Qualitative process evaluation of a psycho-educational intervention targeted at people diagnosed with schizophrenia and their primary caregivers in Jordan

Worldwide, schizophrenia is a serious form of mental illness that strikes people in adolescence or early adulthood [1] and is listed as the eighth leading cause of disability-adjusted life years (DALY) in people aged 15–44 years. It is estimated that the economic cost of treating schizophrenia totaled approximately €93.9 billion across Europe in 2010 [2]. Interventions which reduce the morbidity and mortality burden associated with schizophrenia are therefore important and have received critical attention [3].

Data derived from a recent World Health Organisation (WHO) report, suggests that 305 individuals per 100,000 of the Jordanian population suffer from mental illness, this equates to approximately 18,300 individuals, of whom around half have a diagnosis of schizophrenia [4]. In addition, mental health services in Jordan are not well prepared to provide basic care for mentally ill people compared to developed countries. For instance, the number of psychiatric beds in Jordan is limited to around 8.27 beds per 100,000 of the population. Mental health professionals in Jordan face high workloads, with as many as 150–200 service users visiting clinics daily [4]. In Middle Eastern countries, including Jordan, the number of people who live with schizophrenia is about 3.5 million [5]. The lack of specific documentation reflects the basic infrastructure of the mental health system, which remains nascent, as well as the failure of mental health services to undertake appropriate documentation or conduct non-pharmacological specialised care [4].

Family interventions have been developed in response to the fundamental part that families play in supporting relatives diagnosed with Schizophrenia; 50%-80% of PDwS live or have daily contact with their families [6]. The theoretical rationale for these family interventions stems from previous studies showing that PDwS who live with families that have high emotional expression (EE) are more likely to relapse than those who live in low EE families [7, 8]. For instance, when the family caregivers expressed a high EE (hostility, emotional over involvement and critical comments) towards their mentally ill relative, it led to a higher relapse rate [9, 10]. Reviews of family intervention studies targeted at PDwS and their primary caregivers have consistently demonstrated positive impact on PDwS’ knowledge of schizophrenia, social, and functional recovery [8]. Psychoeducational interventions are the commonest approaches with families in developed countries [11]. The PEI model focusses on teaching PDwS and their PCs about schizophrenia, treatment, medication and managing side effects, creating low environmental stress through problem-solving strategies and coping mechanisms for illness symptoms and disruptive behaviour. Further information about the PEI used can is published elsewhere [12].

Whilst PEIs have used a variety of formats including face-to-face lectures and seminars and online, a less intrusive and more cost-effective method of providing psycho-education interventions to PDwS and their primary caregivers using a booklet format was designed for use in Jordan. The rationale for this choice was based on the practicalities of delivering this type of intervention in the wider healthcare context in Jordan. Financial constraints prevented the current study paying costs for participants to travel to sessions, as has occurred in some previous studies [10, 11], moreover provision of these costs would not be supported in an ongoing manner following study completion. In addition, and perhaps more importantly, low engagement, and high attrition rates have been seen with studies that have employed face-to-face formats [12, 13]. There is significant social stigma towards mentally ill people and their families in Arab ‘cultures’ which could deter participants from attending PEI in a face-to-face format [14, 15]. The lack of consistent and reliable internet connections also made the use of online delivery of material impractical. As a result, the research team adopted the booklets supported by follow-up phone calls to disseminate PEI, this format was considered to be more consistent and less demanding and intrusive in terms of participants’ lifestyles thus, overcoming the barriers previously associated with didactic or online formats.

Beliefs about the aetiology of mental illnesses vary across communities and cultures worldwide; some view schizophrenia as a character weakness and as laziness or punishment for not respecting ancestors [16–18], whereas others attribute mental illness to sudden fright, possession of evil spirits, use of magic, head accidents, bad genes, emotional trauma, punishment from God, or the ‘evil eye’ [19, 20]. Such beliefs about the causes of mental illness result in social stigma with the view that mental illness is the result of a person’s weak faith [21] or is punishment for one’s sins [22]. This stigmatisation of mental illness is often associated with a reduction in those affected seeking treatment from a mental health service, engaging in rehabilitation interventions, and adhering to medication [23, 24]. Similarly, young people with mental illnesses are often reluctant to seek treatment due to the fear that self-disclosure may be perceived as an individual weakness or may bring shame to one’s family [25]. In addition, in Arab countries, the distinction between physical and psychological health is not common, and has not been as historically prevalent as in so-called Western Countries. Arab-Muslim literature reveals that Arab-Muslims do not distinguish emotional or psychological distress from physical illness, and a majority of the population tend to somatise their illness, presenting physical symptoms to express an emotional disorder [19, 26, 27]. Consequently, treatments for mental illnesses are often sought from traditional and spiritual healers to the exclusion of professional mental health services [21], as they are perceived as less stigmatising and are widely considered suitable by clients. This finding is consistent with a qualitative study of Iranian families to explore their lived experience about mental illness showing family relatives’ understanding of mental illness was influenced by myths and used traditional methods as the first line of treatment [13].

Data from our recent RCT demonstrated that PDwS who received PEIs and treatment as usual (TAU) had better knowledge of schizophrenia, fewer psychiatric symptoms and fewer relapses compared with matched controls receiving TAU. In addition, PCs who received PEI and TAU reported better knowledge of schizophrenia, reduced burden of care and improved quality of life than PCs receiving TAU. The positive effects of PEI were maintained post-intervention and at 3 months follow-up in PDwS and PCs [28]. These findings are consistent with those from Iran [14], but this study used a randomized controlled trial solely and how the PEI influenced participants outcomes could not be established.

The RCT method is considered the gold standard to evaluate the effectiveness of the intervention (independent variable) on participants’ outcomes (dependent variable) through dealing with bias [29]. Whilst the RCT is considered a powerful method to provide a picture about the effectiveness of an intervention, it cannot provide an understanding of why particular responses are given. Using process evaluation however, allows the researcher to reflect on data collection, to add a deeper understanding of the phenomena under study and to determine the processes that may mediate any observed intervention effects [30]. The UK Medical Research Council guidelines for developing and evaluating complex interventions, such as RCTs, recommend integrating process evaluations alongside outcome data to maximise the interpretation of the outcomes [30]. Process evaluations can allow for the examination of participants’ views on the intervention, investigation into any contextual factors and determination of processes that may mediate any observed intervention effects [30, 31]. The use of qualitative methods have been recommended to explore and understand peoples’ experiences and perceptions of healthcare interventions in order to understand more about the dynamics of participation. This study reports the results of a process evaluation which used semi structured interviews to explore the acceptability and processes underlying any observed effect of the PEI.

Previous data examining participants’ experiences of PEI, is scarce. One previous study, reported improvements in knowledge of schizophrenia and in family caregivers’ attitudes towards their relative’s illness [32] but did not include PDwS in the qualitative component of the study. Data collection in this study was through focus groups rather than by interview, which may have inhibited family caregivers' ability to talk freely about sensitive issues in front of other participants. The only published work conducted with PDwS, emphasised the importance of the nature of the information received in the PEI but did not examine potential processes [33]. This study provides the first comprehensive investigation of the impact, and potential mechanisms underlying this impact of PEI. The study addressed the research question “How do participants (PDwS and PCs) experience the delivery of PEI?”.

The purpose of this study was to explore the acceptability and processes underlying any observed effect of the PEI on the participants’ outcomes. The intervention was perceived as being valuable in enhancing participants’ knowledge and understanding of schizophrenia as well as promoting their well-being. The findings of this process evaluation corroborated the quantitative findings of the RCT, published elsewhere, that indicated statistically significant effects of the intervention [26].

The qualitative data illuminates how the intervention impacted participants’ knowledge and understanding and how they applied this understanding in their lives to their benefit. The limited knowledge levels of schizophrenia among participants prior to receiving the intervention seen in this study correlates well with previous literature [27–29]. These data clearly demonstrate that the limited knowledge of schizophrenia was associated with self-stigma, shameful feelings and a pre-occupation with negative psychological feelings (i.e. depression, low self-esteem), all of which have been linked with lower treatment adherence [30] and a poor quality of life [31]. The qualitative data reflects the impact of improving knowledge and understanding of illness on self-efficacy, self-esteem and empowerment. The findings also accord with those of other studies that emphasise the importance of an improvement in knowledge in enhancing PDwS and their family caregivers self-efficacy [36] and empowerment [32, 33], which may influence health outcomes [34, 37].

Additionally, the majority of participants who were interviewed explained that the information obtained from the intervention helped them to manage their condition, and that it gave them the courage to confront stress and stigma. Furthermore, in this study, empowerment modified the way participants perceived their illness, and encouraged them to take more control over negative events and to handle internalized stigma better, which may in turn have led to their improved wellbeing (i.e. being less stressed, more optimistic etc.). This finding has much support in the literature, which indicates that improving family caregivers’ understanding of the illness might have assisted them in reappraising caregiving demands and better handling of maladaptive behaviour [38].

Moreover, an understanding of the illness enabled them to know who they are, rather than simply internalise and accept societal prejudices about schizophrenia; they felt they were like other individuals who face problems as a part of daily life and used their skills to handle this. These findings are in accordance with those reported in other studies [35, 36]. In addition, the issues of problem-solving and communication skills discussed in the booklet provided practical strategies to handle challenging situations. Indeed, the themes that emerged from the data reflected the notion that knowledge is power; having an understanding of the illness helped PDwS and primary caregivers to discuss the illness and put questions to mental health professionals, as well as to engage actively in their treatment decision-making process. Commenting on this, others [39] argued that an increase in the awareness of family relatives about medication may lead to their improved medical vocabulary and enable them to ask psychiatrists questions concerning their ill relative.

The importance of knowledge improvement for these study participants lies in its influence on their ability to take an active role in their own treatment regimen, rather than merely being a passive recipient. Therefore, it is likely that the knowledge and skills obtained from the intervention provided PDwS and their primary caregivers with an understanding of the nature of the illness and treatment options, which in turn enabled them to be empowered to discuss suitable medication options with the mental health team. For instance, the interviewed primary caregivers indicated they felt sufficiently confident to discuss suitable antipsychotic medication for their ill relative with psychiatrists. Likewise, this view was also echoed in another study, which concluded that mentally ill people who are uninformed about medication and its side effects are at a higher risk for discontinuation of therapy without proper consultation from psychiatrists [40].

In the current study, primary caregivers had different strategies to handle relapse, such as controlling the stressors in the home environment or increasing medication dosages based on their psychiatric consultation. It should be noted that experts in schizophrenia research estimate that the time interval between early signs and relapse is about one week [41]. Therefore, applying a suitable counter-measure during this interval (one week) could prevent relapse with hospitalisation by increasing medication doses until the precipitating factors have been addressed and resolved [42].

With respect to the relapse prevention, the content of the PEI included in a booklet about the early signs of relapse which may have contributed to the reduction in relapse with hospitalisation. This might have allowed participants to take immediate action in case these symptoms reoccurred. Most of the interviewed primary caregivers expressed their improved ability in monitoring the early signs of relapse and taking suitable actions in order to forestall or prevent relapse progression towards hospitalisation. Another study demonstrated the importance of the ill relative’s close observation for an effective monitoring of early warning signs of relapse [43].

As a corollary, it is therefore possible that knowledge gained from the intervention enabled and empowered study participants to identify environmental triggers of relapse, and to implement relapse prevention strategies earlier rather than later or not at all. In addition, better adherence with medication and adjusting doses with psychiatrists may explain relapse results. Similarly, it was noted this finding was corroborated with other study finding [44], which showed that enlisting primary caregivers who had frequent contact with their mentally ill relatives in the PEI enabled them to detect prodromal signs of relapse and helped in managing stressful situations, as well as supporting medication adherence more than other family relatives.

The notable finding from this study is that most of the interviewed PDwS explicitly linked the improved knowledge of schizophrenia gained from the PEI with the perceived improvements in their coping strategies, especially with regard to the debilitating symptoms of schizophrenia (e.g. hallucinations). This helped them cope with these symptoms in their lives, resulting in improved mental conditions. For instance, some interviewed PDwS utilised a cognitive approach to cope with hallucinations. This is supported by [45], which indicated that teaching PDwS to cope with the symptoms of schizophrenia may enable them to relabel them as harmless symptoms of their illness, or to restructure paranoid thought content. The findings of this study are in line with those of [46], which showed that cognitive, behavioural and physiological strategies were commonly cited among Taiwanese PDwS as ways to cope with auditory hallucinations

Primary caregivers indicated they were able to redefine their relative’s problems and the situations that trigger stress, enabling them to tailor flexible and positive ways of coping. There are similarities between the findings of this study and those described by previous research [47, 48], which showed that an improvement in the family caregiver’s social life was associated with having an improved knowledge of their relatives’ illness. Consequently, there emerged an improvement in their sense of hope and empowerment to be socially active. This finding has much support in the literature, which indicates that improving family caregivers’ understanding of the illness might have assisted them in reappraising caregiving demands and better handling of maladaptive behaviour [38]. It is also important and interesting to note that the primary caregivers reported that their own social interaction was enhanced following the intervention. It may be that the intervention counteracts some of the negative effects of schizophrenia on their social life such as stigma, problematic behaviour of PDwS or emotional problems between participants. The significant improvement in the interviewed primary caregivers’ quality of life could be explained by the fact that the majority of them were female, and females may respond better to emotional and coping-related outcomes in PEIs, as illustrated in Fig. 2 [49].

The findings of this study have implications for clinical practice. From a policy perspective, the findings indicate that this less intrusive and less demanding and more cost-effective format of delivering intervention is as effective as face-to-face formats making it suitable for use in resource poor environments. Therefore, introducing helping resources for PDwS and primary caregivers support antipsychotic medication.

There are some limitations which could affect the transferability of the findings. Firstly, all interviews were conducted by the researcher who recruited participants into the study and implemented the intervention. This may be considered as both a strength and a limitation. It could be argued that the participants may be unlikely to disclose unfavourable opinions of the intervention to the individual that recruited them into the study. However, a number of participants did speak about aspects of the intervention they did not like and felt could be improved. Participants also reported some negative effects of the knowledge gained from the intervention, suggesting that they were able to speak about their experience openly. An alternative view is that participants felt more relaxed being interviewed by an individual with whom they had developed some rapport, enabling them to be more open in terms of their responses. It could also be considered that the inclusion of follow-up phone calls may represent a confounder in terms of understanding the impact specifically of the PEI and may limit the generalisability of the findings. Secondly; the research team was not able to recruit any male primary caregivers’ for interviews, whilst the quantitative study data suggests that males only represented 18% of the PCs recruited to the RCT, this lack of involvement may limit transferability of the findings.

The data from this study suggest that the implementation of this low-cost PEI into routine services should be possible. In terms of impact on the workload of the mental health professionals in Jordan it is suggested that they should allow PDwS and their PCs adequate time to discuss, understand and explore their experiences about schizophrenia, daily problems, coping with illness and antipsychotic medication. This may have a positive impact on satisfaction and adherence to treatment. These suggestions are supported by a growing body of evidence [50, 51]. It is encouraging that the findings of this study showed that the booklet format of delivering PEI, which has neither been tested in a controlled trial nor reported in the literature, demonstrated a similar effect on the mental condition as other forms of delivering PEIs.

Individual understanding varied between PDwS and PCs reciving PEI and led to differences in the ways that they used knowledge gained from the PEI in everyday situations. These data support the importance of improving understanding of schizophrenia by PDwS and their PCs to enable them to benefit more fully from medication.