Thinking About Electroconvulsive Therapy: The Opinions of Parents of Adolescents with Schizophrenia Spectrum Disorders

Abstract

Objective:

To assess the experience with, knowledge of, and attitudes toward electroconvulsive therapy (ECT) among parents of adolescents with schizophrenia spectrum disorders (SSD) who have received ECT.

Methods:

A self-administered questionnaire was used to assess the experience with, knowledge of, and attitudes toward ECT in a sample of parents of adolescents diagnosed with SSD. Parents of adolescents treated with ECT before the age of 18 years (ECT group; n = 19) were compared with a randomly selected group of parents of adolescents treated only with antipsychotics (No ECT group; n = 20).

Results:

Most parents in the ECT group claimed that they had received adequate information about the ECT procedure (94.7%), most of them thought it had been helpful for their children (73.7%) and none thought that it had made things worse. The large majority of parents in the ECT group (80%) thought that the illness had been worse than ECT or medication, and none thought that ECT was the worst. Parents in the ECT group generally had better knowledge of what ECT is and its indications. All the parents in the ECT group (100%) and almost all of those in the No ECT group (94.7%) would agree to the treatment for their children if recommended in the future by a doctor, there being no differences between the groups in this respect (p = 0.447). Most parents in the ECT group (88.9%) thought it was a legitimate treatment when used appropriately, an opinion that was held by a much smaller proportion of parents in the No ECT group (52.6%), although the remaining parents in that group were unsure about it (47.4%).

Conclusions:

Most parents of adolescents with SSD treated with ECT had positive views about the treatment. Parents of adolescents treated only with antipsychotics tended either to have positive views about ECT or claimed to have no knowledge about it, with negative views being uncommon.

Introduction

Electroconvulsive therapy (ECT) has been shown to be a safe and effective treatment in adolescents diagnosed with schizophrenia spectrum disorders (SSD), depression, or bipolar disorder and who are resistant to pharmacological treatment or intolerant of medication. Its efficacy and safety have also been demonstrated in patients with catatonia and neuroleptic malignant syndrome. (Rey and Walter 1997; Walter and Rey 1997; Bloch et al. 2001, 2008; Stein et al. 2004; Suzuki et al. 2006; Baeza et al. 2010; de la Serna et al. 2011; Flamarique et al. 2012; Flamarique et al. 2015a).

Despite this, ECT remains a controversial treatment and it is underused in the pediatric population (Ghaziuddin and Walter 2013; Bernardo and Urretavizcaya 2015). Several explanations for this have been proposed in the literature, including the negative views of the general population and professionals toward ECT (Ottosan et al. 2004; Ghaziuddin and Walter 2013). Studies of public opinion regarding ECT have reported that in most cases people consider the treatment harmful (Ghaziuddin and Walter 2013). In one telephone survey, only 1.2% of participants considered ECT a helpful treatment (Lauber et al. 2005).

Moreover, the public and some professionals still lack accurate information about the current practice of ECT. One study that investigated the opinions of psychiatrists in Spain found that 100% of those working in units where ECT is available favored its use, but among those in hospitals that did not have ECT this figure fell to only 36% (Bertolín Guillén et al. 2001). Some authors have claimed that people's negative attitudes about ECT have mostly been influenced by film portrayals of ECT, which tend not to depict the actual procedure (McDonald and Walter 2009; Ghaziuddin and Walter 2013).

Interestingly, attitudinal studies of adolescents who had been treated with ECT before the age of 18 years show that they hold more positive views about the procedure than do the general population (Walter et al. 1999b; Taieb et al. 2001; Kalman et al. 2008; Flamarique et al. 2015b). By contrast, most adolescents treated only with antipsychotics either did not know about or did not have a clear opinion regarding ECT treatment, although they did not hold negative views about it (Flamarique et al. 2015b).

There is limited research regarding attitudes toward ECT among relatives of patients who have been treated with ECT. A few studies have focused on relatives of adult patients treated with ECT (Tang et al. 2002; Rajkumar et al. 2006; Virit et al. 2007; Malekian et al. 2009; Chakrabarti et al. 2010; Rajagopal et al. 2012, 2013; Li et al. 2015), it being reported that relatives generally have more positive views about ECT than patients do, and also that they are better informed and more satisfied with the treatment (Rajkumar et al. 2006; Chakrabarti et al. 2010; Rajagopal et al. 2013).

There are only three studies that have assessed attitudes toward ECT among relatives of patients not treated with ECT, and all of them concern adults (Grover et al. 2001; Chavan et al. 2006; Dan et al. 2014). These studies have found, in general, that a high proportion of patients' relatives had negative views about ECT and that their knowledge about the ECT procedure was generally poor. One of these studies compared the views about ECT of relatives of adult patients who had received ECT with the opinions of relatives of patients who were undergoing psychiatric treatment but had never been treated with ECT (Grover et al. 2011). The authors found that relatives of the ECT recipients had significantly more positive attitudes toward ECT, whereas the relatives of nonrecipients of ECT were more often critical of or ambivalent toward it (Grover et al. 2011).

There are only two studies that have included relatives of adolescent recipients of ECT so as to assess their opinions about the treatment (Walter et al. 1999b; Taieb et al. 2001). In the study by Walter et al. (1999b), 28 parents were interviewed using a 56-item survey to assess their views about ECT. The majority of parents (75%) said that they had received adequate information about ECT from health professionals. More than half (60%) of the parents believed it had been helpful, and a large majority (85.7%) would support further such treatment if recommended in the future (Walter et al. 1999b). Taieb et al. (2001) interviewed 10 adolescents who had undergone ECT treatment for a severe mood disorder, and also their parents (n = 18). Parents' experiences of and attitudes toward ECT were generally positive. All of them thought that it had been helpful and 83% would agree to it for themselves or their child if recommended in the future (Taieb et al. 2001).

Overall, the evidence regarding views about ECT of relatives of recipients is generally positive. However, there are only two studies of parents of adolescent recipients of ECT, and sample sizes are small. It is essential to study the views of parents of adolescents who are treated with ECT, as they are an important component in the process of consenting to the treatment, especially when their children present a severe disorder that limits their own ability to assent to a given treatment. To our knowledge, there are no published studies that have explored this issue in parents of adolescents with early-onset SSD treated with ECT, and which compare their views with those of parents of adolescents with SSD treated only with medication.

The aim of this study was to assess the experience with ECT among parents of adolescents with SSD who had received ECT before the age of 18. Specifically, questions such as whether they had received adequate information about ECT, they had been scared, they thought ECT treatment was safe and had been helpful were asked. A further objective was to compare their knowledge and attitudes with those of a sample of parents of patients with early-onset SSD treated only with medication. For this purpose, questions regarding aspects of their knowledge, their source of information about ECT, whether they would agree to the treatment in the future or if they thought the treatment was legitimate were asked.

Methods

Subjects and procedure

All subjects diagnosed with SSD between 2003 and 2012 and who had been treated with ECT or antipsychotics before the age of 18 were reviewed. They had all been admitted to the inpatient ward of the Child and Adolescent Psychiatry Department of the Hospital Clinic in Barcelona. Of a total of 325 patients hospitalized with a diagnosis of psychosis, 164 were diagnosed with SSD at 1-year follow-up. Of these 164 patients, 131 were treated only with medication and 33 with ECT plus medication (A mean of 3.3 adolescents treated with ECT per year). Of the latter, 21 patients had been included in a previous study that evaluated the long-term safety and effectiveness of ECT, while 19 had participated in a study that gathered their views about ECT (Flamarique et al. 2015a; Flamarique et al. 2015b).

Of the 33 patients treated with ECT, three patients and their parents could not be contacted and nine refused to participate in this study. In a further two cases, patients and their parents attended the research appointment but did not want to recall the episode that had required hospitalization and ECT treatment, and they did not complete the questionnaire about their opinion of ECT. Finally, 19 (57.57%) parents of patients (one parent per patient) who had been treated with ECT agreed to participate in this study (ECT group). Fifteen patients (78.9%) had received ECT due to lack of response to antipsychotics, and four patients (21%) due to catatonic symptoms. On average they had been treated with 2.83 ± 0.85 antipsychotics before ECT. In all cases it was the first course of ECT treatment.

The control group was selected, using the stratified randomization method (Suresh 2011), from among the group of patients with SSD who had been treated only with medication (n = 131). Of the 38 patients randomly selected from the list and contacted by phone, 3 could not be located and 15 refused to participate in this study. The methodology is further explained in a previous study (Flamarique et al. 2015a). The comparison group thus comprised 20 parents of 20 patients (No ECT Group). A total of 39 parents of patients were therefore included in this study.

The study was approved by our hospital's Ethical Review Board. Follow-up assessments were carried out with all patients who agreed to participate, and written informed consent was given by patients and parents.

Assessment

Two self-administered questionnaires (containing 50 and 26 items, respectively) were used to assess the experience with, knowledge of, and attitudes toward ECT of parents of adolescent patients with SSD. The 50-item questionnaire was a Spanish version of the instrument developed by Walter and Rey (Walter et al. 1999b), who gave their permission for the translation. The 26-item questionnaire was an abridged version of the 50-item questionnaire and was employed to assess the views about ECT of parents belonging to the No ECT group. Twenty-four items that asked about their child's experience with ECT had been removed.

The socioeconomic status of the sample was estimated with the Hollingshead Redlich Scale (Hollingshead and Redlich 2007).

Clinical improvement in the ECT group was assessed using the Positive and Negative Syndrome Scale (PANSS) before and after ECT treatment. The PANSS is a 30-item rating scale that aims to assess the symptom severity of subjects with psychosis. It is subdivided into three subscales—positive, negative, and general psychopathology—and a total score (Kay et al. 1987). Each subscale and the total score are all evaluated from one to seven according to the severity of the symptoms. Responders were defined as those showing a 20% fall in PANSS total scores after ECT compared with baseline (Schooler et al. 2005).

Data analysis

Descriptive statistics (percentages, means, and standard deviations) were calculated to summarize the results. Sociodemographic variables and responses to the questions regarding knowledge of ECT and medication were compared between the two groups using the Fisher's exact test or t-test, as appropriate. The Kolmogorov-Smirnov and Levene tests were applied to assess the normality of the sample distribution and the equality of variances. Data were analyzed using SPSS v20.0.

Results

Sociodemographic and clinical characteristics of the sample

The groups did not differ in terms of socioeconomic status. Neither were there differences between groups in relation to the children's gender, diagnosis, or duration of illness. However, statistically significant differences were observed in the mean age at symptom onset, with the children of parents in the ECT group being younger. A comparison of sociodemographic data between groups is shown in Table 1.

Table 1.

Comparison of Sociodemographic and Clinical Variables Between Groups

Sociodemographic and clinical variables	ECT group (n = 19), n (%) or mean ± SD	No ECT group (n = 20), n (%) or mean ± SD	t ^a /χ²	p-Value
Gender (patients): male	10 (50)	8 (42.1)	0.244	0.432
Diagnosis (patients)
Schizoaffective disorder	5	4	0.219	0.716
Schizophrenia	14	16
Socioeconomic status	3.05 ± 1.47	2.38 ± 1.53	1.312	0.199
Age at symptom onset (years) (patients)	14.79 ± 1.43	16 ± 0.85	3.213	0.003
Duration of illness (years) (patients)	5.68 ± 2.31	4.7 ± 2.4	−0.301	0.201

t-Test.

χ², chi square test; ECT, electroconvulsive therapy.

Regarding response to ECT treatment, using the PANSS scale, a total of 17 patients (89.4%) had responded to ECT and only two (10.5%) had not.

Parents' experience with ECT (ECT group)

A large majority also said that they had received adequate information regarding the procedure from health professionals (94.7%), with only one parent answering “don't know” to this question (5.3%). Most of them also thought that the treatment had helped their children (73.7%), three parents (15.8%) claimed that it had not helped much, and two (10.5%) did not remember. None of them said that it had made things worse.

Most parents believed that their children were not scared about the treatment before the first session (68.4%), and only three thought that they were very scared (15.8%). However, when asked whether they themselves were scared, most parents said that they were very scared (52.6%), and only three were not scared (15.8%).

What parents found most upsetting about the ECT procedure for their children was the intravenous placement for anesthesia: 38.9% found it very upsetting and 16.7% a little bit upsetting. Waiting for the treatment was experienced as very upsetting by 16.7% and a little bit upsetting by 22.2%. People (other family members or friends) discovering that their child had undergone ECT was reported as upsetting by only one parent (5.3%), whereas more than half of the parents (58.8%) said that this was not upsetting at all. A total of 68.4% said that they had not tried to hide the fact that their child had received ECT, although most of them had only talked about it with close friends and family (84.2%).

Regarding side effects, more than half of the parents claimed that their children had had side effects with ECT (57.9%), and most of them (89.5%) also reported side effects associated with medication. Parents were specifically asked whether their children had presented with headaches, muscle ache, nausea, confusion, or memory impairment, and whether they felt that ECT, medication, or both had caused them. As regards side effects attributed to ECT by parents, confusion was the most commonly reported, together with memory impairment. Confusion was also the most common side effect reported by parents in relation to medication. No differences were observed between side effects reported with ECT or with medication. Comparative data regarding side effects reported with ECT or medication are shown in Table 2.

Table 2.

Comparison Between Side Effects Reported with Medication or Following Electroconvulsive Therapy by Parents

ECT group parents	Medication, n (%)	ECT, n (%)	p-Value ^a
Side effects present
Yes	17 (89.5)	11 (57.9)	0.076
No	2 (6.3)	6 (31.6)
Headache
Yes	6 (31.6)	7 (36.8)	1
No	11 (57.9)	10 (52.6)
Don't know	2 (10.5)	2 (10.5)
Muscle ache
Yes	6 (31.6)	6 (31.6)	1
No	12 (63.2)	11 (57.9)
Don't know	1 (5.3)	2 (10.5)
Nausea/vomiting
Yes	3 (15.8)	5 (26.3)	0.328
No	16 (84.2)	12 (63.2)
Don't know	0	2 (10.5)
Confusion
Yes	10 (52.6)	11 (57.9)	0.794
No	8 (42.1)	6 (31.6)
Don't know	1 (5.35)	2 (10.5)
Memory
Improved with treatment	5 (26.3)	5 (26.3)	0.188
Worsened with treatment	3 (15.8)	8 (42.1)
No changes	7 (36.8)	2 (10.5)
Don't Know	4 (21.1)	4 (21.15)

Fisher's exact test.

ECT, electroconvulsive therapy.

Most of the parents reported that the worst thing of all had been the illness (80%); two of them said that it had been the medication (10%) and two did not know (10%). None of them said it had been the ECT.

Parents were given the opportunity on the questionnaire to make additional comments about ECT. Several parents wanted to have more information about the treatment. One parent said that “ECT saved my daughter.” Another parent wanted to know whether she had done the right thing by giving her consent for ECT.

Comparison between groups regarding knowledge about and attitudes toward ECT

Regarding knowledge about ECT, all parents in the ECT group and 60% of parents in the No ECT group knew that it is a treatment that “uses electric current to induce a seizure.” However, in the No ECT group, two (10%) parents thought “it is a brain operation,” two (10%) said “it is a form of brain washing,” and four parents answered “don't know.” Differences were found between the groups (p = 0.003). There were also differences between the groups regarding what parents thought were the indications for ECT (p < 0.001). Most parents in the ECT group thought that it is usually used for schizophrenia (n = 18, 56.2%), depression (n = 10, 31.2%), and/or mania (n = 4, 12.5%). In contrast to parents in the ECT group, half of those in the No ECT group did not know what the treatment is used for. The remaining half of the parents in the No ECT group said that its indications are schizophrenia (n = 10, 38.5%), depression (n = 3, 11.5%), mania (n = 2; 7.7%), and to control unacceptable behavior (n = 1, 3.8%).

Most parents in both groups had heard about ECT from health professionals, although three (12.5%) in the ECT group and six (30%) in the No ECT group had also heard about it through the media. There were no differences between groups in this respect. Regarding the safety of the treatment, more than half of the parents in the ECT group thought that it was safe, while most parents in the No ECT group answered “don't know.” Only one parent in the ECT group thought it was not a safe treatment. When asked whether ECT could cause permanent damage, two parents in the ECT group answered “yes,” although almost half of them believed it did not have any lasting negative effects. No differences were found between the groups in this respect, although most parents in the No ECT group answered “don't know” to this question. As for whether ECT is more dangerous than medication, most parents in the No ECT group did not know the answer, but six (31.6%) parents in the ECT group thought this was the case (p = 0.002). Data comparing knowledge between groups are shown in Table 3.

Table 3.

Comparison of Knowledge About Electroconvulsive Therapy Between Groups

Questions about knowledge	ECT group, n (%)	No ECT group, n (%)	p-Value ^a
Where did you learn about ECT?
1. From other patients who have had it	0	0
2. From relatives and friends	2 (8.3)	1 (5)	0.434
3. From doctors and/or other health professionals	19 (79.2)	13 (65)
4. From books, radio, TV and films	3 (12.5)	6 (30)
5. Never heard of it/I don't know	0	0
How common do you think it is for an adolescent to have ECT?
1. Rare	14 (73.7)	13 (65)	0.480
2. Common	1 (5.3)	0
3. Don't know	4 (21.1)	7 (35)
Do you think that ECT is a safe treatment?
0. No	1 (5.3)	2 (10)
1. Yes	11 (57.9)	1 (5)	<0.001
2. Don't know	7 (36.8)	17 (85)
Do you think ECT leaves a person with permanent damage?
0. No	9 (47.4)	6 (30)	0.114
1. Yes	2 (10.5)	0
2. Don't know	8 (42.1)	14 (70)
Do you think ECT is generally more dangerous than medication?
0. No	6 (31.6)	0	0.002
1. Yes	6 (31.6)	3 (15)
2. Don't know	7 (36.8)	17 (85)

Fisher's exact test.

ECT, electroconvulsive therapy.

Regarding attitudes toward ECT, all parents in the ECT group reported that they would agree to ECT for their children if recommended in the future. Furthermore, six of them would agree to it right away (31.6%). Most parents (94.7%) in the No ECT group would also agree to ECT for their children in the future, such that no differences were found between the groups in this regard. Parents were also asked if they would agree to the treatment for themselves. Most parents in both the ECT group (94.7%) and the No ECT group (84.2%) said that they would agree to having ECT if recommended by a doctor. When asked whether ECT should be given to young people, almost half of the parents in the ECT group answered “yes,” while a large majority of those in the No ECT group answered “don't know.” The majority of parents (88.9%) in the ECT group and half of the parents in the No ECT group thought that ECT was a legitimate treatment when used in appropriate situations, with this difference being statistically significant (p = 0.007). Data for both groups regarding attitudes toward ECT are shown in Table 4.

Table 4.

Comparison of Attitudes Toward Electroconvulsive Therapy Between Groups

Questions about attitudes	ECT group, n (%)	No ECT group, n (%)	p-Value ^a
How soon would you agree to ECT for your child if recommended in the future?
1. Would agree to it right away	6 (31.6)	3 (15.8)
2. Would agree to it if medication or other treatments didn't work	13 (68.4)	15 (78.9)	0.447
3. Would not agree to it under any circumstances	0	1 (5.3)
Under what circumstances would you agree to ECT for yourself if your doctor recommended it?
1. You would agree to it right away	4 (21.1)	3 (15.8)	0.761
2. You would agree to it if medication or other treatments didn't work	14 (73.7)	13 (68.4)
3. You would not agree to it under any circumstances	1 (5.3)	3 (15.8)
Do you think that ECT should be given to young people?
0. No	2 (10.5)	1 (5)
1. Yes	9 (47.4)	3 (15)	0.035
2. Don't know	8 (42.1)	16 (80)
Do you think ECT/medication is a legitimate treatment when used in appropriate situations:
0. No	1 (5.6)	0
1. Yes	16 (88.9)	10 (52.6)	0.007
2. Don't know	1 (5.6)	9 (47.4)

Fisher's exact test.

ECT, electroconvulsive therapy.

Discussion

The main findings of this study are that parents of adolescent recipients of ECT had positive views about the treatment. Most parents in the ECT group said that they had received adequate information about the ECT procedure, and most of them thought it had been helpful for their children. They did not report more side effects with ECT than with medication. The large majority of parents in the ECT group thought that the worst thing had been the illness, and none thought it was the ECT.

Regarding knowledge about ECT, there were differences between the two groups, with parents in the ECT group being more knowledgeable about the procedure and its indications than were those in the No ECT group. In terms of their attitudes toward ECT, both groups of parents generally held positive attitudes. A large majority of parents in both groups would agree to the treatment for their children in the future if recommended by a doctor. Most parents in the ECT group thought it is a legitimate treatment when used appropriately, and although fewer parents in the No ECT group held this view, at least 50% of them did think it was legitimate.

Overall, the finding of adequate knowledge and positive attitudes toward ECT observed in the ECT group is consistent with previous studies involving relatives of adults and adolescents who had received ECT (Kerr et al. 1982; Walter et al. 1999b; Taieb et al. 2001; Tang et al. 2002; Rajkumar et al. 2006; Virit et al. 2007; Malekian et al. 2009; Rajagopal et al. 2012). Most parents of adolescents with SSD in our study who had not received ECT also showed positive attitudes toward the treatment, and fewer of them had negative views about ECT than has been reported in studies of relatives of adult patients not treated with ECT (Chavan et al. 2006; Grover et al. 2011; Dan et al. 2014). No studies have previously assessed the views about ECT of parents of adolescents with SSD treated only with antipsychotics.

Parents' experience with ECT

A large majority of the parents in the ECT group said that they had received adequate information about the ECT procedure and treatment, the exception being one parent who answered “don't know.” This is consistent with previous studies of parents of adolescent recipients of ECT (Walter et al. 1999b; Taieb et al. 2001), and also with two previous studies that assessed the adequacy of information received by adolescent patients (Walter et al. 1999a; Kalman et al. 2008). By contrast, two other studies that have addressed this issue with adolescent ECT recipients reported that half of the patients were not sure whether they had received adequate information (Taieb et al. 2001; Virit et al. 2007; Flamarique et al. 2015b). It appears that most studies of parents or relatives of ECT recipients find that, compared with their children, they are more likely to report having received adequate information before ECT, and this is also a fairly consistent finding in opinion studies of relatives of adult patients treated with ECT (Chakrabarti et al. 2010). One possible explanation for the difference between parents or relatives and patients could be the mental condition of the latter before receiving ECT.

Most parents in our sample regarded ECT as helpful (73.7%), and none of them thought that it had made things worse. This is in line with previous studies of both patients who had undergone ECT before the age 18 and their parents, in which most parents and patients felt that the treatment had been helpful (Walter et al. 1999a; Walter et al. 1999b; Taieb et al. 2001; Kalman et al. 2008; Flamarique et al. 2015b).

Over half the parents in the ECT group (52.6%) were very scared about the treatment before it being given, and they were much more scared than what they imagined their children to be. Only three parents (15.8%) said that their children were very scared. This contrasts with what their children actually said, reported in a previous study: six (31.6%) patients said that they were very scared and five (26.3%) a little bit scared (Flamarique et al. 2015b). What parents found most upsetting about the ECT procedure was the intravenous placement for anesthesia, as reported previously by their children (Flamarique et al. 2015b). Interestingly, only one parent was upset by other people discovering that his/her child had received ECT. By contrast, Walter et al. (1999b) reported that half the parents had attempted to conceal the treatment.

Appropriate education with more comprehensive information about ECT for patients and families and a discussion of all patients' and parents' fears would be helpful to diminish their fear of ECT. We also favor distributing written information such as brochures, educational DVDs, or website pages that provide accurate information and showing the facilities to the families, to improve their attitudes toward the technique. Talking to someone who had received ECT could also help.

Regarding side effects associated with ECT, more than half of the parents reported side effects (57.9%), this being similar to the reports of adolescent patients themselves (Flamarique et al. 2015b). Overall, parents reported fewer side effects than has been documented in previous studies, except for confusion, which was more commonly reported in our study (Walter et al. 1999b; Taieb et al. 2001). No statistically significant differences were observed between side effects reported with ECT or with medication by parents in our study. This is in line with a previous study in which no differences were observed between side effects reported with ECT or medication, except for headaches, which were more commonly observed with ECT than with medication (Walter et al. 1999b).

Most parents in the ECT group (80%) felt that the illness was more aversive than was medication or ECT. A similar proportion of the parents of adolescent ECT recipients (78.57%) reported the same in Walter's study (Walter et al. 1999b). One parent in Walter's study nominated ECT as the worst experience, whereas in our study none did.

Comparison between groups regarding knowledge about and attitudes toward ECT

All parents in the ECT group generally had adequate knowledge about what ECT is. This is consistent with the findings in Walter's study, in which all parents of adolescent patients understood that ECT is a treatment that entails an electrically induced convulsion (Walter et al. 1999b). In the study by Taieb, however, most parents of patients who had received ECT did not have adequate knowledge about the ECT procedure (Taieb et al. 2001). The comparison between parents in the ECT group and those in the No ECT group showed that the former had more knowledge about ECT, a finding that is in line with a study by Grover et al. (2011) in an adult sample: these authors also found that relatives of ECT recipients were more knowledgeable than were relatives of a No ECT group (Grover et al. 2011). Furthermore, when we compare parents' knowledge with that of their children, fewer children treated with ECT (63.2%) had adequate knowledge than did their parents (100%) (Flamarique et al. 2015b). Interestingly, in the No ECT group the percentage of parents and children who had adequate knowledge about the procedure was similar (60% and 66.7% respectively) (Flamarique et al. 2015b).

There were also differences between the groups in terms of what they thought the indications for ECT were. Parents in the ECT group believed that ECT is used mainly for schizophrenia, and also for depression and mania, whereas half of the parents in the No ECT group did not know what the indications for ECT were. Moreover, one parent in the No ECT group thought that it was used to control unacceptable behavior. In a previous study of parents of adolescent patients receiving ECT, most parents thought that ECT was used to treat depression (Walter et al. 1999b), although this could be explained by the fact that most patients in that sample were diagnosed with a mood disorder, whereas in our sample all patients were diagnosed with SSD. A further difference is that two parents in Walter's study said that ECT was used to control behavior, while none of the parents in our ECT group thought so.

Taking into account parents in both groups, most of them had heard about ECT from health professionals (82% of the total sample), while nine (23.07% of the total sample) had also heard about it through the media. These results differ from those of a previous study in which a higher percentage of parents (n = 19, 67.85%) cited the media as a source of information, with 10 of them mentioning the film One Flew Over the Cuckoo's Nest (Walter et al. 1999b). Another more recent study of adult patients and their relatives, but in this case where the patients had not received ECT, also showed that the main source of information about ECT was the media (Dan et al. 2014). The authors of this study also reported that knowledge was generally poor among relatives, although those who had obtained their information about ECT from doctors were more knowledgeable than were those who had obtained information through the media (Dan et al. 2014).

It is important to emphasize that the media does not usually depict the actual ECT procedure (McDonald and Walter 2009). In our sample, health professionals were the main source of information for both groups, and this could explain, in part, why more than half of the parents in both groups had adequate knowledge about ECT.

When asked whether ECT is a safe treatment, most parents in the ECT group answered “yes,” whereas parents in the comparison group were not sure and answered “don't know.” This is in line with Walter's study of parents of adolescents who had received ECT, in which most relatives believed that ECT was a safe treatment (Walter et al.1999b). Fewer parents (5.1% including parents in both groups) in our sample thought that ECT could leave permanent damage than was the case in Walter's study of parents of adolescent ECT recipients (17.85%), although in both studies the percentage is low (Walter et al. 1999b).

An interesting finding of this study is that all parents in the ECT group and 94.7% of parents in the No ECT group would agree for their children to have ECT in the future if recommended by a doctor. This percentage for parents of ECT recipients is slightly higher than what was found in previous studies (83% in Walter et al. 1999b; 85.7% in Taieb et al. 2001). The percentage is also higher than what the children themselves had reported in a previous study by our group: 84.2% for those who had received ECT and 80% for adolescents treated only with antipsychotics (Flamarique et al. 2015b). Furthermore, 94.7% of parents in the ECT group and 84.2% of those in the No ECT group would agree to having the treatment themselves were it to be recommended by a doctor in the future. These proportions are higher than the corresponding figure reported by Walter et al. (1999b) for parents of adolescent ECT recipients, although the percentage (78.57%) was also high in their study.

Consistent with this finding, 88.9% of parents in the ECT group thought that ECT was a legitimate treatment when used in appropriate situations, a very similar proportion to that reported by Walter et al. (199b) with parents of adolescents treated with ECT. In Walter's study, 86% thought it was a legitimate treatment (Walter et al. 1999b). Half of the parents (52.6%) in our No ECT group also thought that ECT was a legitimate treatment, while the other half did not know. Our findings regarding attitudes toward ECT for the No ECT group are also relevant, as most studies with parents and patients with no previous experience of ECT have reported a lack of adequate knowledge and negative attitudes toward the treatment (Chavan et al. 2006; Grover et al. 2011; Dan et al. 2014). One possible explanation for these findings is the source of information about ECT, with the main source for most parents in both groups being health professionals. It could be that the stigma associated with ECT in previous decades is slowly changing, and that more appropriate sources of information, such as doctors, are facilitating more favorable views about the treatment, thus leading to fewer misconceptions.

This study has several limitations, not least the small sample size resulting from the fact that ECT is not commonly prescribed in adolescents. Another limitation is that due to the considerable amount of time that had passed since the ECT sessions, parents may have had problems recalling the details of the procedure and any side effects related to it. We should also consider those parents who did not participate in the study and who may have had negative views about the treatment. Another aspect to consider, and one that has generated controversy in previous studies, is the possible reluctance of patients and parents to reveal their true attitudes to the doctors who treat them (Rose et al. 2003). To overcome this, parents were recruited by a different health professional to the one who had treated their children, and parents answered the questionnaires privately.

This study also has several strengths. It is the first to compare the views about ECT of two groups of parents: parents of adolescent ECT recipients and parents of adolescent patients treated only with antipsychotics. Furthermore, adolescents were matched by sex, age, duration of illness, and diagnosis.

Conclusion

In conclusion, our data show that parents of adolescents with SSD treated with ECT had generally positive views and adequate knowledge about ECT. Parents of adolescents treated only with antipsychotics tended also to hold positive views about ECT or claimed to have no knowledge about it, whereas negative views were uncommon.

Clinical Significance

These findings may help fight the stigma associated with ECT and may be enlightening for patients and families who are recommended ECT in the future. Adequate education and training regarding the nature of ECT among health professionals, including medical students, nurses, residents, and psychiatrists, is essential to enable them to provide accurate information to families and patients about the treatment. An ECT training program should include observing ECT treatment and didactic lectures. It could be that education of patients and families about ECT obtained through appropriate sources of information, such as health professionals who had received adequate training, may also be important to counteract the treatment's currently unfavorable image.

Footnotes

Acknowledgments

The authors thank all the patients and their families for participating. They also thank Garry Walter and Joseph Rey for their permission to use and translate the questionnaires.

Disclosures

I.F., E.d.l.S., A.P., and J.C.-F. affirm that they have no conflicts of interest. M.B. received consulting fees from Bristol-Myers Squibb-Otsuka, Wyeth and Janssen-Cilag. I.B. has been a speaker for Janssen and has received travel support from Otsuka.

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