organise monthly prayer meetings where members are encouraged through collective prayers.
Meetups take place on the second Thursday of every month from 11am to 12pm in the Greenwich & Bexley Hospice. Contact Mrs. Olayinka Sowemimo-Coker on 07411421691 or email dchangercharity@gmail.com
Look Good Feel Better: The team at Look Good Feel Better know how challenging it can be to process a cancer diagnosis and manage the physical and emotional side-effects of cancer treatment. This is why they run free workshops both virtually and at cancer care centres and hospitals across the UK to support women, men and young adults through this time.
Their workshops are led by trained volunteers in the beauty industry and provide practical advice about changes to skin, eyebrows, eyelashes, hair, nails and body confidence. Volunteers in the health industry also lead their well-being focused workshops covering meditation, breathwork and gentle exercise to help reduce feelings of isolation and anxiety.
Wigs For Heroes: This is a grassroots charity located in the heart of Tottenham, North London. Their aim is to support people undergoing cancer treatment in the local communities in the UK. This could be in the form of a wig grant, pamper bags, cancer support workshops, events/meetups, online support groups, coffee club socials or simply via the provision of helpful online resources and video tutorials.
Whatever you need to ask, Macmillan is available seven days a week via their website or Support Line on 0800 808 0000.
