Carer psychoeducation in first-episode psychosis: Evaluation outcomes from a structured group programme

Abstract

Background:

Carers play an important role in supporting client adjustment and relapse prevention following a first psychotic episode. The caring experience however is a stressful and demanding one, and carers require support to develop coping strategies and sustain themselves in their role.

Aims:

To evaluate a psychoeducation programme provided within a public adult mental health service, designed for the families of clients experiencing first-episode psychosis.

Methods:

A pre- and post-test questionnaire was administered to quantitatively measure the participants’ changes in perceptions of their knowledge and understanding regarding mental illness and its treatment through attending the group. Qualitative items were included to ascertain other knowledge gained or benefits perceived and any critical feedback.

Results:

The programme significantly improved carers’ perceptions of their understanding of psychosis, recovery and relapse prevention. Additional feedback replicated previous findings that participants value support and feel less isolated through group attendance, gaining a sense of collective experience and the opportunity to share experiences and feel heard by peers.

Conclusions:

The evaluation demonstrates the efficacy of such a group and the importance of public mental health services in providing family interventions in first-episode psychosis care.

Keywords

First-episode psychosis family interventions multiple-family groups psychoeducation

Introduction

Caring for a person experiencing major mental illness involves substantial demands and considerable long-term stress that impact the physical, social and emotional well-being of family members (Hazel et al., 2004; Pickett-Schenk, Cook, & Laris, 2000; Yen, 2008). Carers of people in their first episode of psychosis (FEP) experience stigma, fears regarding the future for the person they support, and feelings of loss in the changed relationship they have with the person they care for (Lowenstein, Butler, & Ashcroft, 2010). The symptoms and challenging behaviours of the person they care for can produce anxiety, distress and confusion for carers (Addington, Coldham, Jones, Ko, & Addington, 2003; Jeppesen et al., 2005). Carers of individuals experiencing FEP report higher distress levels (Gibbons, Horn, Powell, & Gibbons, 1984; Gopinath & Chaturvedi, 1992; Martens & Addington, 2001) and greater carer burden (Bulger, Wandersman, & Goldman, 1993) when compared with family members of people experiencing more chronic or long-established major mental illness. FEP carers are generally unfamiliar with many aspects of mental illness and its treatment, including symptoms and behaviours associated with psychosis, medications and side effects, mental health services and systems of care, and awareness of the need to develop coping mechanisms (Lowenstein et al., 2010; Sin, Moone, & Newell, 2007).

International clinical practice guidelines for early psychosis treatment have recommended the provision of psychoeducation in multi-family groups (Addington et al., 2005). The multiple-family group approach has been described as a powerful and viable model of family intervention (McFarlane et al., 1995; Mullen, Murray, & Happell, 2002). The multiple-family group has been found to increase family problem-solving, reduce stress and anxiety, and promote mutual support between families, with the format reported to be more effective than individual family work in reducing relapse and promoting recovery (McFarlane et al., 1995; Mullen et al., 2002; Solomon, Draine, Mannion, & Meisel, 1996). Typically, in the last 10 years, groups to support carers of individuals experiencing FEP have been provided through specialist teams or psychological clinics rather than within public community psychiatric services (Leavey et al., 2004; Lowenstein et al., 2010).

In reviewing the implementation of early intervention services in the UK, Craig (2003, p. 338) noted that family work has been ‘intensively researched and well supported’ yet ‘has proven disappointingly frustrating to keep running in routine services’. More recent clinical guidelines seem to make allowances for this, and the associated limited evidence base, by emphasizing the importance of psychoeducation and support without specifying a format for delivery (Early Psychosis Guidelines Writing Group, 2010; National Collaborating Centre for Mental Health, 2009). Regarding specialist services overall, Craig (2003, p. 338) concluded:

It may turn out not economically or practically feasible to establish a dedicated and comprehensive EIS that encompasses both inpatient and community team in every area and it remains an open question whether having specialist workers embedded within generic CMHTs [community mental health trusts] might do just as well.

It is in this context that we aimed to evaluate a first-episode psychosis multiple-family psychoeducation carer group, without the patient present, delivered within a mainstream mental health service. The intent was to inform the future development of the group and ensure relevance and responsiveness to the needs of carers of people with first-episode psychosis.

The carer group intervention

The ‘Journey to Recovery’ group was a facilitated psychoeducation and support group for carers. Participants were carers of individuals between 16 and 65 years, with a diagnosis of a first-episode psychosis, receiving treatment from one of the community clinics of St Vincent’s Mental Health Service (SVMHS), an area mental health service in metropolitan Melbourne, Australia. The venue for the group alternated across the two clinics. The invitation to attend the group was extended to all family members. The definition of ‘carer’ was a significant other, including family member or friend, supporting a client of the service.

There were five criteria for case managers in referring carers:

They were the carer of a current client of SVMHS, receiving treatment at one of the two community area mental health service clinics.

The client was being treated for first-episode psychosis, within their first three years of treatment.

The carer had been previously identified by the client and/or family.

The client had given consent for staff of the area mental health service to have contact with the person they had identified as a carer.

The carer could communicate in conversational English.

The use of interpreters was considered for people from non-English-speaking backgrounds, but it was felt that this would be disruptive to fostering supportive group dynamics. As an alternative, individual family sessions were offered for those requiring interpreters.

The group programme was originally held monthly in the evening, over six two-hour sessions in 2009. The group was restructured at the end of 2009 based on feedback from carers who participated in the group, from carers who were referred but did not attend the group, as well as from case managers and early psychosis senior clinicians (Oxley, Bloom, & Petrakis, 2010). The restructured group utilized a ‘closed’ group format to provide greater clarity to prospective participants as to dates, topics and the level of commitment required. There were set topics, outlined in Table 1.

Table 1.

‘Journey to Recovery’ group topics.

Week 1	What is psychosis?
Week 2	Recovering from psychosis
Week 3	Medications
Week 4	Early warning signs (Relapse prevention)
Week 5	Community resources

In 2010 the group was offered on one night a week for a period of five weeks, with each session again of approximately two hours’ duration. Two early psychosis senior clinicians trained in family therapy conducted the group.

Method

Subjects

There were 15 participants who attended one or more sessions, with nine attending all five. Attendance ranged from nine to 14 people for a given session. Eighteen carers were referred to the group; there were no exclusions, however three carers were referred and subsequently chose not to attend. There were no differences in demographic terms between those who attended all sessions and those who did not.

Table 2 shows the demographics of the participants; most were male. The care-giving roles included parents, stepparent, brothers and an uncle.

Table 2.

Characteristics of participating carers.

Characteristics of carers	n	%
Gender
Male	11	73.3
Female	4	26.7
Age
10–19	1	6.7
21–30	0	0
31–40	0	0
41–50	12	80.0
51–60	2	13.3
Ethnicity
Australian	10	66.7
English	2	13.3
Macedonian	2	13.3
Sri Lankan	1	6.7
Relationship to client
Mother	4	26.7
Father	6	40.0
Brother	4	26.7
Uncle	1	6.7
Living situation
Living with client	10	66.7
Living separately	5	33.3

Instruments

We employed a four-point Likert scale questionnaire developed by Mullen et al. (2002) to evaluate their multiple-family group approach to family education. The questionnaire comprised questions on each of the topic areas, asking participants to indicate their perceived levels of knowledge and understanding. Response options ranged from ‘not at all good’ to ‘very good’. Questions were about knowledge of medications used to treat mental illness, other therapies and possible causes of mental illness; and understanding of stress and preventative strategies (Mullen et al., 2002).

There were minor local modifications made to the evaluation form. The term ‘mental illness’ in the Mullen et al. (2002) questionnaire was changed to ‘psychosis’ for our feedback form. There were questions removed from our version regarding therapy used for mental illness, the role of stress and causes of mental illness, as these were not the topic areas selected for our psychoeducation group. Other questions that addressed the participants’ degree of comfort in accessing the local mental health service and interacting with mental health care professionals were also replaced. A question was added on participants’ perceived level of knowledge of possible links between substance use and psychosis. There were six quantitative items in our questionnaire (Figure 1) instead of the eight utilized by Mullen et al. (2002). The questionnaire was administered at the beginning of the first session (pre-test) and re-administered at the completion of the fifth and final session (post-test).

Figure 1.

Family psychoeducation programme – feedback form.

Mullens et al. (2002) sought verbal comments from the participants in order to support the quantitative information collected. To produce a comparable data set in this aspect we also included three qualitative items at both points of data collection, inviting identification of other knowledge gained, any other benefits perceived, and any critical feedback participants might like to offer.

Data analysis

Analyses of the quantitative data were conducted using Stata version 11. As per the Mullens et al. (2002) study, evaluation questionnaires were confidential. Since participants were not identified individually from pre- to post-test, the results were analysed as a group rather than a repeated measures analysis. An independent samples t-test was used to compare the group as a whole at pre-test to the group at post-test on each of the six Likert scale items. A thematic analysis was conducted for the remaining three questions that were qualitative or free text in nature (Ritchie, Spencer, & O’Connor, 2003; Spencer, Ritchie, & O’Connor, 2003).

Results

Quantitative findings

Ratings increased to a statistically significant extent from pre- to post-test on three of the six items (Table 3). There was a significant increase in carers’ perceived understanding of what psychosis actually is, how a person recovers from psychosis, and ways to prevent getting mentally sick again.

Table 3.

Pre- to post-test means and significance values.

Item	M	SD	t (d.f.)	p
1. Understanding psychosis	Pre 1.33 Post 2.46	0.617 0.519	5.20 (26)	.001*
2. Understanding recovery	Pre 1.00 Post 1.77	0.76 0.832	2.56 (26)	.008*
3. Knowledge of medication	Pre 1.67 Post 1.69	0.919 0.75	0.06 (26)	.47 NS
4. Understanding prevention	Pre 1.00 Post 1.84	0.75 0.55	3.33 (26)	.001*
5. Knowledge of substance use	Pre 1.67 Post 2.08	0.72 0.49	1.73 (26)	.048 Bonferroni correction (NS)
6. Felt need for self-care	Pre 2.00 Post 2.46	1.04 0.88	1.23 (25)	.114 (NS)

Pre-test N = 15, post-test N = 13.

Alpha level = .01.

Qualitative findings

In qualitative data collected we found that the sentiment expressed in the feedback was overwhelmingly positive. Similarly most comments indicated that the programme was beneficial and rewarding, with its ‘holistic approach’, and that the group being embedded within the service that supports the client was valued. Respondents expressed appreciation, noting ‘We very much appreciate the time and effort put into this group’ and the ‘support’ given by the service.

There was some overlap in feedback from items for desired knowledge and other benefits gained from attending the group; these findings are summarized together in Table 4. There were themes that emerged in the qualitative feedback that reiterated the findings from our 2009 group, that participants valued support, felt a reduced sense of isolation, felt a sense of collective experience, and appreciated the opportunity to ventilate and feel heard by peers. Comments regarding these benefits included: ‘hearing about the circumstances of some other people and their family and their experiences of psychosis’; ‘feeling less isolated because of the common issues for carers’; and ‘meeting people having similar experiences.’

Table 4.

Knowledge acquisition and other perceived benefits from carer group participation.

	Number of carers (N = 11)	Pre-group knowledge and other benefit aspirations	Number of carers (N = 8)	Post-group knowledge and other benefit gains
Gains for self	6	‘Support’ or ‘understanding’ – 3 specify ‘from other parents/family members’ and ‘Meet others in same position’	6	‘Support’ and ‘Meeting people having similar experiences’
	2	‘Feel not alone’	1	‘Feeling less isolated’
	2	‘Learn to cope better’ and ‘relieve stress and anxiety’	1	Now feel carer input ‘is valued and will assist in [client’s] recovery’
	1	‘Greater awareness and insight’	1	Greater empathy for ‘depth of other people’s problems’
Knowledge to benefit person cared for	4	Learn more about ‘recovery process’ and ‘challenges’ for unwell family member	2	‘Understanding of psychosis’
	3	Best ‘way to help’ family member	2	‘Stages in recovery’ and ‘Relapse prevention’
	2	‘Learn to navigate’ mental health system	1	‘Very slow recovery, more patience needed’
	2	‘Learn strategies’	1	See client’s recovery in more ‘normal’ terms
	1	‘Knowledge of mental health’
	1	‘Work, employment issues’

Two carers provided critical pre-group feedback regarding: the difficulty ‘to leave an unwell family member unattended for over 2 hours’; and a request for a map on the flyer. Four carers provided post-group critical comments regarding the group: two suggestions about group content (‘More about drugs used in psychosis’ and ‘Recommended session on carer fatigue’); one comment about session delivery (not to ‘wait for late comers’); and one comment requesting a further ‘session in a few months’ to be offered.

Discussion

The results of this study support the usefulness of multiple-family group psychoeducation programmes for carers of people experiencing first-episode psychosis. We replicated a pre- to post- test evaluation approach developed by Mullen et al. (2002); our study findings were comparable, if more modest. While their results on all eight items tested indicated a highly significant increase inperceived knowledge and understanding in relation to mental illness, treatments, preventative strategies and mental health services for a four-week psychoeducation programme, our five-week programme produced highly significant increases in perceived understanding for only three of the six items tested.

The most significant change in scores took place in the item related to understanding of psychosis. To some extent this was a surprise to the group facilitators, since the group would not be the only forum through which these carers would be exposed to information about mental illness and its treatment. Within the SVMHS, integrated model clients and families get this information via case management sessions and regular medical reviews. This finding highlights the need to repeat and deliver similar information at multiple points across the carer journey, and in multiple formats, to ensure the information is received, understood and can be applied to the individuals’ unique circumstances.

Findings in the present study suggest that understanding of psychosis, recovery and preventive strategies can be significantly increased in five weeks by providing psychoeducation tailored to address each of these areas; however, knowledge of medication may require more input than a single session. Moreover, since this session was delivered with a guest medical officer co-facilitating, it is possible that the style of presentation differed from that of the regular presenters, or participants did not feel as comfortable to ask questions with someone new and were left with some questions after the session.

In the previous 2009 group, there was a session offered on substance use and misuse and its association with mental illness. This session was not requested by carers and so not included in 2010. The questionnaire however was not modified accordingly. It would appear that this item inadvertently operated as a control item: it would be reasonable to hypothesize that an aspect of knowledge for which no specific psychoeducation was delivered would not significantly increase. This was the case.

It was interesting and surprising to us that there was not a significant increase for carers in their scores on feeling a need to look after myself in supporting my friend or family member with mental illness. This finding is even more interesting in light of the qualitative comments that suggest that this group of carers did in fact hope for ‘support’ from others through attending the group, did feel ‘isolated’ and did hope to ‘learn to cope better’ and ‘relieve stress and anxiety’ through group attendance. There seem to be two factors at work here: potential self-selection bias and potential gender bias. Since pre-group means were already high for this item, this suggests that there could have potentially been a self-selection bias in attendance of the group, whereby carers who already identify the need to look after themselves were the participants who attended the group. Given that we have not surveyed invited family members who did not attend the group in this study, it is unclear whether this was the case.

The second factor was the gender bias of participants. This was an unusual group in that participants were predominantly male (73%). More females than males typically attend groups of this nature (Chien, Norman, & Thompson, 2006; Hazel et al., 2004; Lowenstein et al., 2010; McWilliams et al. 2010; Oxley et al., 2010; Pickett-Schenk et al., 2000; Reichhart et al., 2010), and they appear to respond more positively to the support elements of group participation such as decreased isolation, feeling heard and telling their story (Hazel et al., 2004; Oxley et al., 2010; Pickett-Schenk et al., 2000). When males do attend psychoeducational groups they often emphasize a preference for practical information and assistance to be provided (Chien et al., 2006; Leavey et al., 2004). It may be that a focus on self-care is somewhat antithetical to male group members and their needs and hopes in attending a group. Alternatively it may be that, as for substance use and misuse, with no session looking specifically at this content, this aspect of group process was not seen as a critical area of change for group participants.

The qualitative comments from participants in this study reiterate previous findings in the literature: support, stress reduction and increased coping are important gains from multiple-family group psychoeducation for carers of people with psychotic disorders (Dixon et al., 2001; McFarlane et al., 1995). Potentially there is something about the peer support nature of the group that assists with knowledge acquisition.

Mullen et al. (2002) argued in their study that an ‘important factor’ that ‘cannot be underestimated’ was that the intervention and evaluation were conducted by mental health nurses. While certainly we would support their assertion that mental health nurses have a pivotal role to play in providing education and support to clients experiencing first-episode psychosis and their families, nothing in their paper suggests that this important work is specific to this professional group alone. In the current study the intervention and evaluation were conducted by a social worker and an occupational therapist, with a medical staff member conducting a session and a social worker in a research role joining the team for data analysis and production of an evaluation report. We would contest then that quality intervention with families of people experiencing early psychosis is the province of nurses alone; rather, allied health and medical professionals in this field are similarly charged with addressing these needs for families of our clients.

Limitations

Although conducted in a community-based psychiatric service that provides care for a geographically defined population, our sample was not epidemiologically based. While clinicians referred all suitable carers for the group, some did not accept the referral. The study did not include a control group. This study did not assess longer-term outcome measures for carers, nor did it assess the impact these carer interventions might have for client outcomes.

At 15 participants, our study was a small one. That said, this is a typical number for a single group and reflects good group work practice to enable responsiveness to the needs of various group members. While the Mullen et al. (2002) study reported results for a larger number of participants (N = 24), these were drawn from two separate groups.

There were limitations regarding the pre–post measure adopted. The Mullen et al. (2002) questionnaire was found in their study to have good face validity; however, there has not been further testing reported in the literature as to content validity. Further, we made minor changes to the questionnaire to reflect the session topics requested by carers in our service setting.

A decision was made to exclude carers who were not able to communicate in English, as discussed earlier in the group description and referral criteria. The implication is that the findings reported in this study may not be directly applicable to culturally and linguistically diverse carer populations.

Results from the current study may not be representative of all mental health carers, their needs and their views about the useful elements of multiple-family group intervention. However, in comparing findings from a similar programme in a different Australian city and service (Mullen et al. 2002), and qualitative data from a psychoeducation carer group study conducted in the same service in 2009 (Oxley et al., 2010), there were common recurrent themes. It will be important to continue to evaluate the group programme to work to best serve the needs of a range of carers.

Conclusions

The findings suggest that a psychoeducation programme designed for the families of clients experiencing first-episode psychosis can be provided within a public adult mental health service, and such a programme can result in significant improvements in perceived understanding of psychosis, recovery and preventive strategies for group participants.

Footnotes

Acknowledgements

We thank the participants: carers and family members of people challenged by first-episode psychosis. Thanks also to the management and clinicians of Hawthorn and Clarendon Community Mental Health Services for referrals to and support of the ongoing development of the ‘Journey to Recovery’ group. Thanks to Tom Trauer for statistical support, and to David Castle for input on an earlier draft of this paper.

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