Abstract

The aim of this study was to evaluate parents and course leaders' experiences of the ComAlong early intervention course; a parental course about communication, communication development, play, responsive communication strategies and augmentative and alternative communication (AAC). ComAlong targets parents of pre-school children with extensive communication difficulties and, at times, additional disabilities. Data consisted of course evaluation surveys filled out by 86 parents (57 mothers and 29 fathers) and one grandmother and interviews of four parents and four course leaders. Overall, parents were positive about the course. This was shown in ratings of 21 statements, in written answers to seven open questions and in the interviews. The total mean value for all statements was 4.4 (max 5) and the median was 4 or 5. The means for the 20 statements varied between 3.9 and 4.8 and half of all statements had mean values of 4.5 or higher. The mean value for the course (parents' rating of the course on a 1 to 10 scale where 10 was the best) was 8.5 (Mdn and mode = 8, SD = 1.1). On the whole, parents and course leaders were satisfied. Parents learned about communication and AAC and experienced that communication with the child had changed to the better. In particular, parents appreciated meeting respectful and competent course leaders and other parents to children with varying disabilities. Information about the course before it started was a problematic issue. These and other findings are discussed with regard to early intervention for parents of children who use augmentative and alternative communication.

Introduction

Speech, language and communication are of central importance to a child's participation, development and well-being. For example, there is evidence for associations between speech impairments in children and activity limitations and/or participation restrictions, not only with regard to communication in general, but also with regard to reading, writing, calculating, attention and thinking, formal and informal relationships with other people, education, and employment (McCormack, McLeod, McAllister & Harrison, 2009). Accordingly, children with speech difficulties need support, and some of them may need augmentative and alternative communication (AAC). Augmentative and alternative communication strategies and tools have been shown to have positive effects on children's development in speech, language and communication (Branson & Demchak, 2009; Millar, Light & Schlosser, 2006; Romski et al., 2010; Sevcik, 2006).

A child's health condition depends on both individual and environmental factors (Simeonsson et al., 2003), and family and home are important contexts for the social, psychological and physical development of children with disabilities. Parents, or other primary caregivers, are the most significant communication partners of young children and also have the main responsibility for health and care. Development of skills relating to self-determination in children with disabilities, including the planning and implementation of personal and interpersonal goals, also relates to the home context (Brotherson, Cook, Erwin & Weigel, 2008). Thus, there are several reasons for collaborating with parents and families of children with disabilities (cf. Granlund, Björck-Åkesson, Wilder & Ylvén, 2008).

Being the main communication partner of a child with communication difficulties is challenging. Children's signals may be vague, altered in terms of rate and timing, and difficult for parents to register and interpret. Parents tend to dominate in interaction by communicating at a high rate, taking many initiatives, asking many yes and no questions, and by restricting topics so that conversations mainly concern the "here and now" (Ferm, Ahlsén & Björck-Åkesson, 2005, 2011; Light, Collier & Parnes, 1985a, b; Pennington & McConachie, 1999). Although effective as far as basic understanding and activity performance is concerned, interaction patterns like these severely influence the possibilities of children with communication difficulties to take initiatives and contribute to conversation with own concerns in an independent manner.

Importantly, research has shown that parents can change the way they communicate with their children (e.g., Aldred, Green & Adams, 2004; Fey et al., 2006; Girolametto, Sussman & Weitzman, 2007; Jonsson, Kristoffersson, Ferm & Thunberg, 2011; McConachie, Randle, Hammal & Le Couteur, 2005; Pennington, Thomson, James, Martin & McNally, 2009). Mahoney, Boyce, Fewell, Spiker & Wheeden (1998) compared different early intervention programs and found that for changes to occur in children, mothers needed to change their communicative style. Responsivity in mothers stood out as particularly relevant. Other studies have also shown that parents' responsivity is a main factor that influences children's communication (e.g., Harwood, Warren & Yoder, 2002; Fey et al., 2006; Warren & Brady, 2007; Warren, Brady, Sterling, Fleming & Marquis, 2010; Siller & Sigman, 2002).

Parents of young children with disabilities experience more stress than other parents (Ello & Donovan 2005; Olsson, 2009; Singer, 2006). Sources of stress could be daily life at home and the use and management of different communication strategies and aids (Goldbart & Marshall, 2004; McCord & Soto, 2004; McNaughton et al., 2008). Furthermore, the responsibility for the child's use of AAC may rest upon one parent more than on the other. This was the case in more than half of the 114 families that participated in the study by Angelo (2000) where mothers, more often than fathers, had the main responsibility. Parents are experts on their own children, have ideas about their children's communicative needs, and want to be involved in and understand the rationales behind assessment and intervention (Calculator & Black, 2010; Carroll, 2010; Goldbart & Marshall, 2004; Marshall & Goldbart, 2008; Marshall, Goldbart & Phillips, 2007). Unfortunately, according to the parents in the Marshall and Goldbart study, professionals do not always make explicit the relevance of communication and AAC to parents.

Societal issues like other peoples' attitudes are raised by parents as important, and may complicate life for families of children with disabilities; parents of children who use AAC have described becoming socially isolated (Goldbart & Marshall, 2004; Marshall & Goldbart, 2008). This, together with a need in parents to learn more about how to support their children, may be reasons why training programs where parents meet other parents are useful (Baxendale, Frankham & Hesketh, 2001; Carroll, 2010; Kane, Wood & Barlow, 2007; Pennington & Thomson, 2007).

Parent training programs are defined by Kaminski, Valle, Filene & Boyle (2008) as interventions where parents actively acquire parenting skills. Leading principles are positive attention and clear communication. The programs rely on a manual; they often include role plays, video vignettes and home work. They rely on social learning theory and aim at helping parents to build good relations with their children. In a systematic review of 77 studies on general parent training programs, not specifically for parents of children with disabilities, Kaminski et al. concludes that interventions that aim at creating positive parent-child interactions and which include practical exercises give the best effects.

According to parents, formal support is important (Kvande & Knutheim, 1995). In a review of 35 studies of family-centered care, Dempsey and Keen (2008) showed a strong coherent relation between routines and methods for support and parents' sense of knowledge and control. There is also a relation between decrease in stress in parents and positive development in the child. The importance of both good methods and good relations between parents and professionals were emphasized. Continuity, flexibility, individuality and partnership are other factors associated with good support. It is important for parents that service providers view them as unique and consider and respect what the parents think is best for their child (Lärka Paulin, Bernehäll Claesson & Brodin, 2001).

Information and professional knowledge is an important part of all parent support, and especially so if the child has a disability and the informal network does not have experience or knowledge to support the parents. It has also been found that training manuals, as well media and internet-based training and information have effects on parental behaviour and knowledge (Harris, 2008). Gumley (2011), in an evaluation of parents' satisfaction with multi-disciplinary assessments, found that parents highly valued information.

Evaluations of parent programs focusing on communication have shown effects in parents who have become more responsive and sensitive to their children's communicative attempts. For example, after intervention parents were more confident and aware of both their own and their children's interactive behaviours (e.g., Girolametto et al., 2007; McConachie et al., 2005; Pennington & Thomson, 2007; Pennington et al., 2009). The three mothers in the study by Girolametto et al. reported changes in their own communication with their children following intervention. Examples of changes described were increased engagement in play and turn-taking games, following the child's lead more often and using less complex language. Parent programs can be beneficial for professionals as well. The therapists in Pennington and Thomson's study (2007) described strengthened relationships and facilitated planning and goal setting with parents during programs.

The support needs of parents and children with disabilities depend on a variety of factors within the child, but also on environmental factors, the attitudes of others in society, the family's social network and knowledge, skills and expectations in parents. Supposedly, educating parents of children who need to use AAC so that they can communicate and build healthy relationships with their children, and meet the different demands posed on them because their children have communication difficulties, is necessary for early augmentative and alternative communication intervention to be successful (Granlund et al., 2008; Light & Drager, 2007; Thunberg, 2007).

The AKKtiv project and the ComAlong course

AKKtiv is a Swedish project about augmentative and alternative communication and early intervention. ComAlong, which is focused in this study, is a parental course developed within AKKtiv. The goal of ComAlong is to provide parents of pre-school children with communication difficulties, and at times additional disabilities, a stable ground for communication with their children. ComAlong shares the theory of other early intervention programs (e.g., Pepper & Weitzman, 2004; Greenspan & Wieder, 2006; Paul, 2007), acknowledging the importance of responsivity in particular, but is different by also considering AAC-related theory, methods and tools (e.g., manual signs, picture based communication boards, speech generating devices and computers). Parents participating in ComAlong have children with different diagnoses and the course is offered as a part of the ordinary habilitation services.

ComAlong includes eight sessions about communication, communication development, play, responsive communication strategies, augmentative and alternative communication (AAC), aided language stimulation and children's communicative rights. Each session lasts for approximately two hours and includes a social warming up with sandwiches and coffee or tea, lectures and discussions. During the course, parents get different homework assignments. These are planned and followed up by the group. One assignment consists of ten situational and activity based communication boards — the ComAlong boards — that parents are supposed to use with their children. There is a basic frame for each session in the course, but individual initiatives by parents during the course are encouraged and treated with respect by course leaders. A ComAlong course is managed by two (and always the same) professional course leaders who are trained in child development and disability, communication, and AAC. At least one of the leaders must be a speech and language pathologist. And independent of professional background, each person who wants to run a ComAlong course must attend a two day long accredited training course. Parents and other primary caregivers of a maximum of ten children are invited to participate in each course. It is possible for only one parent to attend, but for the purpose of maintaining stability within the group, mothers and fathers are discouraged from taking turns attending the course. Fourteen ComAlong courses took place in Sweden between 2007 and 2010, and 114 parents participated in these courses.

The research group in AKKtiv is interdisciplinary. It includes experts from the fields of speech and language pathology and AAC, linguistics and psychology, and acknowledges the importance of building AAC technology and strategies on well known theoretical constructs, as well as on the views of persons who rely on AAC and their communication partners (cf. Blackstone, Williams and Wilkins, 2007). Different aspects of ComAlong have been examined. Parents' experiences of aided language stimulation at home, through the use of the ComAlong boards, were examined in a study by Jonsson et al. (2011). An instrument for assessing communicative style in parents, the RAACS-scale — Responsive Augmentative and Alternative Communication Style Scale — has been developed (Broberg, Ferm & Thunberg, 2011), and some of the strategies that ComAlong parents use to treat their children's actions as sensible have been demonstrated using conversation analysis (Brouwer et al., 2011).

The purpose of this study was to explore parents' and course leaders' experiences of the ComAlong early intervention course. More specifically, three research questions were addressed: (a) Which were the most valued aspects of the course? (b) Which were the least valued aspects of the course? (c) According to the parents, what were the effects of the course on their own and their child's communication?

Method

A mixed (quantitative and qualitative) methods design was used as both survey and interview data were examined (Östlund, Kidd, Wengström & Rowa-Dewar, 2011).

Participants

86 parents and one grandmother (57 mothers, 29 fathers and 1 grand mother) participated in the study by filling out a course evaluation survey. From here on, the grandmother will be referred to as a parent. Four parents and four course leaders were interviewed. Since the surveys were anonymous, we don't know if the four interviewed parents were among the 87 that filled out the course evaluation survey or not. All parents had participated in 1 of the 14 ComAlong courses that took place in Sweden between 2007 and 2010. The total number of parents participating in the 14 courses was 114. Accordingly, the response rate for the survey was 76%.

The mean number of parents in the different courses was 8 (range 5-11). The mean age of the parents was 35:7 (years: months) and the educational background varied from upper secondary school (34) to vocational school (11) and university (39). For three parents the educational level is unknown. For most of the parents, Swedish was the first language. However, it is satisfactory that the ComAlong course has attracted parents with other languages as well. Apart from Swedish, the following eleven languages were represented among the participants: Russian, Kurdish, Polish, Spanish, Tigrinya, Wolof, Serbian, English, Finnish, Arabic and Turkish. All parents had children with communication difficulties. Most of the children were beginning communicators, which meant they understood and used a few spoken words, pictures or manual signs. Detailed child data were only available for 48 children whose parents participated in research that focused on specific areas, such as the parents' communicative style, the children's development etc. The mean age of these 48 children was 47.4 months with a range from 17 to 79 months. The children had the following diagnoses: Autism, Down syndrome, developmental disability and cerebral palsy, mixed and unknown diagnoses. Information from course leaders over the years suggests that these data are representative, with only some specific variations. For example, parents of a child as young as six months participated in one course, and parents of a child who was seven years old participated in another course.

In order to get a deeper understanding of the parents' level of satisfaction, interviews were carried out as a complement to the survey. Four parents were interviewed in pairs, on two different occasions, so that there was one interview with mothers A and B and one interview with mothers C and D (Table 1). Mothers A and B had participated in different ComAlong courses and did not know each other. Mothers C and D had participated in the same ComAlong course. The four parents had children of different ages and with different diagnoses and communication difficulties. All parents had some experience of using AAC with their children prior to participating in ComAlong. For confidentiality reasons, little background data is provided about the interviewed parents.

Four course leaders were interviewed in pairs on two different occasions. There was one interview with course leaders A and B, and one interview with course leaders C and D. The course leaders had not participated in the development of the ComAlong course or in any other research relating to the AKKtiv project. Two course leaders were speech language pathologists, one course leader was a special educator and one course leader was an occupational therapist. All worked within the habilitation and health services. Course leaders A and B worked together one day a week; C and D worked in the same place, but in different geographical teams. The course leaders had carried out two (A and B) and one (C and D) ComAlong courses together.

Table 1. Characteristics of interviews
InterviewsParticipantsInterviewerDuration (hrs: min)
Interview 1Mothers A and BStudent 1:14
Interview 2Mothers C and DResearcher 1:36
Interview 3Course leaders A and BStudent 1:16
Interview 4Course leaders C and DStudent 1:11

Notes: The student was in the final year of the speech and language pathology program. The researcher was the first author.

Ethical considerations

The AKKtiv research project was approved by the regional ethical review board, and guidelines for research involving humans were followed. All parents gave their written consent to the inclusion of their anonymous course evaluation survey in the research project. The interviewed parents and course leaders were thoroughly informed about the purpose of the interview and about their right to withdraw from participation at any time; their participation built on informed consent. All identities have been kept confidential, and participation in this study has not influenced the parents' rights to receive other habilitation services.

Material

Course evaluation survey

The course evaluation survey consisted of three parts. The first part included questions concerning the parent's age, language, educational level, occupation etc. The second part included 20 statements about the content and organization of the course. These were in accordance with the aims of the course. The parents were asked to rate the statements on a 1 to 5-point scale, where 1 meant 'not agree' and 5 'fully agree.' In a separate statement, the parents were asked to assign the course a number between 1 and 10, where 10 was the best (Table 2). The third part included nine open questions about communication and the content of the course; seven of these questions were treated in this study. Two questions concerned possible changes in communication after the introduction of the ComAlong communication boards. A detailed account of parents' experiences with the ComAlong boards is presented elsewhere (Jonsson et al., 2011), and the answers to these questions were not dealt with here. All through the survey, parents were encouraged to write comments. The survey was constructed by the researchers in the AKKtiv-project (first, third and fifth authors), and was answered anonymously. The survey has been changed slightly over the years, as the course was developed and different issues needed to be evaluated. As can be seen in Table 2, all statements and questions were not answered by all parents, and there are three possible reasons for this: (a) All parents did not get all statements because slightly different versions of the survey was used, (b) some parents missed some statements, and (c) some parents chose to not respond to some statements. There was no equivalent survey for the course leaders.

Interview guide

An interview guide including 18 questions was developed. Some questions concerning, for example, the organisation of the course were relevant for both parents and course leaders. Other questions targeted parents or course leaders more specifically, for example, questions about parenting and questions about the work load associated with the implementation of the course.

Stimulus material

A stimulus material was sent to the parents and the course leaders prior to the interviews. The parents got the same outline of the course as they received before the course started and one of the communication boards that they had become acquainted with during the course. The course leaders got the same outline of the course as they received during the course leader training and the same communication board as the parents.

The interviews were audio recorded using the Olympus Digital Voice Recorder WS-210S.

Procedures

Course evaluation survey

The course evaluation survey was filled out by the parents during the last session of each course. In a few courses, there was not enough time for parents to fill out the survey. Instead, parents were asked to fill out the survey at home and send it back to the course leaders. Presumably, some of these parents didn't send their surveys to the course leaders. The course leaders were responsible for handing the surveys over to the researchers. The material was compiled by one of the researchers and by a student in the final year of the speech and language pathology programme (hereafter referred to as the SLP-student).

Pilot interviews

Three semi-structured pilot interviews with a parent who had participated in an early version of the ComAlong course and two speech and language pathologists who had participated in the development of the course were conducted with the purpose to develop a relevant interview guide. The parent was not part of this study in any other way. The interviews were carried out by the SLP-student in the parent's home and at DART — Centre for Augmentative and Alternative Communication (AAC) and Assistive Technology (AT). Each interview lasted for approximately 90 minutes, and the interviewer took notes as the parent and the course developers talked freely about the course. The course developers talked about their thoughts behind the course and gave examples of issues they thought were important to evaluate. The parent talked about her child and her experiences from the course. The parent too gave suggestions for issues to ask the parents about in the interviews. The pilot interviews are not treated further in this paper.

Interviews

Focus groups are economical and can be stimulating as far as parents' telling of different views is concerned. Focus groups can also be restrictive in the sense that some parents may not like to discuss personal and emotional issues with others. In this study a compromise was made, as parents and course leaders were interviewed in pairs (Table 1). Interviews 1, 3 and 4 were done by the SLP-student and took place at different habilitation centres; interview 2 was done one year later by one of the AKKtiv-researchers and took place at DART—Centre for AAC and AT. The total interview/discussion time was five hours and 17 minutes. The interviews were open as the participants talked freely about their experiences from the course. The only instruction given to the participants in each interview was to talk with each other and the interviewer about issues they felt were important. They were informed about the fact that there were no "right" or "wrong" ideas about the course, and that the interviewer had a set of questions that would be used in case this was needed to get the discussion going. They were also told that the interviews were audio recorded and that no names would be used in the dissemination of the results. The participants initiated discussion relating to most of the questions that were in the guide by themselves, and the interview guide was hardly used. The questions asked by the interviewers mainly filled clarification purposes.

Transcription

The interviews were transcribed orthographically by two SLP-students. The student who did interviews 1, 3 and 4 transcribed these interviews. Another final year SLP-student transcribed interview 2. Focus was on content rather than interaction patterns. All audible words including repetitions and incomplete words and laughter were transcribed. Simultaneous communication and pauses were noted, but not transcribed in detail with respect to time. An independent person checked the transcripts from interviews 1, 3 and 4 against the audio files to ensure correctness. The transcript and audio file from interview 2 was checked by the researcher who did the interview.

Analysis and presentation of data

Data analysis was done by the two SLP-students and the researchers in the AKKtiv project. The scale questions of the course evaluation surveys were analysed using descriptive statistics, see Table 2. Microsoft Excel was used. The number of comments to each statement was calculated and examples of comments were given. The parents' answers to the seven open questions were summarized according to affirmative, negative and neutral responses and according to the main ideas and opinions conveyed. Interview data was used to supplement survey data: Key issues found in the survey were further elaborated on by describing and exemplifying issues raised by parents and course leaders in the interviews. In the results, citations of written and spoken comments are presented in italics.

Results

Table 2 shows parents' ratings and numbers of comments to scale questions. The statements that received the lowest (3.9) values were: Information about the course before it started, and the right time for participating in the course. The statement that received the highest mean value (4.8) concerned the course leaders' ability to mediate the knowledge. These aspects are reported first. Thereafter, other observations done in relation to scale questions and comments are summarised according to two additional headings: (a) Organisational aspects of the course, and (b) parents' knowledge and the value of the course. Finally, the parents' answers to the seven open questions are presented in relation to three themes: (a) Changes in communication, (b) content and possible improvements of course, and (c) most positive and negative aspects of course.

Table 2. Number of parents answering and commenting each statement in the course evaluation survey; means, medians and standard deviations (1 to 5-point scale, where 1 meant 'not agree' and 5 'fully agree').
StatementNMMdnSD
It was appropriate attending the course every week604.65.00.9
8 sessions was appropriate734.45.00.9
2 hours per session was appropriate 744.55.01.1
The size of the group was appropriate874.75.00.7
The content of the course was meaningful for me874.45.00.8
The level of the course suited my previous knowledge874.45.00.9
The home work assignments were meaningful864.34.00.8
The home work assignments were just enough demanding 744.45.00.9
Trying the ComAlong communication boards was valuable734.04.01.1
I got enough information about the course before it started 873.94.01.2
The course fulfilled our expectations874.35.00.9
I have got knowledge about communication864.75.00.5
I have got useful hints/strategies with regard to communication744.75.00.5
I have got a comprehensive picture of AAC, different aids and their use874.65.00.7
The visit at DART — Centre for augmentative and alternative communication and assistive technology was fruitful494.65.00.9
There was enough room for me with regard to questions and discussion874.75.00.5
I needed this knowledge874.55.00.7
The course was appropriate with regard to my/our child's communication difficulties864.24.01.0
This course came in the right time for our family743.94.01.3
The course leaders were good at mediating the knowledge874.85.00.4
On the whole and using a 1 to 10 scale (where 10 is the best) I would assign this course a 718.58.01.1

The mean value for the course (statement 21 rated from 1-10) was 8.5 (Mdn and mode = 8, SD = 1.1) and, as can be seen in table 2, parents were overall positive in their ratings. The total mean value for all statements was 4.4, and the median was 4 or 5. The means for the 20 statements varied between 3.9 and 4.8, and half of all statements had mean values of 4.5 or higher.

Information about ComAlong before the course started

One of the two statements with the lowest mean value (statement 10; M=3.9) concerned if parents got enough information about the course before it started. There were only eleven comments to the statement. However, five of the comments were negative in a way that is not compatible with the theoretical and ethical grounds of ComAlong. The fact that one parent wrote "absolutely not" when faced with the statement "I got enough information about the course before it started" and that someone else wrote "got information about the course during the first session," indicates that information had been a problem for some parents.

The right time for participating in the course

The "right time" for participating in the ComAlong course was the other statement (19) with the lowest mean value (M=3.9). Forty-four percent (44%) of all parents that rated this statement also made comments. The parents' opinions seem to relate to the developmental level and communication of their children and to their own present and possible future needs. Put simply, the comments were of three kinds; the course came at the right time, the course came too late and the course came too early. Most parents said they would have needed the knowledge from the course earlier, but someone also commented that the child was not yet at the appropriate developmental stage for the parent to participate in the course. There was also evidence in data for parents' planning and concern about the future. For example, one of the interviewed mothers was very content with the early support the family had received from their own speech and language pathologist. However, at the time of the interview she had become aware of the fact that they would be getting less service as the child got older, and she therefore thought that she and her husband might need the support rendered by the other parents and course leaders in the ComAlong course in the future.

The course leaders' ability to mediate the knowledge

The statement with the highest mean value (20; M=4.8) concerned the course leaders' ability to mediate the knowledge. Twenty-one parents (24%) commented on the statement, and the course leaders was a topic in both interviews with parents. Apart from stating that the leaders were "very good" at mediating the knowledge, the course leaders were thought of as "understanding," "funny," "human," "nice and cozy," "helpful," "competent" and "pedagogical." One parent stated the course leaders were "outstanding." The following written comment is suggestive of high quality: "They are professional with sensitivity, warmth and concern. It was a real pleasure to meet and learn from them."

The interviewed course leaders talked about their own competence and capability to lead the course. According to them, considerable knowledge about communication development in children with disabilities is a prerequisite for leading the course. Knowledge about group dynamics and experience of leading groups are other positive background factors. They felt it was instructive and lots of fun working together with a colleague and experienced professional gains on both individual and institutional levels. Said by one leader: "I now realize that what I have tried to say in fifteen minutes before actually takes eight two hour sessions." Another course leader stated that they talked much more about communication at the habilitation centre nowadays, that is, since they started giving ComAlong courses.

Organisational aspects of the course

The appropriateness of the size of the group (4), attending the course every week (1) and having eight session (2) were other statements that received comparatively high ratings (M = 4.7, 4.6 and 4.4), and that also were commented on by many parents (22/25%, 32/53%, and 30/41%). Over the years it has been decided that a maximum of ten families (parents of ten children) should be invited to each ComAlong course. The courses evaluated in this study included between five and eleven parents, and since participation is not obligatory, a session could include as few as two parents, if three of five didn't show up. Yet, many parents were satisfied with the group size. One parent felt that "it would have been fun if we were more parents. We were 4 children 5 parents." But still another wrote that "5 is just enough." No parent commented that the group had been too large. Instead, several parents suggested that a larger number of parents in the group could have been stimulating for the discussion. However, the ratings of statement 16 (M=4.7), which concerned room for questions and discussion, is indicative of suitable group size. Many parents seem to have liked attending the course every week, but one parent stated that: "the boss was perhaps not very happy."

Parents' knowledge and the value of the course

Several of the statements in the survey concerned the content of the course and the impact of the course on the parents' knowledge about communication. Many parents thought the content of the course was valuable and suited their previous knowledge (5 and 6; M=4.4). Statements 12 and 13 concerned the impact of the course on parents' knowledge about communication and the mean value for these statements was high (M= 4.7). Parents appreciated learning more about communication and AAC and for many, ComAlong seems to have provided an overview of strategies, aids and methods, and their use (14; M=4.6). The visit at DART — Centre for AAC and AT, where parents had the possibility to make their own communication boards, was highly valued (15; M=4.6) and commented by as many as 32 parents (65%). The mean value of statement 17 (M=4.5), "I needed this knowledge," is also suggestive as far as the value of the course for parents is concerned. Comments relating to the statements about expectations concerning the course (11; M=4.3), and the course in relation to individual children's difficulties (18; M=4.2), were informative. For some parents the course turned out to be better than they had expected. However, there also were individual needs that were not met. Some parents would have liked more information about manual signing, deeper knowledge, and more hands-on exercises (see also answers to open questions).

It was the course leaders' opinion that the ComAlong parents have a basic knowledge about communication and AAC that other parents within the habilitation services don't have to the same degree. One of the course leaders expressed it this way:

"But then I see I see a large gain with one like this that the parents that have participated in this course I can feel that I don't have to work on such a detailed level with these families because then I know then I know they have the knowledge and they will contact me when they need help you know it feels like you can have a different kind of confidence in that it is this way."

Of worth noting, parents stated that they need knowledge in order to be able to argue against administrators and others in power positions in different societal institutions. Lack of respect and understanding from professionals within the habilitation services and school was also a recurring theme. The interviewed parents expressed a strong need for things to "just work," and for others to believe in and collaborate with them:

"But you know they are not only our children in the same way as I imagine other children are but in a way they are society's children as well there are so many who should take care of them and where it must work."

One mother talked about increased knowledge about communication and how it hurts seeing your child's needs and realize that others don't see them. She told about a play situation that she had observed at the childcare centre:

"They are wonderful people taking care of her it is not that but you got such an increase in knowledge like I talked about and then all of a sudden you are in another dimension where you saw other things in communication in interaction with other children that I felt the pre school staff didn't see — that hurts in me."

Changes in communication

The first open question—Do you experience any change in the way you communicate?—was answered by 78 of 87 parents (90 %). Five parents did not experience any change in their own communication; one of these parents thought the child was too young. One parent thought it was too early to observe any change and two parents answered that they hadn't had the time to work with the course assignments. The other 70 answers were affirmative. Examples of changes in communication were increased attention and patience, calmer, adjusted speech and more explicit speech, more waiting and giving the child more time, expectant delay, and better at "seeing" the child's communication and at adjusting to his or her level. Some parents mentioned using the ComAlong boards, other pictures, manual signs and specific strategies from the course (e.g., "freezing" an action during play and communication). Others thought the course had led to increased awareness, a better basis for communication and a different way of thinking: As one parent wrote: "I look at my child in a different way. See that she communicates all the time, even if I don't know what she wants and that is an exciting feeling."

The second open question concerned the child's communication: Do you experience any change in the way your child communicates? It was answered by 62 of 87 parents (71 %). 15 parents did not experience any change in their child's communication. Some of them gave more detailed answers. 6 suggested the child was too young and that it was too early for any change to have occurred. Several parents were still positive; in the sense that they seemed to expect a change, they wrote "not yet." One parent didn't know and two parents hadn't had the time to practice. One parent saw a continuous development in the child, but did not relate it to the course. 43 parents were positive and thought their children had developed. Answers included, but were not limited to: Increased interest in communication and use of different modes, longer utterances, more manual signs, more pointing, use of communication boards and pictures, changes in body communication ("turns towards me") and increased explicitness in expression and understanding ("shows she understands"). The answers indicated that parents were aware of the fact that communication is a shared process: "(I am) better at waiting for an answer, notice that the answers often come but with some delay," "(I) believe he feels more supported, has started to use pictures," and "(I) believe he likes that I become calm/pedagogical." There also were comments of a more general kind, for example, two parents wrote that things/everything had become easier, and one wrote, "patience has increased," not specifying whether this concerned her or himself, the child or both of them.

Content and possible improvements of course

65 % of the parents answered the question about what there should have been less of in the course. 27 parents wrote "nothing," or stated that it all was okay and that they got enough of everything during the course. 7 parents didn't know what there should have been less of in the course.15 parents had suggestions, like less theory, less PowerPoint, less lecture, less talk about communication boards, pictures and speech generating devices, less time for free discussions, and less talk about the more advanced symbol systems. The remaining answers were of varying kinds. For example,one parent disliked that an unknown professional had joined the group in one session to talk about play. Others were more general, saying, for example, that the children were very communicative (perhaps referring to the film examples that had been used during the course or to the other parents' children), that the home work assignments were not very good, and that the first three sessions were not very rewarding.

The next open question concerned what there should have been more of in the course. 69 % of the parents answered the question, and 12 parents stated they got enough of everything in the course. 9 parents didn't know what there could have been more of. 39 parents would have liked more of: everything, manual signs, Blissymbolics, practical ideas and exercises, and aids to borrow during the course, films and concrete examples of "how to really change things." Someone thought it would have been valuable if the children had participated as well. Some parents would have liked even more discussion about communication and how to solve different problems. More time to make your own communication material was a recurring answer. One of the 39 parents thought there had been a lack of explanation concerning what methods and aids to choose in relation to different types of disabilities. Someone stated that more could have been accomplished in eight sessions.

Parents also had suggestions for improvements: 52 parents out of 87 (60%) answered the question: How do you think the course could be improved? 7 parents answered that no improvements were needed or that they were very satisfied with the content and form of the course. 8 parents didn't know how the course could be improved. 37 parents had suggestions for improvements. Several of these concerned the number of sessions and how often the sessions occurred. Some parents wanted more sessions, others thought the course had been a bit slow and suggested fewer occasions and increased "effectiveness." Someone suggested full days. Several parents thought that more attention should be paid to the individual children. There also were several comments about the need for a written course material. Some parents wanted less lecturing and more free discussion.

Most positive and negative aspects of course

The open question about the most positive aspects of the course was answered by 94 % of the parents who gave one, two or more examples of things that had been positive with the course. Besides very concrete examples such as practical hints and examples of communication strategies and methods, communication boards, speech generating devices and films, more than half of the parents expressed that the group and sharing experiences with other parents who were in a similar situation was the most positive with the course. Many parents also thought it had been positive to consider their own communication strategies. "Being forced to consider how one does in different situations," "how important it is to slow down and take the time," "a push to really get started," "a help to get this way of thinking into daily life" and "to learn to see one's own place and role in communication—what one does good and bad" are examples of parents' positive experiences. Information, inspiration and increased knowledge were other positive experiences. One parent simply answered "atmosphere." Still others wrote that the size of the group, the personal feeling within the group and the fact that there was lots of time for discussion for everyone were the most positive aspects of the course. One of the interviewed mothers spontaneously described how relieving it had been for her that the course included parents of children with different disabilities. She was tired of professionals making general statements about her son as someone who behaves in a certain way because children with autism usually do so:

"Yes and then we come here and it was fantastic and this thing that they had mixed that it was not the same diagnosis in all children it was it was the best thing with the course to not and I was so tired of the autistic because you know the whole society fits into the autism spectrum."

Since there were different diagnoses represented among the participating families, the group was positively forced to consider each child as an individual rather than as a diagnosis. The same mother said: "to be in a place where one is the norm instead of the odd — it feels so good, it feels so good." She also raised another positive aspect of meeting other parents of children with disabilities, namely that you don't have to tell about your child's positive sides and competencies because the other parents know children with disabilities are just children as well. Two of the interviewed course leaders talked with great respect about how the parents in their course had shared their most personal feelings with each other in the group.

The course leaders were mentioned as positive (cf. statement 20) and were also discussed by the parents in the interviews. One of the mothers described the ComAlong course leaders as very different from other professionals that she had met with regard to her child's health and communication. Being frustrated for not having been listened to and believed in earlier meetings, the mother described how she at first thought that the course leader was ironical when she confirmed the mother's beliefs concerning her child's difficulties and diagnoses. This is from the interview: "I said that I believe he has some kind of language impairment yes then he probably has that she says to me and I am thinking is she making fun of me." According to this mother, it was wonderful being believed in and treated as a trustworthy parent who is an expert on her own child. For the first time, in the context of the ComAlong course, she felt that her worries and thoughts were taken seriously.

The last open question—What was the most negative with the course?—was answered by 49 of 87 parents (56 %). 15 parents answered "nothing," and 5 wrote they didn't know, couldn't think of anything negative and that everything was good. 6 others answered that the most negative thing with the course was that it was ended, that it was too short and that "I missed one session." The remaining 28 parents brought up issues such as the time it took travelling to the course, little variation with respect to communication aids (communication boards mainly), too much "sit and listen," dominance by some parents in the group and the fact that the course at times was slow. There also were very personal answers about feeling sad when you understand what level of communication your child is at. It also could be difficult to hear about development in other children when nothing happens with your own child. One of the interviewed mothers described it this way:

"I felt also a bit like that that peter then was seven years and could almost perhaps not so much and some that were three were very good at signs and so it was a little bit like that one started to think."

Discussion

The first research question addressed in the study concerned which aspects of the course the parents valued the most. The course leaders' attitude and ability to mediate the knowledge were factors that the parents pointed out as very positive. Course leaders were described as professional and "human" and different from other service providers. Trusting relationships seem to have been created. The results showed that parents felt unique and believed in; feelings and experiences that we know are important (Dunst & Dempsey, 2007; Keen, 2007; Lärka et al., 2001). We believe that the positive atmosphere in the ComAlong courses, which is described by both parents and course leaders, has lots to do with warm, knowledgeable and confident course leaders who participate in and are supportive all through the course. A well-structured and defined program is probably another important factor for professionals' sense of security and parents' experience of professionalism. As pointed out by the interviewed course leaders, leading the ComAlong course could be demanding, but also rewarding and positive in the sense that communication was more often discussed at the habilitation centre since ComAlong started (cf. Pennington & Thomson, 2007). The fact that ComAlong has contributed to making communication a topic of the daily agenda within some habilitation services could, in the long run, be positive for parents and children with communication difficulties.

Participating in a group with other parents of children with communication difficulties was valuable for many parents, and as can be seen in relation to the open question, was considered the most positive thing with the course by more than half of the parents. Both Carroll (2010) and Kane et al. (2007) report that parents were positive about participating in parent groups. 9 of 19 parents in the study by Baxendale et al. (2001) thought that the contact with other parents was the best with the intervention they received. According to Pennington and Thomson (2007) there are both advantages and disadvantages of mixing parents of children with different needs. Comparisons among parents with regard to their children's different levels and capabilities could certainly be a disadvantage, but as has been shown in this study, there are advantages with mixed groups as well.

Overall, both parents and course leaders thought that the parents had learnt a lot about communication and about the way they communicated with their own children. Parents were positive about this newly acquired knowledge and skills. Increased knowledge, skills and confidence in parents following a training programme were also reported of by the therapists in Pennington and Thomson's (2007) study. However, both survey comments and interviews in the present study are indicative of large parental responsibilities: Parents need knowledge so that they can inform others in their children's social networks, relatives and personnel at school, in particular. The present parents also mentioned previous negative experiences from other support services, such as not being believed in. Similar negative experiences were reported by some of the parents in the study by Goldbart and Marshall (2004). The fact that parents have to fight for the co-operation from, and control over, services has been reported earlier and stronger, and more persistent parents get more resources and more control (Knox, Parmenter, Atkinson & Yazbeck, 2000; Lärka et al., 2001).

The second research question concerned the aspects of the course that were the least valued by the parents. According to some parents, the information about the course before it started was insufficient. Parents of children with disabilities are competent and should be involved in and informed about the interventions they participate in (cf. Carroll, 2010; Granlund et al., 2008). It is not only unethical to involve parents in interventions without informing them properly about the aims, but, as pointed out by Baxendale et al. (2001), parents' initial expectations and views are important for the total outcome. The importance of correct and early information about the parent programme, by its leaders and by others in the child's team so that the programme becomes integrated "into the pathway of care" (p. 697), was an important conclusion made by the therapists in the study by Pennington and Thomson (2007). The need for information, so that it becomes clear to parents what to expect, was also expressed by the parents in Gumley's study (2011). Harris (2008) also talks about the importance of information. Other ratings and comments made by parents indicate that lack of information is not a central problem in relation to the course. Yet, it certainly is an area that needs further attention.

Parents also had opinions about the right time for participating in the course. The varying views expressed represented parents' different needs. The fact that at least one parent thought the child was not yet at the appropriate developmental stage for the parent to participate in the course is an important finding. The ComAlong course is about early communication and should suit parents of children at different communicative levels. As it seemed, parents' views about the right time for the course were related to children's diagnoses as well. The fact that one of the interviewed mothers was satisfied with the services she had received so far may have been related to the fact that her child had Down syndrome, a diagnosis for which there is lots of clinical knowledge and clear guidelines, which presumably influences the kind of support parents get (cf. Fey et al., 2006).

A recurring view, in the survey as well as in the interviews, which is important from a course quality perspective, is that it may be difficult for parents to find the time to do the homework assignments. Another important view raised by some parents was that there was too much lecturing during the course. ComAlong has a clear structure and aim and it is important that course leaders follow the manual. However, it is equally important that course leaders are flexible and intuitive as far as parents' needs are concerned. Course leaders should be careful with the time in each session so that parents' sharing of views, rather than PowerPoint presentations, dominate.

Comments such as, "the boss was perhaps not very happy," remind us about the fact that a course like ComAlong can be stressful for different reasons, and that professionals need to be careful with parents' time. Like the parents interviewed by Goldbart and Marshall (2004), the present mothers were insightful in describing their children's abilities and needs within different settings. Negative attitudes, lack of knowledge and the importance of educating others in society about AAC were common topics in the interviews (cf. Marshall & Goldbart, 2008; McNaughton et al., 2008). The present data remind us about the fact that knowledge may hurt as well. Although it may feel good to hear other parents talk about their children, such talk stimulates comparison between parents and course leaders must be prepared to meet the different feelings of parents during the course.

The third and final question addressed in the study concerned the effects of the course on parents' and children's communication. Increased knowledge about communication is a main objective of the ComAlong parental course. As it seems, this objective has been fulfilled. The fact that very many parents also experienced a positive change in their own and their child's communication after the ComAlong course is perhaps the most important finding of this study. It is also consistent with existing findings within the field of early communication intervention (cf. Aldred et al., 2004; Girolametto et al., 2007; McConachie, 2005; Pennington & Thomson, 2007; Pennington et al., 2009). The changes observed by parents relate to behaviours targeted in ComAlong, for example, responsivity in terms of following the child's lead and expectant delay, as well as AAC and play related strategies (point-talking at the ComAlong communication boards), and being "clever" and "freezing" actions during play. According to Kaminski et al. (2008), interventions that include practical exercises for parents to do with their children, and that focus on creating positive parent-child interactions, have the best effects. It is promising that the ComAlong parents gained knowledge and learnt strategies that previous research into parental support has shown are relevant.

Parents also reported an increased understanding and expression in their children. These changes may have occurred in the children. It may also have been the case that parents, with increased knowledge after participating in ComAlong, were more observant with regard to their children's communication. A few parents had not observed any changes in communication. Their answers are still indicative of parents' reflection upon and knowledge about children's communication development.

Finally, a theme relating to changes in communication that runs through all the data, and which is expressed explicitly by several parents with regard to possible improvements of the course, is the need for individualized communication support. Similar needs were expressed by the parents in Gumley's (2011) evaluation. Understandably, parents also want help that is customized to their child's specific difficulties and needs. As suggested by both course leaders and parents, the knowledge about communication and AAC that parents get in the ComAlong course can serve as an important foundation for further personal support.

Clinical implications

The findings presented in this study have led to a number of changes in the ComAlong course. A course book, based on the eight sessions in the course, is now available (Thunberg, Claesson, Carlstrand & Rensfeldt, 2010), and Swedish video-vignettes of parents interacting with their children with communication difficulties have been recorded. Multimodal communication, including AAC, is exemplified, and the fact that the films have been recorded in home environments has been appreciated by the parents in the later ComAlong courses. It is now clearly stated for parents and professionals at habilitation centres that ComAlong is a general course about communication and AAC that suits parents of children at different developmental levels and with varying communication needs. There is slightly less focus on pictures in the course than from the beginning, although graphic communication is still seen as important for parents and children with good vision who need to use AAC. Communication boards with fewer pictures have been developed and are given to parents whose children are at pre-intentional communicative levels.

There was a wide clinical need for a course like ComAlong. Accordingly, it has been adjusted to suit the needs of parents of young children with specific language impairments, bilingual parents from other cultures and parents of children and young adults with Rett syndrome. Carroll (2010) stated that there is a need for education focusing on school and school-aged children, and similar ideas have been raised during the development and evaluation of the ComAlong course. A course for parents of older children with complex communication needs (7-20 years) is under development, and another course called ComHome, which includes more individualised support and goal setting, is being implemented.

Educating knowledgeable and respectful course leaders, who believe in the capability of parents of children with communicative difficulties to care for and communicate with their own children, has been a prioritized issue in the AKKtiv project. Evidently, we have been successful in this regard: The course leaders are highly valued by the parents. ComAlong is rapidly spreading across Sweden and other Nordic countries, and maintaining a high level of quality in course leaders will be a main challenge.

Another challenge relates to information, the importance of which cannot be underestimated (Harris, 2008). There is more knowledge about ComAlong amongst professionals working within the habilitation services today than in 2007, and parents are informing each other about the course. Yet, information is an important issue that needs to be considered further. Parents have the right to learn about the course in the first place, and their decision to participate should build on correct and comprehensive information. It is also important that the written information about the course is easy to access, and that it is made clear where parents can get more information if needed.

Strengths and limitations

A large number of mothers and fathers participated in this study and the analysis of both quantitative and qualitative data contributes to a comprehensive picture of parents' experiences of the ComAlong course. The views of the parents in this study are useful, not only for the development of the ComAlong course, but also for the planning and implementation of other interventions for parents and children with communication difficulties.

The fact that only four mothers and no fathers were interviewed is a limitation. Focus was on parents' experiences and opinions, and in this sense the ecological validity of the study is high. However, no member checking was done. It was difficult to find parents and times for interviews. Hence, the decision to not contact the parents and the course leaders for verification of transcripts and analysis was conscious and motivated by the fact that the parents had stressful life situations and the course leaders heavy work loads. It is also important to remember that the study builds on parents' ratings, comments, answers and interviews done after they participated in ComAlong. Objective effects of the course on parents and children's behaviours have not been included. The plan is to present such data in future studies. Still, parental reports as well as information from course leaders suggest ComAlong is valuable in terms of empowering parents. In ComAlong, parents meet other parents of children with communication difficulties and get "tools" for changing the communication with their child. Data have been treated with great care. All through the results and discussion section, citations have been used to verify arguments, and both negative and positive experiences by parents have been presented and discussed.

Conclusions and future research

Communication intervention should build on the best possible evidence, including clinical expertise and stakeholder views (Blackstone et al., 2007; Schlosser, 2003). Families are the primary stakeholders of children with disabilities, and therefore, should be thoroughly involved in interventions relating to themselves and their children (e.g., Granlund et al., 2008). The present study is unique in examining the experiences of a large group of mothers and fathers, as well as of a smaller group of professionals, of an early intervention program that focused on both communication and AAC.

On the whole, parents and course leaders are satisfied with the ComAlong early intervention course. Survey results, as well as interviews, suggest that the course may fulfill important needs for parents of children with varying cognitive and communicative disabilities. Parents have learnt more about communication and AAC, and also experience that communication has changed to the better. Parents also report respectful meetings with competent course leaders, a factor that may have been of utmost importance (cf. Dunst & Dempsey, 2007; Lärka et al., 2001). Contrary to what seems to be a trend of some group activities within today's habilitation practices, parents of children with different medical diagnoses are invited to participate in one and the same ComAlong course. This is appreciated by the parents. The integration of ComAlong into the regular habilitation system is an ongoing process. ComAlong is not meant to replace, but to complement the more individualized support that parents of children with disabilities and communication difficulties need. Too little attention has been given to the actual experiences of different interventions by families of children with disabilities. Hence, this study is an important contribution to the relatively scarce base of evidence within the field of early communication intervention for parents of children with communication difficulties who need to use AAC.

Thanks to the parents and course leaders who participated in the ComAlong course and in this research! Different aspects of ComAlong have been examined (Broberg et al., 2011; Brouwer et al., 2011; Jonsson et al., 2011), and an interview study with bilingual parents is planned. Results from the AKKtiv-project have been presented at the 2nd World Autism Congress in Cape Town, South Africa, 2006, at the conference of the European Academy of Childhood Disability (EACD) in Zagreb, Croatia, 2008, Vilnius, Lithuania, 2009, and Rome, Italy, 2011, at the Nordic Network on Disability Research in Nyborg, Denmark, 2009, at the conference of the International Society for Augmentative and Alternative Communication (ISAAC) in Barcelona, Spain, 2010, and at the research conference on habilitation in Örebro, Sweden in 2008 and 2010.

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