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

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 18-35 years) living with a psychotic illness. Specifically, the review question is: What are the experiences of young adult women living with a psychotic illness? 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 disorders4,5 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 alone12,13 or “young people” with data from the young women's perspectives not typically analyzed separately. 14–17 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. 25–27 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.30–32 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.33–35 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 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 35. 6 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.

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