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Report
Clinical Correlates of Family Assistance and Carer Perception of Quality
of Life in First-Episode Psychosis
Ms. Laoise Renwick1’2, Ms. Roisin Doyle1, Dr. John Lyne1, Mr. Kevin Madigan1, Mr. Niall Turner1,
1
1,3
1,3,†
Mr. Anthony Kinsella , Dr. Mary Clarke , Prof. Eadbhard O’Callaghan
,
1
DETECT Early Psychosis Service 2 School of Nursing Midwifery and Health Systems, UCD 3 School of Medicine, UCD † deceased
Introduction
Since the decommissioning of large psychiatric institutions and the move
towards community care, a large degree of the responsibility for caring for
people with mental illnesses now lies with family members. Although
family members are optimistic about the prospect of remission and
recovery in the early stages, almost 40% find themselves providing daily
support1 and the amount of care-giving required increases dramatically in
the weeks prior to admission2.
Within the EI framework there has been a sustained interest in providing
family interventions to minimise the risk of psychosocial stress that may
influence illness trajectories in the early phase. However, the available
literature has focused on how family behaviors influence the course of the
illness in terms of re-hospitalisation and relapse rates. Fewer studies have
examined the impact of illness on the care givers experience and less is
known about carer’s evaluations of the quality of life (QOL) of the people
they support.
Aim
This study was an exploratory study of caregiver experiences of the
quantity and type of assistance required in the period prior to presentation
with a first episode of psychosis. The study assessed whether specific
symptoms resulted in greater need for family assistance and support and
whether this in turn was linked with care-givers assessment of participants
QOL.
Methods
We assessed the care-giving experiences of 43 carers of participants who
commenced in the study following a first episode of psychosis.
Assessment of each participant typically commenced within 72 hours of
receipt of referral.
Participants were excluded if they
• Had prior treatment with anti-psychotics for more than 30 days
• Had an existing learning disability
• Did not fulfil the age criteria for adult mental health services (17-65)
• Had psychosis deemed to be the result of a general medical condition
Instruments included:
• Structured Clinical Interview for DSM-IV (SDID-IV)
• Global Assessment of Functioning Scale (GAF)
• Wisconsin Quality of Life Index-Client Version (WQLI)
Caregivers were interviewed separately to determine the onset and
duration of periods of untreated psychosis prior to initiation and were
asked to complete the WQLI Caregiver questionnaire to ascertain the
degree of care-giving provided within a month prior to presentation.
Caregivers also rated the QOL of participants on a scale of 1-10, 10 being
the best QOL they could obtain.
Ethical approval was granted by the St. John of God Order Provincial
Ethics Committee and data analysis was conducted using PASW 18 & 20.
Results
Figure 1: QOL Domain Averages
Results
Table 1: Sample Characteristics
In the weeks preceding presentation, carer’s reported that most
participants had stopped working or studying entirely (n = 25, 62.5%) and
approximately a third (n = 12) had not been managing their own personal
care or leaving home at all. Similarly, almost 40% (n = 16) had been
seriously confused, frightened or consistently anxious or depressed. In
terms of family assistance and the burden of care experienced by caregivers, there were no relationships between demographic variables and
care-giving although carer’s of those treated as out-patients reported
increased levels of assistance and support required (t(43) = -.36, p =
.046). The degree of family assistance in maintaining adequate levels of
personal care was also positively correlated with participants level of
affective flattening (r = .41, p = .033) and alogia (r = .40, p = .004). Carer’s
involvement in managing potentially harmful behaviors was associated
with participants level of positive symptoms (r= .37, p = .041). However,
carer’s evaluation of participants QOL was also not associated with the
level of family assistance and care-giving prior to presentation.
Conclusion
Study Setting
This study was conducted in DETECT early psychosis service which
provides early detection and phase specific treatment in the early phases
of psychosis. DETECT operates in South County Dublin and Wicklow.
Psychosis is a relatively common condition affecting approximately 3% of
the population. Schizophrenia, the commonest type, currently affects
about 84,000 people in Ireland. DETECT provides targeted professional
and public education to help reduce these delays and evidence-based
psychosocial treatments in the early phase to enhance recovery for
individuals with psychosis. Improving access to services is vital and
referrals of those with suspected psychosis are typically seen within 72
hours of receipt of referral.
Respondents were primarily mothers of participants (n = 20, 49%) and
were, on average, 50.7 (SD = 12.2) years of age. The demographic and
clinical characteristics of this sample are detailed in Table 1. The majority
of participants for whom caregivers provided information on their
experiences of care-giving were male (n = 28, 65.1%) and lived with
family (n = 35, 81.4%). The majority were diagnosed with a primary
psychotic disorder (n = 31, 72.1%) and of those that were in hospital at
assessment (n = 26, 60.5%), 42% (n = 11) were detained involuntarily.
The majority had been in hospital less than a week prior to the entry into
the study.
Although this study is preliminary and exploratory in nature, there is some
suggestion that the symptoms of psychosis during a first episode influence
the quantity of care-giving required3. Indeed, greater focus on minimising
hospital admissions and reducing in-patient stays may have a negative
impact on carers lives. However, few studies have assessed the influence of
psychosis on carers and there is a need for further studies with larger,
representative samples to assess the full impact of symptomatology,
functioning and QOL on carers during both the acute and stabilisation
phases.
Declaration of Interest and Statement of Funding
The presenting author was funded entirely by a Nursing & Midwifery Fellowship from the
Health Research Board of Ireland. DETECT is funded by the Health Service Executive and
has received funding from St. John of God Hospitaller Services, the Mental Health
Commission and the Health Research Board. The authors have no ties with industry.
References:
1. JONES, K. (2009) Addressing the needs of carers during early psychosis. Early Intervention in Psychiatry, 3(1), S22-6.
2. LAUBER, C., KELLER, C., EICHENBERGER, A. & ROSSLER, W. (2005) Family burden during exacerbation of schizophrenia: quantification and determinants of additional costs. International Journal of Social Psychiatry, 51, 259-64.
3. COTTON, S. M., GLEESON, J. F., ALVAREZ-JIMENEZ, M. & MCGORRY, P. D. (2010) Quality of life in patients who have remitted from their first episode of psychosis. Schizophrenia Research, 121, 259-65.

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