This research was approved by the Massey University Regional Human Ethics Committee, and was found to be consistent with the principles outlined in an internationally recognized standard for the ethical conduct of human research (citation number 02/10). Following this approval, the National offices of Schizophrenia Fellowship (S.F.) and Richmond Fellowship (R.F.) were approached by the author to discuss the present research. Both agencies gave permission for the author to approach individual branches of their organisations in New Zealand to ascertain whether they were interested in being involved in the study. Once a branch agreed, key-workers employed in each agency branch then approached members of the organization and invited them to voluntarily participate if they met the criteria outlined in the participants section.
Key-workers at Richmond Fellowship6 branches around New Zealand who were trained by the author on the contact and assessment protocol contacted clients (those diagnosed with schizophrenia) who met the predetermined inclusion criteria and who were living or in close contact (20 hours or more a week) with a key family member for at least 3 months prior to the study. They discussed the study, explained what commitments would be involved in participating and what possible benefits they might obtain from participating. Once clients confirmed a willingness to participate in the study, permission was then obtained to contact the nominated key family member of each client. Key-workers then discussed the study with the family members, explained what would be involved in participating, and they were also invited to participate. Information sheets (Appendix 1) were disseminated to clients and family members as well as consent forms (Appendix 2) to enable the family to take time to consider and discuss their potential involvement. The key-worker later followed up with the participants to confirm continuing interest and obtain informed consent of both a client and corresponding key family member were committed. Contact details for the researcher were provided for any further questions participants may have had.
Richmond Fellowship and Schizophrenia Fellowship have a different focus in that Richmond Fellowship predominantly supports clients in a residential setting and Schizophrenia Fellowship as an agency of support and advocacy, predominantly supports family members. For
this reason, a slightly different procedure was utilised for Schizophrenia Fellowship in recruiting participants.
Fieldworkers at Schizophrenia Fellowship7 branches around New Zealand contacted family members who met the predetermined inclusion criteria and who were living or in close contact (20 hours or more a week) with a client for at least 3 months prior to the study. They discussed the study, explained what commitments would be involved in participating and what possible benefits they might obtain from participating. Once family members confirmed a willingness to participate in the study, permission was obtained to contact the client. Field workers then discussed the study with the client, explained what would be involved in participating, and invited them to participate. Information sheets (Appendix 1) were then disseminated to clients and family members as well as consent forms (Appendix2) to enable the family to take time to consider and discuss their potential involvement. The fieldworker then followed up with the participants to confirm continuing interest and obtain informed consent. Contact details for the researcher were provided for any further questions participants may have had.
After obtaining informed consent from clients and family members, an appointment was made for the family member and client separately to complete the pre-test measures and further appointments were made separately to attend the education session. This separate completion and attendance was done as a result of client concerns voiced in a previous study (Moxon & Ronan, 2008) and confirmed here that they would feel “too self-conscious” or “on guard” to be able to actively participate in the education sessions if their key family member was present (discussed in more depth further in this section). Concern was also expressed by clients that the family members may judge them during the session or become embarrassed themselves which would inhibit the ability to participate freely in the session.
Based on this idea then, the actual education programme itself has two subtly but distinct versions for clients and family members (refer to the Education Programme section). For the purpose of the education session, participants were treated as either families of those with schizophrenia (family members) or as family members diagnosed with schizophrenia (clients) and were provided the appropriately corresponding education. The summary hand-out remained identical for both family members and clients.
7 During the completion of this thesis, Schizophrenia Fellowship was renamed Supporting Families as supporting the
The amount of time between pre-assessment, the education session, a follow-up phone call and post-assessment for the experimental and control group was equivalent at 7-10 days between each session. In this way, the present study was based on Barrowclough et al. (1987) and Moxon and Ronan (2008) who had a one week and 7-10 day interval between assessments, respectively. The reasons for the approximately one week interval between each session were as follows:
Family members sometimes became anxious or misunderstood the information they were exposed to either during the informed consent process or pre-test assessment. An early second appointment for assessment allowed an opportunity to discuss any confusion that had occurred.
KASI assessment was thought to be more likely to assess longer term information assimilation and retention than if it were administered immediately after the education session.
This interval after the intervention allowed family members and clients’ time to discuss the information, whether separately or together and to read the booklet.
The interval wasn’t so long that it minimised the possibility of various confounds impacting on assessment responding, including maturation, history and so forth: “The possibility of the outcome evaluation (KASI post-test) being affected by factors other than the education programme was minimised” (Barrowclough et al., 1987, p3).
The education programme itself (Moxon & Ronan, 2002) was administered by the researcher8 for the experimental group and following the control period for the wait-list control group, providing information on:
Diagnosis, Symptomology, Aetiology, Medication, and Course and Prognosis of
schizophrenia;
Practical and easy to utilize management and communication strategies designed to assist both the client and family members.
The intervention itself (Moxon & Ronan, 2008) was developed following personal correspondence with researchers Christine Vaughn, Nicholas Tarrier and Ian Falloon, and incorporated aspects of programmes by Barrowclough and Tarrier (1992), and Falloon and colleagues (Falloon, Falloon, & Lusetti, 1997; Falloon, Graham-Hole, & Fadden, 1997).
Additional limited information drawn from the literature about expressed emotion was included, with three features incorporated: (i) an overview and definition in lay terms, (ii) information about the vulnerability a person, particularly those diagnosed with schizophrenia might possess; (iii) practical advice on how to help maintain a low stress and stimulus environment in the home for the entire family unit’s benefit. The programme was also individualised for family members based on their pre-test KASI responses.
Participants’ sense of safety and comfort during the intervention was of prime importance. Each participant had the choice of whether they attended this session within their own homes (n = 49),or in a nominated venue that was familiar to them (the Schizophrenia Fellowship; n = 1). The initial session lasted approximately 1 hour and 15 minutes for clients and 2 hours for family members depending on the amount of questions asked. If more than one family member attended the session (n = 6 families), the education was conducted with them together, as it was for the one family with two clients participating, although each participant completed the measures separately. The family member with two clients participating completed two sets of measures – one for each client participating. The reasoning for this was that the two clients (who were sisters) each had a different history, different symptomology and different medications. The same process was followed for the families where two family members were participating with the one client, in that each family member completed a separate set of measures regarding their knowledge, EE status and burden of care.
Based on feedback from a previous study (Moxon & Ronan, 2008), clients were given the choice of whether they had a support person present and whether they attended the session before or after their key family member. In all instances, clients wanted to receive the information separately from their family member and no clients brought a support person with them. All clients also chose to receive the information before their key family member did and subsequently received the education earlier on the same day as their family member. No family member chose to have a support person present, but three family requests were granted to have another family member present for the education session only and not participate in the actual study (i.e., a sister and two fathers of the diagnosed) who was not participating in the education programme but who wanted to learn more about the disorder. Before this occurred, permission was sought and obtained from all participants in the family unit.
8 Training on delivering this manualised intervention was provided for the previous study (Moxon, 1998; Moxon &
Ronan, 2008) by a senior clinical psychologist with many years experience delivering manualised interventions as well as services to clients with schizophrenia and family members.
All participants took the education booklet away with them and two clients requested and were given extra copies that they wanted to send to other family members who had not participated in the study.
Knowing that active involvement has been shown to predict benefits in psychoeducational intervention programmes (Bergin & Garfield, 1994; Falloon et al., 1993; Lambert, 2004), questions from all participants were encouraged with the belief that the more interested and involved participants were in the education, the more knowledge would be retained by them. Information was presented in 4-5 minute segments followed by a brief and time-limited opportunity for participants to discuss the information relayed and how it may or may not relate to their own experiences, as well as ask any questions they may have as related to the information. Social reinforcement such as encouragement, supportive body language and positive attention to points raised by participants was provided to encourage continued involvement. Participants were encouraged to summarize their understanding of the key points at the end of each segment. In the event of misunderstanding of key points, clarification was provided. It was kept in mind throughout the sessions that the purpose of this study was not to conduct an intervention or family therapy per se. Rather, the manual and its application were designed to provide psychoeducation-based information (Moxon & Ronan, 2002).