Patient and family psychoeducation: Service development and implementation in a center in Iran

Introduction

In recent decades, new developments in psychiatry are incorporated into service delivery in a comprehensive manner. The role of medication in the treatment of severe and chronic psychiatric illnesses is well illustrated. Pharmacological treatment is considered as the main treatment in these illnesses, and psychosocial interventions are an important part of ‘non-pharmacological’ treatment (Rummel-Kluge & Kissling, 2008).

One of the most commonly used and effective psychosocial interventions is psychoeducation, which provides didactic, structured and systematic information about the course of illness, the treatments and the coping skills for patients and their families (Bisbee & Vickar, 2012; Rummel-Kluge & Kissling, 2008; Turner, Gaag, Karyotaki, & Cuijpers, 2014). Psychoeducation can reduce the rate of relapse and re-hospitalization, especially if provided during an early phase of the illness (Lucksted, Mcfarlane, Downing, Dixon, & Adams, 2012; Vieta, 2005; Stuart & Schlosse, 2009; Yesufu-Udechuku et al., 2015). This intervention can improve the compliance in outpatient services, decrease the burden and have positive effects on patients and their families, thus ensuring better quality of life for caregivers (Bisbee & Vickar, 2012; Lucksted et al., 2012; Rummel-Kluge and Kissling, 2008; Yesufu-Udechuku et al., 2015). Enhanced regularity in lifestyle and recognition of early warning signs are some of the other benefits (Colom et al., 2003).

In vast numbers of clinical trials and systematic reviews, family psychoeducation has demonstrated significant improvements in clinical outcomes of schizophrenia and bipolar disorder. It reduces symptomatic relapse and re-hospitalization as well as burden and stress levels of caregivers (McFarlane, 2016). Unfortunately, family and patient psychoeducation as evidence-based practices are not widely implemented at service delivery level and into routine clinical practice, even in developed settings (Eassom, Giacco, Dirik, & Priebe, 2014; Lucksted et al., 2012; McFarlane, 2016; Rummel-Kluge, Pitschel-Walz, Bäuml, & Kissling, 2006).

Psychoeducation can be offered in single or multiple group format with the latter being more cost-effective (Mcfarlane et al., 1995). The recommended duration for this intervention is varied. Offered interventions vary based on the patient and their family’s needs as well as the available resources of mental health services (Brooke-Sumner et al., 2015; Mottaghipour & Bickerton, 2005).

However, implementation of interventions is a complex social process and connected with the context in which it takes place (Bird et al., 2014). On the other hand, the effect of cultural values on the stress and coping process among families link to caregivers’ burden appraisal and health outcomes (Knight & Sayegh, 2010).

In developing countries, cultural context is different compared to developed countries. For example, one-third to two-thirds of patients in western countries have regular contact or live with their families compared to more than 90% of patients in some eastern countries (Caqueo-Urízar, Rus-Calafell, Urzua, Escudero, & Gutiérrez-Maldonado, 2015; Chakrabarti, 2011). In Iran, as a developing country, most patients live with their families. The role of family, especially parents, is significant in making decisions and supporting children well into adulthood (Karamlou, Mottaghipour, & Mazaheri, 2010; Mottaghipour et al., 2008; Mottaghipour, Shams, Beyraghi, Samimi, & Khodaeifar, 2009). Therefore, the role of families in the course of illness is more prominent.

Economic issues are also a challenge in developing countries, so addition of a psychosocial service requires allocation of funds and budget and many of the care is not covered by insurance systems. Furthermore, low level of education and logistical issues, such as follow-up challenges and limited resources, are some of the barriers in service delivery in low- and middle-income countries, which may be causing lower quality in the provided services. One main question remains as to how feasible it is to implement a program given the variation in available resources and cultural context (Brooke-Sumner et al., 2015).

In recent years, there have been some advances in delivering psychosocial interventions for patients with severe mental illnesses in Iran (Karamlou et al., 2010; Malakouti et al., 2016; Mottaghipour & Tabatabaee, in press). In Roozbeh Hospital, a referral center for severe mental illnesses, pharmacological treatment has been the main treatment of focus for patients suffering from severe mental disorders for decades and only few psychosocial interventions have been provided to patients and their families by clinicians. In recent years, home visit service for severely mentally ill patients was developed in this hospital (Sharifi et al., 2006).

Due to its effectiveness and efficiency in the treatment plan of patients, psychoeducation should be provided to patients and their families as a routine part of a comprehensive treatment. However, the barriers and challenges have influenced the implementation and quality of these services (Brooke-Sumner et al., 2015; Caqueo-Urízar et al., 2015; Chakrabarti, 2011; Eassom et al., 2014).

The aim of this article is to report the processes of development and implementation of a psychoeducational service for severely mentally ill patients and their families in a developing country, Iran. We outline the experience of establishing an evidence-based service in a routine clinical practice, to provide psychoeducation to patients and their families, taking into consideration limited resources and different cultural contexts.

Methods

Results

Manual

The program consisted of eight 90- to 120-minute weekly group sessions for 4–10 participants for patient psychoeducation and six weekly multiple family group sessions. Two manuals for patient education (schizophrenia and bipolar disorder) were developed and published (Mottaghipour, Tabatabaee, & Zarghami, 2014; Tabatabaee, Mottaghipour, & Zarghami, 2014). Main topics to be discussed in each session and group exercise with the purpose of increasing group interaction and improve learning processes were developed. Table 1 shows the content of each session of the PPE and the FPE manual. A total of 11 information sheets based on the topic of each session for the family psychoeducation program, 10 information sheets for the bipolar patient psychoeducation program and 11 information sheets for the schizophrenia patient psychoeducation program were distributed during the sessions covering main topics of discussion. Group leaders encouraged participants to read information sheets as well as pass them on to other family members who did not participate, and to come back with questions that they might have the following week.

OPEN IN VIEWER

Table 1.

The content of each session of the patient and family psychoeducation manual.

	Patient psychoeducation	Family psychoeducation
Session I	Introduction	Introduction
	Orientation	Family story of the illness
Session II	Understanding the illness	Understanding the illness
	Schizophrenia/bipolar disorder	Signs and symptoms
	Signs and symptoms	Stress-vulnerability model
		Course of illness
Session III	Stress-vulnerability model	Treatment and follow-up
	Epidemiology and course of disorder
Session IV	Treatment and follow-up	The role of family
Session V	Early warning signs	Early warning signs
	Relapse prevention	Relapse prevention
		Problem solving
Session VI	Coping with the illness	Crisis prevention
	Stigma	Special issues
Session VII	Problem solving
Session VIII	Recovery
	Special issues

Service users

Regular screening was carried out by social workers to select patients admitted with schizophrenia, schizoaffective or bipolar disorder diagnosis. These patients and their families were invited to participate in educational sessions immediately after discharge from the hospital. Furthermore, faculty psychiatrists and psychiatric residents were encouraged to refer their patients to the psychoeducation programs.

Patients who were diagnosed with Diagnostic and Statistical Manual of Mental Disorders (4th edition, text revision) (DSM-IV-TR) schizophrenia, schizoaffective or bipolar disorder, within the age range of 18–65 years, residing in Tehran or in the surrounding suburbs were invited to participate in the program after being discharged from Roozbeh Hospital. In 2 years, 301 patients were invited. Of them, 172 (57.1%) were males. The mean age was 30.6 years. In 244 (81.1%) of the cases, the diagnosis was schizophrenia or schizoaffective, and in 57 (18.9%) cases, the diagnosis was bipolar disorder. In total, 77 patients (25.5%) accepted to participate in the psychoeducational groups. Completion of the program was defined based on participation in more than 50% of psychoeducational sessions. Based on this definition, the dropout rate was 35% (Figure.1).

OPEN IN VIEWER

Figure 1.

Percentage of dropout in service users.

Despite providing the hospital clinicians with the information regarding these new services, less than 10% of participants were referred by their clinicians.

Discussion

The patient and family psychoeducation program at Roozbeh Hospital has continued providing services to patients suffering from severe mental disorder and their families, with developed resources (trained professionals and manuals in Farsi language).

Looking into the feasibility of such a program in a routine practice shows a number of important factors effecting the implementation phase and sustainability of services. Acceptability or how the recipients of those delivering the intervention perceive and react is one aspect to consider (Brooke-Sumner et al., 2015). This program had low referral rates, with the main referral source being two psychiatrists who participated in the service development part of the program. Skills and attitudes of clinicians delivering the intervention and clinicians who are responsible for the referral of patients and their families could be one factor to look at in regard to referral rate (Bucci, Berry, Barrowclough, & Haddock, 2016; Eassom et al., 2014). In the first stage of service development, some of our colleagues and residents were not aware of the services. Despite using different strategies to engage the psychiatrists in the referral process, it was not quite successful, and unfortunately the problem still continues. Perhaps, low awareness of the necessity of psychoeducation or beliefs that we cannot explain psychotic symptoms to patients and families underlies this attitude. Therefore, finding strategies to make changes in psychiatrists and residents’ attitude toward non-pharmacological and psychosocial treatments is a challenge in the implementation process. Training and supervision is not enough, as implementing psychoeducation requires a cultural and organizational shift to include patient and family psychoeducation into routine clinical practice (Bucci et al., 2016).

On the other hand, several reasons may affect the low participation rate of patients and their families in psychoeducation. In one study in Italy, 80% of patients with schizophrenia are linked to mental health systems, but only 8% of the families are receiving psychoeducation (Magliano, Fiorillo, Malangone, De Rosa, & Maj, 2006). Another study conducted in three European countries showed that a mean of 41% of patients took part in psychoeducation for schizophrenia in institutions which conducted psychoeducation for patients and 13% of family members compared to 21% and 2% of family members in all institutions who were included in the study (Rummel-Kluge et al., 2006).

Fear of stigma and lack of appreciation of intervention benefits are also barriers to acceptability of services (Brooke-Sumner et al., 2015; Karamlou, Borjali, Mottaghipour, & Sadeghi, 2015).

It is evident that stigma can also influence the acceptance of our invitation. In our experience, this refusal was more evident in female patients (Figure 1, male participation 75%). However, symptom manifestation is more severe in male patients, so those patients and their families might need to get extra help in dealing with illness. On the other hand, male patients also had higher dropout rate compared to female patients who participated (77% dropout; Figure 1). In a qualitative study on experience of stigma in families of patients with severe psychiatric disorder conducted in Iran, one main category mentioned was gender differences. Families who had a female member as patient felt they experienced more stigma compared to male member as patient (Karamlou et al., 2015; Malakouti et al., 2016). This shows that gender difference is another factor that needs to be further explored. This may be due to multiple social roles of women in our culture. Different social roles of relatives are mentioned as a challenge in low- and middle-income countries (Brooke-Sumner et al., 2015) and as another variable contributing to low participation rate of families. Although for families in different studies including research in Iran result shows that the main caregivers are females (Sharifi et al., 2006; Mottaghipour et al., 2009; Mottaghipour & Tabatabaee, in press).

Furthermore, Tehran is a metropolitan city and the distance from the hospital may be an important barrier to receive psychoeducation. There is no defined catchment area in our mental health system and the role of Roozbeh Hospital in the treatment of severe mental illnesses. The hospital is a referral source for patients from any part of Iran. This is one of the barriers and a challenge in providing aftercare services in outpatient settings (Brooke-Sumner et al., 2015).

Because of different levels of function, educational level and the differences in severity of the illness, patients’ interactions and involvement in group activities were different which caused some challenges. More than one-third of families of patients who participated in family education programs are illiterate or have minimum literacy.

Systematic review of feasibility and acceptability of psychosocial intervention research shows low level of education, and the necessity of providing simple content, administrative problems and the differences in emotional expressions in various cultures are some of the challenges in providing psychosocial interventions in low- and middle-income countries (Brooke-Sumner et al., 2015). Another issue was financial problems and the role of insurance in the coverage of psychosocial services.

Therefore, as seen in other studies, limited resources and insufficient administrative support were some of the challenges of our service development (Eassom et al., 2014; Hadryś, Adamowski, & Kiejna, 2011). The limited resources for mental health services in developing countries, particularly at community level is well known (Brooke-Sumner et al., 2015; Malakouti et al., 2016; Sharifi et al., 2006).

Despite providing the hospital clinicians with the information regarding new services, less than 10% of participants were referred by their clinicians. Two authors who worked in adult psychiatry services in Roozbeh Hospital, referred a substantial percentage of patients of this group. Despite using different strategies to engage the psychiatrists in the referral process and reduce dropout, it was not quite successful.

Difficulties in implementation that we encountered such as low level of education of a group of participants, low level of participation due to geographical availability as well as other issues such as stigma, low level of referral of clinicians and training health professionals seem similar to other studies that looked into barriers of implementation. Rate of implementation reported by different studies varied from 0% to 53%, due to the variable related to clinicians, service users and at organizational level. The wide range reflects the fact that implementation is defined differently based on services having been ‘offered’, ‘delivered’ or ‘received’ (Bucci et al., 2016).