Clinical Correlates of Family Assistance and Carer Perception of Quality of Life in First-Episode Psychosis Ms. Laoise Renwick

1’2

, Ms. Roisin Doyle

1

, Dr. John Lyne

1

, Mr. Kevin Madigan

1

, Mr. Niall Turner

1

, Mr. Anthony Kinsella

1

, Dr. Mary Clarke

1,3

, Prof. Eadbhard O’Callaghan

1,3,

†

,

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 support 1 and the amount of care-giving required increases dramatically in the weeks prior to admission 2 .

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

Table 1: Sample Characteristics Figure 1: QOL Domain Averages

Results

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 care givers, 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.

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.

Conclusion

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 required phases.

3 . 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

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.