This article describes an innovative intervention based on narrative and life review therapy that is tailored to people with intellectual disability (ID) and psychiatric problems. The current study provides a first evaluation of the intervention. A symptom checklist (SCL-90) was used in a pre- and post-follow-up design, and a qualitative evaluation of the intervention was carried out with 25 participants. Results showed large changes in psychiatric symptoms, in particular on depression, anxiety, obsessive-compulsive disorder, and interpersonal sensitivity. Participants were mainly positive in their general explicit evaluations of the therapy as well as on personal learning points, intervention-specific, group-related, and therapist-related aspects. It is concluded that the intervention is promising for the treatment of people with ID and psychiatric complaints.
Behavioral problems of people with intellectual disability (ID) have long been interpreted as signs of intellectual impairments, but recent evidence shows that they need to be distinguished as psychiatric problems (Došen, 2014). People with ID have a high chance of developing psychiatric problems, up to four times as high as in the general population (Dekker, Douma, Ruiter, & de Koot, 2006; Minderaa, 2000; Stoll, Bruinsma, & Konijn, 2004; van Gennep, 2002). Treatment of psychiatric problems in this group has proven to be a difficult challenge. Caregivers for people with ID often have no expertise in treating psychiatric problems (Emerson, 2006), whereas existing treatments in mental health care were not specifically developed for people with ID (de Koning & Collin, 2007; Didden, 2006). For example, people do not always profit from protocols based on cognitive behavioral therapy, as it remains difficult for them to distinguish between cognitions, feelings, and behavior (Joyce, Globe, & Moody, 2006; Sams, Collins, & Reynolds, 2006; Sturmey, 2006). Scholars have argued that more person-centered interventions are necessary in working with persons with ID (Abma, 1998; Meininger, 2005). We consider a combination of narrative and life review therapy promising in this respect, because these approaches build on the unique and personal life story of participants.
This article introduces a life story intervention that was specifically developed for people with the double jeopardy of ID and psychiatric problems. In the introduction, we provide a short overview of narrative therapy and life review therapy and describe some applications for people with ID. In the empirical study, we conducted a first evaluation of the new, tailored intervention, using a pretest- and posttest-follow-up design as well as a qualitative evaluation by participants.
Over the past 25 years the study of storytelling has become an established field in personality psychology (McAdams, 2008). Narrative psychologists have shown that narrating a story of one's life is a socially and culturally embedded process that serves to provide life with a sense of purpose and unity, and thereby to create a narrative identity (McAdams & McLean, 2013).
Insights from narrative psychology have been applied in narrative therapy (White & Epston, 1990). The basic idea is that clients come to therapy with stories that are saturated with problems (Payne, 2000). A strong identification with these problem-saturated stories can have a negative influence on one's mental health (Westerhof & Bohlmeijer, 2012). Being grounded in social constructionist approaches, narrative therapists see these stories not as truths, but as particular versions of the life of the client. The problem-saturated story is the story that is dominant in an individual's life, also in line with powerful dominant stories in society (e.g., those that stigmatize people with ID and/or mental illness). One of the goals of narrative therapy is to find an alternative, more satisfying or preferred story.
There are basically two processes in narrative therapy: the deconstruction of the dominant story and the reconstruction of the alternative story (Westerhof & Bohlmeijer, 2012; White & Epston, 1990). Externalizing the problem is the main process in the deconstruction of the dominant story. The goal is to see the problem no longer as self-defining, but as part of a much broader story about oneself and one's life. A search for unique outcomes (i.e., those personal experiences that are not part of or even contradict the dominant story) provides the start for the alternative story. The alternative story is than “thickened” by searching for more details and instances in different periods of life that confirm the alternative story so as to make it more vivid and complete.
Narrative therapy has mainly been studied with small-scale qualitative approaches (Etchison & Kleist, 2000; Riessman & Speedy, 2007). Such studies have shown how persons create alternative stories by analyzing conversations in narrative therapy. For example, Lock Epston, Maisel, & de Faria (2005) studied how the modern, medical story about anorexia as a diagnostic category is replaced in narrative therapy with a counterstory that separates the problem from the person: the person is not the problem, the problem is the problem. Matos and colleagues (2009) demonstrated how unique outcomes that are the building blocks of new self-narratives play a role in therapy outcomes. Therapists play a role in developing alternative stories by providing scaffolds (Ramey, Young, & Tarulli, 2010) that are close enough to the clients' narrative to provide challenging, yet tolerable new narratives (Ribeiro, Ribeiro, Gonçalves, Horvath, & Stiles, 2013). Together, such studies provide evidence for the processes from dominant problem-saturated stories to alternative, more fulfilling stories.
Life Review Therapy
Narrative therapists make use of memories of the past when it contributes to finding unique outcomes and thickening alternative stories, but personal memories are not a systematic target in narrative therapy. It is the main goal of life review therapy, however. Life review refers to the recollection, elaboration, evaluation, and integration of memories (Westerhof, Bohlmeijer, & Webster, 2010). Although the concept of life review originates in psychogerontology, reviewing one's life is nowadays seen as a major vehicle for lifespan development (Pasupathi, Weeks, & Rice, 2006; Westerhof & Bohlmeijer, 2014). Personal memories have social functions in making ties to other persons, instrumental functions in dealing with difficult life events, as well as integrative functions in providing life with meaning (Westerhof & Bohlmeijer, 2014). These functions hold important relationships to mental health (Westerhof et al., 2010).
Life review interventions include many different target groups, activities, and contexts of implementation (Westerhof et al., 2010). They target social functions of personal memories by stimulating the recollection and sharing of positive memories that are helpful in improving mood and fostering bonding. Interventions also target coping and mastery through instrumental functions: elaborating on memories that have shown how people dealt with problems in their past. Integrative functions play a role in a more systematic evaluation and meaningful integration of both positive and negative memories from different life periods. Life review therapies may also target symptoms of mental illness by reducing generalized negative styles of remembering that have blocked further development. Life review therapies often integrate other therapeutic techniques to these ends, such as psychodynamic therapy, cognitive behavioral therapy, or narrative therapy.
The evidence for the effectiveness of life review therapy has strongly accumulated over the last decade. Several meta-analyses have shown that interventions alleviate depressive and other mental illness symptoms (Bohlmeijer, Smit, & Cuijpers, 2003; Pinquart & Forstmeier, 2012). Life review therapy is nowadays recognized as an evidence-based intervention for depression in older adults (Scogin, Welsh, Hanson, Stump, & Coates, 2005). Recent studies have shown that a combination of life review with narrative therapy is effective in alleviating symptoms of depression and anxiety in people aged 40 and older with depressive symptomatology (Korte, Bohlmeijer, Cappeliez, Smit, & Westerhof, 2012; Lamers, Bohlmeijer, Korte, & Westerhof, 2015). The use of a group-based approach brings advantages in sharing and recognizing each other's memories (Korte, Drossaert, Westerhof, & Bohlmeijer, 2014).
Story Work for People With Intellectual Disability
Several studies have used a narrative approach to provide a better understanding of the lives of people with ID (e.g., Gabel, Cohen, Kotel, & Pearson, 2013; Hamilton & Atkinson, 2009; Marshall & Tilley, 2013; McClimens, 2002; Roberts & Hamilton, 2010; Van Hove et al., 2012; Welsby & Horsfall, 2011). These studies have shown the myriad of problems that people with ID encounter in their lives, including work and leisure, institutional changes, difficult social relations, bullying, stigmatization, and abuse. At the same time, narrative studies have shown the resilience of people with ID in finding positive relations, agency, and meaning in their lives often in spite of the problematic aspects of their self-narratives.
Stories are being used in interventions for people with ID in a number of different ways. Life story books are probably the most well-known way to work with stories in this field (e.g., Moya, 2009). Recent approaches also include multisensory storytelling to people with profound intellectual and multiple disabilities (Grove, 2005; ten Brug, van der Putten, Penne, Maes, & Vlaskamp, 2012). Van Puyenbroeck and Maes (2008) have reviewed reminiscence-based interventions for older people with ID. There are also a few applications of narrative therapy for people with ID, mostly case studies (Ayland & West, 2006; Clare & Grant, 1994; Foster & Banes, 2009; Fredman, 2014; Scior & Lynggaard, 2006). Across these different uses of life story work, the goal is not only to cope with difficult personal experiences, but also to empower people with ID by strengthening their identities and social relations. However, no systematic interventions aiming at the combination of ID and psychiatric complaints were found.
As we have seen, there is a profound lack of approaches of psychiatric problems of persons with ID. Narrative therapy and life review therapy provide promising avenues for intervention as they build on the personal stories and memories and thereby search to empower clients in finding meaningful and fulfilling stories they can live by. The goal of the present article is therefore to introduce an intervention that is based on these therapies, yet being tailored to the specific target group in double jeopardy.
The current study provides a first evaluation of the intervention “Who am I?” We used a pre- and post-follow-up design in order to assess whether symptoms of mental illness changed during the intervention and whether changes remained at follow-up. In line with the goal of the intervention to empower participants, we also carried out a qualitative evaluation that addresses the experience of the intervention from the perspective of participants.
The intervention Who am I? was specifically developed for people with ID and psychiatric problems. The intervention follows principles from narrative psychology in the deconstruction and reconstruction of personal stories as well as principles from life review in the recollection, elaboration, evaluation, and integration of memories from the past. It addresses the unique life story of each participant in a group intervention for 6 to 12 participants that is led by two therapists, one of them a licensed psychologist. A structured workbook with exercises for participants is used as well as a comprehensive manual for the therapists. The intervention consists of three parts, focusing on the past, the present, and the future: “Who am I?” (9 sessions), “What am I good at?”(6 sessions), and “Where do I want to go?” (2 sessions). The intervention consists of seventeen 2-hr sessions (see Table 1). In order to reinforce the possible effects, there are two follow-up sessions of 1 hr.
Rather than adapting an existing intervention, the goal was to tailor the intervention directly to persons with ID, for example taking into account limitations in working memory (Didden, 2006) and executive functions (Janssen & Schuengel, 2006). The tailoring was based on a guideline for effective interventions for people with ID that was developed after an extensive literature review and interviews with professionals (De Wit, Moonen, & Douma, 2011). This guideline states that it is essential to focus on good diagnostics, clear communication, experience-near exercises, a simple structure, a safe and positive environment, and engagement of the social network. It should be noted that these measures sometimes involve a more structured approach than typically used in the more classical approach in narrative therapy.
As stated in the introduction, an important challenge in diagnostics is to disentangle the influences of ID and psychiatric illness in behavioral problems. Admission to the intervention is therefore built on good structural psychological diagnostics as well as clinical expertise with the possible participants. An intake session is used to discuss the eligibility of the participant for the intervention. Inclusion criteria are a verbal IQ of 60 and above, a minimal level of self-reflection and insight, as well as willingness to reflect on the past, to share personal experiences, to develop a relation with the therapist and the other participants, to attend each session, and to do homework assignments. Exclusion criteria are being in a crisis situation, experiencing severe complaints that needed other treatment (e.g., a severe depression or psychosis), and/or prominent aggressive behaviors.
To tailor communication, the intervention and workbook are written in language that is easy to understand. Difficult words are avoided and short sentences are used. As life story work builds on verbal competencies, more specific measures were taken to support participants in putting personal experiences into words. The workbook often uses metaphors. It is illustrated to support comprehension through visual cues. The left page of the book is for photographs and/or drawings and the right page for putting experiences into words. The workbook also provides participants with schemes that may help them to attribute meaning to their experiences. The therapists regularly check whether participants understand the exercises and provide further clarification when necessary.
Measures were also taken to simplify and structure the intervention. The number of sessions was chosen so as to provide enough space and time for the individual participants to share and discuss their personal life events at a quiet pace, as well as to leave room for repetition that helps to strengthen the effects. Three different colors were used in the workbook corresponding to the three different parts of the intervention: past, present, and future. Each session has a clear structure containing theory and practice, providing opportunities for mutual exchange, individual exercises, group exercises, and relaxation exercises.
Easy, experience-near exercises are used during the sessions that help the participants in exploring their life story and attributing meaning to what happened in their lives. Exercises include guided imagery as well as games to explore one's personal qualities and values. Two boxes are symbolically filled with positive and negative memories to close the part of the intervention that focuses on the past. At the end of the intervention special attention is given to farewell: each participant gets a number of compliments from the group and receives a certificate for successfully ending the intervention.
A safe and positive environment is essential for this group intervention. The therapists help participants to express emotions, attribute words to what happened to them, and explore the meaning of their memories. The group structure provides the opportunity for mutual recognition and bonding. In line with narrative and life review therapy, the method explicitly recognizes the often many negative events that people with ID and psychiatric complaints have experienced during their lives. Yet, it also focuses on the positive: positive experiences from the past, capabilities in the present and a positive perspective on the future. This helps to motivate participants and provide them with realistic and helping stories.
Last, the social network of the participants is explicitly engaged. During the intake session a daily counselor or a family member is present. They receive information about the intervention, but are also asked to support the homework assignments, for example by providing information about childhood. At the end of the intervention, all participants present their own story about their voyage of discovery to people from their network: what they experienced, what they left behind, and what they take with them on their further journey.
Twenty-seven persons participated in three intervention groups. All participants were patients of a Dutch psychiatric hospital specialized in treating psychiatric disorders of persons with ID. The intervention was applied in three settings. The first setting consisted of an intensive treatment of patients of the Dutch psychiatric hospital during a 10-day retreat in Spain (group in Spain; n = 13). The second was in a part-time clinic during 3 months (part-time group; n = 6). The third setting involved an outpatient clinic during 8 months (outpatient group; n = 8). Twenty-five of the 27 participants (93%) also participated in the current study. There were 11 men and 14 women. Their mean age was 28 years, ranging from 19 to 48 years. The IQ varied from 60 to 90 with a median of 70. The participants had different DSM-IV-diagnoses: mood disorder, impulse disorder, posttraumatic stress disorder, and problems related to personality disorders. The three groups did not differ significantly in gender, age, IQ, or psychiatric disorders.
Participants filled out questionnaires before and after the intervention as well as at follow-up 3 months after the intervention ended. Two persons dropped out of the study at posttreatment and three more participants did not complete the questionnaires at follow-up. The qualitative evaluation was done at posttreatment.
Participants of each group filled out the Dutch version of the Symptom Checklist (SCL-90; Arrindell & Ettema, 2003) at pretreatment, posttreatment, and follow-up. The instrument measures nine different psychiatric complaints: depression, anxiety, agoraphobia, obsessive-compulsive complaints, interpersonal sensitivity, hostility, insufficiency, somatization, and sleep. Participants rate how much they were bothered by 90 different symptoms and complaints for the past week on a 5-point scale from 0 = not at all to 4 = extremely. Examples of items are headaches, crying easily, suddenly scared for no reason, feeling that other people are unfriendly or dislike you. We used the total score as the primary outcome as well as the scores on the subscales with a higher score indicating more complaints. The reliability of the instrument is similar in people with ID with mild levels of impairment as in the general population (Kellett, Beail, Newman, & Mosley, 1999). Furthermore, it has discriminant validity as community and clinical samples of people with ID with mild levels of impairment differ significantly from each other and show a clearly different case rate (Kellett et al., 1999). In order to avoid acquiescence bias, the participants filled out the SCL-90 in the presence of a pedagogical employee who was trained in psychological testing.
At posttest, directly after the intervention, participants filled out an evaluation questionnaire. All participants were able to read and write independently and used these skills in assignments during the intervention. Therapists were available for support in filling out the evaluation questionnaire when necessary. This questionnaire consisted of eight open questions about (a) the course (what participants enjoyed and not enjoyed, what they learned, what they considered important, and what more they would like to add), and (b) how they evaluated their own contribution, the therapist's explanations, and the group atmosphere and cooperation.
The Wilcoxon signed rank test (Wilcoxon, 1945) was used to analyze the differences between pre- and posttreatment as well as between pretreatment and follow-up. This non-parametric test compares whether the median scores obtained from the same sample differ significantly from each other. To assess whether differences exist according to the three settings, we carried out a Kruskal-Wallis test for independent groups to compare the median scores at each moment in time (Kruskal & Wallis, 1952).
We carried out the analyses for completers only as well as for an imputed dataset where we imputed missing values for persons who dropped out. We imputed missing data according to the last-observation-carried-forward method, which is a conservative estimate when changes are expected. We present findings from the imputed data set and mention when findings differ from those obtained using the completers only. To obtain effect sizes we used PSdep (the division of the number of positive difference scores by the total number of matched pairs; Grissom & Kim, 2012). This measure has been classified in terms of small (PSdep = .56), medium (PSdep = .64) and large (PSdep = .71) effect sizes (Grissom, 1994).
A first inspection of the answers to the evaluation questionnaire showed that some participants gave very short answers (one or a few words), whereas others gave more extended answers (whole sentences or multiple answers to a single question) that gave a more in-depth impression of their experience. Participants also varied considerably in level of abstraction and mastery of grammar and spelling, but without serious consequences for interpretation. Eighteen out of the 184 answers (23 participants provided answers to eight questions) were left out of the further analyses because they were incomprehensible, undecipherable, or idiosyncratic (e.g., referring to the “need for beer” in the group in Spain).
A content analysis was conducted on the 166 answers provided. We analyzed the answers across the eight questions of the evaluation questionnaire with one coding scheme as some answers had similar content, although they were provided on different questions. The coding scheme was developed bottom-up from the data with no preestablished categories. Based on constant comparison, answers were grouped into a single category when they had a similar meaning and new categories were developed when answers did not fit already established categories. The frequency with which particular answers were given did not play a role in making new categories, except that we grouped negative and ambivalent answers together. This open coding process resulted in 17 different categories. These categories clearly differentiated in content (e.g., general positive evaluations, I learned much, positive role of the therapist) and/or valence (e.g., positive vs. negative/ambivalent remarks about the group). Because most answers were short they could be assigned to only one category (e.g., “I enjoyed it” was coded as a positive general evaluation). However, longer or more comprehensive answers were coded with up to three categories. The coding resulted in 237 assigned codes or 1.4 codes per answer on average.
After this process of open coding, the 17 categories were clustered into five main themes: general evaluations, personal learning points, intervention-specific aspects, group-related aspects, and the role of the therapist. Each theme spans between two to six of the 17 categories, sometimes differentiating in content (five different personal learning points), sometimes in valence (general evaluation, group-related aspects, role of the therapist), sometimes in both content and valence (intervention-specific aspects).
Frequency distributions across the themes and categories were computed and chi-square tests were used to assess whether the distribution of the categories differs across the three intervention groups. For each of the categories, examples will be provided that illustrate the variation of responses within that specific category.
The results of the quantitative analyses can be found in Table 2. It can be seen that the total psychiatric complaints decreased from pre- to posttreatment and that this decrease is still significant at follow-up. The effect size (PSdep) at both posttreatment and follow-up is .76, indicating a large change (Grissom, 1994). The three groups did not differ significantly at pretreatment, posttreatment, and follow-up according to the Kruskal-Wallis test (all p > .05).
The results differ according to the nature of the psychiatric complaints: there are significant changes at posttreatment and follow-up for depression, anxiety, obsessive-compulsive complaints, interpersonal sensitivity, and hostility. There is a significant change in somatization, but only at follow-up, and a significant change in sleep problems, but only at posttreatment. There are no changes for agoraphobia and insufficiency. When analyzing the completers only, the effects at follow-up for hostility (p = .058) and somatization (p = .064) are not significant. We can conclude that the findings are most robust for depression, anxiety, obsessive-compulsive complaints, and interpersonal sensitivity.
The qualitative analyses resulted in five main themes, covering a total of 17 categories (Table 3). The first main theme is the general evaluation of the therapy (5%). There were four more specific themes: personal learning points (36%), intervention-specific aspects (27%), group-related aspects (16%) as well as therapist-related aspects (16%). Most remarks are positive (89%) whereas some are negative or ambivalent (11%). There is no significant difference in the proportions of the six themes between the three groups (χ2(8) = 11.0; p = .204), nor in the proportions of positive remarks (χ2(2) = 3.2; p = .207). As there is more variety among the participants within each group than between groups, we discuss the content of the main themes in more detail for participants of all groups together.
In their explicit general evaluations, participants evaluated the therapy positively with statements such as “ok,” “I enjoyed it,” or “good conversation.” Some participants had negative/ambivalent evaluations. One participant expressed that the therapy was “heavy/difficult,” and some participants mentioned “I am happy to have participated although it was difficult.”
The theme personal learning points refers to what participants said they have learned from the course other than intervention-specific themes which were part of the structure of the course (see next theme). Although there is quite a variety regarding what each participant individually took home from the course, a total of five main learning points could be distinguished. Learned much refers to an overarching learning point indicating that the course was valued as a learning experience: “I have learned more than I already knew.” Insights gained involves different aspects, such as “I have learned how I deal with problems”; “I have learned to look at myself”; “how rewarding it can be to make an effort for another”; and “now I know what to work on in the future.” Skills are references to mental, emotional, behavioral, and communicative behaviors such as “becoming more open,” “stand up for yourself,” and “thinking of nice things instead of the anger.” Discovery of own strength refers to experiences of self-enhancement or empowerment, which are often expressed in the form of a process evaluation: “I have learned that I do have good qualities after all,” “not to walk away in less comfortable situations,” and “to be able to say to myself this am I.” Trust, finally, involves either gaining trust in self or others “I feel more self-confident,” and “I gained trust in people.”
The intervention-specific theme consisted of evaluations of parts of the course, notably the temporal structure of the intervention (past, present, future). Utterances headed under this theme are variously descriptive, explicitly evaluative, and implicitly evaluative. References to the past (29) outweigh references to present (2) and future (10). The past is described in general terms such as “leaving the past behind,” “things you forgot that came up again,” and “I enjoyed telling stories about my father and mother,” as well as with regard to specific violent experiences such as “abuse,” “rape,” or “incest.” The only references to the present were about the focus on current, not further specified problems “(I enjoyed talking about) my problems.” References to the future include “the future,” “perspective on the future,” and “Now I know how to proceed.” Whereas the future and present are only mentioned in a positive manner, the past also received limited negative and mixed appraisals, “before the training I had to think about it always…now it becomes less.” A nontemporal category other intervention parts contained incidental positive references to particular parts of the structure of the intervention: “personal plan,” “life-phase,” “personal theme,” and “I threw away boxes with the past. And when I'm down I look in the little box with positive and then I feel better.” Last, participants in the group who received their intervention in Spain made many positive remarks regarding the physical and mental space, such as the “beautiful house,” “the possibilities for relaxation,” “time for yourself,” and “nice activities such as walks.”
The group related theme refers to advantages and disadvantages of working in a group and group dynamics. Group aspects which are evaluated as positive (good, pleasant, important) are “it was cosy even when it was difficult,” “beautiful memories of people,” “togetherness,” “a lot of support (when I was angry or sad),” “nice to be among people,” and “making friends.” Sometimes specific names are mentioned of people with whom one became especially close. Although less prominent, negative experiences with the group are also mentioned which sometimes give the impression of unsafety, such as the existence of “arguments,” “annoyances,” “remarks about sex,” and “gossiping.” Incidentally, specific group members are mentioned who were especially troublesome or bullies. Some participants had an ambivalent group experience as something they needed “getting used to.”
Overall, the role of the therapist theme is evaluated positively as “good,” “very good,” “clear instructions,” “nice,” “they helped me well, thanx,” and “I'm very grateful for all the compliments I received this week.” There is also room for improvement, in particular, guides have to be careful with “(not) too much information,” or “(not) going too fast,” “providing structure,” “keeping promises,” “maintaining rules,” and “not shielding some people.”
This article described a life story intervention for persons with ID who also suffer from psychiatric disorders. The intervention uses methods from narrative therapy and life review therapy that have been particularly tailored to this specific group, using explicit guidelines for developing effective interventions for people with ID (De Wit et al., 2011). The quantitative findings show that there is a large change in psychiatric complaints after the treatment that is maintained at follow-up, in particular for depression, anxiety, obsessive-compulsive complaints, and interpersonal sensitivity. The qualitative analysis showed that participants across all three settings experienced the intervention mostly in a positive way, although the process was not always easy and there is some room for improvement. Interestingly, we did not find significant differences between the three groups in the psychiatric complaints at all three measurement points. We also didn't find significant differences in the themes and evaluations of the groups in the three different settings.
Large changes were found for psychiatric complaints. The finding that this pertains in particular to symptoms of depression matches previous findings in meta-analyses of life review therapy (Bohlmeijer et al., 2003; Pinquart & Forstmeier, 2012). Effects on depressive symptoms and anxiety symptoms were also found in a study on an intervention that also combined narrative therapy and life review therapy for older people (Korte et al., 2012). The effects on interpersonal sensitivity might partly match previous findings on self-esteem (Pinquart & Forstmeier, 2012) as interpersonal sensitivity addresses feelings of inadequacy and inferiority, especially in relation to other people. The effects on obsessive-compulsive disorders might be related to the fact that this measure also addresses a more general experience of cognitive performance. No clear change was found on more bodily functions as somatization and sleep, or more specific symptoms such as phobic anxiety, hostility, paranoid ideation, and psychoticism. These findings suggest that changes were found in particular for more generalized negative feelings, cognitions, and experiences.
Most participants were generally positive about the intervention and described that they had learned much from it. Given what the participants state to have learned (learned much, gained insight, gained trust, discovered strengths, improved skills), one might conclude that the intervention was successful in their eyes in finding alternative stories that empowered them in their identities and social relations. Although some participants found it difficult to look back on their lives, most participants were (in the end) positive about the life review aspect of the intervention. Taken together, these findings match the general goals of narrative person-centered interventions to empower participants (Meininger, 2006). Whereas our quantitative evaluation was focused on reducing psychiatric symptoms, these findings suggest that positive changes in empowerment are important in the experience of the participants and deserve further study in future research.
Even though we were careful to tailor the intervention to the needs of the participants, the qualitative evaluation suggested that there is room for further improvement with regard to simplification and structure as well as with regard to a safe and positive environment. Some participants commented especially on the role of the therapist for providing further simplification and structure. There were some negative comments on the group atmosphere as well, suggesting that this is also a point for further consideration and improvement.
The study has a number of limitations. There was limited statistical power to find differences between the three groups. Overall, the quantitative analysis did show significant findings, so there is no power issue for the whole study. There was no control group, so we cannot conclude whether the changes are indeed the result of the intervention. However, the pattern of findings illustrates that the intervention might have been important in achieving the changes. Changes differed for different psychiatric symptoms in a way that is consistent with earlier studies and these changes occurred during the intervention (especially during the 10-day retreat in Spain) and remained stable at follow-up. However, we still do not know which general processes (attention from a therapist, group processes) and which specific processes (narrating past, present, and future) contribute to the changes. Further research, using thorough experimental designs that can infer causality, is needed to provide more rigorous evidence. A last limitation is that the study relied on self-reports of the participants. Although acquiescence or social desirability might threaten the validity of self-reports of persons with ID, the high levels of complaints, compared to the clinical sample in the study of Kellett et al. (1999), suggests that the participants did not hesitate to admit complaints and symptoms. The findings with regard to different psychiatric symptoms also suggest that the participants clearly differentiated between these complaints and did not simply fill out the checklist in a more positive way after the intervention. Interestingly, the participants were also able to provide written answers to the open questions. Although they varied in complexity and quality, more than 90% of them were intelligible and valid answers to the questions.
Despite these limitations, the solid theoretical foundation, the person-centered focus of the intervention, the tailoring of the intervention to the target group, and the first positive evaluation suggest that the intervention provides promising avenues for the treatment of people who are in double jeopardy of ID and psychiatric complaints.
Ethical approval was obtained in accordance with Dutch law from the institutional review board of the participating psychiatric hospital as well as from the METIGG (Dutch Medical Ethics Committee for Mental Health Care).