Schizophrenia Ireland Biennial Conference THE NEEDS OF SIBLINGS IN FIRST EPISODE PSYCHOSIS

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Schizophrenia Ireland Biennial ConferenceTHE
NEEDS OF SIBLINGS IN FIRST EPISODE PSYCHOSIS

• Dr Jo SmithConsultant Clinical
  psychologistWorcestershire Early Intervention
  LeadNIMHE National Early Intervention Programme
  Lead
• Lucie Taylor
• Assistant Psychologist
• Sibling

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Lucies Story
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The nature of sibling relationships

• Sibling relationships outlast marriages,
  survive the death of parents, resurface after
  quarrels that would sink any friendship.  They
  flourish in a thousand incarnations of closeness
  and distance, warmth, loyalty and distrust. 
  Erica E. Goode, "The Secret World of Siblings,"
  U.S. News World Report, 10 January 1994

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Sibling Relationships

• Long duration
• Longer than relationships with parents, partners,
  peers or children
• Persisting with varying degrees of intimacy and
  investment throughout the life cycle
• Adult sibling relationships tend to be renewed as
  children mature and leave home
• Important in maintaining morale in old age
• And providing emotional support and practical
  help
• Sibling bond intensity influenced by degree of
  access being raised together, close in age,
  spending a lot of time together over a period of
  years and shared friendships tend to have more
  intense bonds
• In childhood and adolescence, siblings provide
  companionship, emotional and practical support
  for one another

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Sibling research

• Little focus on siblings despite importance in
  life cycle and potential vulnerability of well
  siblings
• Siblings report pervasive impact on lives and
  similar subjective burden to parents and children
  of SMI patients
• Few published studies on sibling experiences with
  recent onset FEP
• Studies looking at impact of onset and diagnosis
  have largely involved retrospective accounts
• Studies with siblings coping with chronic
  psychosis have identified guilt, fear about
  personal vulnerability, shame, anger, grief and
  loss, need for support, disruptions of normal
  development and feelings of parental neglect
• Studies of sibling grief have shown similar
  levels of initial and current grief as parents
  (Miller et al 1990 OShea, Fadden and
  Smith(2003 Fisher and Steele 2004) but siblings
  more likely to resolve their reactions to
  diagnosis compared to mothers (Fisher and Steele
  2004)
• Family intervention has focused mainly on key
  relatives and specific interventions with
  siblings have been largely neglected

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Research with SiblingsCoping with First Episode
Psychosis(Fisher and Steele, 2004)

• Alterations in their relationship with the
  affected sibling and other relatives
• Adverse impact on emotional well being
• Neglect of personal needs
• Difficulties in maintaining friendships
• Decreased academic performance
• Increased responsibility at home
• Ignored by psychiatric services
• Low awareness of genetic vulnerability
• High levels of involvement in caring for the
  affected sibling
• Finding is discrepant from published accounts of
  individuals with siblings with a chronic
  psychotic illness

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Rethink Sibling Survey (Canning 2006)

• Siblings rated access to advice and support as
  inadequate
• Siblings were seeking accessible information
  including
• sibling oriented information packs (84)
• dedicated sibling website space (76)
• publications on how best to support as siblings
  (77)
• Siblings wanted to be actively involved through
• newsletters (65)
• web based chat rooms and discussion forums (63)
• have the opportunity for direct contact with
  other siblings through a local support group or
  web based sibling network (53).

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What is the likelihood of siblings coping with
FEP?

• 60-70 of first episode individuals live with
  families
• Mean age of onset is 21 years, mean age for
  leaving family home is 23 years
• Adolescent age of onset from 14 means many
  siblings are likely to still be living at home

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Worcs. EI Service Siblings audit (based on case
load of n66)

• 59 (89) had siblings
• Total siblings 113
• Under 10 years 5 (4.4)
• 10-14 years 11 (9.7)
• 15-18 years 20 (17.7)
• 19 years 77 (68)

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Common Sibling Experiences

• Siblings struggle with the changes they observe
  in their brother or sister or their relationship
• Siblings lack knowledge and experience and can
  find it very difficult, distressing and
  frightening at times when someone in the family
  is psychotic
• Siblings may feel their parents are preoccupied
  and they do not get as much attention as the
  person who is psychotic
• Siblings feel for the sibling who is unwell
• Siblings may have anxieties about their own
  mental health and risk for psychosis
• Siblings rarely get information or support from
  services

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Common Feelings Expressed by siblings (CMHA, 2005)

• Uncertainty, lack of understanding and
  helplessness
• Family tensions and disruptions to family life
• A range of emotions including fear, anxiety,
  guilt, anger, stigma, embarrassment, envy,
  resentment, loss and sadness
• Sense of burden and responsibility for their
  affected sibling

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Therapeutic Interventions with Siblings

• Few models within the research literature (most
• developed in physical health and learning
  disability)
• Support groups
• Information leaflets
• Activity camps/short breaks
• Personal stories
• Therapeutic board games
• Peer sibling support
• Family intervention

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Issues when working with siblings (Smith et al
2008)

• Recognising the valuable role of siblings and the
  resources they have to offer
• Getting the balance right in enlisting sibling
  support and encouraging their independence
• Taking a whole family perspective
• Addressing peer support needs of siblings
• Flexibility in timing of sessions which include
  siblings
• Raising awareness about siblings own potential
  genetic vulnerability
• Being sensitive to confidentiality issues

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Service Development and Training Implications
(Smith et al 2008)

• Working with siblings who may be children
• Collecting routine information about siblings
• Assessing the needs of siblings and including
  siblings in family assessments
• Ensuring availability of specific resources for
  siblings
• Service capacity constraints to provide targeted
  support to siblings

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Engagement of siblings (Smith et al 2008)

• Normalising without minimising difficulties
• Emphasising that psychosis is nobody's fault 
• Foster their partnership and support in the
  recovery process
• Showing genuine concern for what the family has
  had to deal with
• Involving all siblings in family discussion
• Tailoring involvement to suit the age of the
  siblings
• Getting siblings to identify positive outcomes
  for themselves and the family as a whole
• Being flexible (within reasonable limits!) in
  timing of and venue for family sessions
• Acknowledging and positively reinforcing sibling
  attendance and involvement

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Service response to the needs of siblings (Smith
et al 2008)

• Helping siblings learn about psychosis including
  prevalence, common symptoms to help make sense of
  experiences, recovery processes, what they can
  expect to happen, personal genetic
  risk/vulnerability
• Encouraging siblings to talk about thoughts,
  feelings and reactions including feelings of
  guilt, anger and loss and discussing difficulties
  with family and close friends
• Encouraging siblings to carry on with their own
  life
• Mobilising support for siblings
• Helping siblings set appropriate limits on and
  having realistic expectations of what they can
  do.
• Helping them to think about how to handle
  difficult situations or behaviours
• Helping them to learn how to relate to their
  affected sibling when they may not want to do the
  fun things they used to, when they do not know if
  they can fully trust them anymore, when their
  sibling is still using illicit drugs.
• Helping them to identify what they can do to help

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Sibling Resources
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Sibling Websites

• www.sibs.org.uk
• Generic UK website for siblings producing
  information sheets, regular newsletter, sibling
  support, training workshops for siblings
• www.rethink.org/siblings
• New on-line UK national network for siblings
  to share experiences and get support set up by
  Rethink mental health charity

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Tips for professionals working with siblings
(Smith, Fadden and Taylor 2008)

• Giving siblings space to talk about being a
  sibling separately from family
• Recognise the potential risks and costs as well
  as the benefits of talking about concerns and
  problems at home with peers
• When providing information, make sure information
  is age specific and age sensitive, keep jargon to
  a minimum, be honest and make sure you give
  siblings something to take away and read
• Not making assumptions about siblings, even those
  from within same family, may react differently or
  may be in a different place at any one time, may
  have different needs these needs will change
  over time and at different ages do not make any
  assumptions about closeness of sibling
  relationships and recognise that some siblings
  may choose to detach
• Valuing the unique relationship that siblings
  have where siblings will know many things that
  parents will never know recognising the pull
  of a sibling blood relationship and not
  over-using siblings avoiding placing siblings in
  a spying role
• Supporting parents in addressing sibling needs

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The sibling No mans Land

• The UNAFAM study (Davtian, 2003) highlighted a
  no mans land for siblings where they face a
  number of paradoxes
• They have too little information yet they know
  too much
• They are often involved but without a defined
  role or knowing what is expected of them
• They experience difficulties but asking for help
  may risk making themselves more vulnerable.
• They often find themselves in the dilemma of
  choosing compassion or abandonment.

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Reflection on Working with Siblings

• Does your service currently offer specific
  support to siblings?
• Do you routinely include siblings in your family
  assessment processes?
• Are siblings included in regular care reviews to
  check that their needs are being met at different
  stages in the pathway?
• What are you doing to engage siblings in family
  intervention and to encourage their attendance
  and participation in family meetings?
• Do you offer any specific support to siblings
  including information materials for siblings,
  sibling websites, opportunities to meet with
  other siblings
• Does the delivery of support to siblings raise
  issues for your service in terms of appropriate
  skills, resources and support?

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References

• Maynard C. and Smith J. (2003) Information about
  psychosis for brothers and sisters , South
  Worcestershire Early intervention Service, UK
• Mulder, S. and Lines,E. (2005) A siblings guide
  to psychosis information, ideas and resources.
  Canadian Mental Health Association, Canada
• Smith,J. Fadden, G. and OShea, M.(2008, In
  Press) Interventions with siblings. In F. Lobban
  and C. Barrowclough (Eds.) A Casebook of Family
  Interventions for Psychosis.Chichester Wiley and
  Sons
• Smith,J. Fadden,G. and Taylor,L.(2008, In Press)
  The Needs of siblings in First Episode Psychosis
  In P.French, M.Reed, J.Smith, M.Rayne and
  D.Shiers (Eds) Early Intervention in Psychosis
  Promoting Recovery. Oxford Blackwell Publishing
  Ltd.

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Further contact and information

• Jo Smith
• Worcestershire Early Intervention Lead,
• Worcestershire Early intervention Service,
• 5, Merrimans Hill
• Worcester,
• Worcestershire.
• WR3 8AA
• Tel [phone]
• E-mail joda_at_lineone.net