| Literature DB >> 34083333 |
Rachel Perry1, Emma A Adams2, Jill Harland1, Angela Broadbridge3, Emma L Giles4, Grant J McGeechan5, Amy O'Donnell1, Sheena E Ramsay1.
Abstract
OBJECTIVE: To explore the perceived reasons underlying high mortality rates among people with multiple and complex needs.Entities:
Keywords: preventive medicine; public health; qualitative research
Mesh:
Year: 2021 PMID: 34083333 PMCID: PMC8183219 DOI: 10.1136/bmjopen-2020-044634
Source DB: PubMed Journal: BMJ Open ISSN: 2044-6055 Impact factor: 2.692
Characteristics of participants from the three focus groups
| Individuals with lived experience FGD | Front-line staff FGD | Manager/commissioner FGD |
| 5 participants. 2 female. 3 male. | 7 participants. 6 female. 1 male. 2 mental health. 1 housing. 1 homelessness. 1 MCN. 1 drug and alcohol. | 9 participants. 6 female. 3 male. 2 housing. 2 mental health. 2 MCN. 1 local council/government. 1 drug and alcohol. |
FGD, focus group discussion; MCN, multiple complex needs.
Topic guides for the focus groups
| Topic guide for focus groups with individuals with lived experience of MCN | Topic guide for focus groups with staff working with MCN groups |
|
Awareness of mortality within their peer group. What factors/life experiences do they think contribute to premature mortality within their peer group. Any concerns they have about this personally or for others. Do they think anything could have been done to prevent people from dying? Can they describe this? What types of help and support would they like to see being developed/provided? How would this be best offered? |
Awareness of premature mortality within multiple and complex needs groups. Awareness of risk factors for premature mortality. Current approaches to identify those at risk—perceptions of effectiveness. What would help the services identify/target those at risk. Current interventions—perceptions of effectiveness. Types of interventions/approaches they think should be in place. How could this be taken forward. |
MCN, multiple complex needs.
Key quotations illustrating subthemes within understanding factors underlying premature mortality in MCN
| Theme | Quotes |
| Burden of mental ill health and substance misuse issues | “Most of the people I know that’s died, their mental health has just been shot to bits, it’s all about the drugs. They’re taking the drugs because of mental health, is that bad? I’d say more the mental health killed them…the drugs just done that job.” —Individual with lived experience of MCN |
| “These [new psychoactive substances] are completely changing the conversation to what they were 10, 15 years ago because these drugs, how they work, how quickly they hit, how quickly they can be produced, how quickly for many of them you’re on cloud 9, you’re away from it, 15 minutes later you’re back as a normal person. Within those 15 minutes what damage you could have done to yourself, to your life, to other people, to other people’s lives.” —Individual with lived experience of MCN | |
| “And there’s a reason why people are taking spice, because oblivion is better than reality. That’s the truth of it. It’s a much better option facing up to what society is.” —Individual with lived experience of MCN | |
| “I just find that people who have got mental-health issues and also have addiction problems fall through the gaps, time and time again.” —Front-line staff | |
| “The waiting list for CAMHS [child and adolescent mental health services] is ridiculous. You’ve got to be well up there on the scale to get referred. Someone with a little bit of anxiety is not going to get put through to CAMHS, whereas that anxiety will then just carry on getting worse and worse and worse, and then you end up with someone with real mental-health issues.” —Front-line staff | |
| Lack of hope, stigma and health-seeking behaviour | “You don’t see another way…it’s just doom and gloom and like you say this one’s dead, this one’s in prison, there’s nothing ever…it’s like being in the sort of devil’s dungeon, to be honest.” —Individual with lived experience of MCN |
| “This is my life, so it’s not a care in the world if it is death. Death has got to be better. So to be honest living that life, to some I think death would just be a much easier answer.” —Individual with lived experience of MCN | |
| “It’s a remembrance wall. So all the people in the service that have passed away and every time you go in it’s just getting more, you have to squeeze the names in of the people that have been lost and I know them all, I’m going, ‘Oh so and so has died.’” —Individual with lived experience of MCN | |
| “’Oh you’re an addict,’ the look on their face that it changes visibly, they treat you completely differently, ‘Oh he knows.’” —Individual with lived experience of MCN | |
| “I think that word as well, like, junky really boils my blood, heroin addict is much better. Just picking up the junky, junky, junky, that’s all we get.” —Individual with lived experience of MCN | |
| “…this doctor at the time of [the] appointment isn’t going to be able to comprehend even a tiny touch of what your life is.” —Individual with lived experience of MCN | |
| “We talked to the young people who have got mental health issues and they’re kind of like, ‘Oh no, I don't want to talk to anyone, I don’t want to tell them I’ve got a problem. I’d rather just smoke some weed or take some grass and I’ll be okay.’” —Manager/Commissioner | |
| Poor navigation and limited services | “My staff are supposed to spend their time navigating and signposting and supporting people into other services, probably about 60% of their time is now spent doing benefits stuff, just so that people have got enough money in their pockets.” —Manager/Commissioner |
| “I’m facing this maze full of doors and every time I open a door, there’s another door, sets of doors. There’s no coherent structure within the system that says, Here’s a person who is asking for help, who’s engaging with everything that we’re giving, can we please pull this together so we can actually provide the help that this person needs.” —Individual with lived experience of MCN | |
| “There are no youth services left…there’s nothing left, and that was a huge safety net. It was a learning experience, it was preventive, and it was a place of safety for youth, and it’s not there anymore.” —Manager/Commissioner | |
| “It’s often such a desperate situation that we’re having ridiculous conversations that we want someone to be sectioned or we want someone to go to prison just so they’re in some kind of contained environment where we feel we can try and manage some of the risks.” —Manager/Commissioner |
CAMHS, child and adolescent mental health services; MCN, multiple complex needs.
Key quotations illustrating themes within opportunities for intervention to prevent mortality in MCN groups
| Theme | Quotes |
| Intervention timing | “Preventive measures early on may stop the numbers of people coming through with multiple and complex needs. So it’s the preventive, it’s the community centres, it’s the youth centres, it’s those things where the learning happens.” —Manager/Commissioner |
| “People leaving prisons, we know the times when you’ve been drug free and then you transition in and out of prison etc. or transition from being clean for a bit to then lapsing, acute risk there. That would be a flag.” —Individual with lived experience of MCN | |
| “We all know times of peak vulnerability, they don’t need to be necessarily shared emotionally…people leaving prison…loss, bereavement, grief, divorce.” —Individual with lived experience of MCN | |
| “There’s often an inability to exploit windows of opportunity where…support workers will try and get all their ducks in a row. So the mental health stuff, the mental health treatment, housing, benefits, all of that sort of stuff, it’s rare that you’re going to manage to get all of that sorted in the two hours of window opportunity you’ve got. Then the ship sails sometimes and you don’t know whether that’s going to come back again or when it’s going to come back again.” —Manager/Commissioner | |
| Intervention approaches | “I think there needs to be focus on it being really a person-centred approach and say, ‘This isn’t working for me at the moment and that’s how I would like things to be,’ and giving them that sense of responsibility.” —Front-line staff |
| “There’s a connection [as a peer supporter]. Immediately there’s a connection but through that connection you feel like you’ve gotten in and you feel like what you say has a better chance of making a difference to that person.” —Individual with lived experience of MCN | |
| “I volunteer in services and in statutory services and the differences you see and people’s attitudes towards you when they learn that you’re an addict or an ex-addict, I’m still an addict. I am an addict, I just don’t use. The difference that you see in people’s faces when they say, ‘Oh you’re an addict,’ the look on their face that it changes visibly, they treat you completely differently, ‘Oh he knows.’” —Individual with lived experience of MCN | |
| “We exist in a competitive tendering landscape and we need to leave that aside and come together and share good practice and learn from what’s happening across the world.” —Manager/Commissioner | |
| “We need as people for services to be talking to one another to be sharing our data, to be aware of all of the needs because…that’s how we get rounded people by having well rounded service provision.” —Individual with lived experience of MCN |
MCN, multiple complex needs.