Psychotic illnesses and young women s experiences: a systematic review protocol of qualitative research

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1 Psychotic illnesses and young women s experiences: a systematic review protocol of qualitative research Wanda M Chernomas 1 Kendra L Rieger 2 Jane V Karpa 3 Diana E Clarke 4 Shelley Marchinko 1 Lisa Demczuk 5 1. College of Nursing, Faculty of Health Sciences, University of Manitoba, Canada 2. College of Nursing, Faculty of Health Sciences, University of Manitoba; Red River College, Canada 3. Applied Health Sciences, University of Manitoba; Department of Psychiatric Nursing, Faculty of Health Studies, Brandon University, Canada 4. College of Nursing, Faculty of Health Sciences, University of Manitoba; Manitoba Centre for Nursing and Health Research; Health Sciences Mental Health Program, Canada 5. Elizabeth Dafoe Library, University of Manitoba, Canada Corresponding author: Wanda Chernomas wanda.chernomas@umanitoba.ca Centers conducting the review University of Manitoba and Queens Joanna Briggs Collaboration for Patient Safety: a Collaborating Centre of the Joanna Briggs Institute Review question/objective The aim of this systematic review is to synthesize the best available evidence on the experiences of young adult women (aged years) living with a psychotic illness. Specifically, the review question is: What are the experiences of young adult women living with a psychotic illness? doi: /jbisrir Page 79

2 Background Age and gender are important variables when considering psychosocial experiences, including perspectives of living with an illness. 1,2 Psychotic illnesses are complex, potentially chronic mental illnesses, typically first diagnosed in people who are in their late teens and early to mid-twenties. Psychotic illnesses, also referred to as schizophrenia spectrum disorders, include: schizophrenia itself (typically diagnosed after continuous signs of disturbance persist for at least six months), schizoaffective disorders (psychotic symptoms with a strong mood-related component), and other psychotic disorders such as delusional disorder and brief psychotic disorder. 3,4 The symptoms of psychosis, as a defining feature of a psychotic illness, include: delusions, hallucinations, disorganized speech and other neurocognitive impairments, behavioral manifestations, and reduced motivation. 4 Psychosis can also accompany other mental illnesses, such as mood disorders, or result from the substance use. 4 Although symptoms tend to fluctuate, within the context of schizophrenia spectrum disorders 4,5 the impact on the person s life can be quite pervasive and extend for years after a diagnosis. 6 It is known that psychotic illnesses, sometimes referred to simply as psychoses, 7 affect young men and women differently both biologically and psychosocially, with young women experiencing a different constellation of symptoms, 8 responding differently to antipsychotic medications 9.10 and appraising their life circumstances differently when compared to men. 11 However in literature that examines experiences of young people with psychosis, the specific needs of young women are usually not presented separately. The trend in this body of research is to include samples with young men alone 12,13 or young people with data from the young women s perspectives not typically analyzed separately Hence, findings are usually discussed with implications for young people generically. The same trend exists in the growing body of literature that examines early intervention programs for psychosis, where the emphasis is on illness identification and treatment and preventing impairment. 18,19 This body of literature does focus on a younger population; however, males tend to dominate, given the earlier age of onset of schizophrenia spectrum disorders in males. 20,21 Typically, issues confronting women, 22 such as reproductive health, parenting, 23 sexual victimization and domestic violence, 24 are not often addressed in research into early intervention programs When gender differences are examined in research into early intervention programs, women tend to present better than men with a psychotic illness, on variables such as functioning, frequency of in-patient hospital admissions and compliance with treatment. 28,29 In this regard, the tendency might be to perceive women as being less in need of services and programs because of their abilities and relative lack of disability when compared to men with a psychotic illness. This perception may result in women s unique experiences being overlooked and the subsequent inadequate development of intervention programs for young women. In her pioneering and ongoing work, Seeman wrote that men and women with schizophrenia require gender specific programs and services However, just how well this understanding has been incorporated into practice and health care systems is unclear. When women have been studied separately from men they have described how the stigma of having a mental illness affected their social and intimate relationships, their family relationships, their ability to parent and their opportunities for employment Women s experiences with violence and abuse are reflected in their symptoms and contribute to feeling stigmatized. 24 Women with schizophrenia are also at risk for unwanted pregnancies, relapse of symptoms in the postpartum period and for losing custody of their children. 31 These women describe particular struggles with the side effects of the medications doi: /jbisrir Page 80

3 designed to treat psychotic illnesses, as the side effects are sometimes worse than the symptoms. 33 The bulk of the sample in these studies tends to be women in their 40s and 50s who have been living with the psychotic illness for some time. One outcome of previous research involving the investigators is the establishment of a women's program at the Manitoba Schizophrenia Society in which women s information and support needs are the focus. 34 Although the research that supported the development of the women s program included women across the lifespan, few young adult women participated in the study. Questions that arose from that work were in regards to younger women s experiences how similar or different they might be from those of women living with a psychotic illness for a longer period of time and receiving a diagnosis at a different historical juncture. 33,34 A meta-synthesis of qualitative studies has characterized the experience of psychosis as: living with significant losses, including a loss of self, loss of relationships, and difficulties functioning in jobs or at school. 6 The resulting need to re-establish the self and find a way to make a satisfying life is important in recovery and living with symptoms. While women are fairly equally included in these qualitative studies, the dominant perspective in such understanding tends to represent more chronic patients, as opposed to first episode patients with the mean participant age of about As noted above, in literature that does address a younger population, males tend to dominate samples given the earlier age of onset of psychosis and the focus of early intervention programs. However, an issue is ensuring the perspectives, experiences and health care needs of young women are understood so that services and programs can be structured and delivered to meet their unique health care and social service needs. This understanding is particularly important given the young adulthood age of onset and potential for affecting significant aspects of life. In order to confirm that no other systematic review has been published about young women s experiences with a psychotic illness as defined above, a preliminary literature search was conducted. The following electronic databases were searched and no current or planned review was found about this topic: Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports, the Cochrane Library, PROSPERO, CINAHL, PubMed, and Scopus. Grey literature was also searched; however no systematic review addressing young women and psychosis as defined herein was located. A systematic review that focuses on young women and psychotic illness can contribute to understanding the experiences of this group, including the health care and social service needs, in order to facilitate and support recovery. Keywords young women; psychosis; schizophrenia; qualitative studies; serious mental illness Inclusion criteria Types of participants This review will consider studies that include young women between 18 and 35 years of age, who are living with a psychotic illness as self-reported or determined by scales reflecting diagnostic criteria. Types of intervention(s)/phenomena of interest The phenomenon of interest for this review is the experience of living with a psychotic illness as a woman aged in the community. doi: /jbisrir Page 81

4 Psychotic illness will include schizophrenia spectrum disorders: schizophrenia, schizoaffective disorder, delusional disorder, brief psychotic disorder, psychosis not specified and schizophreniform disorder. Studies that address serious mental illness or psychosis and include women with schizophrenia spectrum disorders in the sample will be included. Studies that include psychotic illness with other mental health or chronic illnesses or substance abuse will be included. Years of living with a psychotic illness will not be a criterion for inclusion in this study. Experiences will be defined broadly and be inclusive of perceptions and experiences with health and social systems. Young women will be defined as women aged years of age (inclusive). Studies that focus exclusively on the post-partum period will be excluded from this review. Types of studies This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Search strategy The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English will be considered for inclusion in this review. Non-English studies will be excluded however, to obtain a broader picture and note international trends, we will tally (but not translate) the non-english literature. Studies published from 1995 untilmarch 2014 will be considered for inclusion in this review. This time period was selected in order to focus on published studies that coincide with increasing emphasis and public discourse on recovery and related concepts when considering living with a serious mental illness. The databases to be searched include: CINAHL MEDLINE PsycINFO Embase Web of Science Scopus Women s Studies International Sociological Abstracts Social Services Abstracts Social Work Abstracts ProQuest Dissertations & Theses A&I The search for unpublished studies will include: doi: /jbisrir Page 82

5 Conference proceedings, dissertations, grey literature and the websites of relevant organizations. Initial keywords to be used will be: Initial keywords will be a combination of Medical Subject Headings (MeSH) and keywords, some of which will be truncated (*) to account for variant endings. The keywords will reflect the 3 main concepts in the question. Terms related to psychosis: Schizophrenia and Disorders with Psychotic Features [MeSH] OR psychosis OR psychoses OR psychotic OR schizophrenia OR schizoaffective OR hallucinate* OR delusion* Terms related to experiences: Mental Health Services [MeSH] OR experience* OR perception* OR perspective* OR relationship* OR service* OR program* OR needs* OR expectations* Terms related to women: Sex Factors [MeSH] OR women OR gender OR female Assessment of methodological quality Once the search for studies is complete, duplicates will be removed. The primary and secondary reviewers will examine citation titles and abstracts and use the inclusion and exclusion criteria to select those for critical appraisal. The full-text articles of the studies selected for inclusion will be retrieved. Any studies that on second review do not meet the inclusion criteria will be discarded. Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer. Data collection Data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives. Data synthesis Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form. doi: /jbisrir Page 83

6 Conflicts of interest There are no conflicts of interest to declare. Acknowledgements We acknowledge the Manitoba Centre for Nursing and Health Research for their support of this work. doi: /jbisrir Page 84

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9 33. Chernomas W, Clarke D, Chisholm F. The perspectives of women living with schizophrenia. Psychiatr Serv. 2000;51(12): Clarke D, Chernomas W, Chisholm F. Addressing the needs of women living with schizophrenia. Can Nurse. 2001;97(9): Chernomas WM, Clarke DE, Marchinko S. Relationship-based needs of women living with serious mental illness. Issues Ment Health Nurs. 2008;29(5): doi: /jbisrir Page 87

10 Appendix I: Appraisal instruments QARI appraisal instrument Insert page break doi: /jbisrir Page 88

11 Appendix II: Data extraction instruments QARI data extraction instrument Insert page break doi: /jbisrir Page 89

12 doi: /jbisrir Page 90