Background literature

Although information programmes for service users and family members are not new (Pekkala & Merinder, Reference Pekkala and Merinder2002; Cleary et al. Reference Cleary, Hunt, Matheson, Siegfried and Walter2008; Tungpunkom & Nicol, Reference Tungpunkom and Nicol2008; Pharoah et al. Reference Pharoah, Mari, Rathbone and Wong2010; Xia et al. Reference Xia, Merinder and Belgamwar2011), the programmes available tend to be developed by practitioners, with little or no input from service users and family members into the design or delivery. Only one programme, the Vet-to-Vet programme developed in the United States in collaboration with war veterans with mental health difficulties, involved service users in the development of the programme and the learning tools used (Resnick et al. Reference Resnick, Armstrong, Sperrazza, Harkness and Rosenheck2004; Resnick & Rosenheck, Reference Resnick and Rosenheck2008). To date, clinician-developed and clinician-led educational interventions for people experiencing mental health difficulties have dominated the field, with peer-to-peer (service user or family member-led) educational interventions beginning to emerge more recently (Barber et al. Reference Barber, Rosenheck, Armstrong and Resnick2008; Pickett-Schenk et al. Reference Pickett, Diehl, Steigman, Prater, Fox and Cook2008; Resnick & Rosenheck, Reference Resnick and Rosenheck2008; Druss et al. Reference Druss, Zhao, von Esenwein, Boma, Fricks, Jenkins-Tucker, Sterling, DiClemente and Lorig2010; Pickett et al. Reference Pickett-Schenk, Lippincott, Bennett and Steigman2010).

Positive outcomes from clinician-led programmes include reduction in relapse and readmission rates and improved psychosocial functioning (Cleary et al. Reference Cleary, Hunt, Matheson, Siegfried and Walter2008; Tungpunkom & Nicol, Reference Tungpunkom and Nicol2008; Pharoah et al. Reference Pharoah, Mari, Rathbone and Wong2010; Xia et al. Reference Xia, Merinder and Belgamwar2011; Zhao et al. Reference Zhao, Sampson, Xia and Jayaram2015). Research indicates that brief (eight to ten sessions) psychoeducational programmes produce significant reductions in relapse and rehospitalisation rates compared with treatment as usual at 2 year follow up (Buchkremer et al. Reference Buchkremer, Klingberg, Holle, Schulze and Hornung1997), 5 year follow up (Hornung et al. Reference Hornung, Feldmann, Klingberg, Buchkremer and Reker1999) and 7 year follow up (Bauml et al. Reference Bauml, Pitschel-Walz, Volz, Engel and Kissling2007). In a recent systematic review, of short-term (<10 weeks) psychoeducation programmes for people with major mental health problems, Zhao et al. (Reference Zhao, Sampson, Xia and Jayaram2015) suggest that although the scientific quality of studies are low, due to sample size and a lack of quality randomised control trials, the available evidence suggests that programmes improve adherence to treatment in the short term, and decrease the risk of relapse in the medium term. Sin & Norman (Reference Sin and Norman2013), in their mixed method systematic review of psychoeducation interventions, reported improving coping and problem solving among family members. The impact of programmes on the subjective distress of carers, however, is less clear cut, with Yesufu-Udechuku et al. (Reference Yesufu-Udechuku, Harrison, Mayo-Wilson, Young, Woodhams, Shiers, Kuipers and Kendall2015) finding a positive outcome on subjective distress from the studies included in their review, and Sin & Norman (Reference Sin and Norman2013) finding no impact on sense of burden and the subjective distress of carers.

Positive outcomes reported from peer interventions for service users included increased hopefulness (Pickett et al. Reference Pickett-Schenk, Lippincott, Bennett and Steigman2010), increased awareness of early warning signs and symptom triggers (Druss et al. Reference Druss, Zhao, von Esenwein, Boma, Fricks, Jenkins-Tucker, Sterling, DiClemente and Lorig2010) improved self-advocacy, empowerment and recovery (Barber et al. Reference Barber, Rosenheck, Armstrong and Resnick2008; Resnick & Rosenheck, Reference Resnick and Rosenheck2008). Similarly, positive outcomes have been found in evaluations of peer-led education for family members, which have reported improved caregiver satisfaction as well as increased knowledge of mental illness, the mental health system and self-care (Dixon et al. Reference Dixon, Lucksted, Stewart, Burland, Brown, Postrado, McGuire and Hoffman2004; Pickett-Schenk et al. Reference Pickett-Schenk, Bennett, Steigman, Cook, Lippincott, Villagracia and Grey2006; Pickett-Schenk et al. Reference Pickett, Diehl, Steigman, Prater, Fox and Cook2008; Duckworth & Halpern, Reference Duckworth and Halpern2014).

While co-facilitation appeared to be a developing trend within some programmes, in all cases, both facilitators were either two family members or two service users (Rummel et al. Reference Rummel, Hansen, Helbig, Pitschel-Walz and Kissling2005; Pickett-Schenk et al. Reference Pickett, Diehl, Steigman, Prater, Fox and Cook2008; Druss et al. Reference Druss, Zhao, von Esenwein, Boma, Fricks, Jenkins-Tucker, Sterling, DiClemente and Lorig2010). At the time of commencement of EOLAS, despite a comprehensive search of peer-reviewed published works indexed in the databases CINAHL, Medline, PsychInfo, PubMed, Wiley, Academic Search Complete, ProQuest Nursing & Allied Health Source as well as the Social Science and Medicine journal, the authors were unable to identify any similar collaborative peer-clinician programme described in the literature. Based on the belief that a combined approach to the delivery of educational interventions was the way forward, the EOLAS programme was designed to be delivered as a co-facilitated programme; with service users and family members bringing their wealth of personal knowledge and experience of living with mental health issues, and clinicians contributing their professional knowledge and expertise.

Methodology

From the outset, a participative philosophy of collaboration, underpinned by critical inquiry, and the principles of participatory action research (PAR) informed all aspects of the evaluation design (Coghlan & Brannick, Reference Coghlan and Brannick2005). PAR focusses on doing research ‘with’ people as opposed to ‘on’ people, and attempts to bring about positive social change by focussing on the perspectives of groups who have been denied the opportunity to inform policies and services that affect them (Stringer, Reference Stringer1999; Kemmis & McTaggart, Reference Kemmis and McTaggart2005). Emphasis within PAR is on fostering an ethos of self-determination, and co-creating and co-translating new knowledge into action for change (Park et al. Reference Park, Zafran, Stewart, Salsberg, Carolyn Ells, Rouleau, Estein and Valente2014). Hence, the action research group involved service users, family members, clinicians from a range of disciplines (medicine, nursing, social work and psychology) within the Kildare/West Wicklow Mental Health Service, representatives from Shine, Irish Advocacy Network, Kildare Youth Services and academics with a background in mental health (nursing and psychology). The project was co-ordinated by a steering group comprised of representatives from all the stakeholder groups involved. The core values were agreed by the group at the outset and were embedded in the ethos of SUPPORT: Support, Understanding, Partnership, Participation, Openness, Respect and Trust. These core values guided the process throughout. In addition to assisting the steering group with the day-to-day aspects of the project, a number of subcommittees were formed and two project workers were employed on a part-time basis, with responsibility for various aspects of project development, design, recruitment and roll out. The pilot phase of the programme was funded through a grant from GENIO, a philanthropic foundation one of whose aims is to promote improvement in the quality of life for people with mental health difficulties in Ireland.

Ethical issues

Research in mental health can be fraught with challenges, ranging from difficulties in recruitment to a view that mental health users of services and family members are too ‘vulnerable’ to participate fully in research (Holland, Reference Holland2007; Witham et al. Reference Wittmann and Keshavan2015). Consequently, priority was given to maintaining the highest standards of information giving, protection and support of participants. Ethical approval for data collection during the EOLAS programme development and the subsequent evaluation was given by the ethics committee within the health service and also by the ethics committee of the university where the evaluation team was based. The rights and dignity of participants were respected throughout by adherence to models of good practice related to recruitment, voluntary inclusion, informed consent, privacy, confidentiality and withdrawal without prejudice. Consent was viewed as an ongoing process, which required negotiation throughout all aspects of the study. Return of the completed questionnaires indicated consent. All participants signed a written consent form before interview, consenting to be interviewed and tape-recorded. Participants were reassured that information that might identify them would not be used in any presentation or publication resulting from the study.

Data collection and analysis

In keeping with the PAR principles of collaboration, from the beginning the EOLAS team sought to embody the core principles of respectful consultation and participatory partnership. To achieve this focus groups were held with service users and family members to elicit their views on content and format of programmes. Focus groups were considered appropriate as not only do they enable an exploration of peoples’ views but they allow the researcher to identify any similarities or differences of opinion within and across groups (Kitzinger, Reference Kitzinger1995; Holstein & Gubrium, Reference Holstein and Gubrium2003).

Participants were recruited individually, through direct invitation by their respective key clinician (usually a key nurse), and also through posters displayed in public areas in mental health facilities throughout Kildare/West Wicklow Mental Health Services. The Kildare/West Wicklow Mental Health Service serves a diverse area, with most of the population residing in the commuter towns closest to Dublin, but it also includes a large rural hinterland. The total population served was over 220 000 (2011 census). The service to adults with mental health difficulties in the area is provided by four mental health sectors and related community teams, with inpatient care being provided in the mental health unit in Naas General Hospital. To access clinicians’ views on the feasibility and challenges of the project and to generate ‘buy in’ clinicians were also invited to attend group discussions, and consultation meetings were held with multidisciplinary teams.

Focus groups were conducted in seven different locations throughout County Kildare; 58 people participated in seven focus groups: 30 service users, 21 family members and seven clinicians. In addition, discussion was held with six multidisciplinary clinical teams. During the focus groups, participants were facilitated to identify issues that they considered priority for inclusion in the programme. They were also asked for views on format, duration and timing.

Two project workers conducted each focus group or attended team meetings (one facilitated the discussion while the other acted as note taker) and they completed a thematic analysis of the data informed by the approach described by Braun & Clarke (Reference Braun and Clarke2006). Following preliminary analyses to identify what education and support information each group desired, emerging topics were feedback to members of the steering group where the findings were discussed and topics for inclusion in the programmes prioritised and finalised.

Findings: service user and family members

Detailed analysis of the focus groups indicated common requirements for education and information across both the service user and family groups; however, each had a very different emphasis and focus.

Service user participants shared accounts of their experiences that were at times distressing and evoked feelings of loss, grief, anger, trauma, frustration and powerlessness. Similar to other studies (Wittmann & Keshavan, Reference Witham, Beddow and Haigh2007; Mauritz & van Meijel, Reference Mauritz and van Meijel2009), the grief expressed by the service users appeared to be associated with their distress and diagnosis. They spoke of experiencing shame and regret, and grieved the negative impact that their mental health problem had on their life and relationships. In addition, they reported having few outlets where they could discuss their emotions and deal with their problems. Counselling was either too difficult to access, too expensive or had a long waiting list. They were frustrated with the perceived overemphasis on medication within services and the absence of information on other therapeutic interventions. In addition, they expressed frustration at the lack of consultation and involvement in their medication regimen, as the following quotes illustrate:

As a result, they expressed a desire for information on mental illness/distress, specifically on

• ∙ recovery,

• ∙ relapse prevention skills,

• ∙ legal issues,

• ∙ causes of mental health problems,

• ∙ techniques for how to deal with symptoms,

• ∙ medication and related issues, for example, side-effects,

• ∙ non-medication-based therapies, for example, psychotherapy,

• ∙ low self-esteem,

• ∙ stigma and negative attitudes from others.

They also wanted to hear personal recovery stories and learn more about peer supports. In addition, they wanted help to develop their life skills, particularly in the area of relationships, education and employment, and wanted information to help them to ‘get on with things and lead life’. While service users were emotional about their experiences and expressed frustration at the lack of information and their lack of involvement in their own care, they were focussed on recovery and moving forward in a positive way, seeing EOLAS as an opportunity for change.

Family members also spoke of their acute sense of grief and loss. The family members were grieving the loss of their relative who they felt had, metaphorically, ‘died’. Family members’ sense of grief and loss has resonance with other studies that suggest family grief and sorrow stems from the myriad of losses incurred, including loss of hopes, dreams, relationships and potential (Richardson et al. Reference Richardson, Cobham, Murray and McDermott2011; McAuliffe et al. Reference McAuliffe, O’Connor and Meagher2014). In McAuliffe et al.’s (Reference McAuliffe, O’Connor and Meagher2014: 148) Irish study the grief was likened to a ‘psychological tsunami’.

In addition, to grief and loss family members felt ‘stuck, caught, lost’ and ‘left out’ by the mental health system. They were angry with a system that did not consult them around decisions made about the care of their family member or provide them with information that might help them in their caring role. The stress of caring and the lack of support and information from the mental health services as well as their perceived exclusion from decision-making contributed to their feelings of disempowerment, marginalisation, anger and powerlessness, as illustrated by the following quotes:

Family members specifically wanted to be given information on mental illness, treatment approaches, how to access mental health services in times of crisis, and strategies for responding to their family member when they were distressed, such as when hearing voices or expressing anger. The family group also requested skills to enable them to ask questions of clinicians and deal with their own distress, as well as seeking input from a psychiatrist during the programme.

Findings: clinicians

During the focus group and meetings with multidisciplinary teams, clinicians were informed about the project aims, ethos and process. Overall, clinicians were very positive about the proposed project. The idea of an education programme was especially welcomed by community mental health nurses, social workers and occupational therapists who were of the view that the programme had the potential to provide much needed information to service users and their families, strengthen communication and enable participants to develop confidence to engage with their mental health team in a proactive manner. During these consultations clinicians also made a number of suggestions, including the importance of having written information on common clinical terms, questions to ask about illness or medication and descriptions of the role of each team member for participants. Participants noted that information on these issues might help to ‘demystify the language and process’ for users and family members.

Some concerns were expressed by clinicians around issues such as: difficulties for rural participants getting to venues, recruiting participants who may be reluctant to attend any group, and the appropriateness of having service users with different diagnoses within the same group. The latter concern related to a belief that people with a diagnosis of bipolar disorder tend to be ‘higher functioning’ than those with a diagnosis of schizophrenia, and a perception that a ‘hierarchy of stigma’ existed between these groups, which might deter people with a diagnosis of bipolar disorder, or their families attending a group that included people with a diagnosis of schizophrenia. All of these issues were taken on board by the group and strategies put in place to minimise potential impact. Clinicians also reiterated the need for training in co-facilitation skills and the need to reimburse peer facilitators for any expenses incurred.

Designing educational programmes – format and content

Two separate handbooks with information pertaining to each session were developed for service users and family members. In addition, to support facilitators and enhance consistency across programmes, facilitator handbooks were developed for each programme, which provided detailed guidance on how to introduce, facilitate and close each session. In relation to programme content, in order to accommodate the diverse needs and preferences of service users and family members, two separate programmes were developed. The contents of the handbooks were based on the findings from the focus group interviews with service users, family members and clinicians, literature on the topics identified and previous experience by members of the clinical team in auditing the education needs of service users (Gibbons et al. Reference Gibbons, Hogan and McGauran1999) and delivering education to service users. Each topic within the handbooks went through a number of iterations and was reviewed by members of the steering group before final agreement on content was reached. Deciding on the depth and breadth of each topic required consideration of how best to reflect the participant’s need with due considerations of the time constraints and resources available. Each programme was designed to be delivered over an 8-week period, and consisted of seven to eight sessions of 90-minute duration (see Table 1 for programme content).

Table 1 Content of the programmes

The majority of the published studies to date do not detail the specifics of the teaching methods employed on the programme, with the exception of the Vet-to-Vet programme (Resnick et al. Reference Resnick, Armstrong, Sperrazza, Harkness and Rosenheck2004; Barber et al. Reference Barber, Rosenheck, Armstrong and Resnick2008; Resnick & Rosenheck, Reference Resnick and Rosenheck2008), which used a non-prescriptive, discussion format. Although the EOLAS programme was designed to primarily focus on disseminating information and, consequently, was to be instructional in nature, when selecting facilitation strategies emphasis was placed on strategies that would create a mutually co-operative adult learning environment and adhere to the values of voluntary participation, mutual respect, a collaborative spirit, action, critical reflection and self-direction (Knowles, Reference Knowles1996; Brookfield, Reference Brookfield1988; Knowles et al. Reference Knowles, Holton and Swanson2005). Such an approach would enable participants to feel more empowered in understanding their mental health difficulties, in being more involved in decision-making and to be more confident in their subsequent dealings with their mental health team. Each session comprised input from the facilitators, learning activities, opportunity for questions and answers, and some personal sharing and reflection. In addition, a number of other people from the local mental health service (such as consultant psychiatrists, social workers and psychologists) were invited to provide input.

Recruitment and training of facilitators

There was no specific selection process for facilitators. Instead, an ad hoc approach was taken, with willing and available people being recruited to the role. The majority of family member and service user facilitators became involved through their participation in the focus groups, while others were approached and recruited by members of mental health teams. The clinical facilitators were volunteers from the clinical teams within the services involved, and in most cases were from the nursing discipline.

Many of the studies reported in the literature did not detail the facilitator training procedures that were undertaken (Dixon et al. Reference Dixon, Lucksted, Stewart, Burland, Brown, Postrado, McGuire and Hoffman2004; Pickett-Schenk et al. Reference Pickett-Schenk, Bennett, Steigman, Cook, Lippincott, Villagracia and Grey2006; Pickett-Schenk et al. Reference Pickett, Diehl, Steigman, Prater, Fox and Cook2008). The exception to this was Rummel et al. (Reference Rummel, Hansen, Helbig, Pitschel-Walz and Kissling2005) who described a training programme that involved two service users initially attending the education programme while observing and noting the facilitator’s skills. The second step involved attendance at four training workshops over a 2-month period, after which the two trainees facilitated several sessions together while being observed by a physician. In the absence of any guidance within the literature and in recognition of the challenges of developing co-facilitation skills, the EOLAS facilitators within the pilot programme received 2 days training in preparation for the role. The first day of training centred on facilitation skills. The second day focussed on helping the facilitators to familiarise themselves with the facilitator handbook and the programme materials (see Table 2). In total, 13 clinicians and 10 peer facilitators attended the initial training.

Table 2 Topics for facilitator training

Recruitment of participants to the programmes

Recruitment of participants to the programme took place by referral from local mental health teams. Clinical staff provided face-to-face information about the programme on an individual basis to service users and family members who were part of their case load and completed a referral form for those expressing interest in attending. At this time, potential participants were told that the programme was being evaluated but they were free to complete the programme without participating in the evaluation or research aspect. The project team believed that the involvement of clinical staff in recruiting participants would ensure that only those with a relevant mental health diagnosis were referred to the programme, and that they had previously been informed of that diagnosis. It was also thought that this procedure would ‘screen out’ any service user that might be considered too ‘vulnerable’ or ‘unwell’ to attend. Having clinical staff from the mental health teams involved also ensured that if the group facilitators were concerned about any participant, they had immediate access to support for the person. Throughout the programme, the facilitators were supported by the Assistant Director of Nursing, who acted as a point of clinical contact, advising and liaising with the relevant mental health teams if the facilitators became concerned about any participant.

Role out of the programme

The pilot programmes were delivered in four centres in the Kildare/West Wicklow Mental Health Services. To reduce perceptions that the programme was clinically focussed and clinician-led programmes ran in venues independent of the health services, such as hotels and community centres. It was hoped that these venues would be more acceptable to service users and family members and help to ‘level the playing field’ and allow the co-facilitation model to flourish. In recognition of the voluntary nature of the peer facilitator contribution to delivering the EOLAS programmes and of the costs involved, peer facilitators were paid an honorarium to help defray travel and other expenses involved in attendance at training and in the delivery of the 8-week programmes.

Profile of attendees

In total, 30 service users attended the pilot EOLAS programme across the four project areas. Of the service users who provided information, seven had attended the EOLAS focus group. Nearly three-quarters were male (n=20, 74%) and participants ranged in age from 23 to 80. Nearly half were single and 30% were either married or had a partner. Approximately equal percentages had completed third level, upper secondary level or lower secondary level. The majority of the sample reported that they had received a diagnosis for their mental health issue. Of these participants, approximately half reported that they had been diagnosed with schizophrenia and an additional 28% with bipolar disorder. In total, 8% of participants had been diagnosed with schizoaffective disorder and the remaining 8% had received multiple diagnosis such as severe depression or psychotic depression. Of the 26 who provided information about their living situation, just over 60% were living with family members. About one-quarter lived alone. The greatest proportions lived in a home either they or their family owned or were paying the mortgage for. Approximately one-quarter of the participants were renting either from the local authority or privately. Participants were involved in a wide variety of daily activities.

In total, 25 family members attended the pilot programme. One-third had attended the EOLAS focus groups and over half heard about the EOLAS programme from a mental health care worker. Of those who provided information about their gender, 75% were female. Participants ranged in age from 31 to 70. Approximately three-quarters of the sample were married. In terms of education, just under half had completed third-level education. Of those who described their relationship to the person with mental health difficulties, the majority were parents (40%), partners (30%) or siblings (25%). The majority of the sample were aware that their family member had received a specific diagnosis (most commonly schizophrenia).

Evaluation

In keeping with the PAR ethos, the evaluation method was a sequential mixed method design, involving the collection of both quantitative and qualitative data. Data were collected using pre- and post-programme questionnaires followed by an integrated qualitative component to explore participants’, and facilitators’ experiences and views of the programme. By adopting a mixed methods approach within this evaluation and through integrating more qualitative approaches, it was anticipated that this evaluation would enable a comprehensive perspective on the programme to emerge, complementing the existing literature. It was also hoped that the flexibility of the interview would shed light on unexplored or previously unexamined perspectives, such as the challenges of peer-clinician co-facilitation, the value of peer involvement and of programme handbooks.