Introduction
In 2021, Centric embarked on a project to look at why communities in Lambeth, Southwark and Lewisham were becoming increasingly sceptical of healthcare services and medical institutions. Two of the primary insights from that project were: people had been through traumatic experiences while in healthcare settings – which impacted their trust in health services. Plus, black women had distrust and cynicism of healthcare services as a result of poor maternal health experiences.
It was evident that there was distrust in healthcare institutions, systems and services indicative of the current crisis of epistemic trust (Goldenberg, 2021) facing public health, reflective of the wider societal trend of distrust of government (Hardin, 2004), politics (Claude and Hawkes, 2020), science and media (Birkhead et al., 2022: 269; Warner and Lightfoot, 2014: 452; Stoto et al., 1996: 11).
For black women in particular, tangible reasons exist for mistrust such as morally and ethically questionable instances where black women were abused through medical research and unethical experimentation (Smedley et al., 2003: 131). This has been discussed by medical ethicist Washington (2006) who has discussed the role of James Marion Sims, regarded as the ‘father of gynaecology’. Hence, Washington has noted (2015) that “it is not merely about conspiracy theory, but conspiracy fact” when discussing the tangible reasons as to why black communities may not trust health and medical services and systems.
Mistrust and fear of healthcare systems can lead to barriers in accessing services and care, thereby exacerbating health disparities. Medical mistrust can also be instilled when mental health provision and delivery is inadequate and deficient (Ball and Strekalova, 2020: 219). Misdiagnoses are less likely to occur, and communication is more efficient, when there is cultural representation in the profession, along with a comprehension of the cultural context of the patient.
This is pertinent to consider as patients come to grips with the digital shift and navigating the management of their chronic conditions, mental health and trauma around digital tech applications and platforms which can be both cumbersome and unsafe. This requires us to consider the design of digital applications, online platforms and new tech when embarking on supporting people who may have experienced trauma while in healthcare settings.
Background and Context
Stafford et al. (2019: 570) note in their paper on the management of haemorrhage during pregnancy in the book Critical Care Obstetrics:
Preeclampsia is the most common risk factor and is found in approximately 50% of women with placental abruption. Other risk factors include pre-term premature rupture of membranes, polyhydramnios, advanced maternal age, cocaine use, smoking, multiparity, chorioamnionitis, hypothyroidism, assisted reproductive technology, blunt trauma and possibly thrombophilia. Black women are more at risk than other population groups.
Black women also face major barriers to postpartum mental health care yet, are less likely to connect with perinatal mental health specialists after giving birth.
Our research in 2021 revealed a strong need for support wherein women could talk though their experiences with healthcare. There is a demand for a different complaint and resolution system and a better way to help mothers, and fathers, know where to go for open discussion, mediation, resolution and importantly, quick acknowledgement of the need for redress. This is what is referred to as restorative practice and is among the repertoire of trauma-informed care, which has huge potential. Harper (2021: xv) notes:
There is a growing body of qualitative research focused on the life-or-death decisions affecting Black women’s pregnancy, labour, birth and post-partum care. NPR and ProRepublica, in a joint endeavour, collected over 200 stories from African American mothers across the country who shared their birth experiences. Overwhelmingly, Black mothers reported being devalued, disrespected and treated with contempt. In a 2019 survey of 212 Black mothers, Harper reported that 77.89 percent of respondents felt that African American mothers do not receive the same level of care as White mothers when dealing with labour and delivery staff. In the same study, 22.11 percent said yes, Black mothers received the same level of care.
Reflective of the current health market, and of nearly two decades of anticipation and theory accelerated due to the COVID-19 pandemic, new technologies are developing swiftly. This can be seen in mental health and with the greater public exposure the issue has received with celebrity involvement. The convergence of mounting costs, the reorganisation of health services, shifting patient behavioural patterns, increasing time constraints and the epidemiological profile change has caught the attention of healthcare solution providers on one hand, and tech developers on the other, broadening access and reducing costs (Lee and Han, 2015).
The ubiquity of the internet as an information source for healthcare is a phenomenon that directly influences health services, through easy access, patient empowerment, direct and fast information, relationships between patients and health professionals. All of these make the role of health service users more relevant (Lee et al., 2015).
Stawartz et al. (2015) suggested in their research real-time engagement is preferred by users in apps for mental health, reminders and notifications to engage and links to additional crisis support. Stawartz et al. also found users appreciated user discretion, accessibility and portability. Chopik (2016) noted social technology use was associated with higher subjective wellbeing, less depressive symptoms in older adults, fewer chronic illnesses and better self-rated health.
In their study on digital mental health services (DMHS) in Australia, Titov et al. (2020) note the benefits of such services outweigh the challenges. They note DMHS should include assessment and information services, robust systems for training therapists and specialist skills to operate the services. They mention future mental health policies can be formulated based on data from such services.
Additionally, AI diagnostic tools on apps and platforms are inexpensive, may remove the stigma associated with mental health, improve predictability as they monitor signs common in deterioration and provide 24hr support*. They also give advice on diet, supplements, lifestyle and medication. ML algorithms can include research-based objective tests which indicate the need to seek treatment, plus evidence-based data and medical based practices.
Initially, all of this shows the significance of designing precise and time-limited value-based goals, along with reminder notifications that appear on the same device on which many of the training activities occur. Concern nevertheless has been expressed by Zuboof (2019) who discusses how devices are developed and deployed to mine our daily behaviour. This then gets processed into data which is fed into learning algorithms in bulk to find patterns and correlations, via AI. Our behaviour thus becomes a flow of data which no longer belongs to us and becomes the exclusive property of an entity for their manipulation.
Subsequently, it also reveals there must be trauma-informed digital design when composing and rolling out such new tech solutions which takes into consideration these concerns around digital trust ensuring anonymity, privacy and safety online. It must not become a mere dump to collate our actions via AI.
Trauma-Informed Care
Trauma is the experience and subsequent repercussion of an extremely distressing event or series of events. People can experience a traumatic event differently, which leads to different types of adverse effects on mental, physical, social, emotional and/or spiritual well-being. Not everyone who experiences something traumatic will be traumatised, yet for many people trauma may create a radical shift in how the mind and brain manage perception. (Chen et al., 2022: 2).
Trauma often manifests in traumatic stress reactions, described by researchers as “normal human survival [instincts]”, developed in response to the traumatic event(s) that serve to protect from further harms. Trauma reactions can happen during or after the traumatic event — and can continue for months or years. Chen et al. (2022: 2) note responses can emerge in various aspects of a person’s life:
The emerging notion of trauma-informed care involves:
Adopted from the mental health field, the concept promotes consideration of the perspectives of survivors of trauma. It also highlights how treatment environments can contribute to re-traumatisation.
Note that it is important black women have access to therapists who practice trauma-informed care in a culturally sensitive manner. Mindfulness is one way in which this can be achieved (Williams, 2021: 111). Van der Kolk (2014) explains that self-awareness is a key component to healing from trauma and noticing our own annoyance, nervousness and anxiety can immediately shift our perspectives to react in healthier ways.
A ‘Cultural Mediative’ Approach to Trauma-Informed Care
There are African originated inclusive decision-making and resolution approaches to finding solutions which we opine are of use when addressing trauma. These are rooted in ancestral conflict resolution processes which are also still relevant to the modern urban locale where offstage and hidden transcripts abound. Powell-Bennett states (2017: 105):
Another reason why African American respondents’ willingness to use mediation showed a high frequency may have been due to their African ancestors’ traditional tendency to use a third-party intervention, such as elders in their community.
In some African tribes and ethnic groups, mediators are family or community elders freely chosen by the parties, who play a strictly neutral role (Sone, 2016: 54). In these groups, mediators listen to each party’s side and encourage them to also actively listen, understand and appreciate the perspectives and interests of the other party. The mediators facilitate a process to enable all to find a solution that is satisfactory, without imposing a solution and sharing power.
This African centred approach has buy-in from sections that are either distrustful of dominant institutions or, disconnected from Eurocentric organisational structures that may have played a role in traumatic events and are often colonial, paternalistic, patronising and authoritarian. African mediation is more active and includes making recommendations, assessments, conveying suggestions, reviewing agreements, revising etc. (Ajayi and Buhari, 2014: 150).
Clinical, colonial and authoritarian approaches to finding solutions are not trusted by many people in the urban locale as they lack relationship equity which is a feature of mediation systems originating in Africa. This means mediation should be a sought-after aim, where necessary, in cases where research participants indicate problems with dominant institutions or structures. This cultural mediative approach can play a key role in trauma-informed care in the urban locale.
Digital and Tech Innovations to Impact Behaviour Change and Cultural Appropriacy
It’s important to initially recognise factors which influence one’s ability to engage in health behaviours when thinking about health behaviour change initiatives. Sabharwal et al. (2020: 38) posit that individual influences on engagement in health behaviours can include a person’s cognitive abilities (nonmodifiable) and one’s own knowledge or beliefs about their condition (modifiable).
For instance, the nonmodifiable being the influences of one’s family and personal support network on engagement in health behaviours. While the modifiable refers to the involvement of family members around one’s disease management. Tech-based approaches to behaviour change may have promise for some modifiable influences. Digital tech tools which share the data with one’s social and peer network, and provide encouraging feedback, can target modifiable individual and interpersonal influences such as motivation, confidence and social support.
Ramos and Chavira (2019), in their analysis of behavioural intervention technologies (BIT) among minority communities, offer that many of the studies highlighted the following cultural adaptations which were made for app-based BIT. Heilemann et al. (2017) made use of Latino actors, plus focus group and interview feedback on relatability and appropriacy of stories for psychological education. While Muroff et al. (2017) for the app-based cognitive behavioural therapy (CBT) had some material translated into Spanish for Latino communities.
For online web-based BIT, Ramos and Chavira revealed in some cases no cultural adaptations were made (Baggett et al., 2017; Cheng et al., 2019; Kelman et al., 2018). In some cases, CBT material was translated into Spanish, vocabulary was adapted, culturally relevant examples were utilised, social support system incorporated into intervention and religious components addressed where appropriate.
This was adopted by Muñoz et al., 2014; Barrera et al., 2015 in their randomised controlled trial on online prevention of postpartum depression for Spanish and English-speaking pregnant women; Muñoz et al., 2016). Choi et al. (2012) noted an online CBT intervention in Australia with a Chinese community (the ‘Brighten Your Mood’ program) translated material into Chinese, as also done by Liu et al (2014), and included illustrations of people of Chinese and Far East Asian features. Concepts were also modified in tandem with Chinese culture and there was an emphasis on challenging cultural myths about depression.
Trauma-informed Digital Design Principles
Kezelman and Preston (2015) have articulated the following principles for trauma-informed digital design:
Trauma-Informed Digital Technologies: Key Areas of Consideration
The main areas of consideration for trauma-informed digital technologies are:
Safety:
Trustworthiness:
Choice:
Safety, trustworthiness and choice are therefore the key aspects of trauma-informed digital design.
Conclusion
Online and in-person support communities, where women can talk openly and honestly about their motherhood experiences and mental health without the need to put up a “strong female” persona can be useful, as similar initiatives from the US reveal. Sad Girls Club is one of a few digital spaces working to treat the symptoms of traumatic births – although these interventions are a drop in the ocean in light of the structural challenges and institutional healthcare failures around black maternal care.
Trauma-informed digital design recognises trauma and its impact and acknowledges digital technologies can trigger trauma, so there must be a commitment to advance ways to avoid tech-related re-traumatisation. A mere software update, website crashing or email changing can indicate for some people they are being hacked and violated.
This can result in trauma-related reactions such as numbness, hypervigilance or hopelessness (Fleischmann, 2022). Chen et al. (2022) in their paper “Trauma-Informed Computing: Towards Safer Technology Experiences for All” posit the following suggestions to make computing safe, such as:
From much of the research on therapeutic digital interventions, it’s noted that cultural appropriacy must also be taken into consideration, as is what we coin as a ‘cultural mediative’ method. Even ‘mindfulness’, for example, for people from many communities is not necessarily instilled by yoga and meditation. There are also questions relating to what extent these forms of mindfulness have merely been appropriated from India.
Therefore, Martinez (2021) has noted that the design of digital mental health in some instances may have to adapt tools for people of different languages, ages, cultures etc. This is relevant as Insel (2019) argues that the ‘digital divide’ is more along the lines of age than it is across socio-economic, racial or international factors.
At this juncture it is worth us sharing some important insight regarding the therapeutic value of a cultural mediative approach with people with MLTCs in Lambeth. In a recent project on chronic pain, where Centric partnered with Lambeth-based GP, Dr Dianne Aitkin and the Lambeth Wellbeing Alliance, we conducted an exceptional focus group, which all occurred online, revealing:
We therefore opine this supportive group approach, which involved a sample of people in Lambeth suffering chronic pain, can be replicated across SEL ICS and involving local people for a range of other MLTCs. The participants expressed at the end of the sessions, which ran for about an hour and a half, they thoroughly appreciated the session, if there would be more and importantly - that they actually felt better when talking about their conditions in this format.
Our upcoming work on restorative practice for black maternal care fits into this when it comes to culturally sensitive nuances in black women in maternity. This is not something which everyone can do and we argue there is scope for this to develop into a potential pilot service offering. The aspect of talking, though simple, can instill optimism, time, empathy allowing for expression of any concerns and the therapeutic sharing of experiences with people in a similar situation. A support group structure within a safe space.
This approach adopted by Centric also helps to address the distrust sentiment which is prevalent across the urban locale. There is a large cohort unwilling to engage with healthcare and we also found some of the participants were initially apprehensive of participating.
When they did, they found the process therapeutic, supportive and potentially reduced trauma. This way of facilitating difficult conversations and dialogue we feel is significant. This field requires that young people are also trained in digital skill development and future media skills, for people to continue this type of work and communities take ownership of narratives around trauma which particularly impact them.
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* Dr David Codyre (2019) from New Zealand notes that person-to-person support can be given more attention with the aid of these platforms and apps.
References
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