Knowledge of the disease and treatment expectations in relatives of patients with the first psychotic episode: a cross-sectional study

Abstracts

INTRODUÇÃO: Os familiares de pacientes no primeiro episódio psicótico ocupam um lugar importante no tratamento e na recuperação de seus parentes em atendimento. OBJETIVO: Avaliar o conhecimento sobre transtorno psicótico e as expectativas de tratamento dos familiares desses pacientes. MÉTODO: Antes de participarem de um grupo multifamiliar, os parentes dos pacientes no primeiro episódio psicótico responderam a um questionário a respeito de seus conhecimentos sobre a doença e de suas expectativas em relação ao tratamento. RESULTADOS: A amostra constituiu-se de 47 mulheres (82,5%) e 10 homens (17,5%), sendo a maioria mães dos pacientes. As respostas mostraram haver nenhum ou pouco conhecimento sobre o que é a crise psicótica, seus sintomas, tratamento e medicação. Em relação ao que gostariam de conversar no grupo de familiares, 16 (28%) indivíduos não responderam, 12 (21%) queriam saber como lidar com seu parente doente, seis (10,5%) queriam conversar sobre tudo, seis (10,5%) queriam entender o problema do parente, e 17 (30%) queriam conversar sobre a doença e aspectos relacionados. DISCUSSÃO: Os resultados mostraram que o conhecimento sobre a doença é escasso e que há interesse, principalmente, em saber como lidar com a situação. CONCLUSÕES: O acolhimento e as informações vão ao encontro das necessidades dos usuários e podem ajudar a melhorar a adesão ao tratamento, a qualidade das relações familiares e a evolução da doença.

Terapia familiar; esquizofrenia; transtornos psicóticos

ORIGINAL ARTICLE

Knowledge of the disease and treatment expectations in relatives of patients with the first psychotic episode: a cross-sectional study

Conocimiento sobre la enfermedad y expectativas acerca del tratamiento en los familiares de pacientes en el primer episodio psicótico: un estudio transversal

Rita Regina Fabri Cabral^I; Ana Cristina Chaves^II

^IPsychotic Episode Program (Programa Episódio Psicótico - PEP), Psychiatry Department , Universidade Federal de São Paulo (UNIFESP-EPM), São Paulo, SP, Brazil

^IIPEP, Universidade Federal de São Paulo (UNIFESP-EPM) PhD. Coordinator of the PEP from the Psychiatry Department of UNIFESP-EPM, São Paulo, SP, Brazil

^{Correspondence}

ABSTRACT

INTRODUCTION: Family members are important in the care and recovery of first-episode psychotic patients.

OBJECTIVE: To evaluate the knowledge of the disease and the treatment expectations of the relatives of patients at their first psychotic episode.

METHOD: Before participating in a multi-family group, relatives of first-episode psychotic patients answered a questionnaire concerning their knowledge of the illness and their treatment expectations.

RESULTS: The sample consisted of 47 women (82.5%) and 10 men (17.5%), mostly mothers. Answers showed no or little knowledge about the psychotic crisis, its symptoms, treatment and medication. Sixteen (28%) individuals did not provide an answer for the question about what they would like to discuss in the multi-family group, 12 (21%) wanted to know how to deal with and care for their ill relative, six (10.5%) would like to talk about everything, six (10.5%) wanted to understand the patient's problem, and the remaining 17 patients (30%) wanted to talk about the illness and related subjects.

DISCUSSION: The results show that there is little knowledge about the disease, and that the relatives of first-episode psychotic patients are interested to know how to deal with the situation.

CONCLUSION: Relatives of first-episode psychotic patients should be offered receptiveness and information. This can have a positive influence on the adherence to treatment, the quality of family relations, and the outcome.

Keywords: Family therapy, schizophrenia, psychotic episodes.

RESUMEN

INTRODUCCIÓN: Los familiares tienen un rol muy importante en el tratamiento y recuperación de los pacientes que están siendo atendidos en el primer episodio psicótico.

OBJETIVO: Evaluar el conocimiento sobre el trastorno psicótico y las expectativas de tratamiento de los familiares de los pacientes en el primer episodio psicótico.

MÉTODO: Antes de participar de un grupo multifamiliar, los parientes de los pacientes en el primer episodio psicótico contestaron a una encuesta sobre sus conocimientos acerca de la enfermedad y sus expectativas con relación al tratamiento.

RESULTADOS: La muestra está formada por 47 mujeres (82,5%) y 10 hombres (17,5%), siendo la mayoría, madres de pacientes. Las respuestas indicaron haber poco o ningún conocimiento sobre lo que es un episodio psicótico, o sobre sus síntomas, tratamiento y medicación. Respecto a que les gustaría hablar en el grupo familiar, 16 (28%) individuos no contestaron, 12 (21%) quisieran saber cómo tratar a su pariente enfermo, seis (10,5%) quisieran conversar acerca de todo, seis (10,5%) quisieran entender el problema del pariente y el resto (17 o 30%) quisieran conversar acerca de la enfermedad y los aspectos relacionados.

DISCUSIÓN: Los resultados indicaron que el conocimiento acerca de la enfermedad es insuficiente y que hay interés, principalmente, en saber cómo manejar la situación.

CONCLUSIONES: La acogida y las informaciones atienden a las necesidades de los usuarios y pueden ayudar a mejorar la adhesión al tratamiento, la calidad de las relaciones familiares y evolución de la enfermedad.

Palabras clave: Terapia familiar, esquizofrenia, trastornos psicóticos.

INTRODUCTION

A historical and conceptual review of the research studying the relationship among families and severe mental disorder events showed that systemic theories from the 1950s used to associate dysfunctional family relations with the disease onset.¹ Based on the assumption that the psychiatric illness was caused by family members' behavior and communication habits, their main treatment aim was to change the family system.^1,2 From the late 1970s on, theories and systemic therapies related to schizophrenia started to decline for several reasons, mainly because the results were disappointing, relatives felt harassed as if they were "scapegoats" for the cause of the disease.^2,3

In parallel to the systemic theories, English psychiatrists and social scientists observed that there was an association between family environment and relapse rates of discharged long stay psychiatric inpatients living at the community.² The Camberwell Family Interview (CFI) and the Expressed Emotion (EE) Construct were developed in the 1960s to investigate the components of family engagement and how the interpersonal environment could interfere in the course of the disease instead of the determination of its onset.^4,5

Based on EE studies and on the etiologic model by Zubin & Spring,⁶ which comprises stress and vulnerability, they developed a new approach towards schizophrenic patient's relatives.⁷ Their goal was to provide aid to family caregivers. They proposed meetings where families could learn about the nature of the disorder and its treatment, followed by sessions about how to solve interpersonal difficulties and practical problems.⁷ The idea was to reduce the high expressed emotion and increase the capacity of family caregivers to take care of their patients.²

All those approaches complement each other, but the last 20 years have seen a rise of a number of other strategies with different methods and goals.¹ In general, they share two main characteristics: they provide information to family members about the disorder, and offer support and guidance for patients and family during a long period after a psychotic episode.^2,8-11

Currently, there has been a need for early interventions that comprehend a combination of drugs and strong psychosocial intervention. The target group is composed of young individuals, and the goal of interventions is to prevent or limit mental, psychological and social damage after the first psychotic episode.^12-14 In this model of intervention, there must be a therapeutic collaborative alliance, in order that patients and family members are guided toward positive aspects in the way through the disease's healing.¹⁵ However, only a few studies about family intervention in the first psychotic episode have been developed so far, and comparison is made difficult by the differences found in the definition of criteria for the first psychotic episode and in the types of interventions used.³

Even though there is a consensus that the family intervention is important, changing people's behavior is a complex process that cannot be simply reduced to the introduction of new information.¹⁶ Moreover, there is not a consensus on how these information should be provided,¹⁷ nor it is clear why family interventions are good or effective,¹⁷ or which mixture of ingredients would "act" in the promotion of family intervention programs success.^17,18

Examining the patient's reports as for what they consider useful or not in interventions can help clear up the underlying process and its therapeutic impact.¹⁷ It can also help determine the basis for a psychoeducational program,¹⁹ identify what kind of help the patients, relatives and professionals consider important²⁰ and assess their satisfaction with psychiatric care services.²¹ Preliminary conclusions of the scarce literature on the topic, point out that psychotic patient's needs are different from what professionals propose, and that patients with first psychotic episodes and their families are not satisfied with the information they are given.^20,21

Within this context, the main goal of the present study was to investigate patient's family knowledge on the first-episode psychotic disorder and its treatment, and to determine what they would like to talk about in the weekly multi-family sessions.

METHOD

Sample

In 1999, first-episode psychotic disorder patients and their relatives entered the outpatient Psychotic Episode Program (PEP), a health care service from Universidade Federal de São Paulo - Escola Paulista de Medicina (UNIFESP - EPM).

Patients presenting at the Emergency Service from Hospital São Paulo with an acute psychotic episode were referred to PEP by the hospital's psychiatrists. In general, they were referred to PEP in the same week the disorder was identified and were included in a group of patients. In case they were using antipsychotic drugs, they should be with no more than four weeks of regular use of medication.

The first-episode psychotic disorder is defined as a first-ever presentation of patients between 15 and 45 years-old to any psychiatric service with a psychotic episode.²² The diagnostic criterion is wide, symptomatologic and syndromic (patients do not present a definitive psychiatric diagnose).

The focused sample of this study included adult individuals, families and people who were close to patients, had a close contact and intended to follow them in weekly visits to the outpatient psychiatric service.

Procedures

The questionnaire proposed by Anderson et al.7 was translated and adapted into Portuguese. It was used to assess the schizophrenia patients' relatives opinion after they participated in the intervention proposed. Two psychiatrists translated the questionnaire to Portuguese, and an expert translator performed the back translation. Discrepancies were discussed until a satisfactory and definitive version to Portuguese was reached. The questionnaire was adapted to be used before family intervention. The final version of the questionnaire is composed of five questions with four multiple-choice answers (1. nothing, 2. a little, 3.medium or 4. a lot) aimed at obtaining data about the realized knowledge on the disease and treatment, and of an open-ended question about what they would like do discuss during meetings.

Individuals accompanying or responsible for the patients answered the questionnaire and in the following week were invited to take part in the weekly multi-family session arranged specifically for this group.

Sociodemographic and questionnaire's data were analyzed with the SPSS-11.0 software. The authors have read and re-read the answers for the open-ended question in separate, and after discussion, they identified some qualitative variables.

RESULTS

Between January 2002 and June 2003, 63 patients accompanied by 82 relatives were included in the outpatient psychiatric service. Of these, 57 (69.5%) answered the questionnaire, 47 female (82.5%) and 10 (17.5%) male. The percentual distribution per relative demonstrated to be higher in mothers (48.2%), as when compared to fathers (7.1%), siblings (16.1%), spouse/partners (12.5%), friends (3.6%) or others (12.5%). Individuals who had a daily contact with the patient were most frequently (83.9%) followed by individuals with weekly (12.55), monthly (1.8%) and occasional (1.8%) contact. Mean relatives' age was 43.4 years (SD - 12.3).

The questionnaire's results are shown in table 1. Respondents reported to have no (score 1) or little (score 2) knowledge about the disease (questions 1 and 2), treatment used (questions 3 and 4) and the medical team (question 5).

Sixteen out of the 57 participants did not answer the open-ended question (item 6, what they would like to talk about.) We found 10 variables in the 42 answers obtained. Twelve people referred to aspects on "how to deal" or "how to act" with the patient. Six would like the "talk about everything," and six would like to talk about the "patient's status." Four people wanted to talk about "medication." Four mentioned "treatment," and three "causes". One person wanted to hear "other people's opinion," and three people mentioned they would like to talk about "diseases." One wanted to talk about "reactions," and one to know about the "future." Table 2 summarizes these data.

DISCUSSION

The present study is part of a larger project that tried to know which were the family's expectations and later collected the opinions from the intervention participants. The main goals were to ease the implementation, and improve compliance and effectiveness of psychoeducational interventions offered to relatives of patients in the first-episode psychotic disorder. It is believed that these family members who were precociously admitted, free from guilt and stigma, oriented to accept the sickness and admit signs of exacerbation may help patients improve their sickness insight and adherence to necessary treatment in each case.^14,15 That is the reason why family interventions are becoming vital in mental care services.^23,24

We assume having a family member with a mental disorder affects people in different ways. They may experience a wide variety of emotions - guilt, anger and even disease's denial; it must not be expected that relatives be able to provide immediate help and support to the patient.15 However, when families arrive at a psychiatric service they have a strong desire to understand the problem and want a fast and effective treatment for their relatives.^13,15

Findings showed that most people accompanying patients were mothers with daily contact with them; this fact reflects our culture, where mothers are the main caregivers in our context.

In the questionnaire, most people said they did not have any or had just little knowledge on the disorder and its treatment. It is worth mentioning, however, that many respondents did not answer the open-ended question about what they would like to talk during the meetings, and the answer "obtaining knowledge" was not as frequent as we expected. They were most frequently interested on "how to act" or "how to deal" with the ill patient, probably a result of their need to manage the first psychotic crisis. The intervention carried out with the patient's family should provide generic data about psychosis and its treatment, but it is very important to be aware of the specific needs of each case, once the diagnosis of schizophrenia or other psychotic disorder is not immediate. In the initial phase, intervention can contribute to the diagnosis formulation.

In a recent study, Fresan et al.¹⁹ aimed at knowing the familial environment and setting the basis for o psychoeducation program according to the needs of first-episode psychotic disorder patient's families. They found out that, even though the participants said they had knowledge about the disease (6% knew everything, 12% knew a lot, 56% something, 12% a few and 2% nothing), they realized that their knowledge was not enough to go through a crisis. In other words, they did not have enough knowledge to manage the situation and to deal with the ill patient. According to the authors' report, patient's relatives associated the lack of knowledge about the disorder etiology with a feeling of guilt, and these two feelings associated constrained their ability to handle the disorder.¹⁹

Although there is evidence that familial psychoeducation reduces relapse rates and helps the recovery of patients with severe mental disorder,^2,8,9,11 it is said that the routine use of familial intervention based on evidence is extremely limited,^2,8,9 and that users are not satisfied with existing programs.^17,20,21 One of the drawbacks of the family's intervention in the clinical practice is how to adapt it to a specific social and cultural context.²⁵ Dialoguing with a wide range of individuals considered as collaborators - programs' management, patients, families and others - and focusing not only on program's protocols but also on specific needs can help clarify several aspects of the adaptation process.^17,20,25

In spite of positive aspects, it is also important to assume the limitations of this study. Families and accompanying people were all volunteers, the sample is short, it was not performed in a defined catchment area and there was an important loss of follow-up of nearly 30.5% (57/82). All these facts make it difficult to determine the extension to which results can be representative of patient's families in the first psychotic disorder event.

REFERENCES

Received on January 4, 2005.

Revised on January 4, 2005.

Approved on February 23, 2005.

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Publication Dates

• Publication in this collection
  15 Sept 2005
• Date of issue
  Apr 2005

History

• Reviewed
  01 Apr 2005
• Received
  04 Jan 2005
• Accepted
  23 Feb 2005