Caring for Carers - improving relationships in psychosis.

Transcription

1 Caring for Carers - improving relationships in psychosis. Professor Elizabeth Kuipers King s College London, Institute of Psychiatry, Psychology and Neuroscience Department of Psychology 17 th October 2014 Illustration by Annie Rae

2 Outline Background - what is it like to be a carer of someone with psychosis? Research findings Models: cognitive model of psychosis cognitive model of caregiving in psychosis Implications for carer interventions including focussed FI for some carers. 2

3 Schizophrenia & psychosis costs 11.8 billion a year. 220,000 people living in England with (someone with) schizophrenia. (Schizophrenia Commission 2012) 3

4 What is it like to have psychosis? I was diagnosed as having schizophrenia in the 1980s when I was in my mid-20s, although in retrospect I had some delusions and hallucinations when I was at university. I was hearing voices and reading strange meanings into what was going on around me. (NICE Guidelines Update for Schizophrenia 2009, personal account C) 4

5 David Marsh s Mercury from Schizophrenic Artist's Paintings 'Out of This World' 5

6 What is it like to be a carer for someone with psychosis? Definition You are a carer if you provide help and support to someone with a mental health problem and/or a physical disability. Underlines how caring relationships can be mutual Distinguishes between paid carers (professional) and unpaid caregiving MIND 6

7 Experience of being a carer in psychosis I am the husband of someone who was diagnosed with schizophrenia 20 years ago. When we got married I was aware she had had minor problems with depression in the past, but did not think this would cause any problems in our life together. We had been married 4 years when she first became ill. I had not realised how serious things had become. After treating her for a mood disorder for over a year, the doctors eventually told me she had schizophrenia. In those early years my thoughts were mainly disbelief and incomprehension at the diagnosis. I had no accurate idea of what (it) was, and thought it would soon blow over, and my life would be all right again. (NICE Guidelines Update for Schizophrenia 2009, personal account H) 7

8 The experience of being a carer: at first episode What upsets me most is that I ll never know what he would have been like if this illness had never happened (father of 19 year old son with psychosis) I find myself asking for God to take it from her and give it to me. If I could do anything to take it from her, I would prefer that (mother of 19 year old daughter with psychosis) 8

9 And in subsequent episodes: we all get paranoid sometimes so I don t understand why you can t just dismiss it like everyone else does the relapse has been a huge blow to me personally you think everything is better and then bang, back to square one we won t feel any better until we find a cure (Carers from PRP trial) 9

10 Families as a resource Many people remain in contact with families after an episode of psychosis (20-40%) Emphasises community links Supplements reduced social contacts in psychosis Provision of an environment in which to recover 10

11 Impact of care in psychosis Caring associated with increasing levels of stress and distress. (up to 40% of carers have clinical levels of depression) Kuipers et al (2010) 44% have trauma symptoms Around ½ meet criteria of PTSD. Caregivers suffer grief equivalent to that found in bereavement. 52% reported patient-initiated violence. Kingston et al (in press) Barton & Jackson (2008) Patterson et al (2005) Onwumere et al (in press) 11

12 Russell Drysdale Sunday evening 1941 Lady Drysdale 12

13 Consistent finding in the literature that carers of those with psychosis have to cope with a heavy impact of care. (Fadden et al, 1987; MacCarthy et al, 1989; Kuipers, 1993; Scazufca & Kuipers, 1996; 1997; Kuipers & Raune, 2000; Magliano et al, 2000; Raune et al, 2004; Kuipers et al, 2005; Roick et al, 2006; Kuipers et al 2010). Carer s psychological distress higher than that of general public Ricard et al (2006) Dose relationship for effects of caring higher distress associated >10 hrs week in a caring role. Smith et al (2014) 13

14 Relationship issues (EE) Negative relationships between caregivers and clients (particularly criticism and overinvolved reactions, defined as high Expressed Emotion (EE)) associated with raised rate of relapse. 50% subsequent relapse 9 month in high EE families compared to 21% in low EE families. Bebbington & Kuipers (1994) Butzlaff & Hooley (1998) Family reactions key to patient outcomes even when they were on medication. Some evidence warmth on its own relates to better outcomes 14

15 Examples of expressed emotion (EE) in relationships I take it as it comes I think you can just show love and affection. (Husband re. wife; example of warmth) I d rather just leave him (in hospital) There comes a point when you ve just got to put your foot down. (Father re. son; hostility) It really irritates me how we can never sit through a family meal without Simon talking to those voices. (Mother re. son; critical comment) We don t like leaving him on his own ever. (Parent about son; emotional overinvolvement) He just goes on and on. Its irritating, he knows how to do it but he doesn t do it. (Staff re. key patient criticism) I feel comfortable with her, being very friendly and our relationship being very equal. (Staff re. key patient, warmth) High EE, critical, hostile or overinvolved relationships associated with poor outcome, can also be found in professional relationships (Kuipers & Moore 1995; Tatton & Tarrier 2000). Low EE relationships appear to be protective. 15

16 Impact of care interacts with relationship issues Impact of care, subjective burden of carer, also related to high EE. And to poor carer outcomes, such as:- stress, depression, low self esteem, and less effective avoidant coping, even at 1 st episodes. Raune et al (2004) And after recent relapse. Kuipers et al (2006) 16

17 Attributions Why events happen. Are they good or bad events? Weinman (1985) High criticism carers make more controllable and personal attributions feel patients are to blame for their negative behaviour/problems. Barrowclough & Hooley (2003) Low EE carers make more positive attributions for positive events feel patients are responsible for good events. Grice et al (2009) These appraisals relate to carers reactions to stress and burden of the caring role. 17

18 Illness perceptions Levanthal: model of illness perception in physical health problems, such as heart attacks. Accounts for most of the variance in outcome. John Weinman p.c. Equally relevant in psychosis. Lobban et al (2006) Watson et al (2006) Kuipers et al (2007) Carers who feel illness not under their control and will last a long time more stress and depression. Carers and clients who disagree (more likely in high EE relationships) carers have lower mood and lower self esteem. 18

19 Positive caregiver experience Many carers also report positive experiences feelings of satisfaction and improved self esteem. Carer warmth can protect against patient relapses can help recovery Veltman et al (2002) Chen & Greenberg (2004) Warmth may be better predictor of good outcome than criticism in some BME families Lopez et al (2004) Breitborde et al (2007) More postive caregiver experiences (FEP) related to greater metacognitive capacity ability to self reflect Jansen et al (2013) 19

20 Coping in caregivers Optimal coping is active and proactive seeking help and support. Avoidant coping hoping problems will go away is OK for short term issues but exacerbates problems for this group. Raune et al (2004) Kuipers et al (2006) Onwumere et al (2011) Cotton et al (2013) Important to encourage non-avoidant coping in family intervention (FI). 20

21 Social support Stigma and shame can lead to reduced social networks for carers looking after someone with psychosis. Important for carer to have a confidante and to feel supported. Magliano et al (2003) Having a confidante related to significantly more positive caregiving experiences at first episode (but not less burden) (N=124). Boydell et al (in press) 21

22 Patient perceptions Service users able to perceive negative relationships accurately patient perceived criticism relates to CFI rated criticism in carers. Onwumere et al (2009) Patient perceptions of criticism related to increased patient anxiety & depression, in early psychosis. Tomlinson et al (in press) 22

23 Coping with Paranoia A personal account 2004 The most likely thing to trigger (my paranoia) is a comment or question that could have more than one meaning, or at least that s how it seems at the time. It can be a comment that feels critical and that I dwell on afterwards. These comments are usually from people I know well, especially family. 23

24 Bryan Charnley s Broach Schizophrene Image courtesy of the Archives & Museum of the Bethlem Royal Hospital. 24

25 Model of social and cognitive processes in psychosis Garety et al (2001) Kuipers et al (2006a) Garety et al (2007) We have hypothesised that family relationships in psychosis relate to affect in patients; patients with negative relationships with carers will have higher anxiety, depression and lower self esteem. 25

26 High EE in carers related to low self esteem in patients and more positive symptoms. Barrowclough et al (2003) Negative relationships (high EE) related to more anxiety and depression in patients. Kuipers et al (2006) Some evidence that those with carers have better belief flexibility. (Jolley et al 2013) 26

27 Criticism can be upsetting in depression Formerly depressed women compared to healthy controls (N=11) showed increased negative mood, increased activity in amygdala and reduced DLPFC activity on being played negative comments spoken by their mothers. Hooley et al (2009) 27

28 Effects of arguments 42 normal married couples. Hostile interactions reduced wound healing. Pathways for negative relationships to affect physical health. Kiecolt-Glaser et al (2005) 28

29 Proxy criticism more negative affect; Anxiety & distress more positive symptoms (N=38) New proof of principle treatment development; reformulating criticism for those with psychosis can reduce impact of criticism directly. (Finnegan, Green, Freeman, Garety & Kuipers, in press) 29

30 This kind of research has informed family interventions in Psychosis. Published Manuals available. Falloon et al (1984) Anderson et al (1986) Barrowclough & Tarrier (1992) Kuipers, Leff & Lam (1992, 2002) Addington & Burnett (2004) Based on helping families understand, improve communication, cognitively reappraise problems, negotiate problem solving, emotionally process loss, grief and distress. Optimal medication. 30

31 NICE Guidelines for Schizophrenia Updated (2009;2014) We have evidence that FI for psychosis works. FI for psychosis evidence: 38 RCTs met quality checks (N=3134). 5 were follow ups. 32 RCTs (19 new trials) (N=2429) included in metaanalysis. FI reduces relapse consistently. E. Kuipers, KCL, IOP 17/10/14 31

32 Cochrane Review - Pharoah et al (2010) 53 RCTs FI may reduce relapse and re-admission (N=2981) improve social impairment and reduce EE. 32

33 PORT (2010) Kreyenbuhl, J. et al, Schizophrenia Bulletin PORT (updated 2010) recommends FI & CBT for persistent symptoms. 33

34 NICE updated Guidelines for Psychosis & Schizophrenia (2014) (Kuipers et al BMJ 2014) FI Recommendations from 2009 update: Offer Family Intervention to families of people with schizophrenia who are living with or in close contact with the service user, also can be started in acute phase. Should be 3-12 months, more than 10 sessions. 34

35 Support for Carers (2014 updated guidelines) Offer assessment of needs Advise re right for Social service formal carer assessment Give carers written and verbal information Negotiate between carers and service users about confidentiality and sharing appropriate risk information. Review regularly. E. Kuipers, KCL, IOP 17/10/14

36 Support for carers (continued) Include carers in decision making if service user agrees Offer carers a focussed education and support programme, which may be part of Family Intervention, is available when needed, and has a positive message about recovery. E. Kuipers, KCL, IOP 17/10/14

37 Families should be seen as a positive and irreplaceable resource. Kuipers & Bebbington (1985 p.469) Carers have needs of their own. NSF Standard Carers assessment instigated. Relatives have needs for care on their own behalf. Kuipers (1992, 2001 p. 342) 37

38 Family members are as much victims of severe mental disorders as patients themselves. McFarlane & Cook (2007 p. 196) There is a long history of research into the attribution of carers of people with psychosis, but few interventions target their distress or their difficulties. Kuipers et al (2010 p. 259) 38

39 Families who are carers save the public purse 1.24 billion per year but are not receiving support & are not treated as partners. ( The Abandoned Illness, Schizophrenia Commission 2012) 39

40 Carer outcomes can improve Lobban et al (2013) reviewed 60 studiespositive for some carer outcomes Lobban et al (2013 BJP) (REACT)-supported self management for carers of recent onset psychosis improved carer distress, perceived support and ability to cope. Udechuku et al (in revision) psycho-ed and support helpful for carers. 40

41 41

42 What does this mean for service provision? Improving carer outcomes requires a theoretical and practical understanding of the mechanisms that develop and maintain carer distress, together with those that optimise the positive aspects of the role.. they (carers) very much merit the attention of clinicians in their own right. Kuipers et al (2010) p

43 The future for services: (1) Early Intervention for psychosis services in UK (& elsewhere), offer a model, and are effective; Bird et al (2010). We should be offering high quality, comprehensive needs led services at all stages of presentation (of psychosis) early, medium or later, including optimism and hope of recovery. Kuipers (2008) p. 159) (NICE guidelines 2014) Need to extend EI services (not cutting or diluting them). Schizophrenia Commission

44 The future for services: (2) Family work in psychosis, which improves relationships through problem-solving, reduces service user relapse but is particularly difficult to implement. Training initiatives (eg. Meriden) suggest a model, but limited data on improved family outcomes (Fadden et al 2006). I have argued that psychosis carers need their own service. Kuipers, E. (2010) Service systems must aim at supporting recovery in the whole family. Jansen (2014)p

45 Stepped care or triage might be particularly helpful to ensure more FIp implementation, with a focus on reducing distress. initial engagement No Yes still distressed? information No Yes still distressed? 4/5 crisis meetings No Yes still distressed? hi intensity FI (Cohen et al 2008) 45

46 - Up to 40% of carers are clinically depressed (Kuipers et al 2010) could use this as a marker for NICE compliant FIp. - Interventions focussed on reducing carer distress, offering information, and/or crisis meetings could be offered routinely to all carers (now NICE recommended for carers, 2014). Pilot of carer focused intervention: mentalhealthcare.org.uk + crisis planning, help with insomnia and distress (Roddy et al in press). 46

47 The Maudsley Charity supported this website from 2011 to The Wellcome Trust financially supported the original redevelopment of the site. Reliable and up-to-date information about psychosis for family members and friends. Site currently being updated until 2016 using my NIHR Senior Investigator award.

48 With thanks to my colleagues in the Psychosis Research Partnership funded by the Wellcome Trust Philippa Garety Paul Bebbington David Fowler Graham Dunn Helen Waller Daniel Freeman Suzanne Jolley Juliana Onwumere Richard Emsley Amy Hardy 48