Facilitators’ perspectives on a psychoeducational program for parents of an autistic child

Description of the program

“Beyond PDD: Parental Skills within My Reach” is a psychoeducational program for parents of autistic children created in Quebec in 2004 and later revised in 2008 by the Centre de Réadaptation en Déficience Intellectuelle et en Troubles Envahissant du Développement de la Mauricie et du Centre-du-Québec – Institut Universitaire, a healthcare and social services institution. This program is based on the acknowledged fact that parents of autistic children play a central role in their child’s development (Guralnick, 2001). Its main goal is to help parents of autistic children under the age of 8 to identify, develop, and update their parenting competences. It offers five, bimonthly, 2.5-h long interventions in groups not exceeding eight participants and is facilitated by two psychologists. In addition, the program includes five individual meetings with an educator, after each group intervention. Each group intervention is focused on a different topic: (1) specific features of an autistic child, (2) post-diagnostic parental adjustment, (3) communication and social relationships, (4) importance of providing the child with a structured environment, and (5) parental emotions and perceptions that impact everyday life (Sankey, Derguy, et al., 2019; Stipanicic et al., 2014). Structured around 31 different activities (theoretical presentations, group discussions, graphic metaphors, introspection, and relaxation-related activities, as well as group, individual, and home exercises), the program provides three handbooks for facilitators, participants, and educators (Sankey, Derguy, et al., 2019; Stipanicic et al., 2014). It was delivered and evaluated in France in several care units and medical institutions from 2013 to 2018 (Cappe et al., under review; Sankey, Girard, & Cappe, 2019). In order to take part in the program, parents have to be able to understand, speak, read, and write in French, for information delivered during the program is provided both orally and in writing. To take part in the research, parents should not be involved in another autism-related intervention for parents and had to have only one child diagnosed with autism in the year preceding their inclusion in the research project (for more details concerning the parents’ characteristics, see Cappe et al., under review, in press; Sankey, Derguy, et al., 2019). In France, some care units dispensed the complete version of the program (five group interventions and individual meetings with an educator), while others dispensed a shortened version of the program (five group interventions only), due to a lack of personnel.

Participants

Participants were psychologists (17 females, 1 male, M age = 38.11 ± 4.74 years old) specialized in autism (eight had a master’s degree, two a PhD in psychology). Half of them worked part-time in the service where the program was implemented. They all had recently dispensed the program at least once (five times maximum) to an average of 4.33 parents (SD = 2.26). Detailed characteristics are presented in Table 1.

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Table 1.

Facilitators’ characteristics (N = 18).

	Complete versionn = 10	Shortened versionn = 8	TotalN = 18
Females, n (%)	9 (90%)	8 (100%)	17 (94,5%)
Number of groups facilitated, M (SD) [range]	1.70 (1.34) [1−5]	1.67 (1) [1−4]	1.78 (1.39) [1−5]
Professional experience as a psychologist in years, M (SD)	6.7 (4.7)	8.3 (3.9)	7.4 (4.3)
Experienced with autistic children or adolescents, n (%)	10 (100)	8 (100)	18 (100)
Experienced with parents of autistic children, n (%)	9 (90)	5 (63)	14 (77.78)
Experience in autism in years, M (SD)	8.1 (5.3)	8.4 (4.2)	8.2 (4.8)
Additional training in
Autism, n (%)	7 (64)	5 (63)	12 (63)
TEACCH, n (%)	2 (18)	4 (50)	6 (32)
PECS, n (%)	7 (64)	4 (50)	11 (58)
ABA, n (%)	1 (8)	4 (50)	5 (26)
Group facilitation, n (%)	3 (28)	1 (13)	4 (21)

ABA: Applied Behavior Analysis; PECS: Picture Exchange Communication System; TEACCH: Treatment and Education of Autistic and related Communication Handicapped Children.

They were given an informative letter about the study and provided written consent to take part in the research. This research was approved by the Conseil d’évaluation éthique pour les recherches en santé (CERES) of the Université Paris Descartes (IRB number: 20135400001082).

Data collection

Three clinical psychologists, familiar with clinical and research interviews, but with no links to the clinical services where the study took place, carried out the 18 interviews: face-to-face (16) or over the phone (2). The 18 interviews recorded lasted on average 68 min. Interviewers followed a structured guideline, complemented by several questions according to the interviewee’s responses(see interview outline in the appendix, available as Supplemental Material), which referred to the program (planning and framework, handbooks and tools), activities, facilitation, participant involvement and group dynamics, program training, and general impressions and recommendations. Given the inductive model that was used here (described below), no bracketing and no reflective journals were used during data analysis.

Data analysis

For this qualitative and exploratory study, we chose a general inductive method (Thomas, 2006). It provides precise procedures to produce knowledge and elaborate meaning from data obtained in an original context. Thomas’ method has three main objectives: (1) concentrate extensive and various text data into a brief summary format, (2) simplify links between research objectives and findings, and (3) build models about the underlying structure of experiences. This approach, derived from grounded theory, can be differentiated by the researchers’ choice to expose categories that emerge from their analysis, instead of elaborating a theoretical model (Blais & Martineau, 2006). Researchers using the inductive approach agree that the intended outcome of coding is to generate three to eight categories, which are meant to capture the most relevant themes given the research objectives (Campbell et al., 2003). It is important to bear in mind that the objective was to explore facilitators’ point of view regarding the delivery of a psychoeducational program for parents of an autistic child. More precisely, we aimed to gather information on the program’s strengths and weaknesses and unexpected situations facilitators came across while delivering the program. To analyze data, the first two authors prepared the transcripts, before thoroughly reading the raw data several times, in order to gain a global perception of emerging themes. First, they each built an individual analysis grid, on three interviews. They met to discuss discrepancies regarding categories’ definitions. They then made sure they were assigning the same text segments to the same categories on the three interviews. They subsequently reviewed the grid. Once the two authors reached consensus, the amended grid was independently applied by each author on all interviews using the free and open-source software Weft-QDA. Following this global analysis, one participant was asked to comment on a preliminary version of the results by email, as recommended by Thomas (2006).

Importance of institutional support and commitment

Institutional support appeared to be a key element in facilitating the program’s implementation, in particular to recruit parents into the groups. First, hierarchical support emerged as a first step in acquiring institutional adherence. Medical team support acted as a pivotal role within certain institutions. Five facilitators reported that medical doctors were greatly committed in recruiting potential participants and explaining the program to families. This involvement was appreciated and perceived as a beneficial way of dividing tasks. More generally, the entire team was seen not only as a precious technical aid but also as a source of psychological support for facilitators:

I felt supported by the institution, even if they were not very actively involved in preparation, it was mostly moral support.

For six professionals, providing a spacious room on a suitable recurring time window was a marker of institutional support. However, this was not the case for other professionals in institutions without sufficient available space. Three facilitators were concerned about the impact of program preparation on their institutional work time. The program was perceived as time-consuming with a necessary period of material preparation, understanding the handbook, and program training.

Six facilitators mentioned that by delivering the program after some of their colleagues, they benefit from a preexisting, well-organized framework that needed no further organization, in comparison with their predecessors:

I was in the third program group in the institution. So . . . I was not really involved in . . . all of those questions referring to the exact location. The space was already pre-defined, the time-schedule was already defined, the day during which the program was held was defined, and participants’ selection had already been done in the first group I co-delivered . . .

As eight facilitators explained, this anticipation was greatly eased by close teamwork between colleagues who had facilitated the program in the past and those who were presently doing so.

Issues related to the program itself

Eight facilitators stated that groups of four parents were ideal to deliver the program, leaving enough time for every participant to exchange during sessions. Ten facilitators considered that leading a group of six parents or more was challenging. The standard of eight parents per group prescribed by the original program was rarely met. A facilitator explained:

The fact that we only had four parents, I think it may be a bad ratio for the institution, but it was a very good ratio for group dynamics because it allowed to soften the gap between the children’s forms of autism.

A facilitator said they could have included more parents, had research participation criteria been less restrictive. Some parents were interested but could not participate because of family and/or professional constraints. An important issue was to schedule the program on a suitable day and time for parents as well as facilitators. Asking parents to come on their days off obstructed the time they had with their child and family. Weekdays did not appear as a solution, as parents would often arrive late after picking up their child at school or coming from work. All in all, finding a time slot during which parents were not with their child was reported as challenging. The issue of providing childcare in the absence of the parent was brought up three times. A facilitator also highlighted that parents who were isolated at home with no childcare services were denied access to the program.

Parents’ demands and participation had a significant impact on the time spent on different activities. This issue often required adjusting and shortening the time spent on some actions, such as scheduled breaks and end-of-session feedback. Nine facilitators would have appreciated to have more flexibility to adapt their intervention to the parents’ expressed difficulties and demands. Exchanges were not always related to the child or autism, but often centered on parental experiences and testimonies. Ten facilitators perceived these parental interferences as a genuine need.

These families do not have the opportunity to exchange. For that matter, they have to capitalize on this time to exchange about their daily lives, to discuss about their worries and challenges.

Five facilitators reported that the time spent on unscheduled free-talks was more important when the question of the child’s diagnosis was involved. Parents would bring forward their personal experiences, which seemed to help them reflect on how the diagnosis affected their family, and compare their experience to the experience of others. These exchanges were not always easily facilitated and could lead to exceeding the allocated time of the workshop by 10 to 30 min. It was also reported twice that, for some parents, psychological support in-between sessions would have been beneficial.

Digressions were never spent speaking about totally different things. They spoke about their lives . . . In any case, it made them move forward on the question of going through the diagnosis, this stage that is described, that is necessary, and that is obviously experienced differently.

Eleven facilitators perceived the need to provide participants with continuity. Three of them suggested offering group meetings or support groups every 6 months after program completion. Two suggested conducting an individualized report to encompass the demands of all parents and answer their questions.

Seven facilitators estimated that the quantity of information was appropriate for 2.5-h sessions, mentioning that extending the program’s duration or density of content could challenge facilitators’ and parents’ energy and focus.

Several issues were raised concerning the program’s content. First, five facilitators reported that activities involving mental imagery, abstraction, introspection, and relaxation techniques could be challenging for some parents, as well as for some professionals. These reflective tools aim to improve the participant’s understanding and awareness regarding uncomfortable or threatening situations he or she may come across. These tools generally enable better memory of relevant information, which is the reason they are used throughout the program and they contribute to the program’s specificity as well.

. . . there are some activities that are not accessible, not really understandable by all families. And when it comes to language, to explaining, I think some families are not used to self-questioning, or to think in a more elaborate or abstract way. Some activities may not be useful, or at least they are not very accessible.

Also, eight facilitators felt parents would have appreciated additional contents, as they regularly brought up specific topics that are not specifically addressed in the program (no workshop was specifically dedicated to these topics), thus displaying their need for more information. For instance, they often asked for information on how to interact with relatives, friends, and strangers, and managing others’ perceptions of their child. Parents’ topics of interest also included behavioral, sleep, and eating disorders, as well as learning difficulties. They also frequently had questions regarding schooling and education. On a broader scale, parents often sought practical solutions to manage their daily lives and deal with the difficulties they encountered.

We feel that everything practical/situational could be worked on more. They [the parents] are keen to get a lot of practical information, on everyday situations, things that work and things that do not. And here, actually, we are on strategies, but we see that they are trying to use what is said for practical situations, to move forward with those elements.

However, although it did not globally impact program delivery, home exercises were not always completed in-between sessions. Three facilitators believed that instructions were not always understood and required further explanations. Additional group time could have helped to ensure a good understanding of instructions. However, parents’ challenging lives may be another reason why they did not always complete homework.

Four facilitators felt the handbook for parents was not adapted to participants who had difficulties speaking, reading, and/or writing in French. As a result, these participants were exposed to failure and left the study after several sessions, as mentioned by one facilitator:

It happened several times. Some just left after one or two sessions. The participants who left had never written, had never participated, and could not really read French well, or write it, or maybe both. It is not adapted to people who cannot read or write in French.

Six facilitators suggested that the handbook for parents should be more visual for people expressing difficulties with language skills. Nevertheless, two reported that even for participants with no particular language difficulties, facilitators had to frequently reformulate and explain content.

In addition, there were significant differences in program training and preparation across formats. Only two facilitators were able to discuss the situations met during the program with peers. Eight facilitators relied on colleagues and peers who had previously facilitated sessions to gather information and personal experiences. Those who did not benefit from this guidance expressed interest in accessing something similar in the future. Three facilitators felt that discussing with colleagues was effective and supportive and they did not express the need to be officially supervised.

Seven facilitators had to review certain theoretical aspects before dispensing the program. Five agreed on the fact that the handbook was not sufficient to facilitate the program without prior training. One facilitator who had the opportunity to watch videotaped sessions said it was a useful way to prepare the program.

Professional background, personal experience, and competences

All facilitators agreed that having a strong background in autism was essential. According to the interviewees, extended knowledge in this domain should include the following: experience in evaluations and support of autistic children, expression of early signs of the disorder, stress adjustment, coping methods, quality of life, and patient care. The handbook did not appear to be sufficient without this background. Furthermore, parents’ specific questions required up-to-date knowledge about autism. Five facilitators specified that it was also important to have clinical experience with parents. Two others reported that being experienced with a population of typically and atypically developing children was of use.

I think it is necessary to have very good knowledge about autism. It is very important to follow current updates, and to know the movement of family associations, their latest fights, their latest claims, to know the governmental plan for autism. Finally, to know the context around autism . . . I find this essential.

Content related to mental imagery was challenging for some facilitators and demanded self-training to adapt reading pace and voice tone. The very structured content also required organization skills. All agreed upon the need to have competences or experiences in group facilitation. Six facilitators viewed competences related to group facilitation as inherent to psychologists’ practices, whereas two thought these skills were not specific to the profession. One facilitator commented,

We need to be at the same time attentive and benevolent, while being sufficiently consistent so that it does not go beyond boundaries, to maintain this psychoeducational notion. It is not a support group session.

This program was co-facilitated, which required psychologists to forge a strong and complementary work alliance. Ten facilitators reported that they did not receive group facilitation training, and seven of them were anxious about delivering the program. Teamwork was seen as beneficial as facilitators felt supported and learned from the experience of their partner:

It was my first group experience and I was happy to see how she presented the theoretical content and connected it to practical examples, so it could give me some ideas. [sic] It also helped me to articulate the content with my practice on the following sessions.

Co-delivery also implied dividing tasks. This was usually achieved according to personal interests and competences. Five facilitators said they inverted task distribution in successive sessions so they could experiment every aspect of the program.

Difficulties linked to parents’ recruitment according to inclusion criteria

Physicians reported that they were frequently involved in recruitment. In some services, physicians were the only professionals informing families on research criteria. In other institutions, recruitment was carried out in a more collaborative manner by preselecting families with the psychologists delivering the program. According to two facilitators, the close involvement of physicians was due to their crucial role in diagnostic evaluations. Indeed, they have facilitated access to families and potential participants. Families were generally informed of the program when physicians noticed that parents had difficulties adjusting to the recent diagnosis. However, two facilitators questioned their involvement in the recruitment process:

When you know the program, you can easily adjust group composition. But doctors that haven’t seen the program cannot know. You can tell when you are familiar with the content, you can quickly imagine what the family can or cannot do. [sic] If I meet a family, I can anticipate if it corresponds to their needs or not. It could be important to associate people who know the program well in the initial recruitment.

Two facilitators reported that parents who had a child in joint custody needed more time to apply the knowledge they received in sessions. They did not necessarily have the child with them regularly or frequently enough to experiment and apply what they had learned.

Five facilitators raised the issue of poor language skills, and writing, reading, and comprehension difficulties that affected some parents’ participation. Several of them left the program. A facilitator suggested that a social-cultural evaluation should be carried out before including parents in the program. Indeed, participants with precarious economic and social conditions had difficulties to identify with other parents’ experiences.

Four facilitators also reported that important disparities in children’s characteristics and disorder severity could impact parents when comparing their child to the testimonies of others in the group:

When we read the “characteristics” on the paper, we could not have anticipated that the gap would be so important. So, we have to be cautious about age gaps, severity, and forms of autism [in the parent’s children].

This program required a strong emotional investment from parents. Two facilitators insisted on the fact that parents had to be psychologically available to invest the program. Some parents were stated as showing signs of depression, and their pessimistic views and negative emotions affected not only their participation but also other participants in the group. Some parents also exhibited emotional reactions toward the content of some activities, more specifically when referring to the activity on adjustment to diagnosis (workshop 2). As one facilitator explained,

The second session was the most problematic one because we discussed parental coping strategies and it was not a simple session, especially for parents who just received a diagnosis a short time ago. We have to talk about shock, denial, depression, feeling of despair, about not knowing what to do, etc. So, for parents who are in this phase, in denial or in despair, it is something that just violently impacts them.

Limitations and strengths

Most facilitators were contacted several weeks after delivering the program, which may have diminished the level of detail in the information reported. In addition, we did not control for the facilitators’ level of experience or specialization. This might have influenced the way they implemented the program. In particular, some more than others may have felt it was important to spend time on topics that parents brought up even though they were not formally covered in the program. Indeed, some authors underline the importance of taking into account stakeholders’ skills when implementing a program and providing additional training if needed, in order to bolster skill level and to ensure high-quality implementation (Stith et al., 2006). In addition, the analysis was performed on all interviews, with no distinction between services where parents received additional individual support and those where they did not. This difference may have influenced the facilitation experience. Furthermore, our study did not consider parental perceptions of the program. Literature on parents’ perspectives and their views on the effectiveness of autism-related programs is scarce, hence the need to evaluate parents’ point of view on the support they are receiving, and on the type of support and services they would like to receive in the future (Galpin et al., 2018). Including an assessment of the parents’ experience using quantitative and qualitative data could also provide precious support for successful implementation (Stahmer et al., 2017). Therefore, future evaluations of the program should consider placing family at the heart of decision-making and grasp their views on how the program may respond to their specific needs.

Our study also presents important strengths. The expanding interest in autism-related programs for parents requires gaining deeper understanding of the elements impacting implementation in order to seek program optimization. Cook and Odom (2013) underlined that the majority of published researches in special education did not provide much information about real-life program intervention context. This study focuses on data such as participant mobilization, program adaptability to changes and unexpected events, and professionals’ perceptions on program functionality and needed resources. It presents an important environmental sensitivity for which a qualitative approach is perfectly suited. The results of this study contribute to our understanding of the factors influencing fidelity of implementation (Hudson et al., 2016; Sheridan et al., 2013) and therefore to improve the assessment of effectiveness of psychoeducational programs for parents of autistic children. These results add to the quantitative findings previously obtained in our larger research project, including more explicit measures of social validity and fidelity of implementation (for more details, see Cappe et al., in press; Sankey, Girard, & Cappe, 2019). This study also provides practical information for the field, as well as useful information for professionals involved in the implementation and delivery of psychoeducational programs. Even though this study fills a gap by highlighting facilitators’ perspectives, further qualitative research should include the perspectives of all program stakeholders (parents and/or physicians), rather than just those of the facilitators. In the area of education, parents and facilitators may identify different features of programs as important, and parenting program developers should therefore also seek the views of parents as a factor influencing parental engagement (Mytton et al., 2014).