Original Article
Informal caregivers in early psychosis: evaluation
of need for psychosocial intervention and
unresolved grief
John Mulligan,
1
William Sellwood,
2
Graeme S. Reid,
3
Suzanne Riddell
4
and Natasha Andy
5
1
Greater Manchester West NHS Trust,
Manchester,
2
Institute of Psychology,
Health and Society, University of
Liverpool, Liverpool,
3
Lancashire Care NHS
Foundation Trust/University of Lancaster,
4
Cheshire and Wirral Partnership NHS
Foundation Trust, Chester, and
5
Calderstones Partnership NHS
Foundation Trust, Lancashire, UK
Corresponding author: Dr John Mulligan,
Psychosis Research Unit, Greater
Manchester West NHS Trust, Harrop
House, Bury New Road, Prestwich,
Manchester M25 3BL, UK. Email:
john.mulligan@gmw.nhs.uk
Received 4 August 2011; accepted
3 March 2012
Abstract
Aim: Relatives of service users
involved with Early Intervention in
Psychosis services often experience
substantial distress and need associ-
ated with their role as caregivers. This
study adapted versions of the Rela-
tives Cardinal Needs Schedule and
the Texas Inventory of Grief and
tested their utility for use among rela-
tives of service users experiencing a
first episode of psychosis.
Methods: Staff, service users and rela-
tives were consulted and a pilot took
place which facilitated the creation of
the Relatives’ Urgent Needs Schedule
– Early Intervention version (RUNS-
EI) and the Texas Inventory of Grief –
Early Intervention version (TIG-EI).
Thirty service user-caregiver dyads
were recruited for the evaluation of
reliability and validity.
Results: The level of ‘urgent need’
identified by the RUNS-EI
demonstrated good concurrent valid-
ity with measures of service user
social and global functioning as well
as measures assessing relatives’ dis-
tress, expressed emotion and grief.
The measure demonstrated accept-
able interrater and test–retest reliabil-
ity. The profile of need is reported.
The TIG-EI demonstrated ‘excellent’
internal consistency. It also demon-
strated good concurrent validity with
increased TIG-EI scores correlated
with reduced service user social
and global functioning as well as
increased scores on measures assess-
ing relatives’ distress, expressed
emotion and caregiving needs.
Conclusions: Results appear to
support these assessments’ utility as
measures of need for psychosocial
intervention and grief among rela-
tives supporting service users experi-
encing a first episode of psychosis.
Key words: early intervention in psychosis, informal caregiver, need,
relative, unresolved grief.
INTRODUCTION
Caregivers play a crucial role within mental health
systems, but their contribution is often underval-
ued.
1
Unpaid caregivers save the Australian, British
and American health and social care systems
approximately $30.5,
2
£119
3
and $375
4
billion per
annum, respectively. Proximity to and familiarity
with service users ensure relatives are often best
placed to facilitate early assistance and support sus-
tained engagement, greater accommodation stabil-
ity, improved social role functioning and use of
medication.
5–10
Such proximity is not without cost
as 29–60% of relatives have been demonstrated to
suffer from significant psychological distress.
11
The consequences of excessive burden and stress
can impact on the psychological well-being of both
service users and relatives.
12
The link between stress
and deterioration in mental health has been exam-
ined extensively within the context of the family
atmosphere, with particular focus on the concept
of ‘Expressed Emotion’ (EE).
13
Incorporating critical
comments (CCs), emotional over-involvement
(EOI) and hostility, EE is commonly used as a
Early Intervention in Psychiatry 2012; ••: ••–•• doi:10.1111/j.1751-7893.2012.00369.x
First Impact Factor released in June 2010
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© 2012 Blackwell Publishing Asia Pty Ltd
1