informal caregivers in early psychosis: evaluation of need for psychosocial intervention and...

Original Article

Informal caregivers in early psychosis: evaluationof need for psychosocial intervention and

unresolved griefeip_369 1..9

John Mulligan,1 William Sellwood,2 Graeme S. Reid,3 Suzanne Riddell4 and Natasha Andy5

1Greater Manchester West NHS Trust,Manchester, 2Institute of Psychology,Health and Society, University ofLiverpool, Liverpool, 3Lancashire Care NHSFoundation Trust/University of Lancaster,4Cheshire and Wirral Partnership NHSFoundation Trust, Chester, and5Calderstones Partnership NHSFoundation Trust, Lancashire, UK

Corresponding author: Dr John Mulligan,Psychosis Research Unit, GreaterManchester West NHS Trust, HarropHouse, Bury New Road, Prestwich,Manchester M25 3BL, UK. Email:[email protected]

Received 4 August 2011; accepted3 March 2012

Abstract

Aim: Relatives of service usersinvolved with Early Intervention inPsychosis services often experiencesubstantial distress and need associ-ated with their role as caregivers. Thisstudy adapted versions of the Rela-tives Cardinal Needs Schedule andthe Texas Inventory of Grief andtested their utility for use among rela-tives of service users experiencing afirst episode of psychosis.

Methods: Staff, service users and rela-tives were consulted and a pilot tookplace which facilitated the creation ofthe Relatives’ Urgent Needs Schedule– Early Intervention version (RUNS-EI) and the Texas Inventory of Grief –Early Intervention version (TIG-EI).Thirty service user-caregiver dyadswere recruited for the evaluation ofreliability and validity.

Results: The level of ‘urgent need’identified by the RUNS-EI

demonstrated good concurrent valid-ity with measures of service usersocial and global functioning as wellas 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 withincreased TIG-EI scores correlatedwith reduced service user socialand global functioning as well asincreased scores on measures assess-ing relatives’ distress, expressedemotion and caregiving needs.

Conclusions: Results appear tosupport these assessments’ utility asmeasures of need for psychosocialintervention 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 healthsystems, but their contribution is often underval-ued.1 Unpaid caregivers save the Australian, Britishand American health and social care systemsapproximately $30.5,2 £1193 and $3754 billion perannum, respectively. Proximity to and familiaritywith service users ensure relatives are often bestplaced 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 costas 29–60% of relatives have been demonstrated tosuffer from significant psychological distress.11

The consequences of excessive burden and stresscan impact on the psychological well-being of bothservice users and relatives.12 The link between stressand deterioration in mental health has been exam-ined extensively within the context of the familyatmosphere, with particular focus on the conceptof ‘Expressed Emotion’ (EE).13 Incorporating criticalcomments (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

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shorthand description of behaviours and relation-ships with respect to the emotional environmentwithin the family.13–15

Rates of ‘relapse’ for service users with a diagno-sis of schizophrenia can vary from 50% for thosefrom a ‘high EE’ background to 21% for those from‘low EE’ environments.16 Such findings have led tothe development of family interventions (FIs) tosupport service users in their recovery. These, inturn, have shown efficacy in terms of reducing riskof ‘relapse’.17 However, it has been pointed out thatthese findings may lead to an overemphasis onhigh EE in delivering interventions.18 In addition,despite positive results, it is acknowledged thatthere has been poor implementation of such inter-ventions.19 The former point is important becausewhether caregivers exhibit low or high EE they mayhave a need for support/intervention. In addition,it is possible that working with low EE families maybring clinical benefits. This has led to a change offocus to informal caregivers’ needs rather thanEE. In this context, ‘need’ refers to a need for spe-cific components of psychosocial interventions,rather than merely highlighting problems.18 Brewindiscusses the confusion around the term ‘need’in mental health settings, pointing out that estab-lishing a ‘lack of wellbeing’ does not equate to‘need’.20

Research evaluating services for relatives hasbeen criticized for a lack of standard robust instru-ments assessing needs related to caregiving.21–25 Bar-rowclough and colleagues sought to address thisissue in the context of family-based interventionsfor ‘schizophrenia’-related difficulties.18 The Rela-tives’ Cardinal Needs Schedule (RCNS)18 is avalidated measure allowing staff to systematicallyassess needs in relation to the provision ofevidence-based psychosocial interventions forcaregivers. The measure supports an approachbased upon eliciting problems faced by relatives/caregivers, specifying whether these problems weredistressing and if so whether caregivers would likehelp for dealing with these distressing problems. Ithas been used successfully within service-basedintervention studies subsequent to its develop-ment26,27 and shows promise as being appropriatefor use among ethnic minority28 and forensicpopulations.29 In addition, the measure hasdemonstrated acceptable interrater and test–retestreliability (mean = 83.3%, n = 27) and concurrentvalidity with number of needs correlating withservice user level of ‘symptoms’ (r = 0.37, n = 45,P < 0.05) as well as relatives’ levels of distress(r = 0.40, n = 45, P < 0.01) and low mood (r = 0.37,n = 45, P < 0.05).18

The measure has not been examined in relation toEarly Intervention in Psychosis (EIP) services. Diffi-culties facing first-episode psychosis (FEP) serviceusers and relatives/caregivers are different from dif-ficulties faced by those who have lived with psycho-sis for a prolonged period.12,30,31 In particular, thereare problems with assumptions regarding diagnosis,prognosis and terminology which could underminethe use of the RCNS in its existing form within EIPservices. As the psychometric properties of theRCNS were examined based on caregivers sup-porting service users coping with ‘schizophrenia’-related difficulties for 14.3 years on average,18 itcannot be assumed that the measure’s reliabilityand validity applies to FEP relatives.

Grief

An increasingly recognized emotional consequenceof being a close relative of someone affected bypsychosis is grief. Although the person with mentalhealth difficulties has not died, families oftenundergo substantial adjustments that can contrib-ute towards relatives expressing a longing for thereturn of the quality of former relationships.32,33 Thiscan leave family members mourning the loss of‘what could have been’ in addition to coping withthe burden associated with ‘what is’.34,35 The extentof such grief is comparable to the experience offamilies who suffer from bereavement.32,36 Unre-solved grief has been linked to poor physical andpsychological health as well as an increased risk ofpsychological distress among relatives.37,38 Grief isalso thought to have a substantial influence oninteractions and the quality of the relationshipbetween relatives and service users.37 Among FEPrelatives, it has been reported that high levels ofgrief were associated with CCs and EOI within thefamily.39,40

Very little is known about the development andinfluence of grief among relatives at the early stageof psychosis.41 Although some research appears tosupport the contention that unresolved grief reac-tions can worsen over time,32,36 others suggest thatsuch reactions often fluctuate42 or decrease from thetime of diagnosis.37 There is a lack of consensusrelated to the expression and developmental courseof grief reactions among relatives.32,36,37,43 Thisemphasizes the need for further research thatfocuses on the early developmental course of griefreactions among FEP family members.

Richardson and colleagues identified only twovalidated measures of loss among relatives ofservice users coping with mental health difficul-ties.41 First, is the Impact of Events Scale (IES).42 This

Need and grief among FEP caregivers

2 © 2012 Blackwell Publishing Asia Pty Ltd

was developed to assess subjective stress for recentlife events with particular emphasis on intrusivethoughts and avoidance.41 It has been used toassess grief in response to bereavement44 and withrelatives supporting a family member with diag-noses related to learning disability44,45 and schizo-phrenia.34 Reliability of the measure has beenreported as acceptable.42,46,47

The second of these measures is the MentalIllness Version of the Texas Inventory of Grief (MIV-TIG).32 The MIV-TIG was adapted from the ‘TexasInventory of Grief’48 and assesses caregivers’ initialand present feelings about their perceived ‘loss’ inrelation to their relatives’ mental health and associ-ated consequences. Such loss is hypothesized toresult in a grief reaction that manifests in the form ofcontinuing emotional distress, preoccupation withthe lost person and an inability to accept the loss.37

The measure has been used regularly withinthis area of research32,36,37,39,40,49 and has adequatereliability.32

Although both the IES and MIV-TIG have beenused previously, the utility of both as effective mea-sures of grief among relatives supporting serviceusers with mental health difficulties requires furtherinvestigation within a variety of populations. Thisstudy focuses on the MIV-TIG and FEP relatives. Thepsychometric properties of the MIV-TIG were exam-ined with relatives coping with schizophrenia andbipolar-related difficulties for periods of over14 years.32 Compared with FEP relatives copingwith psychosis-related difficulties for a maximum of3 years, it can be hypothesized that substantial dif-ferences exist between the two groups in relation totheir experience of and reaction to loss. Althoughthe present feelings scale of the MIV-TIG has beenused previously with FEP relatives,39,40 there is anabsence of evidence demonstrating the measure’spsychometric properties or clinical utility with sucha population. Use of the MIV-TIG within EIP ser-vices requires further analysis.

Study aims

The aims of the present study were:

1 To modify the RCNS and MIV-TIG for usewith FEP relatives/caregivers involved with EIPservices.

2 To examine the psychometric properties of thenewly adapted measures (the Relatives’ UrgentNeeds Schedule – Early Intervention version(RUNS-EI) and the Texas Inventory of Grief – EarlyIntervention version (TIG-EI)).

3 To gather preliminary data to assist in profilingthe needs of and report the level of unresolvedgrief experienced by FEP caregivers within thisstudy.

METHOD

Design

A cross-sectional correlational design incorporatingthe use of self-report questionnaires and a struc-tured interview schedule was utilized.

Participants

A total of 64 EIP case managers responsible forapproximately 450 eligible service users were pro-vided with information/consent packs and asked tosupport service users and relatives to consider par-ticipating in the research. Case managers facilitatedaccess to a total of 30 relative/service user dyadswho provided informed written consent to partici-pate. All service users were assessed by multidisci-plinary teams and had been diagnosed as havingexperienced psychosis (hallucinations or delusionsor both); were within 3 years of the first-treatedepisode and over 18 years of age. Relatives wererequired to have a minimum of 10 hours face-to-face contact per week with service users and classifythemselves as the ‘primary caregiver’. That is theyjudged themselves to have provided more care tothe service user than other members of the family.Post-hoc power analysis using GPOWER50 (with theestimation based on a-level of 0.05, n = 27 (remov-ing three participants with missing data) and aneffect size of 0.51†) indicated that this number ofparticipants was sufficient to detect power at 0.91,which is considered acceptable.51

Of the 30 relatives who participated, 8 (26.7%)were men and 22 (73.3%) were women, and theywere between 29 and 71 years of age (mean 48.97).Relatives’ relationship to service users included 20(66.7%) mothers, six (20%) fathers and four (13.3%)partners. The majority of relatives (93.3%) classedthemselves as ‘white British’. Of the service users, 17(56.7%) were men and 13 (43.3%) were womenbetween 18 and 40 years of age (mean 24.73). A totalof 18 (60%) were single while 12 (40%) were in rela-tionships. Some 21 (70%) still lived at the familyhome. Twenty service users (66.7%) had spent timein hospital (mean admissions = 1.4, standard devia-tion (SD) 1.26). Four (13.3%) service users were in

†0.51 was selected as it was the lowest rs value observed in rela-tion to the concurrent validity analysis.

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full-time employment or education and the remain-ing 26 (86.6%) were unemployed.

Eleven participants completed a follow-up inter-view to assess test–retest reliability. In addition, 21audio-recorded interviews were analysed to assessinterrater reliability (this was completed to ensurethe interviewer’s interpretation and scoring of needareas were an accurate reflection of the discussionwith participants).

Ethical approval

Ethical approval was gained via the UK IntegratedResearch Application System and the research con-forms to the Declaration of Helsinki.52

Measures

Relatives’ Urgent Needs Schedule – EarlyIntervention

Based on the RCNS,18 the RUNS-EI was adapted toassess the need for psychosocial interventionsamong FEP relatives. It is a structured interviewschedule aimed at determining issues that FEPrelatives have found distressing over the previous12 months and require help for. The measureinvolves the use of threshold questions that aim toidentify and differentiate ‘no needs identified’,‘needs’ and ‘urgent needs’. The final version ofthe RUNS-EI assesses the following 13 need areas:information, monitoring of early warning signs,psychosis-related difficulties, disruptive (previously‘antisocial’) difficulties, constructive (previously‘negative’) difficulties, interpersonal difficulties,affective difficulties, relationship difficulties, work/study difficulties, domestic task difficulties,financial difficulties, social difficulties and emo-tional experience difficulties (previously ‘negativeemotions’).

Texas Inventory of Grief – Early Intervention

The TIG-EI is a modified version of the MIV-TIG32

and assesses relatives’ initial and current feelingsabout their perceived loss in relation to their rela-tive’s mental well-being. The measure is dividedinto two sections and Likert scale scoring of 1–5relates to ‘completely false’, ‘mostly false’, ‘true andfalse’, ‘mostly true’ and ‘completely true’, respec-tively. Section 1 investigates the relatives behaviourwhen they first noticed that their loved one wasexperiencing mental health difficulties. Section 2relates to present feelings about their perceived loss.

Consultation and pilot

Mental health professionals and service user repre-sentatives were consulted about the MIV-TIG andRCNS/RUNS-EI over a 6-month period. Feedbackwas requested on adaptations necessary to ensurethat the measures were appropriate for use amongrelatives and staff involved with EIP services. Subse-quently, four relatives took part in a pilot and pro-vided feedback on adjustments required to ensurethe measures acceptability to FEP relatives. Thisprocess resulted in adaptations being made toensure language used within both measures wasacceptable to EIP staff and service users.

All references to ‘mental illness’ within the TIG-EIwere replaced with ‘mental health difficulties’ or‘unwell’. No further changes were made to theTIG-EI.

In addition to language adaptations, furtherchanges of the RUNS-EI were made following thepilot. Unlike the original that requires the priorcompletion of the Family Questionnaire (FQ)11 andKnowledge about Schizophrenia Interview (KASI),53

the RUNS-EI incorporated the FQ and elements ofthe KASI in order to support completion of theassessment in one sitting. In addition, the ‘profes-sional support’ section contained within the RCNSwas removed and the ‘emotional difficulties’ sectionexpanded.

Other empirically validated measures used in thestudy included:

• The FQ,38 which is an integral part of the originalRCNS assessment.

• The General Health Questionnaire-28 (GHQ-28).54

• Family Questionnaire, Expressed Emotion(FQ-ee).55

• The Social Functioning Scale (SFS).56

• Global Assessment of Functioning Scale (GAF).57

Validation phase (RUNS-EI)

GAF scores were completed on behalf of serviceusers by case managers. The remaining measureswere completed by relatives. Twenty-one audio-recorded interviews were independently assessedby a second member of the research team for thepurpose of investigating interrater reliability. Elevenrelatives completed the RUNS-EI for a second time(within 3 weeks) to assist in the evaluation of test–retest reliability.

Data analysis

To test concurrent validity, established measures ofconcepts demonstrated to overlap or relate to needamong relatives were investigated using Spearman’s



rank correlation coefficient (rs). Spearman’s rho wasalso used to assess test–retest reliability. The sameanalyses were conducted for the TIG-EI. Cohen’skappa coefficient was used to assess interrater reli-ability on the RUNS-EI. Data were analysed usingSPSS; Windows Version 14.58

RESULTS

Level of functioning

Service user social functioning scores (mean 116.27,SD 46.98) were similar to those found in other first-episode studies.59,60 Service users’ global function-ing scores (mean 64, SD 16.34) appear slightlyhigher than some other FEP studies.61,62 This mayrelate to staff feedback indicating a tendency to referparticipants perceived as ‘not in crisis’ or ‘doing wellenough to take part’.

Expressed emotion

The overall mean score for CC was 19.90 (SD 5.49,range 10–31) and for EOI it was 26.20 (SD 4.68, range14–37). Of the 29 relatives who completed theFQ-ee, 52% were classed as ‘low EE’ and 48% wereclassed as ‘High EE’.

Distress

The overall mean GHQ-28 score for relatives was24.03 (range 8–52, SD 10.68). Three participants(10%) reached the ‘clinical caseness’ threshold. Tworelatives who achieved ‘clinical caseness’ and onewho did not reported current suicidal ideation.

Grief

Of the 29 participants who completed the TIG-EI,the overall mean was 72.53 (SD 19.48), which isan aggregate of the scales measuring ‘past experi-ences’ (mean 24.17, SD 7.77) and ‘present experi-ences’ (mean 48.36, SD 15.65). The ‘presentexperiences’ grief scores are similar to the levels pre-viously observed among FEP relatives40 and relativesof service users with longer-term difficulties associ-ated with a diagnosis of schizophrenia.36 The overallgrief scores identified in this study are similar to thelevel observed by Miller and colleagues, which ledthem to suggest that grief experienced by relativescoping with service user mental health difficulties‘may be comparable in magnitude to the grief suf-fered by families who have experienced a death’.32

Psychometric properties of the RUNS-EI

Interrater reliability

All threshold questions necessary to decidewhether an ‘urgent need’ existed were included inthe analysis. Based on Cohen’s kappa thresholdssuggested by Landis & Koch,63 ’relationship urgentneed’ demonstrated ‘moderate’ agreement(kappa = 0.56, n = 21, P < 0.001), both ‘work urgentneed’ (kappa = 0.65, n = 21, P < 0.001) and ‘difficultemotion urgent need’ (kappa = 0.62, n = 21,P < 0.001) demonstrated ‘substantial’ agreementwhile the remaining 10 ‘urgent need’ areas demon-strated ‘outstanding’ interrater agreement. Theoverall mean kappa for interrater reliability was 0.88(range 0.56–1.00).

Test–retest reliability

Time one and time two ‘urgent needs’ demonstrated‘very strong’ agreement (rs = 0.99, n = 11, P < 0.001)while ‘needs’ demonstrated ‘moderate’ agreement(rs = 0.63, n = 11, P = 0.018).

A subgroup of five relatives assisted with testingthe reliability of the adapted version of the FQ.Responses from each section of the FQ completedindependently by relatives before the interviewwere compared with FQ responses to the adaptedversion used within the RUNS-EI. There was a ‘verystrong’ relationship between difficulties identifiedin the FQ and those in the adapted version incorpo-rated into the RUNS-EI (agreement ranging from89% to 100%).

Concurrent validity

There was a strong positive correlation betweenrelatives’ ‘urgent needs’ and higher EE (rs = 0.55,n = 28, P = 0.001), increased distress related tothe GHQ-28 (rs = 0.51, n = 28, P = 0.003) andincreased grief scores on the TIG-EI (rs = 0.61,n = 27, P < 0.001). Scores also indicated increased‘urgent needs’ strongly correlate with lower serviceuser scores on the GAF (rs = -0.74, n = 27, P < 0.001)and SFS (rs = -0.51, n = 28, P = 0.003). No significantcorrelations were found between identified needsnot classed as ‘urgent’ and the measures used toassess concurrent validity (see Table 1).

RUNS-EI: profile of need

A total of 219 ‘needs’ were identified among relativeswho completed the RUNS-EI (n = 29). Of these, 44were classed as ‘needs’ and 175 were classed as

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‘urgent needs’. The overall mean number of ‘needs’identified was 7.58 (range 1–13, median 7), of which,on average, 6.03 (range 0–11, median 6) was classedas ‘urgent needs’ (Figs 1,2).

Psychometric properties of the TIG-EI

The internal consistency of the TIG-EI was found tobe excellent with Cronbach’s alpha coefficients of

0.88 for past grief, 0.94 for present grief and 0.92 fortotal TIG-EI scores. These coefficients correspondto the measure’s internal consistency rating as‘excellent’.64

There was a strong positive correlation betweenrelatives’ grief scores and relatives’ EE (rs = 0.57,n = 28, P = 0.001) as well as increased distress(rs = 0.38, n = 28, P < 0.022) and caregiving needs(rs = 0.62, n = 26, P < 0.001). There was also a closeassociation between increased scores on the TIG-EIand service user global functioning (rs = -0.52,n = 26, P < 0.003) and social functioning (rs = -0.5,n = 28, P = 0.004) (see Table 2).

DISCUSSION

The primary aims of the present study were to adaptand evaluate the psychometric properties of twomeasures. First, the RUNS-EI, which is aimed atidentifying targets for family-based interventionsin early psychosis, and second, the TIG-EI, whichtargets grief reactions within the same clinicalsetting.

The RUNS-EI has good test–retest reliability for‘urgent needs’ and adequate test–retest reliabilityfor ‘needs’ identified.51 In addition, there was an‘outstanding’ level of agreement between two inde-pendent raters. The total number of ‘needs’ (i.e.‘needs’ plus ‘urgent needs’) as well as the numberof ‘urgent needs’ exhibited a strong inverse rela-tionship with service user general and socialfunctioning. ‘Urgent need’ was also positivelyassociated with EE, distress and grief on the part ofcaregivers. Thus, the reliability and validity of theRUNS-EI appears to be promising. The apparentlack of association between identified ‘needs’ (notclassed as ‘urgent’) and the concurrent validitymeasures, coupled with the stronger continued

TABLE 1. Investigation of concurrent validity of the RUNS-EIusing Spearman’s rho (rs)

Measure Need Urgent need Total needs

FQ-ee – total -0.09 0.55** 0.54**GHQ – total -0.01 0.51** 0.50**TIG-EI – total 0.11 0.61** 0.62**GAF – total -0.02 -0.74** -0.70**SFS – total 0.06 -0.51* -0.55**

*P < 0.05 (one tailed); **P < 0.01 (one tailed).FQ-ee, Family Questionnaire, Expressed Emotion; GAF, Global Assessmentof Functioning Scale; GHQ, General Health Questionnaire; RUNS-EI, Rela-tives’ Urgent Needs Schedule – Early Intervention version; SFS, SocialFunctioning Scale; TIG-EI, Texas Inventory of Grief – Early Interventionversion.

RUNS-EI total number of needs

27 28

18 19

16

20

1012

6

14

25

0

5

10

15

20

25

30

Info

rmat

ion

Early

signs

Psych

osis

Disrup

tive

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uctiv

e

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rper

sona

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Affect

ive

Relatio

nship

Wor

k

House

hold

Finance

Social

Emot

ions

Need area

No

. of

nee

ds 18

6

FIGURE 1. Summary of the total number of ‘needs’ identifiedusing the Relatives’ Urgent Needs Schedule – Early Interventionversion (RUNS-EI).

RUNS-EI number of urgent needs

12

4

18 1819

16

20

6 6

11

6

14

25

0

5

10

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30

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signs

Psych

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uctiv

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sona

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Affecti

ve

Relatio

nship W

ork

House

hold

Financ

e

Social

Emot

ions

Urgent need area

No

. of

nee

ds

FIGURE 2. Summary of the total number of ‘urgent needs’identified using the Relatives’ Urgent Needs Schedule – EarlyIntervention version (RUNS-EI).

TABLE 2. Investigation of concurrent validity of the TIG-EI usingSpearman’s rho (rs)

Measure TIG-EI past TIG-EI present TIG-EI total

RUNS-EI 0.43* 0.53* 0.62**FQ 0.40* 0.50** 0.57**GHQ 0.37* 0.34* 0.38*GAF -0.17 -0.45** -0.52**SFS -0.20 -0.41* -0.50**

*P < 0.05 (one tailed); **P < 0.01 (one tailed).FQ, Family Questionnaire; GAF, Global Assessment of Functioning Scale;GHQ, General Health Questionnaire; RUNS-EI, Relatives’ Urgent NeedsSchedule – Early Intervention version; SFS, Social Functioning Scale;TIG-EI, Texas Inventory of Grief – Early Intervention version.



presence of ‘urgent needs’ identified during retestadministration, provides support for the inclusionof threshold questions that differentiate ‘needs’and ‘urgent needs’ within the RUNS-EI.

The reliability and validity of the TIG-EI alsoappears to be encouraging. The measure’s internalconsistency is ‘excellent’,64 and the concurrent valid-ity assessment against other measures hypothesizedto relate to unresolved grief demonstrated closeassociations. Higher scores on the TIG-EI correlatedwith higher scores for relatives on measures of dis-tress, EE and caregiving needs. Higher grief scoresalso correspond to lower scores of service userglobal and social functioning.

The data obtained from both measures indicate asubstantial level of problems, needs and distressamong participants. The median number of ‘urgentneeds’ identified by relatives completing theRUNS-EI was 6. Many of these needs relate togaining more knowledge about service user difficul-ties and support for the range of difficult emotionsand experiences associated with caregiving. Consis-tent with research elsewhere,39,40 this study addssupport to the contention that grief plays a signifi-cant role in the lives of FEP caregivers and perhapsshould be targeted specifically when addressing theneeds of caregivers.

Use of RUNS-EI could potentially support ser-vices in understanding and quantifying needs thatcaregivers have and help plan tailored interven-tions to meet those needs. This could then facili-tate the direction of clinical resources towardspeople and needs that require the most urgentassistance. Like the original RCNS,18 use of theRUNS-EI to identify need can occur in a cost-effective way that requires a minimum of training.Developing, further testing and implementingpsychosocial interventions to address these needswithin EIP services, however, are likely to requirefurther consideration, resources and empiricalresearch.

The range of family work that takes place withinservices is on a continuum from minimal familyinvolvement to the provision of highly specializedforms of FIs.65 There are well-documented obstaclesto the implementation of FIs in routine clinicalpractice.19,66 While awaiting specialist front line staffto become more active in providing tailored FIs,perhaps use of a measure such as the RUNS-EIcould extend beyond ‘formal’ FI planning and havea role within day-to-day clinical practice. In thisway, staff could potentially better support caregiversand further develop their own and colleagues’ skillsand confidence in productively working withfamilies systematically.

Conclusions drawn from this study need to betempered. The 30 relative/service user dyads whoparticipated represented 7% of the total availableEIP caseload. A subset of case managers (23%) com-pleted a post-recruitment survey and indicated thatnon-participation related to staff having no involve-ment with relatives (30%), engagement difficulties(9%) or relatives judged as too distressed to partici-pate (28%) and relatives not being offered (13%) ordeclining (20%) the opportunity to participate whenoffered. This, coupled with the relatively high GAFscores, may indicate an underrepresentation ofdistress and ‘need’ within the study. However, theparticipants in this study share many similaritieswith participants from other FEP research.31,39,40,59,67

Despite the sample being comprised of the highestfunctioning, easiest to recruit participants, thelevels of need and grief highlighted were substantialand clinicians working in EI services must be con-cerned. Further work is required in order to ensurethat the RUNS-EI and TIG-EI apply to those at themore severe end of the spectrum as well as with thecurrent sample.

Only 11 participants completed the test–retestphase of the study, and although the indices for reli-ability were very high these could be questioned andcertainly warrant further investigation. The 3-weekgap between assessments may also be questionedas EE status can change rapidly.39 However, this gapis important because the needs that are the focus ofthe RUNS-EI tend to be long-standing and relativesare actually questioned about issues occurring overthe previous 3 months.

Demographic data were recorded for relativesincluding age, gender, ethnicity, marital andemployment status, whether relatives knew serviceusers before experiencing an FEP and whether othermembers of the immediate family were experi-encing mental health difficulties. There were notenough participants to perform regression analysesto examine the predictive value of these variables foreither urgent needs or grief. Unfortunately, socio-economic status data were not recorded and thistoo may have had some predictive value. Furtherresearch should examine these variables.

In addition, caregivers were fully aware that localservices were not specifically offering assistance forany needs identified during interviews. As many EIPservices often do not routinely offer a variety of, orany, tailored evidence-based psychosocial interven-tions to address the needs of caregivers, relatives’answers were based on hypothetical scenarios (i.e. ‘ifhelp was available . . . would you be interested? . . .’).In addition to raising ethical questions that theauthors considered before completing this research,

J. Mulligan et al.


it is a further limitation of this study and futureresearch assessing the utility of the RUNS-EI in con-junction with tailored interventions is required.

CONCLUSION

The RUNS-EI appears to be a promising tool tosupport EIP staff to identify and address areas ofneed that may ultimately impact on the well-beingof both relatives and service users. It is hoped thatan EIP-specific needs assessment tool such as theRUNS-EI can make a contribution to identifyingrelatives’ needs and supporting the expansion ofneeds-led and family-focused clinical practicewithin EIP services.

The developmental course of grief reactionsrelated to the experience of mental health difficul-ties requires further study. This is particularlyimportant for FEP relatives with evidence to dem-onstrate that early interventions for individuals whoexperience bereavement can be detrimental andimpede the ‘natural grieving process’.68 The presentstudy was a relatively small but hopefully importantfirst step towards facilitating the systematic assess-ment of needs and resultant grief reactions ofcaregivers who support those experiencing a firstepisode of psychosis.

ACKNOWLEDGEMENTS

This research was undertaken as part of Dr Mulli-gan’s D.Clin.Psychol at the University of Liverpool.The authors are indebted to the service users/relatives and staff of Mersey Care and Cheshire andWirral EIP services for supporting this research. Inparticular, special thanks to relatives, the MerseyCare Service User Research & Evaluation (SURE)Group, Andrew Pulford, Abdul Hussein and Dr.Aisling O’Kane for their valuable contributions.

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