Supported Self Management Interventions for Relatives in Early Intervention Services Dr Fiona Lobban (DClinPsy PhD)

Transcription

1 Supported Self Management Interventions for Relatives in Early Intervention Services Dr Fiona Lobban (DClinPsy PhD)

2 If we achieve these aims People with bipolar will have A choice of effective psychological therapies A choice of therapist-delivered and self-delivered care As more people access these new approaches it should Reduce distress and increase coping Help people re-engage with wider society including the workplace

3 If we achieve these aims People Researching with bipolar the will psychological have features of psychosis & bipolar disorder A choice of effective psychological therapies A choice of therapist-delivered and self-delivered care As Developing more people and access evaluating these new approaches psychological it interventions should Reduce distress and increase coping Help people re-engage with wider society including the workplace Translating psychological interventions into clinical practice

4

5

6 Cheaper and more accessible Level 3 Structured family interventions for complex problems Level 2 Family focussed case management Less clinical development Or research Level 1 supported self management Family and friends groups

7 Cheaper and more accessible Level 3 Structured family interventions for complex problems Level 2 Family focussed case management Less clinical development Or research Level 1 supported self management Family and friends groups

8 Cheaper and more accessible Level 3 Structured family interventions for complex problems Level 2 Family focussed case management Less clinical development Or research Level 1 supported self management Family and friends groups

9 Overview 1) Why relatives need support 2) What kind of support relatives should be accessing 3) Problems with the existing focus on interventions at Level 3 4) Level 2 family focussed case management 5) Level 1 supported self management 6) Conclusions

10 Overview 1)Why relatives need support 2) What kind of support relatives should be accessing 3) Problems with the existing focus on interventions at Level 3 4) Level 2 family focussed case management 5) Level 1 supported self management 6) Conclusions

11 Psychosis approx 3% of population 3 rd most disabling health condition common onset in adolescence when majority living at home with relatives Impact on relatives high levels of distress (from early stage) practical & financial burden stigma, worry, shame, guilt, trauma, bereavement, etc positive aspects WHO (2001), Winefield et al. (1993), Barrowclough et al. (1996) Tennakoon et al. (2000), Lowyck et al. (2004)

12 4 key themes

13 Significant negative impact on relatives life my son was off school for like, ten months and I was off work because he.couldn t be left on his own and I just lost my own confidence, me own self esteem,.. and I just didn t have the energy to talk to people

14 Battling with services rather than collaborative partnership yes and I used to hear nursing staff speak about relatives and you know one comment was erm well no wonder he s ill look at the state of his mother but they don t seem to realise that the mothers in that state because she s been trying to cope.

15 Feeling misunderstood and blamed by staff.this nastiness and hostility, as soon as you walk in the room and talk to them and you think hang on a minute, my son daughter, whoever is ill. I m just trying to get them help they need and all you want to do is point the finger of blame and I think this attitude needs stamping out.

16 Finding that other carers provided the main support It was all about talking to other people and saying oh right yeah and then realising that you weren t necessarily to blame You gain more information, useful information from other people who have experienced it than you do from facts and figures

17 Carers contribute 119billion > total NHS costs 99 billion. 24% are caring for someone with mental health problems. It is morally right to support carers but it also makes financial sense Buckner and Yeandle (2011) Arksey et al. (2003)

18 Overview 1) Why relatives need support 2) What kind of support relatives should be accessing 3) Problems with the existing focus on interventions at Level 3 4) Level 2 family focussed case management 5) Level 1 supported self management 6) Conclusions

19 Family interventions work for service users (Cochrane Review) Reduce relapse rates Reduce hospital admissions Reduce social impairment Pharoah et al. (2006), (2010) Cochrane review

20 National Institute for Clinical Excellence (NICE) (2009) recommend: Offer family intervention to all families of people with schizophrenia who live with or are in close contact with the service user Range of formats e.g. individual family, multifamily groups NICE, (2002), (2009)

21 Families will have better access to information and education, social, economic, practical and emotional support. Services will give a meaningful response to families or key supporters within one week 90% of families will feel respected and valued as partners in care

22 So what s the problem?

23 Overview 1) Why relatives need support 2) What kind of support relatives should be accessing 3) Problems with the existing focus on interventions at Level 3 4) Level 2 family focussed case management 5) Level 1 supported self management 6) Conclusions

24 Logistics - Service user Family Interventions are not always accessible Audit of NHS Trusts reveal very low levels of implementation 3-17% - London unpublished (Garety) <2% Manchester (Haddock) - Family - 2 health professionals

25 Family Interventions improve outcome for service users...but does this necessarily improve outcome for relatives? Most trials in Cochrane review have no relatives outcomes or secondary

26 Evidence for effectiveness at first episode is less clear Meta-analysis of RCTs of FI for first episode (Bird et al 2010) SUs less likely to relapse or be admitted at end of treatment» BUT Lack of trials (n = 3) Some evidence may have negative impact for low EE families Linszen et al (1996) Lenior et al (2001)

27 Maybe structured Family Intervention is too *intensive / *time consuming / *threatening for some first episode families?

28 Maybe structured Family Intervention is too *intensive / *time consuming / *threatening for some first episode families? Could intensive interventions be interfering with a natural process of adjustment?

29 Maybe structured Family Intervention is too *intensive / *time consuming / *threatening for some first episode families? Relatives in first episode have different needs to more chronic populations? Could intensive interventions be interfering with a natural process of adjustment?

30 Question? How do we improve access to basic support that meets the needs of ALL relatives at first episode?

31

32 Cheaper and more accessible Level 3 Structured family interventions for complex problems Level 2 Family focussed case management Less clinical development Or research Level 1 supported self management Family and friends groups

33 Overview 1) Why relatives need support 2) What kind of support relatives should be accessing 3) Problems with the existing focus on interventions at Level 3 4) Level 2 family focussed case management 5) Level 1 supported self management 6) Conclusions

34 Early Intervention Services Carer s strategy UK Carers assessment (ongoing) Development of a shared formulation of individual and family difficulties Emotional support Information about mental health and the mental health system Practical support finances, accommodation etc Links to other support / services Early crisis intervention Relapse prevention Stress management Family and Friends peer support group Referral to structured family intervention where needed

35 So what s the problem?

36 <50% of carers get the contact with professionals they want - it is still too common for relatives to find themselves excluded from the process of recovery.find themselves portrayed as interfering or difficult when they raise questions about the services on offer or, more frequently, the absence of these services

37 Frustrating aspects of mental health system Shortage of adequate service provision locally Access to crisis services Access to mental health professionals Quality of mental health care professionals skills e.g. listening, empathy etc Treatment of carers by professionals People should not hide behind confidentiality issues No-one ever phones back when I make a call requesting help Constant turnover of staff Is unhelpful. Why bother to Build up relationships with them If they will soon be gone?

38 Maybe it s getting better with more recent developments in EIS services? True Qualitative study of 14 EIS in UK 2009 (Lester et al) Most carers were also happy with the care provided by the early intervention services, often comparing them positively with services they had previously been in contact with BUT Wainwright et al (in prep) self management in relatives in EIS -still challenges communication -inpatient and crisis services heavily criticised

39

40 LOTS but focus on 3 1. Lack of clear theoretical model for working with families 2. Organisational design = individualistic model of healthcare 3. Confidentiality

41

42 1. Lack of clear theoretical model for working with families Building on CBT framework that staff are already familiar with

43 Relationship Appraisals Reaction Key strategies Positive Service user not to blame but has problems that require support Stressed and worried Warm and seek help Maintain other aspects of life Information Respite Advice to manage

44 Relationship Appraisals Reaction Key strategies Emotionally over-involved Carer needs to return to parental role to make child better Stressed and worried Does everything for service user exhausted Loss of own interests Information Contact with other carers Finding positives about service user now

45 Relationship Appraisals Reaction Key strategies Critical / hostile Service user to blame needs to control problems Angry, frustrated, avoidant Critical of service user and services Engagement Psychoeducation with discussion Reattribution Problem solving Communication training

46 Service User Event Thought Feelings Behaviours

47 Service User Event = Hearing voices telling him he is worthless and disgusting Mother Event = Son stays in bedroom all day Thought God hates me and is telling me so I must be worthless and disgusting Feelings Depressed Hopeless Behaviours Isolates himself in bedroom all day Thought He needs to do something He s making things worse Feelings Frustration Behaviours Shouts at son

48 2. Organisational design = individualistic model of healthcare = In-house whole team training in collaborative engagement

49 The Somerset model Service level model Collaborative engagement all relatives Formal family interventions complex needs Cognitive interactional approach Evidence? More feasible to implement following training (Booker & Brabban 2004) Good feedback from families receiving it (Stanbridge et al 2003)

50 3. Confidentiality = Confidentiality as a complex dynamic process

51 It s all about there being greater awareness of the rights and responsibilities regarding information sharing, for all three parties: service user, carer and health professional (Pinfold 2006) Online training intervention for health professionals (2011)

52

53 Funding for Early Intervention Services being cut Service user not want family involved Families don t want to engage At work Stigma Feel blamed Service user refuses to engage with mental health services at all = there is no case manager

54

55 Overview 1) Why relatives need support 2) What kind of support relatives should be accessing 3) Problems with the existing focus on interventions at Level 3 4) Level 2 family focussed case management 5) Level 1 supported self management 6) Conclusions

56 Level 3 Structured family interventions for complex problems Level 2 Family focussed case management Level 1 supported self management Family and friends groups

57 Lao Tzu (clever Chinese guy) 4 th 6 th century BC founder of Taoism

58 Empower relatives with the knowledge, skills and information they need to manage psychosis

59 Self management = tasks a patient [relative] can perform to minimise the impact of that illness on his/her health status by him/herself or with the support of a healthcare provider Theoretically based on Bandura s (1977) model of self efficacy Evidence for effectiveness in range of physical and mental health conditions Government priority for long-term health problems Expert patient program IAPT Clark 1991, Wanless report 2002 DoH 2005 supporting people with longterm conditions Barlow et al 2002

60 Lots of books and websites already BUT Developed by health professionals not relatives Effective? Relatives experience I don t have the time to find all this How do I assess quality?

61

62 This study is funded by NIHR research for patient benefit. However, the views and opinions expressed within it do not necessarily reflect those of DH/NIHR Grant Holders Fiona Lobban (PI) David Glentworth (CI GMW) Vanessa Pinfold (Rethink) Warren Larkin (LCT) Relative, LCT- anonymous Graham Dunn (Manchester University) Gillian Haddock (Manchester University) Researchers Laura Wainwright Anna Clancy Adam Postlethwaite REACT Supporters Natasha Lyon Andrea Walker Warren Gould Stephen Pilling Dave Glentworth TSC Chair Prof Karina Lovell

63 Main Aim of REACT To develop a supported self management package for relatives of people experiencing first episode psychosis 3 Phases Phase 1 = Develop self management intervention Phase 2 = Feasibility trial relatives outcomes Phase 3 = Modify and disseminate

64 Systematic review what works for relatives? Our expert opinion? How does this feed in? Focus Groups what are people saying they need? CBT principles Intervention Reference Group - understanding is key - personalised - build on existing strategies - self as agent of change - recovery focussed Lobban, F, Glentworth, D, Wainwright, L, Pinfold, V, Chapman, L, Larkin, W, Dunn, G, Postlethwaite, A & Haddock, G, (2011) Relatives Education And Coping Toolkit REACT. Study protocol of a randomised controlled trial to assess the feasibility and effectiveness of a supported self-management package for relatives of people with recent onset psychosis, BMC Psychiatry, 11: 100, DOI: / X

65 Systematic Review Key Questions & Answers 50 studies evaluate intervention FOR relatives AND report relatives outcomes 1. Do family interventions work for relatives? YES!! 30 / 50 studies significant positive effect on at least one outcome.but 3. What are the key components in the ones that work? Not clear 11 key components -Not distinguish effective and ineffective studies 4. Why Not clear? Trial quality very poor 11/ 50 studies adequate on Clinical Trial Assessment Measure (CTAM) Lobban, F., Postlethwaite, A., Glentworth, D., Pinfold, V., Wainwright, L., Dunn, G., Clancy, A., Haddock, G. (submitted to Clinical Psychology Review). A Systematic Review of Randomised Controlled Trials of Interventions Reporting Outcomes for Relatives of People with Psychosis,

66 We do have a list of the key components that have gone into previous effective interventions

67

68 The information needs to start from the very beginning What is psychosis? What help is available? a menu of services How do I cope? practical advice What am I allowed to know? What information is reliable? Who can I contact if things go wrong? What am I entitled to? Assurance that I am not alone How can I manage them? What about the practical and legal issues? What are the side effect of the medication? Is there anything else? What do I need to know? What should I ask?

69 Website CD/DVD All information Modular Supplements Staged Signposting Plain English Inspiring Reading material

70 Overview and guidance Who is it for is it me? What can I expect from the toolkit? IT support or chat support Telephone support A buddy system

71 Too much too soon Feeling overwhelmed Denial Feeling I have already tried everything Too tired Hopeless Not receiving necessary support

72

73 Toolkit 13 modules Introduction to REACT What is Psychosis? Managing Positive Symptoms Managing Negative Symptoms Dealing with Crises Dealing with Difficult Behaviour Managing Stress Thinking Differently Managing Stress Doing Things Differently Understanding Mental Health Services (how to get the help you need) Treatment Options The Future Resource Directory Jargon Buster Support STR workers 6 months One face to face meeting / telephone support Flexible to need up to 1 hr per week

74

75

76

77

78

79

80 Phase 2 = RCT to assess How feasible in NHS? How acceptable to relatives? Estimate impact?

81

82 GHQ = mean 34 = 65% clinical caseness Modal age F:M = 85: 18 Mothers 74% White British (97%) Service Users = 20-25yrs -

83 GHQ REACT TAU 22 Baseline mean (SD) Follow up mean (SD) GHQ Baseline mean (SD) FU mean (SD) REACT (15.67) (15.2) TAU (19.00) (15.42) RC = P = %CI = to -0.64

84 Distress has reduced in both arms but significantly more so in REACT compared to TAU Clinical caseness REACT = 70.6% cases at baseline to 51% cases at FU TAU = 60% cases at baseline to 56% cases at FU Effects Size = mean diff / shared standard deviation = 6 / 15 = 0.4 REACT group also felt significantly more supported than TAU group (p=.02)

85 Toolkit Overwhelming preferred paper version Liked case studies felt less alone When I got REACT manual, I felt better because it showed me, it first of all it related to what was going on in my house Support Telephone and support used Total minutes of support over 6 months = median mins (range 0 855) = roughly 5 mins per week Oh very reassuring. It [support] saved my life I know that sounds melodramatic, but it saved my life, I feel as if it saved my sanity in a way Timing Some felt needed it earlier but others didn t. Unfortunately we were well and truly past needing it, by the time we came to get it When they were all sorted out then I could concentrate you see

86 Relatives liked REACT

87 REACT Band/Rate Cost 1 face to face session with an STR worker (approx 60 mins) Travel for STR to house (approx 20 miles return) 24p p/mile minutes of support from STR worker their time Supervision 6 x 1 hour sessions time for STR worker Supervision 6 x 1 hr sessions time of band 7 supervisor TOTAL Structured Family Intervention Band / rate 18 sessions (2 therapists) 7 2,972 Travel to 18 sessions 24p p/mile 86 Supervision 5 x 1 hr therapists time Supervision 5 x 1 hour band 8 supervisor Total 4,429.61

88 Relatives liked REACT Commissioners loved REACT

89 Provides preliminary evidence for the feasibility and effectiveness of supported self management approaches e.g.react: Relatives and EIS keen to take part High distress at baseline assessment High follow-up rate Participants find REACT acceptable and engaging Compared to TAU - Significant positive changes on several outcome measures for REACT arm of trial

90 So where does this all leave us?

91 Overview 1) Why relatives need support 2) What kind of support relatives should be accessing 3) Problems with the existing focus on interventions at Level 3 4) Level 2 family focussed case management 5) Level 1 supported self management 6)Conclusions

92 Choice Level 3 Structured family interventions for complex problems Elevator Care Level 2 Family focussed case management Level 1 supported self management Family and friends groups

93

94 Bailey R, Burbach FR & Lea S (2003) The ability of staff trainein family interventions to implement the approach in routine clinical practice. Journal of Mental Health Kuipers, E., Onwumere, J., Bebbington, P., (2010). Cognitive model of caregiving in psychosis. British Journal of Psychiatry, 196, Lobban, F., Glentworth, D., Wainwright, L., Pinfold, V., Chapman, L., Larkin, W., Dunn, G., Postlethwaite, A., Clancy, A., & Haddock, G., (2011) Relatives Education And Coping Toolkit - REACT. Study protocol of a randomised controlled trial to assess the feasibility and effectiveness of a supported self management package for relatives of people with recent onset psychosis. BMC Psychiatry 11, 100 Lobban, F., Glentworth, D., Haddock, G., Wainwright, L., Clancy, A., Bentley, R., (In Press). The views of relatives of young people with psychosis on how to design a Relatives Education And Coping Toolkit (REACT). Journal of Mental Health Lobban, F., Glentworth, D., Chapman, L., Wainwright, L., Postlethwaite, A., Dunn, G., Pinfold, V., Larkin, W., Haddock, G., (submitted to British Journal of Psychiatry). Feasibility of a supported self management intervention for relatives of people with recent onset psychosis: REACT study Lobban, F., Postlethwaite, A., Glentworth, D., Pinfold, V., Wainwright, L., Dunn, G., Clancy, A., Haddock, G. (submitted to Clinical Psychology Review). A Systematic Review of Randomised Controlled Trials of Interventions Reporting Outcomes for Relatives of People with Psychosis Postlethwaite et al (in prep). Improving Early Intervention in Psychosis Services: Increasing levels of satisfaction amongst carers Stanbridge RI, Burbach FR, Lucas AS & Carter K (2003) A study of families satisfaction with a family interventions in psychosis service in Somerset. Journal of Family Therapy Wainwright et al (in prep) The Subjective Experience of using the Relatives Education And Coping Toolkit (REACT): A Qualitative Study of Relatives Feedback Wainwright et al (submitted) What do Relatives Experience when Supporting Someone in Early Psychosis?