Reducing loneliness and social isolation for people with mental health problems - PowerPoint Presentation

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Reducing loneliness and social isolation for people with mental health problems

Dr

Brynmor

Lloyd-Evans,

Division of Psychiatry,

UCL

(with input from

Sonia Johnson,

Farhana

Mann, Johanna Frerichs)

Disability and Social Inclusion Seminars, City University 21/06/18Slide2

Today’s talkBrief overview of the relationship between loneliness and mental healthIntroduction to the Community Navigators studyPreliminary results Slide3
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Population rates of lonelinessBritain high levels of lonelinessOlder people – third over-50s and half 0ver-80s

Peak in younger people

Third of 16-24 year-olds

Much less known about children, one study found 20% 8-year-olds lonely (5% ‘always lonely’)

Certainly not just a problem for the elderly!Slide6

‘Risk factors’Older people Lower incomeHigh stressLiving alone/being unmarried/bereavementPhysical disability, sensory deficitsMental health problemsNew mothers, studentsRefugees, ethnic minority groupsBoth men and women affectedSlide7

Loneliness and healthLoneliness is a risk factor for a range of physical health conditionsMarked cross-sectional associations between being lonely and:DepressionAnxietyPhobias

Suicide/

parasuicide

Dementia

Eating disorders

Psychosis Slide8

Mental health over time?Systematic reviews:Are lonely people more likely to become mentally unwell? Fairly good evidence that this is the case for depression at least (Mann et al in progress)

Do people with mental health problems have worse outcomes if

they are also lonely

Good evidence this is the case for depression (Wang et al. 2018)

Almost nothing in more severe mental health problems like psychosis (bipolar/schizophrenia)Slide9
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Potential interventions (Mann et al. 2016)

Changing cognitions

Social skills and psychoeducation

Socially focused supporter

Wider community approaches

DIRECT

INDIRECTSlide11

The Community Navigators Study 2-year study – started March 2016Funded by the NIHR School for Social Care ResearchResearch Team from UCL and McPin

Intervention was co-produced with service users and practitioners

Aim: To develop and test the feasibility of a community navigator programme to reduce loneliness for people with complex depression or anxiety using secondary mental health servicesSlide12

Project

Study Team

Sonia Johnson,

Bryn Lloyd -Evans (UCL)

Vanessa Pinfold (

McPin

), Glyn Lewis, Jo Billings, Rebecca Jones (UCL),

Study Researchers

Kate Fullarton, Jessica Bone, Theodora Stefanidou (UCL) Johanna Frerichs (McPin)

Working Group

6 lived experience experts,

inc.

Bev

Chipp

,

Anji

Chhapia

, Jackie Hardy, Nick Barber

3 practitioner experts: Rob Henderson, Anna Shorten,

Anna Smith

Community

Navigation Team

Zubair Matin, Iman

Nafi

, Jane Plimmer (Navigators)

Sue Costello,

Rob Henderson,

Anna

Shorten, Anna Smith (supervisors)Slide13

Structure of the Community Navigator studySlide14

Following MRC guidance for developing a complex interventionSlide15

The Community Navigator Programme: structureUp to ten 1:1 sessions with a NavigatorAdditional group element (3 groups)Over a 6 month-period Access to a £100 budget per participant to support social activity

An addition to standard

care

Informed by social identity theory, adopting a solution-focused approachSlide16

Organisational support funding and management support

Team support

ongoing care coordination: CDAT and Barnet CMHTs

Supervisor support

Monthly supervision in BEH and in C&ISlide17

Community Navigation

Social identity building

Solution-focused

Breaking goals into steps

Rehearsal

Practical support and budget

ReframingSlide18
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The Community Navigators Study: theory of changeSlide21
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The Feasibility TrialRCT (n=40) 2 NHS Trusts (Camden and Islington and Barnet, Enfield and Haringey)Treatment group (n=30) receive CN supportControl group (n=10) will be given a written list of local resourcesBaseline and 6-month follow-upQualitative interviews with participants (n=20) navigators (n=3) and other stakeholders (n=10

)

Main outcomes

Trial recruitment and retention

Intervention integrity

Acceptability and perceived usefulnessSlide23

Outputs from the studyA manual for the Community Navigators programmeClear ideas about the expected outcomes of the programme and how they will be achieved: a refined theory of changeTested procedures and outcomes to use in a future trial Preliminary evidence about the acceptability and usefulness of the navigator programmeSlide24

* Pre-peer review (provisional)UCL Division of Psychiatry

Community Navigator Study

Feasibility trial: Preliminary results*Slide25

Could we recruit people to a trial?61% of service users screened were eligible(not using crisis services; not planned for discharge; speak English, other)62% (40/65) of those approached agreed to take part

No-one

was screened out as not lonelySlide26

Who took part?72% femaleMean age: 4248% White British80% with affective or anxiety disorder diagnosis

5%

in paid employment

2.5%

married or cohabiting

(single 62%, separated/divorced 33%, widowed 2.5%)Slide27

Could we retain people in the trial?No withdrawals from the trialFollow-up interviews completed: n=35 (87.5%)Received the trial intervention as per protocol: n=24 (80%)One participant in the treatment group died by suicide: the only serious adverse event, not study-relatedSlide28

Did people get the intervention as planned?24/30 participants received the intervention per protocol. Of these:24 did network mapping21 developed a “My Connections Plan”20 went to a community activity with their navigator12 (50%) attended at least one group64% of meetings took place in the community (119/186)

37% of meetings involved contact with someone in addition to the navigator (69/186)Slide29
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What do the outcomes data indicate?40 participants is too few to show us whether the intervention was effectiveLoneliness data were too skewed to estimate an effectDepression data: Patient Health Questionnaire (PHQ-9) Total Score: Adjusted

Difference:XXXXXXX

The “true effect” of the intervention for depression is somewhere between a very large positive effect and a

s

mall negative effectSlide31

UCL Division of PsychiatrySlide32

UCL Division of Psychiatry

Baseline and 6 month follow-up

loneliness outcomesSlide33

UCL Division of PsychiatryBaseline and 6 month follow-up

loneliness outcomesSlide34

Quantitative evaluation: lessons for a future trialDejong-Gierveld Loneliness Scale may not be ideal for SMI groupsOptimal ways to collect social care use data and process recording tbcBut recruitment

, retention and data collection were all feasibleSlide35

Community Navigators Study – qualitative evaluationPreliminary testing 9 interviews: 6 service users and 3 community navigatorsTo inform improvements for the feasibility trial

Feasibility trial

32 interviews: 19 service users; 7 health care professionals; 3 friends/family; 3 community navigators

To determine the

acceptability

of the interventionSlide36

2-stage analysis approachSlide37

Acceptability framework

“A multi-faceted construct that reflects the extent to which people delivering or receiving a healthcare intervention consider it to be appropriate, based on anticipated or experiential cognitive and emotional responses to the

intervention.” page 8

Sekhon

et al.

2017

Affective Attitude

How an individual feels about the intervention

Self-efficacy

The participant's confidence that they can perform the behaviour(s) required to participate in the intervention

Burden

The perceived amount of effort that is required to participate in the intervention

Ethicality

The extent to which the intervention has good fit with an individual's value system

Opportunity Costs

The extent to which benefits, profits or values must be given up to engage in the intervention

Intervention Coherence

The extent to which the participant understands the intervention and how it works

Perceived Effectiveness

The extent to which the intervention is perceived as likely to achieve its purposeSlide38

Intervention Coherence

The extent to which the participant understands the intervention and how it works

“I’ve been through a lot of low times with depression and anxiety. It’s left me disengaging myself with everyone, like my friends and my family and just wanting to stay in a lot and be on my own. I just thought that this was the perfect study to get me to

interact with

people

but

also to do something that I enjoy doing as

well.”

“With [name of community navigator] it’s, like, getting me back into the circle of, like, ‘What do you like to do? What do you want to do?’… [name of community navigator] wanted me to get back into having a hobby or doing something, rather than just sitting indoors and do nothing.”Slide39

Affective Attitude

How an individual feels about the intervention

“No, it was wonderful. I really enjoyed the experience, it was amazing, I’d do it again if I could. I’d have another ten sessions and carry on with it.”

“I mean I don't really feel like I've achieved my goals that I would have had or set or whatever but I still think it's been a really good experience and it's been definitely worth it”

“What my overall experience, it was good. I got a hell of a lot out of it. I would have been a completely different place today if I wasn’t in it.”

“Just don't stop it. The last thing I'm going to say is do not stop it. Don't keep it as a trial, make it a real thing for people so they know that there is someone there”Slide40

Affective Attitude (2)

How an individual feels about the intervention

“I was a bit sad. I couldn’t believe it when she said it was her last meeting. Oh my God! I was a bit sad.”

“

I’m a bit worried I’ll be in limbo. Because I felt as though I had back up when I was doing it with [Name of community navigator] and all that. But now, I’ve got to rethink.”

“So that was a relief, because…imagine if I lost [name of community navigator] and then I lost [name of care coordinator]. That would be awful.”

“I think it leaves you needing more help. It leaves you, okay, I’ve opened up these avenues now and I’ve expanded boundaries [in the park] and I’ve enrolled on this course, but there’s no follow up. It ends and then you’re…seeing somebody six, seven times is not enough. It needs to be longer.”Slide41

Burden

The perceived amount of effort that is required to participate in the intervention and the part

“The last thing I really want is to make new friends because I already feel bad about the ones that I’m not making time for now”

“For example, I want to go out, I can change my mind straightaway, I need to be pushed. I want to do stuff, and then it’s like, in the morning I wanted to do this and this, after half and hour or an hour or two hours, I feel completely opposite, I don’t want to do anything.”

“It’s just about finding the right thing, when you feel you’ve got enough time for it and I just have always felt, kind of, too busy to do any of this study. It’s just when it comes to things I’m a very slow person I guess, anything more than one thing a day is too much for me.”

“I had my panic attacks and my usual difficulty staying in the room…I knew I was going to go through quite a bit of suffering to manage to say for three hours in the class. But, yes, I managed it and I was really pleased. I’ve done two weeks now.”Slide42

Perceived Effectiveness (I)

The extent to which the intervention is perceived as likely to achieve its purpose

“

I think I’m more social. I’ve reconnected with friends from secondary school. Yes, I’ve reconnected with a lot of people and I haven’t been feeling quite so lonely at all.”

“I’ve

not felt lonely.

There’s

so much to do, I can go out my front door, if I get a bit weepy, I’ll go out my front

door and I’ll go and do these. I’ll go to the library, I’ll jump on the bus, it’s only round the corner there, I’ll jump on the bus and go to the library. I’ll go places, I won’t…no I don’t feel lonely.”

“

Well you don’t feel that your life is over. When you do have bad thoughts, you don’t actually act on them, you think it could be a hell of a lot worse.”

“I would still be moping around, depressed, with nothing to look forward to. Yes, so it helped me a great deal this, yes.”Slide43

Perceived Effectiveness (1I)

The extent to which the intervention is perceived as likely to achieve its purpose

“

I meant once I knew how to go there by myself, the first time, maybe sometimes [name of community navigator] would occasionally come with me all the way there or meet me there but it would give me the confidence to go by myself.”

“

Yes, I’ll be going there Friday. I quite like that. It’s only for an hour, then you can sit around having tea and coffee afterwards if you wish to. I’m speaking to a lady called [name] at the moment.”

“[

Name of community navigator] has helped me in the fact that she’s made me try to see some people differently to what I may initially…not to just initially cut everybody off from the start without giving it a chance and seeing whether we would get on.”

“

What I did get out of it though is, I haven’t actually started on any long-term hobbies or anything, but we have been to a few places, met some people and I know a lot more options are available to me.”Slide44

Qualitative evaluation: Conclusions

Intervention was broadly acceptable

Requires people to challenge themselves and face situations they don’t feel comfortable in

Potential to help people to make changes – in smaller and larger ways

Need to consider the timing and length of the interventionSlide45

What next for addressing loneliness in mental health? Investigate the effectiveness of the Community Navigators programme in a multi-site RCT?

Should we find out more about how people with mental health problems experience loneliness/how this relates to measures?

Should individual therapy for emotional loneliness be part of the approach to loneliness in people with mental health problems?

Should digital tech be part of such interventions?

Should we try to connect people with mental health problems to each other to address mental health problems?

Should we try to adapt Community Navigators approach to people with psychosis/bipolar?

Should we assume that similar approaches to loneliness work in general population & in people with mental health problems?

Do individual-level approaches imply a disregard for the relationship of loneliness with social deprivation and social inequality?

Could we build a coalition that really tries to address the roots of social disconnection at a variety of levels? Slide46

Thank you!This presentation represents independent work funded through the NIHR School for Social Care Research. The views expressed in this presentation are those of the authors, and do not represent those of SSCR, NIHR or the NHS. For further information, please contact Brynmor Lloyd-Evansb.lloyd-evans@ucl.ac.uk