Inclusive practice: stigma, safety and strengths

Beck:

Hello Rochelle thank you for joining me today. We thought this would be a really important part of our traumatic bereavement resource. I wonder whether first I could ask you to introduce yourself and tell us a little bit about the work you do.

Rochelle:

So, I’m a lecturer in global health at the Institute for Global Health at UCL (University College London) and by training I am a community health psychologist. What that means is that I am really interested in promoting research and action that looks at the interface between health and community and social life. So, a big part of that is thinking not just about sort of wider relationships outside of families and households, so thinking about cultural dynamics, but also about sort of wider structural dynamics in society. So, what does it mean to be a person in the world? So, how do certain dynamics of personhood and who we are — things like our ethnicity our cultures — sort of shape our opportunities for health in society, in the world.

For most of my career I’ve worked in mental health specifically. I’ve had the privilege to do work with Black Caribbean and Black African communities in London around topics around mental health and looking at reducing inequalities and access and then sort of how do we bring systems and communities together in in those type of efforts.

Beck:

I’m really struck on how relevant this is to our work. We’ve been thinking in the resources what does this death particular death mean for this particular child and young person and how have they made sense of it. And in that, we’re considering how important it is to be mindful of their history and their lived experience. We talk a lot about collaborative working and really for us, as practitioners on the ground working with children and young people who’ve been bereaved, for us to think about that role of stigma and how that might impact on the way we engage with and work effectively with children and young people. I wonder whether you could tell me a little bit about that?

Rochelle:

I’m really, really excited to hear you talk about things like history and sense making and stigma because actually I think all of those 3 things are related and really help us to understand and think about where stigma comes from. So, in my work and in the body of work of social psychology we can we actually think about stigma as a knowledge system. So it’s a knowledge system that is rooted in lived experience. So it might be someone’s individual experience, but it also is linked to sort of collective and historical experiences of people that you identify and affiliate to. So if, for example, you might not necessarily as a young person have been excluded from school, but you know lots of stories about other young people who look like you and are from the same backgrounds who have these experiences in school or with other different sectors of the health and social care infrastructure, and those form your knowledge system. So what happens with stigma is that it actually becomes a protective mechanism to help sort of shield you from things that you might feel are risky — protecting the ways in which you’re able to see yourself in the world and be in the world. So, really, if you want to sort of deal with stigma, you ultimately have to deal with what’s behind stigma which is those histories — those histories of personal exclusion but also wider social exclusion for people and communities who look like you and live like you and survive like you. So, I think it’s really important for practitioners to create opportunities to work with and understand those knowledge systems — not to ultimately try and replace them. I think a lot of times when we talk about stigma we say, oh it’s a lack of knowledge or a lack of understanding here’s more information about x, y and z and then you’ll know about it and the stigma will go away. What that does it actually sort of erases and under appreciates the power of somebody’s existing knowledge system that has helped them to survive and get where they are today. So if you’re wanting to get to a space to really enable true collaborative working where decision making is equal and people on both sides of that equation believe that, then the point isn’t to replace one knowledge system with another, but to try and replace the evidence for the value of one knowledge system over another. So, building opportunities and experiences for people who have had this negative history with statutory services to build new examples of what it’s like to engage with services, so you’ve got a new knowledge system that helps you navigate the world that you have trust in and then the other one doesn’t serve a purpose anymore and it and it gets replaced. But, at the same time, there needs to be change on the knowledge systems that are held by practitioners as well — in the sense that they really see the value and the strength in the value in the knowledge systems that are used by people in their everyday lives. So that means really hearing what people are saying and trying to act on what they’re told in complex ways.

Beck:

Thank you that’s really interesting. I’m thinking about when we’re first meeting with a family and we’re trying to engage with them that it’s not our role to put our best pitch about why you should drop all your resistance or your hesitance on working with us — it’s much more about us investing time in understanding that family and their lived experience and so that we can find some middle ground and see whether there’s a way forward where we all understand something of each other’s perspective and what might be useful. And then I’m thinking of the importance of time in doing that. That this isn’t going to be a quick rushed conversation: “Here you’ve been referred to us. This is what we offer and it’s great.” We’ve got to invest quite a lot more time and not try to convince the family, as it were. And then I’m thinking about referrals on — when we’re then looking at referring on to specialist services. And that there might, for a good number of reasons, be some hesitance for that family. Us then investing time again to think about what this suggestion means for this family and the importance of us doing things in a way that still feels safe and for that family — that we’re not asking them to put aside every value and belief that they’ve formed.

Rochelle:

It’s really important to talk about safety because I think when we think about trauma and specialist referrals in in the mental health space, we’re often focusing just on the psychological dynamics of that trauma and that referral. What that sort of does is strips away the other structural or economic realities that might be around that trauma.

I think one of the things that excited me the most about the guide was that there’s this desire and an emphasis on understanding what does this death mean for this child. When I hear something like that I think, okay, has the loss of this this person meant that the family is now in financial vulnerability? Have they lost their primary caregiver? Are they now worried about where they’re going to live? Have they seen or heard their other parents or family members worrying about things because of the death of this parent or loved one? And also, the way that someone has died could also be something that is extra traumatic if it contributes to the loss of position in your local community. So, for example, if the death is by suicide and suicide is then is viewed in some communities as a type of death that is very heavily judged or stigmatized in itself or not congruent with the ways in which different groups think about a good death, for example. So ultimately just trying to think of it and make sense of the ways in which this death make people feel a lack of safety in a lot of different ways. And so, this idea around having collaborative decision making and really being present and listening to what people have brought forward also means that you are engaging in something which in the literature is called communicative justice, which is the idea of trying to ensure that what people bring to you in its complexity is heard and taken forward. This is a huge thing that health services often struggle with because we’re very sort of diagnostically driven. But in doing that, we are sort of invalidating the lived experiences of people and only picking and choosing the bits that we want to respond to. And so, I think that it’s really important for that safety to be developed and that trust to be developed that you are engaging in a practice that hears the fullness of a story and acts on it. So, not just hears it, but finds pathways to show that you’re acting on it because that also contributes to the reduction of stigma or hesitance. Because you now have a lived experience of a system that supports you in your entirety and in your fullness rather than just the pieces that make sense to the system.

Beck:

Thank you, that’s really helpful. We thought about the ways in which helping a family to engage with us, or us working to engage with the family and understanding their lived experience, and then thinking particularly about the context of the death now what it might mean for them. And for us in bereavement services, looking to what other systemic factors might be at play here and what other community resources there might be to support this family, if there are economic pressures or lack of social support. So us looking broader than maybe our more typical bereavement support and engaging with the family around that.

Is there anything more we could be considering in terms of encouraging engagement and working effectively?

Rochelle:

I guess one last thing that would be really important to hang on to is that community systems also have a lot of strength and value within them to help people survive and cope. You know, people all over the world and every place and corner you find them survive things that we sometimes can’t really imagine that they survive. That survival is rooted in those knowledge systems and practices and collective actions of communities and families. So, I think it’s really important to also identify and strengthen the good bits and validate and celebrate the good bits because that also is how we show that we value people’s knowledge systems. That we say, well there are lots of things here that are working, and our job is to collectively strengthen the ones that are really good. And with the ones that aren’t working, we find new ways to solve these problems. I think that is a true type of equality that people are working towards. Saying: “There are things that you do well and let’s strengthen them and build from there.” So, I think that’s also a really important aspect for achieving communicative justice and really celebrating the strengths that people can bring to the table as well.

Beck:

Thank you. I think finishing with that idea of us remembering to recognize and identify strengths and within a family within their community system helps us see us as one hopefully valuable part of what we can offer families, but not exclusive. And that there are lots of other parts that families hopefully will be able to draw on to support them in their grief. Thank you, Rochelle.

Rochelle:

No problem. Thank you.