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).

Procedures

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.

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.

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.