Mothers’ Reports of Their Involvement in Early Intensive Behavioral Intervention

Abstract

Although numerous studies examine the effectiveness of intensive behavioral intervention programs (EIBI) for young children with autism, few focus on the family aspect of the program. In particular, involvement of mothers in the program, which is strongly recommended, is the subject of only a small number of studies. The goal of this research is to identify the forms of involvement adopted by mothers whose child follows an EIBI program. Thirteen mothers of children with autism receiving EIBI services were questioned through semistructured interviews. The results demonstrate that maternal involvement can take various forms and that these forms may vary from those usually described in the literature.

Keywords

autism spectrum disorder (ASD)early education programs involvement of families parents applied behavior analysis

Over the last few years, many researchers developed intervention programs to help children with an autism spectrum disorder to improve their functioning. Among these, early intensive behavioral intervention (EIBI) became increasingly popular. Developed by Lovaas (1981, 1987) in the 1980s, EIBI’s objectives are to enhance children’s deficit behaviors, such as language and positive social behaviors, and reduce disruptive behaviors. Many studies over the last years have demonstrated the effectiveness of EIBI programs in improving the IQ, language, and behavior of children with autism (Cohen, Amerine-Dickens, & Smith, 2006; Lovaas, 1987; for a review see Makrygianni & Reed, 2010). The program is based on a behavioral procedure (Anderson, Taras, & O’Malley Cannon, 1996), requires a ratio of one intervener per child, must be put in place as early as possible, and ideally, is carried out for between 30 and 40 hr per week (Lovaas, 1987; see also Leaf & MacEachin, 1999, and Maurice, Green, & Luce, 1996).

Parental Involvement

Numerous studies have demonstrated that parents’ involvement in the various educational and rehabilitation processes yield positive results in the development of children and in the success of intervention programs (Dunlap, Newton, Fox, Benito, & Vaughn, 2001; Fan & Chen, 2001; McConachie & Diggle, 2007). EIBI is not an exception, and parental involvement is strongly recommended, for instance, by the National Research Council report (2001). Some authors also state what forms of involvement are expected from parents. In his program, Lovaas (1987) requires that parents apply the EIBI program with their own child, at the rate of 10 hr per week. This enables a greater number of weekly intervention hours, which in turn may help to improve children’s cognitive, language, social and adaptive skills (Sallows & Graupner, 2005; Sheinkopf & Siegel, 1998). We must mention that Lovaas (1987) does not require parents to manage the EIBI program but rather to apply it, the same way a regular educator would, under the supervision of a professional.

Other forms of involvement are also recommended in EIBI. Some authors insist on the importance of the generalization of acquired knowledge, which entails the application in day-to-day life of objectives and techniques used within the framework of structured EIBI sessions (Dunst, Trivette, & Snyder, 2000; Lovaas, 1987; Scott & Baldwin, 2005). Indeed, as early as 1973, Lovaas, Koegel, Simmons, and Long demonstrated empirically that children who were institutionalized after intensive behavioral therapy regressed and lost their gains, while such learning was retained by those who went back home to parents previously trained in intervention. In addition, the National Research Council (2001) mentioned that early intervention programs for autism require that parents take part in supervisory meetings while professionals are present. This is also the case with EIBI: Lovaas and Buch (1997) indicated that parents are expected to attend supervisory meetings and can have the last word with respect to the content of the intervention program.

Parents and EIBI

In spite of the aforementioned recommendations, very few studies have looked into the parents’ experience of EIBI. Some of these studies demonstrated that parents of children with autism experience a much higher level of stress than other parents (Hastings & Johnson, 2001; Moes, 1995). Hastings and Symes (2002) looked especially into how mothers apply the EIBI program with their child with autism. They found that the perception of self-efficacy, an important variable of the therapist’s efficiency, is affected by the severity of autistic symptoms in their child, the lack of support from the EIBI team, and the high level of stress suffered by the mother.

A qualitative study performed by Grindle, Kovshoff, Hastings, and Remington (2009) highlighted the difficulties encountered on a day-to-day basis by parents with children receiving EIBI services at home. Results indicated that these parents often encounter (a) administrative difficulties, (b) problems with educators (recruiting, conflicts, turnover of personnel), and (c) negative effects on brothers and sisters (lack of attention from the parents, reduction of family activities because one parent must stay home with his child during the EIBI program). These results gave a new slant to the conclusions of Remington et al. (2007), whose findings showed no apparent change in the well-being of parents who implemented an EIBI program.

Even though the aforementioned studies provided interesting information about some aspect of parenthood in a context of EIBI, none of them focused on parental involvement. Until now, only one study specifically focused on this subject. Solish and Perry (2008) developed a questionnaire to evaluate parental involvement while examining the various forms at hand, that is, (a) communication with educators, (b) involvement in supervisory meetings, (c) perusal of the program content, (d) implementation of formal EIBI sessions, (e) fostering generalization of acquired knowledge, and (f) management of behavioral disorders in the same way educators would. This study also concluded that parental involvement is linked to the feeling of parental self-efficacy, the knowledge of EIBI by parents and their perception of the program.

Although these studies determined that parents of young children with autism should be involved in EIBI and should do it in a specific way, and that some factors may interfere with their involvement, none of them revealed how parents are really involved in their day-to-day life. The goal of this exploratory research was therefore to identify the specific roles adopted by mothers of children with autism in the EIBI program. We chose to examine exclusively the mothers’ situation because many studies have concluded that mothers are more likely than fathers to get involved in their children’s care and education (Coltrane, 2000; Grolnick & Slowiaczek, 1994; Yeung, Sandberg, Davis-Kean, & Hofferth, 2001). Moreover, a number of variables differ markedly depending on gender, regarding both predictors of parents’ involvement (Gavidia-Payne & Stoneman, 1997) and perception of their involvement (Coley & Morris, 2002).

Objectives of the Study

The objective of this study was to identify the forms of involvement adopted by mothers in the context of early intensive behavioral intervention. Given the scant information available regarding parental involvement in EIBI, this research is intended to be essentially exploratory, seeking to answer the following questions:

In what way(s) do mothers participate in the EIBI program?

How do they live out this new role, depending on the form of involvement adopted?

Method

We conducted 13 semistructured interviews with mothers of young children with autism for the purpose of identifying the principal themes emerging from their comments about their involvement with their child’s EIBI program. The interview as a whole revolved around mothers’ experience following the start of the EIBI program as well as their perceptions of the program. The approach of this article centers specifically on parental involvement.

Participants

The recruitment took place in a Rehabilitation Center for Intellectual Deficiency and Invasive Developmental Disorders in the Greater Montreal area. At the time of the study, 76 children received EIBI services. However, we solicited only families whose child would be ending the EIBI program during the current year, to ensure that they had been involved long enough to take advantage of the program’s benefits and would have an informed opinion about their experience. A letter outlining the research project was sent to the 25 families at the end of the program. The letter invited mothers interested in participating to contact the research team to arrange for an interview. Thirteen mothers eventually contacted us and agreed to participate in the study. All mothers who expressed interest were met; none of the families were excluded from the study.

The mothers interviewed constituted a homogeneous group on certain characteristics. All children were 5 years old, except for a 6-year-old and a 4-year-old, and all but one were boys. All mothers lived together with their child’s father and had at least one other child. They all came from a relatively advantaged socioeconomic background. On the other hand, the diagnostic profiles of their child were more varied, spanning autism, high-functioning autism, and pervasive developmental disorder not otherwise specified (PDD-NOS). The mothers’ work situations also varied: seven were unemployed at the time of the interview, two worked part-time, and the last four held full-time jobs. Three mothers came from other than a Canadian ethnic background. Although the majority of the children received approximately 20 hr of EIBI per week, some families received between 7 and 10 hr of intervention weekly, whereas others also received private services that brought their hours of EIBI intervention up to 35 per week. Four families received EIBI at home, two at the day care center, one on the premises of a rehabilitation center, and six in more than one location (e.g., home and day care center). More details about the participants are presented in Table 1.

Table 1.

Participant Characteristics

Mother	Lives with a spouse	Employment status	Child’s age (years)	Child’s diagnosis	No. of siblings	Intervention length (years)	Intervention location	No. of hours of intervention per week
1	Yes	Unemployed	4	Autism & ADHD	2	1	Readaptation Center	20
2	Yes	Unemployed	5	Autism	1	1	Home	20
3	Yes	Full-time worker	5	PDD-NOS	1	1	Kindergarten	7
4	Yes	Unemployed	5	Autism	1	1	Home	10
5	Yes	Full-time worker	6	Autism	1	3	Home	20
6	Yes	Part-time worker	5	Autism	1	1.5	Home and Kindergarten	10
7	Yes	Full-time worker	5	Autism	3	1	Home	20
8	Yes	Full-time worker	5	Autism	1	1	Kindergarten	20
9	Yes	Unemployed	5	PDD-NOS	1	1.5	Home and Kindergarten	20
10	Yes	Unemployed	5	Autism	2	1	Home and Kindergarten	10
11	Yes	Part-time worker	5	Autism	3	2	Readaptation center	35
12	Yes	Unemployed	5	Autism	1	2.5	Home and Kindergarten	20
13	Yes	Unemployed	5	PDD-NOS	1	1	Kindergarten	20

Abbreviations: ADHD, Attention-Deficit/Hyperactivity Disorder; PDD-NOS, Pervasive Developmental Disorder–Not Otherwise Specified.

Characteristics of EIBI in Quebec

Rehabilitation Centers for Intellectual Deficiency and Pervasive Developmental Disorders offer a maximum of 20 hr of EIBI per week without charge to all children under 6 years of age who have a pervasive developmental disorder diagnosis (Quebec Ministry of Health and Social Services, 2003). Thus, although most parents have access to this service without charge, some still turn to private resources because of long waiting lists, which can reach 2 years. Trainings are sometimes offered to parents by the Rehabilitation Centers and some private clinics; however, these institutions have no obligation to offer such instruction. One of the rules established by the rehabilitation center taking part in the present study is the requirement for a third person to be present at home when the educator is engaged in intervention with the child. For this reason, nine mothers in the sample were present at home for some of the intervention sessions.

Interview Grid

An interview form was drawn up to explore various aspects of the experience of the parents. The first and third authors drafted the questions after the consultation of the literature pertaining to the application of EIBI programs and parents of children with autism as well as annual assessments of the greater Montreal area’s rehabilitation centers. Two family service directors from Montreal’s rehabilitation centers were interviewed with respect to the parents’ perception of the EIBI program and problems encountered in the application of the program. The second author, a researcher for women’s health, and the fourth author, a specialized researcher in pervasive developmental disorders, revised the final interview grid. The interview covered the experience of mothers of a child receiving an EIBI program and included questions on the nature of the program (e.g., length, number of hours per week, type of objectives targeted), their perception of interveners (e.g., effectiveness, satisfaction), their child’s progress (e.g., language, social, behavioral), the mother’s physical and psychological health (e.g., stress, anxiety, depression), support that was received, and the parent’s involvement in the EIBI program. Figure 1 presents the questions specific to maternal involvement.

Figure 1.

Interview grid.

Procedure

A meeting was arranged by telephone, either at the mother’s home or on rehabilitation center premises. The first and the third authors, doctoral students in psychology who had previously held the position of an EIBI intervener, conducted the interviews. Each interview lasted approximately 1 hr. All the questions of the interview grid were asked to all the participants, but in a semistructured way. The interviewers sometimes modified the wording and the order of questions to ensure a better understanding from the participating mothers, or to allow mothers to express their emotions on more sensitive themes. All the interviews were recorded and two research assistants later transcribed the exact verbatim of the interviews. These assistants were not aware of the study’s objectives and received prior training with respect to confidentiality. The first author verified one interview for each assistant to make sure there was no major error.

The information contained in these transcriptions was then processed according to thematic analysis procedure by the first and third authors. By definition, qualitative analysis “attempts to develop understandings of the phenomena under study, based as much as possible on the perspective of those studied” (Elliot, Fischer, & Rennie, 1999). Thematic analysis is one of the multiple techniques one can use to analyze qualitative content. This method uses open coding to analyze empirical data in order to let emerge the main themes from a text and then to organize them in a meaningful matter (Attride-Stirling, 2001). One can analyze in a descriptive fashion the content present in the data (semantic themes); it is also possible to analyze the subordinate ideas (latent themes; Boyatzis, 1998; Braun & Clarke, 2006). Thematic analysis is not associated with any particular theoretical approach and may be used in flexible fashion to analyze various types of content (Boyatzis, 1998). We followed the six steps suggested by Braun and Clarke (2006) for effective employment of a thematic analysis (see also Attride-Stirling, 2001, for a similar description of thematic analysis procedure). After the interviews’ transcription, each verbatim was read several times in order to become more familiar with all its content. We then divided each interview into units of meaning. A unit of meaning could consist of a word, a phrase, or an entire paragraph; nonetheless, each unit had to consist of a single idea or concept. After completion of the coding phase, we classified the units of meaning based on common themes (in this case, different forms of involvement). After this first sorting of units of meaning, we reorganized the themes to better represent the data as a whole: thus, we divided some forms of involvement into subthemes; we added some categories and removed others. For example, the interview grid contains questions relating to the mother’s degree of satisfaction with her degree of involvement. The lack of variability in the mothers’ answers did not impart diverging categories, resulting in this theme being excluded. Moreover, we combined two categories, namely, the transmission of information to family members and the link between the various participants, to create one category that is the transmission of information in general. We then designated each overarching category according to its content, and a written analysis of the constituent elements of each theme could be prepared. The first author coded half of the interviews whereas the third author coded the other half. The second author revised the whole coding, which was the subject of numerous group discussions to ensure an unbiased analysis.

Results

Content analysis of mothers’ responses to questions dealing with their role in the EIBI enables identification of eight forms of parental involvement. These categories are not mutually exclusive. Table 2 presents the eight forms in order of frequency, ranging from most frequent to least frequent responses (see Note 2). Each form of involvement is detailed below.

Table 2.

Forms of Involvement

Form	No. of mothers	Example
Everyday application of principles	13/13	“We call ourselves behaviorist parents. We do generalization in the evening; we do it on weekends, too. That helps the child absorb it all.”
Participation in supervisions	12/13	“The supervisor came every 2 weeks for discussion with us and the educator about what had been done, if there was a problem.”
Acquiring knowledge about IBI	9/13	“One day I didn’t know what to do anymore. So I called the program coordinator. He called me back, and it was then that he offered me the 3-days training.”
Transmitting information between various interveners	8/13	“I would say that I am pivotal. I’m the one who provides the link between speech therapy, ergotherapy, day care, and home, because I’m the one who goes everywhere.”
Applying the program with the child	4/13	“We were already doing a lot of EIBI at home. All through the program, the CRDI educators were doing 15 hr and I was doing 20.”
Helping the interveners	3/13	“My role in EIBI is to collaborate with the educator. If she has certain special requests. To go in the same direction that she is setting. Like when she needed reinforcements, when she needed changes in the office.”
Influencing the way the program unfolds and its quality	3/13	“Sometimes, I’m the one to say, ‘We can just take a walk today. You can stop, we’re going to have an ice cream, it’s Friday.’ Or I tell the educators during the summer, ‘Bring your bathing suit, we’re going to work in the pool and talk, it’s Friday.”
Attending the EIBI sessions	0/13	“I didn’t attend the meetings because I didn’t want to bother anyone. The educator told me, ‘If you want to come that doesn’t bother me.’ But it always bothers me a little to interfere with the child’s concentration. It’s tempting to just slip through so I didn’t go much.” (M7)

Forms of Maternal Involvement

Everyday application of principles

All the mothers in the sample reported that they applied EIBI’s guiding principles—such as reinforcement, consistency in guidelines, and formulation of requests—in everyday life. These principles generally seem to have been well assimilated by the mothers and applied on a regular basis. Two mothers even came forward on their own and asked educators what they could do to pursue the work with their child. One of them explained, “Before the holiday, I said, ‘Is there something I can do so that William doesn’t lose what he’s acquired?’”

These mothers seemed very conscious of the fact that using the same material as educators and pursuing the same goals is necessary for their child’s integration of all learning processes; otherwise the intervention will not be as effective: “They have a logical way of doing their routine. So I also have to put that in place. If not, it’s not going to work.” However, the mothers interviewed clearly distinguished between everyday generalization of acquisitions and more formal application of EIBI to develop new skills in their child. One of them even specified, “We do normal intervention in daily life. But I won’t start to show him his letters. [. . .] In terms of EIBI, there are definitely things to work on every day. But doing school, no, not that.”

Participation in supervision

Another form of involvement that was very widespread consisted of attending supervisory meetings. These meetings sometimes took place at home and sometimes in the center where the EIBI program was conducted (e.g., premises of the Rehabilitation Center, day care). Almost every mother reported attending all or most meetings with the supervisor. Two mothers mentioned that this allowed them to keep up to date about what their child was learning: “We have to know what points they’ve reached in the programs to apply them as well.” Another mother added that supervision meetings are an opportunity to give their opinion and make suggestions with regard to the future course of the program: “I said to the EIBI team, ‘You should try such-and-such because he likes that.’ [. . .] the child’s personality, I’m the one who knows about that.”

However, whether a mother was employed full-time or not seems to be a determining factor regarding her ability to participate in these meetings. The fact of being a stay-at-home mother who did not have to miss work on a regular basis was definitely an advantage: “I can’t say that it was a heavy burden because I wasn’t working. I just had my little baby to take care of, that’s all. I would go to the supervisory meetings.”

Acquiring knowledge about EIBI

Nine parents acquired knowledge of EIBI through training. This training allowed them to better understand the underlying reasons for each intervention and is described by the mothers as a “good basis” for enabling them to interact effectively: “My husband went for a day of training. He found it very interesting. The educator told him, ‘If you come, you’ll understand what we’re doing!’” Overall, parents who were able to receive some training appreciated the experience very much. Not only did the training allow them to acquire new knowledge but it gave them some time off to share with other parents living the same situation: “It provided a respite. I learned a lot of things and I met other parents.” Unfortunately, it seems that access to such training was not easy for all the mothers interviewed. It appeared that the rehabilitation center did not offer such a training on a regular basis: “The training for EIBI, I just had it in February. Theoretically you get it at the beginning of the program, but they had to cancel it.” Another added, “I would have liked to have some training. It’s something I missed.”

Transmitting information between various interveners

Eight mothers mentioned taking on the role of a “liaison agent” within their child’s EIBI program. This role entailed facilitating communication between two or more individuals working with their child to ensure that all were working in the same direction. However, the exact function of individuals taking on this liaison role could vary from one mother to another. For some, this role involved transmitting elements of the EIBI program to other professionals involved with their child, such as a speech therapist, an occupational therapist, or a day care educator. Some mothers also indicated the occasional necessity to “build a bridge” between the different EIBI educators intervening with their child. In their opinion, acting in this capacity not only made everyone’s work more effective but also ensured that all interveners were working in adequate fashion: “My partner and I see ourselves [. . .] like the coordinators of the whole operation. We have to see that there’s linkage between what’s worked on in EIBI, and what’s worked on in occupational therapy and what might be worked on at school.”

On the other hand, for some mothers, the liaison role involved transmitting information to their child’s father who, in most cases, was less involved with the intervention than the mother: “My husband, when something happens, right away he says ‘Go to your room, you’re being punished.’ Then I tell him, ‘No, you mustn’t do that because in EIBI they’re working on that.’” For one mother, this same role is even assumed toward the extended family: “My mother is close to the children so I often summarize a little of the program for her.”

Applying the program with their child

Four of the 13 mothers interviewed were directly involved with the application of the program with their own child. These mothers chose to implement the intervention themselves, the same way an educator would. They took on this role after receiving the diagnosis and while on the waiting list to obtain services from the rehabilitation center: “During the waiting list period I was on maternity leave. So the first 6 months it was my partner and I who performed the interventions for 30 hr a week.”

Barriers encountered by parents who were applying the EIBI program

According to the verbatim content collected, these mothers generally found the experience emotionally difficult, for a variety of reasons. The fatigue entailed in carrying out this kind of intervention was frequently cited: “Before, when I was doing EIBI, I felt it as an obligation. I sacrificed myself. It was like a huge weight on my shoulders.” Another element making the application of EIBI complicated for mothers was the parent–child relationship, which underwent a change. Indeed, two participants noticed that their status as mother prevented them from being as effective as the educators, who occupied a different role toward the child. One mother explained, “When you do 20 hr of intervention a week, you become an educator, and you’re unsure about regaining your role as a parent.” Two mothers also mentioned that acting as an educator with their child prevented them from giving more time to the other children in the family: “The other child is there, too, and he wants equal time. You have to be fair.” One mother mentioned another problem related to combining the roles of mother and educator: possibility of development of conflict with the rehabilitation center’s intervention team. She explained, “I think that the EIBI team isn’t going to seek out a role for parents. [. . .] I’ve never told anyone what to do, I directed the team just a little, maybe not directed but guided” (M11).

Three mothers who acted as interveners quit that role when the EIBI services began. They reported feeling greatly relieved about no longer having to play a dual role: “I used to do it but now I don’t anymore. There comes a time when you realize you can’t do everything.”

Helping the interveners

Another role reported by three mothers involved being on hand and available to help the interveners during or after the intervention sessions, a form of involvement we choose to call “helping.” Mothers who told us they had adopted this role did not directly intervene with their child themselves but considered it their responsibility to be at the educator’s disposal when needed: “I help when [. . .] there are things to get, when she needs someone standing by, that’s when I’m going to come. I participate as needed, when the educator needs me. But otherwise, no.” Although this role was not brought up frequently by these mothers, the way it was described leads us to believe that certain mothers hesitated to take a significantly active part in the intervention. The mothers who did report taking on this type of role seemed to consider the EIBI team as specialized experts and, therefore, preferred not to take too prominent a place in the intervention themselves.

Influencing the way the program unfolds and its quality

Although mentioned less often, three mothers considered themselves to have taken on a “supervisory” role regarding the EIBI program and the intervention unit. This role translated itself into making decisions about the way the sessions unfolded, managing the educators’ schedule, or verifying the work accomplished: “When I returned from work, I checked everything that had been done during the day.” One of the mothers interviewed took this role a step further, considering it her duty to fight for her son to have the best services possible: “I spent 6 months writing letters to all legislators, to the rehabilitation center, to the [Quebec legislature’s] Protecteur du citoyen, and to Quebec’s bureau of handicapped persons.”

Attending the EIBI sessions

This form of involvement was often mentioned but never implemented. Most mothers said they had been invited to attend their child’s EIBI sessions with the educator, but none of them implemented this form of involvement on a regular basis. They mentioned several reasons, such as the fear of disturbing educators while they were working or difficulties in reconciling work and family: “In any case, I wasn’t able to go to the office and observe the intervention. Those services are terrific but, unfortunately, not adapted for working people. It’s not adapted for a working mother and a working father.” For one of the mothers, the difficulty in accepting her son’s diagnosis made this period too difficult to deal with:

I could have been present for the intervention. There is a windowed room with mirrors and everything. I didn’t because I just couldn’t. I still have difficulty with the diagnosis. It’s hard for me, You could say that I just see the delays. So since I’m not present, the educator just tells me about the good things.

Discussion

This study explored the diverse forms of involvement adopted by mothers within the framework of an EIBI program. The most widely adopted form was application of intervention principles in daily life, followed by participation in supervisory sessions, acquisition of knowledge concerning the program, acting as liaison between various interveners and with other family members, direct application of the program with their child, assistance given to educators, and a “supervisory” role regarding the EIBI team. Another form of involvement, attending the EIBI sessions, was often mentioned but never applied by the mothers in our sample.

Several of the forms of involvement described in this study correspond to those mentioned in the literature on this question. Such is the case regarding the role of application of the program directly with the child, the generalization of EIBI principles in daily life, and attendance at the supervision meetings (Lovaas, 1987; Lovaas et al., 1973). Other forms of involvement more extensively documented concerning the school environment were also reported, including communication with the intervention team and acquisition of knowledge about the program (Benson, Karlof, & Siperstein, 2008). However, our study also shows that maternal involvement can take other forms that have not been documented before, such as helping the educators, “supervising” the EIBI team, or attending the EIBI sessions. These forms of involvement were less common than the others; however, for some mothers they were their main role in the EIBI program. In the future, it will be important to take into account the variety of forms that a mother’s involvement can take and to include these forms in studies about the efficiency of involvement or its predictors. Earlier studies on EIBI often took for granted that parents’ involvement consisted essentially in applying the program and generalizing their child’s learning; our qualitative study shows that the parents’ view might be different. This view needs to be considered to get a complete picture of parental involvement in EIBI.

Application of formal EIBI sessions by the parent is often presented as the main form of involvement expected (Lovaas, 1987), yet the results of our study would indicate that this form of involvement is binding for parents to adopt. The mothers in our sample described many barriers to their adopting this role, notably fatigue and the difficulty of allowing enough time for their work and for their other children when involved in this fashion. Mothers also cited barriers inherent in assuming the roles of both mother and intervener with their own child; indeed, these roles often struck them as incompatible. Reflection is evidently called for regarding ways to translate this role into concrete reality, in a context where mothers of children with autism are already subjected to extremely high levels of stress (Hastings & Johnson, 2001; Schwichtenberg & Poehlmann, 2007). The advantages of having the parents give some extra hours of EIBI to their child are undeniable, but the results of this study suggest that it may require supervision and enhanced support by the intervention team, as suggested by Smith, Buch, and Gamby (2000).

We should also note that the descriptions mothers gave of their role within the framework of the team varied widely. Based on an analysis of the different forms of involvement described by the mothers, it would have been extremely difficult for us to classify their involvement on a hierarchical grid in terms of the “level” or intensity of their involvement. For example, some mothers spent only a few hours a day with their children but used that time to stimulate them and work on program objectives. Others spent their days at home and involved themselves by assisting the intervener who was carrying out the EIBI at home. What needs to be questioned is the practice of measuring intensity of involvement based on the number of hours spent with their child or on the number of structured interventions performed by mothers. Numerous studies related to parental involvement measure this concept in terms of intensity or frequency (Benson et al., 2008; Gavidia-Payne & Stoneman, 1997; Schwichtenberg & Poehlmann, 2007; Solish & Perry, 2008). The results of this study raise the possibility that this type of measurement yields an incomplete picture of involvement, because some parents may adopt many different forms of involvement within the day, but for only a few minutes. It would be useful to think over the evaluation of maternal involvement and to create new measurements of involvement that integrate the number of intervention hours with the types of involvement to describe the concrete tasks carried out by mothers when they get involved in the treatment program.

Limitations and Future Research

This study has certain limitations. The small size of our sample (N = 13) and the homogeneous profile of the participants makes our sample unrepresentative of mothers of children with autism receiving EIBI services. Generalization of these results to all the parents who are dealing with EIBI is impossible and was not the aim of this qualitative study. Another limitation is that the interviews conducted with the mothers did not deal specifically with their involvement but rather with various aspects of EIBI, such as the characteristics of the program, the relationship with the educators, or their experience with the waiting list. It is possible that some aspects relating to maternal involvement could have been more fully explored if the entire interview had been devoted to that subject.

This study was exploratory and mainly dealt with the forms of involvement applied by mothers on a daily basis. The information reported here constitutes a first step toward understanding the mechanisms contributing to parental involvement herein. However, many questions still remain unanswered. According to the mothers interviewed, a number of factors seemed to influence maternal involvement, such as lack of knowledge and training, fear of bothering the interveners, negative perception of their child’s skills, lack of time because of employment or the presence of other children, and difficulty in reconciling the roles of mother and educator. These comments differ somewhat from predictors mentioned in research dealing with EIBI and with parental involvement in general, including parental stress, perception of the program, severity of child’s impairment, and parents’ educational level and socioeconomic status (Benson et al., 2008; Gavidia-Payne & Stoneman, 1997; Grolnick & Slowiaczek, 1994; Lowitzer, 1989; Solish & Perry, 2008; Useem, 1992). It can be hypothesized that maternal involvement in the specific context of EIBI may have its own predictors.

Otherwise, many forms of maternal involvement were identified in this study. Much research has focused on the efficacy of parent-directed EIBI (Sheinkopf & Siegel, 1998; Smith et al., 2000) but none has ever investigated the possible benefits of other forms of involvement. It is of the utmost importance to determine the effectiveness of each modality on children’s development by measuring its effect on the health and well-being of the mother as well as their child.

Implications for Clinicians

The results of the present study may be useful to clinicians and educators working with families of a child with autism. For example, they should make sure that mothers get training and support to correctly generalize their child’s learning in their daily lives. Special attention should be granted to mothers who apply the EIBI program by themselves, especially if they are waiting for services. Psychological support and professional supervision may be offered to avoid the discouragement observed for some mothers of our sample. Members of the EIBI staff may be more aware of the difficulties that mothers are experiencing when the program starts and thus should encourage them to give their opinion in supervision meetings.

The data collected are unclear as to whether mothers spontaneously adopted the forms of involvement mentioned previously, or were urged to do so by the EIBI team. Nonetheless, the results of this study have convinced us that it would be helpful if mothers, as well as interveners, were informed of the many different forms that parental involvement in EIBI can take. The intervention team should attempt to determine which forms of involvement best suit each mother they serve by helping the mothers to evaluate the advantages and disadvantages associated with each type of involvement. This kind of partnership would enable mothers to clarify their role and avoid developing the sense of guilt and of low skills that had developed in certain mothers in our sample. As mentioned by Zellman and Perlman (2006), the provider’s efforts to support involvement should be as important as the parents’ efforts to be involved.

Solutions could be found for more difficult forms of involvement such as attending the EIBI sessions. Mothers might be invited to attend these sessions occasionally, or the sessions could be videotaped so they could watch them at their convenience. Other family members, for example, the grandparents, might also be involved in the program to help the parents.

Research results round out well the studies performed on the quality of life of a parent dealing with a child showing signs of developmental issues, as evidenced by Summers et al. (2007). The results of this research indicate that within an early intervention context, a suitable partnership between parents and educators plays the role of a mediating variable between the parents’ satisfaction about the program and the level of the parent’s quality of life. Service providers should therefore look for ways to maximize parents’ involvement while fostering the various forms of involvement that are referenced in this study for the purpose of creating a solid partnership with families of children they assist. Such an approach would greatly contribute to improve not only children’s quality of life but that of the parents as well.

Footnotes

Acknowledgements

The authors thank Roland Granger and Danielle Dagenais for their help in the revision of this manuscript.

Declaration of Conflicting Interests

The author(s) declared no conflicts of interests with respect to the authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research and/or authorship of this article: This study was funded by the “Programme d’aide financière à la recherche et à la création” of Quebec’s University of Montreal.

Notes

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