The elicited themes, frequencies, and inter-rater reliabilities are presented in .
Elicited Themes of the Impact of NECT, Frequencies, and Inter-Rater Reliabilities
As can be seen in , NECT completers generally reported that they found the intervention to be beneficial. On the basis of entire interview, judges’ ratings of the degree of perceived helpfulness of NECT were strong: 12 participants (67%) were rated a high contribution, 4 participants (22%) were rated a medium contribution, and only 2 participants (11%) were rated a low contribution. None reported (even though asked explicitly) that NECT had an undesirable effect on them. The inter-rater reliability for this scale was 0.87 (p <0.01).
Participants attributed the following 6 domains of improvement to NECT intervention (): Experiential learning, positive change in experience of self, cognitive skills, hope, coping and emotional change. Brief quotations and excerpts (translated from Hebrew into English) were integrated into the results section for illustration purposes.
Of the participants, 94% (n = 17) referred to the positive effect of learning about mental illness and recovery and how this learning experience contributed to their feeling of being less alone and fundamentally different from other human beings. For example, one person reported: “Regular people have problems too, and there is no shame in having a mental illness. There isn’t, there is nothing to be ashamed of.” Similarly, another participant described: “I feel that there are other people, a lot of people that are like me, living with a mental illness and living alone, renting or in supported housing, working in a regular job, like ordinary people. People with ordinary lives.” Importantly, it was not only the information about mental illness, but also the effect of the experience of learning about the possibility of change which was beneficial, as described by the following participant: “Yes, it deals exclusively with mental problems that…, or mental illness and I don’t know what manic depression is or schizophrenia, and I think I have it. It focuses more on who you really are, what you are, how you can take part in the things in your life and change them.” The learning was not merely a cognitive process, but was also often accompanied by emotional relief induced by the social context in which the learning took place, as the following participant reported: “It gave me a lot of strength and understanding that there are a lot of people like me, thousands just in Israel who live like me, each one is living with it and I am not the only one with problems because of this disease and all…, it’s a disease like any disease. Because it is just like anything else… I opened up, like I said, I talked about my hardships and people helped me with their advice, and advised others about what they should do to cope with different things in life, the disease.” As evident from these excerpts, participants reported having learned myths about mental illness, and perhaps more importantly, this learning helped them reduce their internalized boundaries between “us” and “them” by normalizing their experiences and not equating mental illness with the lack of entitlement to hope for a personally meaningful life.
Positive Change in Experience of Self
Eighty-three percent (n = 15) of participants reported how participating in the group changed their perception and experience of self. Most notable were participants who perceived themselves as more confident, as evident in the following quotes: “The influence of the group was to start walking on a path, any path. I have the confidence to do whatever …I am not afraid. I used to say that if I do this, then this will happen to me, now I can walk straight forward, I am not afraid and if it doesn’t work that’s alright. There are ways to cope. That’s what I learned.” Another participant described a similar increase in sense of confidence: “I would sit with these thoughts before, there is also this option, but I wasn’t confident enough to go for it. But now I am confident and there are a lot of ways. I wasn’t confident, and now something has changed. I am confident and now I have the ability to do things.” One person described how, with the support of the group members, and some of the skills and knowledge he acquired during the group, he began to perceive himself as someone who can make positive changes in his life: “So, that was something that was a little hard in my life and I understood, with the group’s help, that I can change.”
Eighty-three percent (n = 15) reported acquiring helpful cognitive skills. One participant, for example, described this as follows: “I changed a lot in my thinking, what people think of me that, like what I ultimately think someone said about me. I said: that’s all nonsense, I pay no attention to these people, I move on, go on with my life, feel good about myself, I’m not ashamed that I have a mental illness, there is nothing to be ashamed of because of that, I am not ashamed at all, I can be in a band with normal people right now and fit in with the normal, active society, real easily because of this group.” Another participant described how she applies her newly acquired cognitive skills in everyday life, by telling herself to “think positive, think it will be alright, don’t think that it’s the end of the world or something just because you don’t feel well, nothing happened, you will get over it.”
Of the participants, 72% (n = 13) described various forms of increased sense of hope. One participant described: “Changes? I found a few changes. A person has a lot of abilities, a lot of possibilities to do things, to advance.” Similarly, another reported: “A person has the ability to change it and has to work on it” and yet another: “There were examples of people who succeeded in their life despite the illness. I can’t remember their names…so I told myself that maybe some day I will be a doctor.”
Sixty-seven percent (n = 12) described increased coping abilities. “You hear about other different ways of coping and then you learn from someone else how he copes with a certain problem. So if you encounter that problem, you know that this happened to him and he knew how to get out of it and you take those things and practice them yourself.” Another participant emphasized the important link between the group support and putting the skills into practice in “real life” situations: “We got the tools here, all the information. We have to work with it, really with it, not to leave it here, but take it with us and use it for the rest of our lives, I think. There are groups where you stay in the same class, here we take it with us for the rest of our lives and every day, we encounter those things that we learned.”
The following excerpt helps demonstrate how the combination of learning useful information and practical skills can be successfully applied in real-life situations and generate relief: “I have 3 sisters. We are 4 sisters and I am the eldest. My sisters, even though I have been sick for 18 years, refuse to accept my condition and my disease. Two are married and one lives at home with me. And they always, like if I can’t do something because I am in a bad state, they will call me lazy and spoiled. Like in different situations and when I act strangely because of my disease, they put me down. Now I learned that it was their stigma about my disease. In the group, I learned not to let their stigma of me affect me and kick in. Just to put a distance between it; to put up a barrier and not let their stigma of me affect me. And that’s a great relief. Imagine your sisters whom you see every day, and you encounter the same problems with them every day and it hurts every time. It has stopped hurting completely.”
Sixty-one percent (n = 11) reported an emotional change. In addition to the changes in perception of self, some reported feeling more open and free, as described by the following participant: “I am more open in sharing hardships and all kinds of things that I have been through. I am more confident, I trust people more. I know better now that you can be helped by others once you share, talk about your problem and work on it. And that’s something you need to do to get help and support to solve a problem you get stuck on.” An additional theme was one of a sense of being liberated, perhaps reflecting the liberating experience of change in the experience of self, as poignantly reported by the following participant: “…it opened my heart! It gave me…after every session, it gave me freedom…I felt more free, I kept waiting for Tuesday when I go…because it gave me…I would unload things also, because we talked in a group and it liberated me…mentally I mean.”
After the presentation of the central themes that emerged from the qualitative analysis of the semi-structured interviews to explore what effect participating in NECT had, we next describe the process, namely, participants’ accounts of how participating in NECT generated its effect. Participants described the therapeutic alliance and their active role in sharing, providing and receiving support, and telling and constructing stories as key processes that contributed to positive change.
- On the basis of entire interview, judges rated the degree of therapeutic alliance as strong. Twelve participants (66%) were rated as “high” therapeutic alliance, 5 participants (28%) were rated as “medium,” and only 1 participant (6%) was rated as low contribution. The inter-rater reliability for this scale was 0.89 (p < 0.01). The following quote poignantly described this: “First of all, they (the facilitators) are lovely; very human, really good fun, in terms of opening up to them and telling them about coping with a mental illness. They connected to us in terms of thought and intent; they explained real well. There was a warm and fun place to come to and share every aspect of the disorder.”
- Judges’ ratings of the active role of participants were relatively high. Seven participants (39%) were rated as “highly active,” 8 participants (44%) were rated as “medium active,” and only 5 participants (28%) were rated as “low active.” The inter-rater reliability for this scale was 0.91 (p < 0.01).
One way in which participants were active was by actively sharing. One participant described this as follows: “I found myself not afraid to talk, to open my heart and just talk. Not afraid to say what’s bothering me. Like anything that’s bothering me, if I don’t feel anything, just to say it and not to be afraid. And that I am not the only one experiencing this thing and just to talk about it.”
Considering that storytelling was an important part of the intervention, it is not surprising that the importance of talking was frequently mentioned, as reflected in one of the participants’ responses. When asked whether something she did during the group had helped her, she replied: “Talking about…, talking about life and finding solutions to different hardships. My disclosure was up to me and not…, I chose to disclose but I did it without thinking, I was going along with everything, I got carried away with it. I found myself disclosing and I don’t know how it happened.”
Naturally, disclosing is not easy and does run a risk. The profound benefits of sharing and feeling safe and accepted, however, can be experienced only through such risk taking, as described by one of the group participants: “Yes, because I thought that now the group facilitators know…, and the girls know too many details about me and they can exploit that. But I found out, in the meeting that followed, that they are all on my side and they hugged me and embraced me in a nontangible sense. And that it’s alright and that they won’t use it against me.”
The central role of sharing was made possible, to a large degree, because of peer support, which was perceived as very meaningful: “I would say it’s because there are people there who understand you and support you, and bring up sensitive and delicate issues that we wouldn’t have thought to touch on and that they were hidden deep down inside us, and here we can talk about them lightly and in a noncomplicated manner and there is company here as well. The group, it also makes you stronger.” The experience of a joint meaningful journey came across very powerfully: “I mean, nobody comes here and judges you for what’s happening to you, they bring up certain ideas and you go along with them, respond, what else was there? I don’t know; it just flowed in a fun way.”
Therefore, what comes across is how the accepting and supporting relationships between the NECT participants, along with the alliance with the facilitators, formed a powerful, safe environment, not only to learn information and skills but rather also, to share personal experiences that contributed to an emotionally profound experience.
A key process facilitating change in experience of self was not only sharing of stories but also constructing them. The ability to “use” the group members and facilitators as a supportive audience, who inquires out of curiosity, facilitates the storytelling. Storytelling, in turn, provides an opportunity to search, explore, and construct new narratives. One participant described this as follows: “I talked and talked and talked, I didn’t stop talking. And I would figure it out when I got home. I would, like I said, take all of the thoughts and feelings and I would put them in a basket and organize them, by priority, in my soul and in my head.” Several participants emphasized the process of integrating between different experiences and times: “I talked about experiences I had before I got sick and when I got sick, I told them that I used to be a singer and that I had some songs.” Another person said: “I participated in the group, like I talked about myself and what it was like before the disease and what it is like now, and what I want to do after, like later in life, in the future.” Considering the common experience of a split between the self “before” and “after” becoming ill, the opportunity to try to create integration and continuity appeared to be important, as one participant described: “Yes, the group allowed me to see some continuity in my life! That I can, umm… help myself in more practical ways.”
Finally, as it can be argued that at least 4 of the 6 identified positive changes that emerged from our analysis (experiential learning, positive change in experience of self, hope, and emotional change) could be attributed to the nonspecific factors shared by most psychotherapies, we conducted a content analysis of item number 11 of the NEII, which asks: “Did this intervention help you in a way that was different from other interventions you attended in the past?” Seventeen of the 18 (94%) mentioned at least one way in which NECT differed from other interventions they attended in the past. Almost half (n = 8) of the participants referred in various ways to the group atmosphere, a similar number mentioned the focus and topic of the intervention (self-stigma) to be different. Of the participants, one-third (n = 6) referred to the tools they had acquired, and specifically to cognitive skills, and a little less than one-third (n = 5) mentioned the exploration and changes in perception of self and others as what was different about this intervention compared with others in which they had participated. Thus, although it seems that the overall atmosphere or tone of the group represents a specific factor which contributed to gains, 3 other specific factors emerged as relevant to outcome. The combined focus on stigma, cognition, and self-reflection may have enabled persons to not only identify mal-adaptive ways that they were seeing their lives but also to replace them with new views they had authored. Possible here is that participants were able to create their own counter response to a life defined by stigma and not just replace a view of self as “dangerous,” for instance, with a global and impersonal view of self as “not dangerous” or any other “canned” optimistic account offered by well-meaning group leaders. Importantly it is unknown though the extent to which these factors interact or effect outcome independently of one another. It is also unknown whether the atmosphere of the NECT groups significantly differed from the atmosphere in other effective therapies and thus was not entirely a general factor.