The development of family interventions for psychosis: taking stock of progress

1. The development of family interventions for psychosis: taking stock of progress Christine Barrowclough University of Manchester Pennine Care NHS trust

2. “Generally, there is not much real empathy for the range and complexity of families’ feelings and difficulties. Professionals are reluctant to enter the painful & bewildering world that families live in.” Agnes Hatfield 1987

4. Key issues ………………………. • huge perceived negative consequences on service user’s and relative’s life • difficulties making sense of the psychotic experiences • importance of making sense linked to attempts to ameliorate • situation • Strength of the emotional response

5. Aims of presentation • Take stock of family intervention research • Highlight shortcomings especially in terms of recognising and addressing relatives’ distress • Identify research that might help to understand “the range and complexity of families’ feelings and difficulties” • Outline implications for family interventions

6. Family interventions to reduce relapse 1980’s > • Family intervention – first well researched psychosocial intervention for psychosis • Peak of RCTs early -mid 90’s > establishment of evidence base

7. Common ingredients of FI (from Mari & Streiner, 1994) • build up an alliance with relatives • reduce adverse family atmosphere • enhance problem solving • decrease anger & guilt • develop reasonable expectations • safeguard relatives’ own well being • change relatives beliefs & behaviour

8. Findings from meta-analyses of FI(12-25 studies) • FI effective in reducing relapse & hospitalisation • Some studies more effective than others. • Decline in effectiveness over time - • 13-20% relapse reduction vs 40-50% in early studies • Little impact on family members well being

9. Studies of reasonable sample size (n= 50+), randomised control group, with focus on benefits to family members themselves & include standardised measure of burden/well being (distress)

10. Conclusions from RCTs • Rush of premature RCTs stifled development • We know very little about helping people to adjust to the huge emotional impact • Understanding the emotional reactions of relatives important on two counts: • Relatives’ well being matters! • Negative emotional responses likely to get in the way of effective coping

11. Distress in relatives • Early in psychosis/at acute admissions distress is particularly high (approx 60%)* – these levels later fall although a significant number suffer significant ongoing distress** • Better understanding of mechanisms involved in family responses ie understanding about the why? and how? of variability in relatives’ response • to psychosis • **Barrowclough & Parle 1997 *Addington et al 2005

12. Starting point for the study of family outcomes : PSYCHOSIS APPRAISAL Evidence from many studies suggests that there’s considerable independence between symptom severity/ symptom profile and distress/EE, suggesting that appraisals of the illness moderate the relationship Psychosis presentation Affect & Cognition Behaviour Response to illness Illness Appraisal

13. Differences in family members’ appraisals There are differences in the way relatives appraise the illness – ie the degree to which relatives are concerned/feel able to cope with the symptoms/changes • These differences (even accounting for severity of symptoms & impairment of functioning) predict sustained distress ** **Barrowclough & Parle 1997

14. Differences in family members’ attributions • Major findings from 13 studies of EE & carers’ attributions • Relatives offer many and diverse causes • Where relatives consistently attribute more control to patients and hold • the patient more responsible tend to get more critical approach to ill relative • Some evidence of a where attribute less patient responsibility/more illness attributions see relatives being more protective • Self blame associated with carer distress • Barrowclough & Hooley 2003

15. Differences in family members’ models of illness • People have coherent models about their physical illnesses which guide their attempts to improve their health outcomes (Leventhal’s SRM) • Models are functional - faced with illness problems/decisions people use a map or model of illness to decide what to do

16. Key dimensions of Beliefs: What do you understand by the term schizophrenia? What does schizophrenia mean to you? • Identity • Cause • Timeline – acute / chronic • Timeline – cyclical • Consequences (from relatives’& service user • Personal control / cure perspectives) • Treatment control / cure • Coherence Lobban et al 2005

17. Belief Models associated with poorer outcomes: Service user criticism personal distress High negative consequences for self I am to blame low sense of personal control chronic/unpredictable course low sense of treatment control Service user could do more the less sense I make of the illness

18. Examples of distressing beliefs • I am responsible for getting him better (but nothing I do is making a difference) (relative’s personal control) • I see him going downhill but he makes little effort himself • He is completely self focussed – he shows no interest in anyone (service user control) • He’s never going to get better - I am losing him to the illness (timeline/consequences) • Everything has changed for the worse, my life and his are devastated (consequences)

19. Implications of belief models for FI • FI unlikely to be effective in reducing distress unless it changes underlying beliefs associated with affects & behaviours - and for this you may need more cognitively based interventions

20. How do we help relatives to develop less distressing beliefs? Making sense of psychosis in a way that reduces distress • Acknowledging and normalising stress & difficulties making sense of psychosis • Accessing & exploring beliefs • Demonstrating how beliefs linked to coping strategies • Evaluating distressing beliefs - Are they 100% accurate? Are they helpful? • Experimenting with new ways of thinking and coping where appropriate

21. Working with individual families • Mapping models – seeking to understand the family’s understanding of the illness and make sense of the emotions • Comparing models within families • Collaborating on how the family might try new ways of thinking linked to new strategies of coping

22. Emotional representation Patient/ psychosis disturbed behaviour; Hospitalisations;, alcohol & heavy cannabis use Treatment & cultural context pessimism & blame Impact on relative Failure/ decreased self efficacy/ Coping cajole/threaten/ argue/ seek & destroy Increase contact/ give up work & activities to monitor & distract Identity – drug induced problems Consequences - catastrophic I’m going to lose him My life and his are ruined Timeline– potentially acute Treatment control – minimal Personal control for motherIf I stop drugs he will be well /I need to make him stop Personal control son – blame If he stopped the drugs he’d get better Impact on patient maintenance substance use

23. Group work –Timeline example • Drawing and comparing time lines of recovery • Sharing distressing beliefs – eg “He’ll never be the same again- I’ve lost him” • What does recovery mean for the individual ? • What are realistic time frames? • How do you recognise recovery? • Hearing positive recovery stories • Does change always mean less? For whom? • Re-evaluating beliefs – How helpful? How accurate? • New ways of thinking linked to new ways of coping

24. “Professionals don’t have all the emotions that go with being the mother of my son (with psychosis)” Anon, Feb 2007 • Can understanding relatives’ perspectives & beliefs • go someway to understanding the nature of their distress ? • - • Can an empathic but objective perspective using the methods suggested help /accelerate relatives’ adaptation to the experience of psychosis ?

25. Acknowledgements • The Recovery after Psychosis (RAP) research team • Fiona Lobban - University of Manchester & Lancashire Care NHS trust • Dave Glentworth • Ian Lowens • Bolton Salford & Trafford NHS trust • To all relatives who are participating in the research