Family Intervention in Psychosis: Why Carers matter

1
Family Intervention in Psychosis Why Carers
matter

• Professor Elizabeth Kuipers
• Kings College London
• Institute of Psychiatry
• Department of Psychology
• 20th March 2007
• Stratford-Upon-Avon, UK

2
Talk about

• Background the importance of relationships for
  outcomes.
• Cross cultural issues.
• Family intervention research.
• Recent research funding.
• Clinical implications.

3

• The impact of care in psychosis in first
• episodes
• What upsets me most is that Ill 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)

4
And in subsequent episodes

• we all get paranoid sometimes so I dont
  understand why you cant 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 wont feel any better until we find a cure
• (Carers from PRP trial)

5
Families as a resource

• Many people remain in contact with families after
  an episode of schizophrenia (20-40)
• Emphasises community links
• Supplements reduced social contacts in psychosis
• Provision of an environment in which to recover

6

• The impact of care
• Consistent finding in the literature that carers
• 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).

7
Care giving has a clear impact on family members

• Increased worry and strain.
• Emotional upset.
• Reduces social networks.
• Isolation, stigma shame.
• Financial problems.
• Worry about the future.
• Loss.
• Anger.
• Guilt.
• Denial.
• Some symptoms particularly difficult for carers
  to cope with disruptive behaviour, social
  withdrawal, poor understanding of difference
  between illness behaviour and personality.

8

• The quality of relationship between client and
  carer
• Initial reactions to demands of caring
• - bewilderment, anxiety, denial
• - unrealistic (uninformed) expectations about
  recovery and
• role performance
• Can lead to
• - frustration, irritation, criticism
• 2. Another response
• - to try to look after client take over
  social roles
• - compensate for impairment (only helpful in
  acute phases)
• This can lead to
• - loss of adult independence in clients
• - over burden exhaustion in carers
• - emotional overinvolvement
• 3. Or carer can understand that there are
  difficulties and try to encourage the individual
  to deal with them.

9

• Measuring the quality of a relationship
• Both criticism and overinvolvement are key
  components
• of Expressed Emotion (EE)
• Robust predictor of outcome in schizophrenia
• Kavanagh (1992) reviewed 26 studies
• Bebbington Kuipers (1994) used data from 25
  studies
• worldwide and confirmed
• - those returning to live with high EE families
  more
• likely to relapse in next 9 months - 50
  relapse rate
• - compared to those going back to low EE
• families who had a 21 relapse rate
• Also confirmed by Butzlaff Hooley (1998)
• Some evidence that warmth on its own, relates to
  better
• outcomes.

10

• 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)
• Id rather just leave him (in hospital) There
  comes a point when youve 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 dont 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 doesnt 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).

11

• EE and impact of care burden, are linked
• (Smith et al 1993, Scazufca et al 1996 Raune
• et al 2004)
• EE is an assessment of the quality of the
  relationship, based
• on appraisal of problems.
• Both EE and burden more dependent on appraisal of
  clients
• problems than on actual deficits, and relate to
  poor outcomes.
• Low EE carers still feel burden but perceive as
  less
• problematic.
• Families at first episode have similar issues
  (Raune et al
• 2004).
• High EE carers more likely to attribute blame and
  responsibility
• to patients and be more distressed (Barrowclough
  Hooley
• 2003).

12
Cross cultural issues in EE research some
evidence of cultural specificity

• Rosenfarb, Bellack Aziz (2006)
• Journal of Abnormal Psychology, Vol 115, 1,
  112-120
• - Compared associations between family
  interactions and illness course over 2yrs in
  African American (N 40) Whites (N
  31) patient-carer dyads
• - African American dyads high levels of critical
  and intrusive behaviour in carers were associated
  with better outcome in patients
• Kopelowicz et al (2002) Lopez et al (2004)
• - high EE predicted relapse only if caucasian
• - Negative behaviour must be see in context may
  be perceived as a sign of caring and concern in
  some families

13

• This evidence base has informed family
• interventions in psychosis. Several manuals now
• 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.

14
Reviewing family intervention studies in
Schizophrenia

• Family intervention reduces relapse (from 64 to
  24) and improves employment (social functioning)
  
• (Bustillo et al 2001)
• Pitschel-Walz et al (2001) found 20 decrease in
  relapse rates and improvement in long term
  adherence to medication with FI.
• Individual family intervention appears to be more
  effective than group intervention
• (Pilling et al, 2002)

15

• Cochrane review, Pharoah et al (2001)
• (13 RCTs) confirms that family
• intervention may reduce relapse.
• Also found by Dixon et al (2000)
• NICE Guidelines (2003)
• 18 RCTs included (N 1458)
• FI reduces relapse and can improve carer
• burden.

16
Pfammatter et al (2006)Schizophrenia Bulletin,
32, S64-S80.

• Consistent finding that schizophrenia patients
  with
• relatives taking part in Family Intervention (FI)
  suffer from
• significantly fewer relapses and hospitalisation
  during
• follow-up, (31 RCTs).
• Pfammatter et al found considerable shift from
  high to low
• EE, a substantial improvement in the social
  adjustment of
• the patients, a decline of inpatient treatment
  and an overall
• reduction in psychopathology during the
  follow-up (p. 571).

17
Grawe, Falloon, Widen Skogvoll (2006)Acta
Psychiatrica Scandinavica, 114/5, 328-336.

• Early intervention trial (within 2 years
  diagnosis of
• schizophrenia) (N50).
• RCT of Standard Treatment (ST) (medication case
  management)
• (N20) versus Integrated Treatment (IT) (FI ST)
  (N30)
• Over 2 years both groups improved some evidence
  that IT
• reduced negative symptoms and stabilised positive
  symptoms.
• More IT patients (53) had excellent 2 yr outcome
  v. 25 in
• ST. More of the IT group were on clozapine.
• Half of the early cases had psychotic
  exacerbations and/or
• persistent symptoms (25 had these at 2 years)
  for this
• group 2 years of treatment not sufficient
  suggests continuing
• treatment necessary.
• Quality of the treatment provided in the long
  term very important.

18

• Summary
• FI for psychosis is broadly efficacious.
• Can improve relapse rates, and outcomes for
• patients.
• Some evidence that carers can also feel better.
• Longer treatments recommended by NICE
• (2003).

19

• However, although we know FI works, we do
• not entirely understand how.
• eg. How do stressful (critical or over involved)
• family relationships relate to increased symptoms
  of
• psychosis such as delusions and hallucinations
• (relapse) in patients, and depression in carers?
• Can we improve outcomes for carers and patients
  by
• changing these mechanisms?

20
Model of social and cognitive processes in
psychosisGarety et al (2001)Kuipers et al
(2006)Garety et al (in press)

• We have hypothesised that family relationships
• relate to affect in patients patients with
  negative
• relationships with carers will have higher
• anxiety, depression and lower self esteem.

21
Psychological Prevention of Relapse in Psychosis
Theoretical studies

• Grantholders Philippa Garety, Elizabeth Kuipers,
  David Fowler, Paul Bebbington, Graham Dunn.
• Research Co-ordinator Daniel Freeman.
• Research Therapists Suzanne Jolley, Juliana
  Onwumere, Rebecca Rollinson, Ben Smith, Craig
  Steel.
• Research Workers Hannah Bashforth, Susannah
  Colbert, Ellen Craig, Amber Elliott, Jane Evans,
  Dite Felekki, Laura Fialko, Sarah Fish, Miriam
  Fornells-Ambrojo, Alison Gracie, Catherine Green,
  Amy Hardy, Louise Isham, Rosie Moore, Marta
  Prytys, Kathryn Ruffell, Philip Watson.
• Advisory Group Jan Scott, Max Birchwood, Tony
  Johnson, John Geddes, Mike Took.
• FUNDED BY THE WELLCOME TRUST

22
Some evidence supporting this from Barrowclough
et al (2003)

• Association between high criticism in carer,
• low self esteem (negative self evaluation), and
• more symptoms in patients.

23
Also some anecdotal evidence from a participant
in our current trial.Coping with ParanoiaA
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 thats 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.

24
Kuipers et al 2006British Journal of Psychiatry,
188, 173-179

• N 86 dyads.
• Negative relationships seem to have an impact via
  
• affect significantly more depression and anxiety
  in
• patients in high EE dyads.
• Critical comments predicted anxiety in patients.
• Carers themselves could have low self esteem.
  This
• was related to feeling burdened, stressed, and
• depressed, having poor coping (avoidant) and to
• patient depression.
• Model partly supported.

25
Kiecolt-Glaser, J.K. et al (2005)Archives of
General Psychiatry, 62, 1377-84

• 42 normal married couples.
• Hostile interactions reduced wound healing.
• Pathways for negative relationships to affect
• physical health.

26
Discrepant illness perceptionsKuipers et al (in
press)

• Carers and patients both had negative illness
• perceptions, but carers tended to have more
• concerns.
• When carers and patients disagreed about the
• consequences of psychosis, patients were
• depressed when they disagreed about control,
• carers were more stressed (N 82 dyads)
• ie. discrepant views impacted on mood.

27
Prevention of Relapse in Psychosis RCTGarety,
Fowler, Freeman, Bebbington, Dunn
Kuipers(paper in preparation)

• For those with carers, (N132) novel finding that
  
• both CBT and FI had positive effects on overall
• symptoms, depression and social functioning, at
• 2 years, compared to TAU.
• Psychological treatment may be enhanced by
• ongoing social support.

28
Other evidence for positive family interactions

• Tienari et al (2004)
• Children of those with schizophrenia adopted
  into healthy families were protected from their
  genetic risk of an episode.
• Norman et al (2005)
• Good social support, including family related to
  lower levels of positive symptoms.
• Family support may reduce admission in first 3
  years of
• psychosis.
• - OBrien, M.P. et al (2006)
• Positive family involvements (EE ratings)
  predicted
• decreased symptoms and enhanced social
  functioning
• 3 months later in a prodromal group.

29
Clinical implications for FI in Psychosis

• Suggests FI needs to concentrate on reducing
  family
• disagreements, improving understanding of
  problems and
• thereby reducing patient anxiety and depression.
• Also needs to reduce disagreements to improve
  carer self
• esteem and depression in carer to improve coping.
• These seem to be crucial ingredients for
  successful family
• interventions.
• Seems important to replace stress, anxiety and
  criticism by
• calmer, more tolerant, and more effective
  reappraisal and
• problem solving, while boosting carer coping and
  self esteem.
• Some families might need specific support for
  active rather
• than avoidance coping styles.
• New evidence that family support can itself
  improve outcomes,
• compared to isolation.

30
Family feedback after FI

• useful to learn about my daughters experiences
  (Mother of patient, feedback on FI).
• It was helpful to have the opportunity to
  discuss openly the illness and the effects on the
  family.
• Why is FI not more widely available?

31
Department of Psychology Research Day Applying
Science to the Real World

• 14th September 2007

www.iop.kcl.ac.uk/prd