Journal of Psychosocial Nursing and Mental Health Services

CNE Article 

First-Episode Psychosis from the Perspective of Family Members

Amanda Heloisa Santana da Silva; Kelly Graziani Giacchero Vedana, PhD; Larissa de Souza Tressoldi, MSc; Isabela dos Santos Martin, MSc; Clarissa Mendonça Corradi-Webster, PhD; Edilaine Cristina da Silva Gherardi-Donato, PhD; Ana Carolina Guidorizzi Zanetti, PhD

Abstract

The purpose of the current study was to explore family members' perceptions of the causes of first-episode psychosis (FEP). A qualitative study with 68 family members of patients with FEP was performed. Data were collected through semi-structured interviews and submitted for thematic analysis. The attributions for FEP were: use of psychoactive substances as a trigger; influence of genetic and personal factors; exposure to stressful life events; and lack of previous health care and knowledge about psychotic symptoms. Knowledge of possible attributions for the onset of psychosis may be valuable in optimizing early identification of individuals with FEP. [Journal of Psychosocial Nursing and Mental Health Services, 57(1), 34–42.]

Abstract

The purpose of the current study was to explore family members' perceptions of the causes of first-episode psychosis (FEP). A qualitative study with 68 family members of patients with FEP was performed. Data were collected through semi-structured interviews and submitted for thematic analysis. The attributions for FEP were: use of psychoactive substances as a trigger; influence of genetic and personal factors; exposure to stressful life events; and lack of previous health care and knowledge about psychotic symptoms. Knowledge of possible attributions for the onset of psychosis may be valuable in optimizing early identification of individuals with FEP. [Journal of Psychosocial Nursing and Mental Health Services, 57(1), 34–42.]

According to new expectations related to the reformulation of psychiatric assistance worldwide, the family assumes a relevant role in the care of individuals with mental disorders. Therefore, family members are an integral part of the care provided, as the way they think, react, and coexist with the individual with psychosis contributes to the improvement of interventions proposed for this population (Silva & Rosa, 2014; Waidman & Elsen, 2005). Family involvement is especially important in early recognition of symptoms and successful treatment during first-episode psychosis (FEP).

FEP refers to the first time an individual experiences psychotic symptoms (Koutra et al., 2014). The term psychosis is related to the presence of delusions, hallucinations, and/or disorganized speech/behavior, along with lack of understanding on the part of the patient about the symptoms, which is characterized as an important impairment of critical judgment of reality (Del-Ben, Rufino, Azevedo-Marques, & Menezes, 2010). As psychotic disorders are serious mental conditions, early identification of signs and symptoms and a rapid start of appropriate treatment are necessary for preventing a series of complications in the functioning of those affected (Fraguas et al., 2014; Souaiby, Gaillard, & Krebs, 2016; Sullivan et al., 2018).

The family can play a decisive role in seeking health services; however, this search is dependent on their understanding of the reasons triggering the psychotic symptoms. A study of Tunisian mothers, investigating the reasons for seeking psychiatric treatment in adolescents experiencing FEP, demonstrated that various etiologies were attributed to FEP, such as spiritual possession, previous psychiatric disorders, adolescent crisis, genetic causes, and problems induced by consumption of illicit substances (Bourgou, Halayem, Bouden, & Halayem, 2012). A study conducted in Italy with 34 patients with FEP and their family members showed that most family members attributed the appearance of the psychiatric disorder to the use of psychoactive substances, difficulties at school, and the breakup of romantic relationships (Del Vecchio et al., 2015). This study also highlighted stigma and wrongful attribution as the main reasons for delaying treatment for psychosis (Del Vecchio et al., 2015). It is important to emphasize that the longer the delay in seeking treatment, the greater the possibility of an unfavorable prognosis for a patient experiencing FEP (Lloyd-Evans et al., 2011). Therefore, strategies for reducing the period of untreated psychosis should be directed mainly at increasing the knowledge of the general population about FEP, its etiology, and early identification of signs and symptoms, with the aim of improving the prognosis of patients (Del Vecchio et al., 2015; Lloyd-Evans et al., 2011; O'Donoghue et al., 2016). When health care professionals understand the doubts, fears, and beliefs of the family in regard to the process of becoming ill, they can promote the reduction of the delay in seeking treatment for FEP (Vicente, Marcon, & Higarashi, 2016).

When considering the importance of family inclusion for successful treatment of patients with psychotic disorders, it is necessary to know the reasons attributed by the family for occurrence of FEP. However, the Brazilian and international literature is scarce in this regard, thereby suggesting the need for studies that seek to clarify the reasons that may make it difficult for family members of patients with FEP to seek treatment. The objective of the current study was to explore the perceptions of family members about the causes of FEP. It is believed that knowledge of family members' perspectives on the occurrence of psychosis can be used to elaborate strategies and interventions aimed at early identification of patients with FEP.

Method

Study Design, Sample, and Setting

A descriptive qualitative study, based on the premise that knowing the reasons attributed by family members for psychosis may contribute to enhancing early identification by health care professionals of individuals beginning to demonstrate psychotic symptoms, was performed at an outpatient clinic for individuals experiencing FEP at a tertiary-level university hospital located within São Paulo, Brazil, between 2015 and 2016. The clinic performs approximately three consultations with new cases and 15 follow-up consultations per week. Care of patients with FEP is performed by contracted physicians, psychiatry residents, supervisors, psychologists, and nurses. The main criterion for participation was having a family member with a diagnosed psychotic disorder who was in the first 2 to 5 years of treatment at the abovementioned clinic. In addition, family members had to be at least 18 years old and have daily contact with the patient with FEP.

Data Collection and Analysis

A list of patients seen between January 2015 and January 2016 was obtained at the selected study location. A total of 166 family members of patients with FEP were selected. Of these, 22 individuals who did not meet selection criteria were excluded. Thus, 144 family members were potentially eligible to participate in the study. Of the 144 family members, 25 refused to participate after three invitations. Of the remaining 119 family members, 21 were excluded due to the patient being discharged or abandoning treatment, leaving 98 eligible family members. The final convenience sample comprised 68 family members of patients with FEP.

The invitation for family members to participate in the study was made by the researchers (A.H.S.S., L.S.T.) on the day of the patient's appointment at the clinic, or by telephone. The nature and objectives of the study were clarified, and interviews at the health service were arranged. Interviews were conducted individually, face to face, in an appropriate private environment, and lasted an average of 15 minutes. In terms of data collection, a form with closed questions was used, comprising six questions related to sociodemo-graphic variables of the family member (e.g., sex, age, education, marital status, degree of kinship, time spent per day living with the patient) and six questions related to the patient (e.g., sex, age, education, first contact with the health service due to psychotic symptoms, length of treatment at the clinic, main diagnoses). To discover the reasons attributed by family members for FEP, an interview script was used containing the guiding question: “To what do you attribute the disorder of your relative?”

Data collection was continued until the objective of the study had been reached and data had become repetitive, thereby no longer adding relevant information to the understanding of the phenomenon under study. The study was approved by the Research Ethics Committee of the institution in which the study was conducted, in accordance with the Declaration of Helsinki. All participants signed an informed consent form.

Interviews were analyzed using thematic analysis (Braun & Clarke, 2006), a method used to identify, analyze, and report patterns (themes) in the data. Using this analysis, it is possible to organize and describe the data in detail, thereby assisting in its interpretation. The authors proposed six phases that served to guide researchers in the performance of thematic analysis: (a) familiarization with the data through transcription and repeated reading, noting any observations; (b) initial coding through organization of the data into groups based on meanings, identifying the characteristics of these groups and marking extracts of the interviews relevant to each code; (c) construction of potential themes through organization of the codes and selection of extracts illustrating the themes; (d) revision of themes, analyzing which can be integrated, which have sufficient data to support them, and which need to be divided (in this phase, the authors suggest the use of internal homogeneity and external heterogeneity criteria); (e) definition and nomination of the themes through identification of their essence and which aspects of the data each theme represents; and (f) production of a research report through the construction of a cohesive, logical narrative without repetition, focused on the objective of the study. The elaborated thematic categories were validated by two independent researchers (A.H.S.S., A.C.G.Z.). In the case of ambiguities, researchers met for discussion to reach the same conclusion.

Results

Sociodemographic characteristics of the study sample are presented in Table 1. Of the 68 family members of patients with FEP, the majority were women (83.8%), ages 18.5 to 74.2 (mean age = 46 [SD = 11.4] years), who were married (63.2%) and mothers (58.8%). In terms of patients, the majority were male (57.4%), ages 13.4 to 62.4 (mean age = 30.7 [SD = 14.1] years), with an average length of FEP of 21.4 months (SD = 33.7 months) and average treatment time of 10.9 months (SD = 10.6 months). Principal diagnoses were schizophrenia (32.3%), bipolar disorder (20.6%), depression (11.8%), delusional disorder (2.9%), and brief psychotic disorder (1.5%), divided into two diagnostic categories: affective psychosis (46.8%) and nonaffective psychosis (53.2%). It is worth emphasizing that 30.9% of patients were in the initial phase of treatment and had not been diagnosed definitively.

Sociodemographic Characteristics of Family Members and Clinical Characteristics of Patients with First Episode Psychosis

Table 1:

Sociodemographic Characteristics of Family Members and Clinical Characteristics of Patients with First Episode Psychosis

Four thematic categories were identified: the use of psychoactive substances as a trigger, the influence of genetic and personal factors, exposure to stressful life events, and lack of previous health care and knowledge about psychotic symptoms (Table 2).

Overview of Qualitative Results Related to the Perceptions of Family Members About the Causes of First Episode Psychosis

Table 2:

Overview of Qualitative Results Related to the Perceptions of Family Members About the Causes of First Episode Psychosis

Use of Psychoactive Substances as a Trigger

In this category, the use of psychoactive substances, such as alcohol, cannabis, or multiple drugs, emerged from the testimony of family members as a factor in the development of FEP.

He was always perfect, suddenly, out of nothing, alcohol, marijuana, all mixed together, he went crazy in the head, got admitted to hospital and all that, but it's down to this.

In some cases, family members blamed patients for their disorder, as they believed that the process of becoming ill was caused by the consequences of their actions and personal choices in the use of psychoactive substances.

He looked for this, he looked to get ill. Because he got ill by using, because he used a lot of drugs. So, I got tired of giving advice and he wouldn't listen, right? Because he was a boy that worked, you know? A good worker and that, only he started using drugs and ended up becoming ill, because it messed with his mind.

On the other hand, family members reported that the excessive freedom given to patients and the lack of attention to their health may have encouraged them to experiment with psychoactive substances. In this situation, family members blamed themselves for not having acted sooner.

I think that it was excessive freedom. I was suspicious, I could have paid more attention, could have cut his freedom a little, and not have let him use his charisma to confuse me at times when I was making decisions. So, I think that if I had taken better care of him, he wouldn't have tried drugs and maybe never would have had this problem.

Influence of Genetic and Personal Factors

In this category, family members attributed FEP to the presence of genetic factors due to family history of psychiatric illness and the high incidence of psychiatric disorders in the family.

Oh, I will tell you, it's a family problem…. I've got four nephews [with psychiatric disorders]. Because my mother's side had it, my father's side had it…

Look, I believe this is from the family. My dad had it, she has three aunts that have it, and now it's with her.

Family members also believed that the individual had a predisposition to develop psychosis, or that characteristics of his/her personality may have contributed to triggering psychosis.

From what I have seen, maybe there is something in him himself, something personal, that he has a tendency maybe…

Um, I think that, oh, suffering, she is a dreamer…. So, she is the type of person like that for who everything has to be the way they imagine, but it's not like that. Things aren't like that…

Family members also attributed FEP to other previous health conditions, preexisting psychiatric disorders, dermatological problems, or birth-related conditions, as well as issues related to the period of childbirth or puerperium.

…it was after she had her daughter…. It was supposed to be a natural birth and ended up being a caesarean. She still wasn't mature, she had to have an injection, so it led to a disorder. And after this disorder she started being like this.

Exposure to Stressful Life Events

Family members indicated stressful events as important predictors of psychosis. The accumulation of activities was one such factor, where they understood that the responsibility for activities, such as domestic chores, looking after small children, and paid work, was identified as being stressful and potentially contributing to FEP.

I think that he suffered a lot of pressure. He was working a lot, we have a child who is 2. Sometimes he had to stay with the child because I also work. He had to do the shopping for the house, he had to wake up early to work, maybe all this has helped.

Bad working conditions were also listed as contributing to the development of psychosis.

It was mental tiredness and excess work. Because he worked all day on a motorbike, with the sun, the cold, the wind in the face…

Involvement with different learning activities leading to physical and mental exhaustion was also reported as a trigger.

As such, she was studying many things at the same time, studying English, doing her homework, doing guitar lessons, all at the same time, she only had 5 hours to do all this. Then one day she went into shock in the head with too much information and it was then that her treatment started.

Some family members believed psychotic experiences were the result of a long period of stress and did not accept the explanation given by the biomedical discourse on the symptoms of psychosis.

No, I don't classify this as a disease, but it was a phase with a lot of study and she had a lot of confusion in the head; after that she got better. It was a phase that she went through and she is already better. I don't think this is a disease, I think that it was a period she had...a period of study.

On the other hand, lack of occupation and idleness, inherent to the process of retirement, was also indicated as a reason that may have led to FEP.

He retired and felt the necessity to stop work…. He retired very young, retired at 45. So, he left the job, I think he stayed still. I think it was that, he stopped work, stopped everything, got very relaxed and he is very agitated. So, it was from one day to the next, it seems.

Another stress factor reported by family members was the loss of a loved one.

Well, I think that she became sick after her mother died.

Living with an alcoholic member of the family during childhood and intra-family violence were listed as reasons for FEP.

I believe that it was because of his childhood. He had a really difficult childhood, with his parents, an alcoholic father that beat his mother. I believe that sometimes it can be something that comes from a long time ago.

Look, at 10 years old I was abused by my father. He raped me and after that we left home, we got away. So, it was lawsuit here, lawsuit there. The year before last, my father went to prison and started threatening us and he threatened her a lot. And it was then that she started being like this. So, I believe that her disease is because of this.

Other life changes, such as marriage and leaving the parents' home, were also noted by family members.

Look, I think that it was a lot of sudden change. We got married, we went to live far from his parents, and lived alone…. I think it was all that together.

In addition to life changes, some family members attributed the migratory experience as being responsible for making individuals more vulnerable to psychosis.

I think that it was the move, moving from there. She used to live in Bahia and moved to São Paulo, and this influenced her a little I think. Here in São Paulo [she] is stuck at home more, there is more freedom there. This is a part of it, I think.

Another understanding expressed by family members was that FEP occurred due to coping mechanisms used by the individual when romantic relationships ended.

It could have been the trauma that he had from breaking up. He kept it all inside, he didn't cry, didn't demonstrate sadness, he stayed locked away. I thought that this was one of the reasons.

Lack of Previous Health Care and Knowledge About Symptoms of FEP

This category brought together the codes dealing with difficult situations the family had gone through that made it impossible to identify psychotic conditions. Caring for other members of the family who were sick was indicated as an important reason for not perceiving these conditions.

I ended up being remiss, quote-unquote, as I will tell you, remiss without perceiving anything in respect to his situation…. I didn't notice because I had another sick daughter that was undergoing treatment here at the Clinical Hospital. And it took up all my time....

I didn't notice it because he was always a boy like that, that always stood out, never asked me for anything, you know? And I didn't notice, I didn't notice that he was ill, and I only realized after a long time, then it got a lot worse. I feel very guilty about it.

As can be seen in the above extract, not identifying the symptoms early led family members to feel guilty and experience anguish and frustration.

Family members also reported lack of knowledge in respect to the etiology of FEP. Thus, family members referred to the beginning of psychotic manifestations as something unexpected and abrupt and, as such, reported that they still had not managed to understand the reasons for becoming ill.

Until now I haven't understood what happened, because he was always a healthy child…. I have been looking for an answer, [it's] a question without an answer. I don't know what I can attribute this problem to, he was always healthy.

Furthermore, it can be seen that family members are distressed and search incessantly for an answer as to the reason for FEP. Family members live with feelings of uncertainty and incomprehension related to the disruption of the healthy development of the patient.

Moreover, the fact that the etiology of psychiatric disorders is little understood also seems to give comfort to family members, who realize that they are not the only ones who lack the requisite knowledge.

I had never actually heard of it. So, for me it is very difficult to see him this way. Now they tell me that even science still doesn't really know where the disease came from.

Discussion

This was the first study in Brazil to investigate the reasons attributed by family members to the occurrence of FEP. From the perspective of family members, the attributed reasons were related to the use of psychoactive substances as a trigger, the influence of genetic and personal factors, exposure to stressful life events, and lack of previous health care and knowledge about symptoms.

The results demonstrate that despite the low levels of education among family members, who had an average of 6.6 years of study, and the difficulties already indicated in the literature regarding the insertion of the family into Brazilian mental health services (Covelo & Badaró-Moreira, 2015), family members highlighted important aspects related to the etiology of psychotic disorders. This comprehension may have been developed through their observations, from reading correlated texts, or through contact with the health care service. The reasons they gave also point to an understanding of FEP as having a multifactorial etiology involving interaction between biopsychosocial factors contributing to psychosis (Giacon & Galera, 2006).

One of the reasons given by family members for FEP was the use of psychoactive substances, such as frequent abuse of cannabis and multiple drugs, especially during adolescence. It is recognized that starting to use psychoactive substances at an early age can influence the triggering of acute psychoses in young adults and increase the risk of schizophrenia in vulnerable individuals (Wilkinson et al., 2015). However, it should be emphasized that the use of psychoactive substances was accompanied by scapegoating of the patient by the family member and feelings of guilt on the part of the family member for not having identified or acted on the problem earlier. This attribution is based on current understanding that focuses on personal responsibility for health and establishes causal links between individuals' actions and health events. Upon placing responsibility for an illness/disorder on the actions of an individual, blame is constructed, which leads to the presupposition that someone is being judgmental and disapproving in relation to some type of failure (Corradi-Webster & Carvalho, 2011). As the contribution of cannabis to the development of FEP remains to be understood (Wilkinson et al., 2015) and this causal attribution brings suffering and conflict to family members and users, it is important for health care professionals to intervene and emphasize the multicausality involved in FEP.

Genetic and personal factors were also attributed to FEP. Regarding biological aspects, such as genetic predisposition, the presence of lesions, or abnormalities in brain structures and biochemical alterations in neurotransmission, family members understood that nothing could be done when faced with such factors and that the patient was not to blame for becoming ill. However, in relation to personality characteristics, family members encouraged the individual to change his/her perspective to avoid psychotic episodes.

Activity overload was also understood by family members as an important predictor of FEP. Having to manage domestic tasks, such as looking after the house and children, and working may put an individual in a situation of vulnerability that may facilitate the development of psychosis. Moreover, bad working conditions may also be a trigger for psychosis. Due to these attributions, family members question the understanding of the psychotic condition as a disease and suggest that it is stress, “mental tiredness,” or a phase that the individual passes through due to unfavorable conditions, knowing that if/when the stressful situation is alleviated, the individual will get better. A risk in relation to this comprehension may be a delay in seeking treatment, as the behavior of the patient is understood by family members as resulting from stress and not as something health related.

In relation to stress, another factor noted by family members was violent situations and stress in early life, such as exposure to domestic violence. The literature indicates that environmental situations, such as childhood traumas, may play an important role in interacting with genes and sensitizing the dopaminergic system, leaving it more vulnerable to acute stress and contributing to the initiation of psychosis (Howes, McCutcheon, Owen, & Murray, 2016).

Significant life changes were also understood as important predictors of FEP. These changes include loss of a loved one, the beginning or end of a romantic relationship, and migration. The literature has been consistent in affirming that these environmental factors interact with genetic factors in initiating psychosis. FEP prevalence and incidence rates are higher in migrant individuals than native individuals (McGrath, Saha, Chant, & Welham, 2008; Polachek, Fung, & Vigod, 2016). In individuals with a genetic predisposition to psychosis, the psychosocial stress caused by migration and grief may induce deregulation of the hypothalamic-pituitary-adrenal axis and a modification of the neurotransmitters, which influences the beginning of psychosis (Chaumette et al., 2016). Although family members recognize the possible effects of these changes, they may delay the search for treatment, as the symptoms become naturalized and understood as part of the process of change.

The findings obtained in the current study are in line with a study performed in Tunisia, which also showed various etiologies attributed to FEP (Bourgou et al., 2012). Such findings clarify the importance of knowing the meanings attributed by the family in respect to psychosis to develop education strategies that will help families seek health care services more quickly. Some family members also referred to the fact that they did not know the reasons leading to psychosis, whereas others denied the presence of a psychotic disorder, considering this to be just a phase in the life of the individual caused by an overload of daily activities. Studies indicate that denial of the disorder and lack of knowledge about the nature of symptoms, together with stigma and prejudice regarding mental disorders, are factors that contribute to the delay in seeking treatment, which may lead to a worse evolution of the disorder (Bourgou et al., 2012; Connor et al., 2016; Del Vecchio et al., 2015).

Family members' emotional attitudes and beliefs can influence the health of the individual with FEP. Family members who make critical comments are more likely to blame the individual for behavioral alterations and believe that the symptoms could be controlled by the patient and thus are not the result of a mental disorder (Connor et al., 2016). Therefore, the attitudes and beliefs of family members are essential factors in seeking treatment for individuals experiencing FEP and may have significant repercussions on the progression of the disorder (Domínguez-Martínez, Medina-Pradas, Kwapil, & Barrantes-Vidal, 2014).

When considering the reasons given by family members for the occurrence of FEP, it is necessary to implement measures aimed at orienting the general population about the etiology, signs, and symptoms of psychotic disorders and facilitating access to health care. A study conducted with mothers of adolescents experiencing FEP highlighted the importance of health care professionals promoting actions to accelerate the initiation of psychiatric treatment through early identification of psychotic symptoms, divulging clinical signs of psychosis, carrying out informative campaigns, and raising awareness of educators and professors regarding warning signs. Identifying barriers such as prejudice and stigma was also indicated for success in seeking treatment (Bourgou et al., 2012).

It is also important to emphasize that psychosis may present different meanings and course depending on sociocultural context. Factors such as economic status, educational level, and religious beliefs may contribute to increased difficulty in identifying the reason for psychosis onset (Al-Issa, 1995). A previous study suggested that culture has a significative impact on the experience and interpretation of hallucinations (Larøi et al., 2014). Therefore, interventions must consider the cultural context of patients and their families. Another study noted that in Euro-American culture, more effort is made to determine whether an episode is pathologic; on the other hand, the author also argues that non-Western societies may not be as rigid in distinguishing reality from fantasy (Al-Issa, 1995), which may lead to underreporting of psychotic disorders and cause delays in treatment in these cultures. The results from these studies (Al-Issa, 1995; Larøi et al., 2014) reinforce the importance of understanding what is pathologic from the perspective of health care professionals, family members, and patients, considering the cultural aspects in each context.

Nursing Implications

Nurses play an essential role in the provision of care for, and in the rehabilitation of, individuals with psychotic disorders as well as their family members. To enable early identification of FEP, nurses should be trained to detect indicative signs of psychosis, conduct structured interviews, and apply screening instruments. There are several tools that can be applied in primary health care services, such as the Brief Psychiatric Rating Scale, the Mini-International Neuropsychiatric Interview, and the Structured Clinical Interview for DSM-IV, that can evaluate psychopathology comprehensively (Amorim, 2000; Gorenstein, Wang, & Hungerbühler, 2016; Louzã, 2007).

In addition, nursing professionals can also propose campaigns aimed at informing and raising public awareness of the early signs of psychosis in educational institutions, religious organizations, and primary health care services; use social media and mass media; conduct home visits to monitor patients at risk of developing psychosis; identify local services available for help-seeking; and provide access to appropriate treatment (Coentre, Levy, & Figueira, 2011; Joa et al., 2008; Srihari et al., 2014).

Nurses can also provide ongoing health education for nursing teams and other health professionals. In Brazil, primary health care depends on community health agents—professionals with a high school education who belong to the community and are familiar with the local health context. These professionals can be trained by nurses to understand the aspects involved in mental health care and to assist in the early detection of FEP. A study performed in a rural area of Argentina found that periodic training of health agents to raise awareness of the symptoms of mental disorders, together with effective referral of special cases to health care professionals, was correlated with a reduction in duration of untreated psychosis, thereby demonstrating the importance of educational strategies and ensuring access to health care services (Padilla et al., 2015).

The current results may contribute to: (a) improving the nursing health care offered to patients with FEP and their family members; (b) promoting the planning of effective education interventions for the patient, family, and community in the identification of signs and symptoms of FEP; and (c) reducing the stigma and prejudice related to mental disorders.

Limitations

The current study had several limitations. The investigation was conducted with a specific sample, which makes it difficult to generalize the results. Furthermore, although the findings did not focus on demonstrating the relationship between the family's perception of the cause of the onset of FEP and the duration of untreated psychosis, they may support further studies addressing this issue. It is important to emphasize that the study is pioneering concerning family perception about the onset of psychosis and favors the development of further research that helps strengthen the construction of prevention strategies in mental health and reinforces the importance of family inclusion in treatment. Additional studies should be conducted in different contexts to enable data to be compared in the search to understand the reasons listed by family members for the occurrence of FEP.

Conclusion

Family members attributed the use of psychoactive substances, genetic and personal factors, stressful life events, and lack of knowledge about psychotic symptoms to the occurrence of FEP. Acknowledging these reasons attributed by family members will help multi-professional team members with earlier identification of individuals at the beginning of psychosis.

References

  • Al-Issa, I. (1995). The illusion of reality or the reality of illusion: Hallucinations and culture. British Journal of Psychiatry, 166, 368–373. doi:10.1192/bjp.166.3.368 [CrossRef]
  • Amorim, P. (2000). Mini International Neuro-psychiatric Interview (MINI): Validation of a short structured diagnostic psychiatric interview [article in Portuguese]. Revista Brasileira de Psiquiatria, 22, 106–115. doi:10.1590/S1516-44462000000300003 [CrossRef]
  • Bourgou, S., Halayem, S., Bouden, A. & Halayem, M.B. (2012). Tunisian mothers' beliefs about their child's first psychotic episode [article in French]. Encephale, 38, 473–479. doi:10.1016/j.encep.2012.01.012 [CrossRef]
  • Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. doi:10.1191/1478088706qp063oa [CrossRef]
  • Chaumette, B., Kebir, O., Mam Lam Fook, C., Bourgin, J., Godsil, B.P., Gaillard, R. & Krebs, M.O. (2016). Stress and psychotic transition: A literature review [article in French]. Encephale, 42, 367–373. doi:10.1016/j.encep.2015.10.001 [CrossRef]
  • Coentre, R., Levy, P. & Figueira, M.L. (2011). Intervenção precoce na psicose primeiro episódio psicótico e período crítico. Acta Médica Portuguesa, 24, 117–126 Retrieved from https://actamedicaportuguesa.com/revista/index.php/amp/article/viewFile/336/106
  • Connor, C., Greenfield, S., Lester, H., Channa, S., Palmer, C., Barker, C. & Birchwood, M. (2016). Seeking help for first-episode psychosis: A family narrative. Early Intervention in Psychiatry, 10, 334–345. doi:10.1111/eip.12177 [CrossRef]
  • Corradi-Webster, C.M. & Carvalho, A.M.P. (2011). Diálogos da psicologia com a enfermagem em tempos de transição paradigmática. Revista da Escola de Enfermagem USP, 45, 974–980. doi:10.1590/S0080-62342011000400026 [CrossRef]
  • Covelo, B.S.R. & Badaró-Moreira, M.I. (2015). Links between family and mental health services: Family members' participation in care for mental distress [article in Spanish]. Interface: Comunicação, Saúde, Educação, 19, 1133–1144. doi:10.1590/1807-57622014.0472 [CrossRef]
  • Del-Ben, C.M., Rufino, A.C.T.B., Azevedo-Marques, J.M. & Menezes, P.R. (2010). Differential diagnosis of first episode psychosis: Importance of optimal approach in psychiatric emergencies [article in Portuguese]. Revista Brasileira de Psiquiatria, 32, S78–S86. doi:10.1590/S1516-44462010000600004 [CrossRef]
  • Del Vecchio, V., Luciano, M., Sampogna, G., De Rosa, C., Giacco, D., Tarricone, I. & Fiorillo, A. (2015). The role of relatives in pathways to care of patients with a first episode of psychosis. International Journal of Social Psychiatry, 61, 631–637. doi:10.1177/0020764014568129 [CrossRef]
  • Domínguez-Martínez, T., Medina-Pradas, C., Kwapil, T.R. & Barrantes-Vidal, N. (2014). Relatives' illness attributions mediate the association of expressed emotion with early psychosis symptoms and functioning. Psychiatry Research, 218(1–2), 48–53. doi:10.1016/j.psychres.2014.04.012 [CrossRef]
  • Fraguas, D., Del Rey-Mejías, A., Moreno, C., Castro-Fornieles, J., Graell, M., Otero, S. & Parellada, M. (2014). Duration of untreated psychosis predicts functional and clinical outcome in children and adolescents with first-episode psychosis: A 2-year longitudinal study. Schizophrenia Research, 152, 130–138. doi:10.1016/j.schres.2013.11.018 [CrossRef]
  • Giacon, B.C. & Galera, S.A. (2006). First episode of schizophrenia and nursing care [article in Portuguese]. Revista da Escola de Enfermagem da USP, 40, 286–291. doi:10.1590/S0080-62342006000200019 [CrossRef]
  • Gorenstein, C., Wang, Y.P. & Hungerbühler, I. (2016). Instrumentos de avaliação em saúde mental. Porto Alegre, Brazil: Artmed.
  • Howes, O.D., McCutcheon, R., Owen, M.J. & Murray, R.M. (2016). The role of genes, stress, and dopamine in the development of schizophrenia. Biological Psychiatry, 81, 9–20. doi:10.1016/j.biopsych.2016.07.014 [CrossRef]
  • Joa, I., Johannessen, J.O., Auestad, B., Friis, S., McGlashan, T., Melle, I. & Larsen, T.K. (2008). The key to reducing duration of untreated first psychosis: Information campaigns. Schizophrenia Bulletin, 34, 466–472. doi:10.1093/schbul/sbm095 [CrossRef]
  • Koutra, K., Triliva, S., Roumeliotaki, T., Stefanakis, Z., Basta, M., Lionis, C. & Vgontzas, A.N. (2014). Family functioning in families of first-episode psychosis patients as compared to chronic mentally ill patients and healthy controls. Psychiatry Research, 219, 486–496. doi:10.1016/j.psychres.2014.06.045 [CrossRef]
  • Larøi, F., Luhrmann, T.M., Bell, V., Christian, W.A. Jr.. , Deshpande, S., Fernyhough, C. & Woods, A. (2014). Culture and hallucinations: Overview and future directions. Schizophrenia Bulletin, 40(Suppl. 4),S213–S220. doi:10.1093/schbul/sbu012 [CrossRef]
  • Lloyd-Evans, B., Crosby, M., Stockton, S., Pilling, S., Hobbs, L., Hinton, M. & Johnson, S. (2011). Initiatives to shorten duration of untreated psychosis: Systematic review. British Journal of Psychiatry, 198, 256–263. doi:10.1192/bjp.bp.109.075622 [CrossRef]
  • Louzã, M.R. (2007). Early detection: Is it possible to prevent schizophrenia? [article in Portuguese]. Archives of Clinical Psychiatry (São Paulo), 34(Suppl. 2), 169–173. doi:10.1590/S0101-60832007000800004 [CrossRef]
  • McGrath, J., Saha, S., Chant, D. & Welham, J. (2008). Schizophrenia: A concise overview of incidence, prevalence, and mortality. Epidemiologic Reviews, 30, 67–76. doi:10.1093/epirev/mxn001 [CrossRef]
  • O'Donoghue, B., Lyne, J.P., Renwick, L., Lane, A., Madigan, K., Staines, A. & Clarke, M. (2016). Neighbourhood characteristics and the incidence of first-episode psychosis and duration of untreated psychosis. Psychological Medicine, 46, 1367–1378. doi:10.1017/S003329171500286X [CrossRef]
  • Padilla, E., Molina, J., Kamis, D., Calvo, M., Stratton, L., Strejilevich, S. & de Erausquin, G.A. (2015). The efficacy of targeted health agents education to reduce the duration of untreated psychosis in a rural population. Schizophrenia Research, 161, 184–187. doi:10.1016/j.schres.2014.10.039 [CrossRef]
  • Polachek, I.S., Fung, K. & Vigod, S.N. (2016). First lifetime psychiatric admission in the postpartum period: A population-based comparison to women with prior psychiatric admission. General Hospital Psychiatry, 40, 25–32. doi:10.1016/j.genhosppsych.2016.01.007 [CrossRef]
  • Silva, E.K.B. & Rosa, L.C.S. (2014). Deinstitutionalizing psychiatry in Brazil: Risks of removing the state's responsibility [article in Portuguese]. Revista Katálysis, 17, 252–260. doi:10.1590/S1414-49802014000200011 [CrossRef]
  • Souaiby, L., Gaillard, R. & Krebs, M.O. (2016). Duration of untreated psychosis: A state-of-the-art review and critical analysis [article in French]. L'Encéphale, 42, 361–366. doi:10.1016/j.encep.2015.09.007 [CrossRef]
  • Srihari, V.H., Tek, C., Pollard, J., Zimmet, S., Keat, J., Cahill, J.D. & Woods, S.W. (2014). Reducing the duration of untreated psychosis and its impact in the U.S.: The STEP-ED study. BMC Psychiatry, 14, 335. doi:10.1186/s12888-014-0335-3 [CrossRef]
  • Sullivan, S.A., Carroll, R., Peters, T.J., Amos, T., Jones, P.B., Marshall, M. & Tilling, K. (2018). Duration of untreated psychosis and clinical outcomes of first episode psychosis: An observational and an instrumental variables analysis. Early Intervention in Psychiatry. Advance online publication. doi:10.1111/eip.12676 [CrossRef]
  • Vicente, J.B., Marcon, S.S. & Higarashi, I.H. (2016). Living with mental disorder in childhood: Feelings and reactions of the family [article in Spanish]. Texto & Contexto–Enfermagem, 25, e0370014. doi:10.1590/0104-0707201600370014 [CrossRef]
  • Waidman, M.A.P. & Elsen, I. (2005). O cuidado interdisciplinar à família do portador de transtorno mental no paradigma da desinstitucionalização. Texto & Contexto– Enfermagem, 14, 341–349. doi:10.1590/S0104-07072005000300004 [CrossRef]
  • Wilkinson, S.T., Radhakrishnan, R., Haven, N., Mental, C., Haven, N. & Haven, W. (2015). Impact of cannabis use on the development of psychotic disorders. Current Addiction Reports, 1, 115–128. doi:10.1007/s40429-014-0018-7 [CrossRef]

Sociodemographic Characteristics of Family Members and Clinical Characteristics of Patients with First Episode Psychosis

Variablen (%)Mean (SD)Median (Range)
Family members (N = 68)
Gender
  Female57 (83.8)
  Male11 (16.2)
Age (years)46 (11.4)44.3 (18.5 to 74.2)
Years of education6.6 (3.9)7 (0 to 17)
Marital status
  Married43 (63.2)
  Divorced/widowed25 (36.8)
Relation to patient
  Mother40 (58.8)
  Spouse13 (19.1)
  Sibling6 (8.8)
  Father2 (2.9)
  Other7 (10.4)
Contact with patient (hours/day)16.8 (8.3)20 (1 to 24)
Patients (N = 68)
Gender
  Female29 (42.6)
  Male39 (57.4)
Age (years)30.7 (14.1)25.6 (13.4 to 62.4)
Years of education8.1 (3.5)9 (0 to 15)
Time since first contact with the health service (months)21 (33.9)14 (1 to 240)
Outpatient treatment time (months)10.9 (10.6)7 (1 to 34)
Diagnoses
  Schizophrenia22 (32.3)
  Bipolar disorder14 (20.6)
  Depression8 (11.8)
  Delusional disorder2 (2.9)
  Brief psychotic disorder1 (1.5)
  No current diagnosis21 (30.9)

Overview of Qualitative Results Related to the Perceptions of Family Members About the Causes of First Episode Psychosis

Thematic CategoryDescription
Use of psychoactive substances as a triggerRefers to the use of psychoactive substances such as alcohol and cannabis, or the use of multiple drugs that trigger psychosis.
Influence of genetic and personal factorsAddresses the reports of family members who believe that the onset of FEP was triggered by the presence of genetic factors, due to a family history of psychiatric illnesses and a high incidence of these health conditions in the family. In addition, the personality characteristics of the patient and previous health conditions are also attributed to the occurrence of psychosis.
Exposure to stressful life eventsRecognizes stressful events as important predictors of the onset of psychosis. Among the stressful situations presented are: the accumulation of activities; bad working conditions; a lack of occupation and idleness; the loss of a loved one; living with an alcoholic member of the family during childhood an d intra-family violence; life changes; and the end of romantic relationships.
Lack of previous health care and knowledge about psychotic symptomsDetermines family members' lack of previous health care and insufficient information to identify the reason for the onset of psychosis.
Authors

Ms. Silva is Master Degree Student, Strito Sensu Graduate Program Psychiatric Nursing, Dr. Vedana is Professor, Ms. Martin is Nursing Specialist, Dr. Gherardi-Donato is Professor, and Dr. Zanetti is Professor, Department of Psychiatric Nursing and Human Sciences, University of São Paulo at Ribeirão Preto College of Nursing, World Health Organization (WHO) Collaborating Centre for Nursing Research Development, Ribeirão Preto; Dr. Corradi-Webster is Professor, Department of Psychology, Faculty of Philosophy, Sciences and Letters, University of São Paulo; and Ms. Tressoldi is Nurse, Dr. Pedro Agápio de Aquino Netto Health Center, Municipal City Hall of Campinas, Campinas, São Paulo, Brazil.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

The authors thank the entire team from the outpatient clinic in which the study was performed, and all patients and family members who participated in the study.

Address correspondence to Ana Carolina Guidorizzi Zanetti, PhD, Professor, Department of Psychiatric Nursing and Human Sciences, University of São Paulo at Ribeirão Preto College of Nursing, World Health Organization (WHO) Collaborating Centre for Nursing Research Development, Avenida Bandeirantes 3900, Room 49, Campus Universitário, Monte Alegre, 14040-902, Ribeirão Preto, Brazil; e-mail: carolzanettieerp@gmail.com.

Received: February 20, 2018
Accepted: June 14, 2018
Posted Online: August 22, 2018

10.3928/02793695-20180817-01

Sign up to receive

Journal E-contents