2003 IFA Congress: Montreal, Canada

Work in Progress: An Exploration of Parents’ Experience of the Lidcombe Program

Rosemarie Hayhow
Speech and Language Therapy Research Unit, Frerzchay Hospital, Bristol BSI6 LE, UK

SUMMARY

This presentation reports on the preliminary findings from a study that aims to explore parents’ experience of the Lidcombe Program (LP), a parent based treatment for early stuttering. A discussion of why this exploration is being undertaken is followed by consideration of some of the methodological issues that are being addressed. Themes that have emerged from six pilot interviews are presented with a brief discussion of how these will inform the next stage of the study.

  1. Introduction
Why might parents’ experience of the Lidcombe Program (LP) be worth investigating? Firstly, and most importantly it is a program for pre-school children who stutter that is administered by parents under the guidance of their speech and language therapist (slt) (Onslow et al., 2003). It makes considerable demands of parents in both short and longer term and the success of the therapy is likely to be influenced by the therapists’ and parents’ ability to work together. Secondly, concerns have been raised in the UK regarding the extent of the demands that are made of parents (Rustin & Cook 1997). Thirdly, at the clinical level there is considerable debate among SLTs concerning the role of parents in therapy and the benefits and problems that arise from different ways of involving parents. Learning about the parents’ perspective of a specific therapy approach may inform our understanding of the parents’ role and their special contributions to their children’s progress.

Within the stuttering literature there is discussion of parents’ needs and of their role with pre- school children. The main areas identified are asfollows: Information for parents on early stuttering, there are a variety of leaflets and protocols to guide the therapist (e. g. Peters & Guitar, 1991; British Stammering Association); Tuition on how to provide a fluency enhancing home environment during the child’s vulnerability to fluency disruption (e.g. Manning 2001); Modification.of specific parental communication behaviours considered instrumental in maintaining stuttering, for example, slowing parental rate of speech, turn taking, pausing times (Rustin et al., 1996; Stewart & Tumbull, 1995); Older children may be taught a slower, more relaxed speech pattern in the clinic and parents then required to model this while talking with their child at home (Ramig & Bennett, 1995). In all of the above approaches there is an assumption that parents are able to make good use of the information or instructions imparted and that their children’s speaking will benefit as a result.

The Lidcombe Program differs from the above approaches in several important ways: Firstly, the parents are responsible for carrying out the therapy and they start Working with their child during the first therapy session. The rationale for this arises from the early work that showed that operant techniques can be effective in reducing stuttering in young children in an experimental context (Martin et al 1972). It follows from this work that if early stuttering is an operant like behaviour then Contingencies need to occur in the child’s everyday speaking environment in order that experimental or clinical changes in stuttering are generalised. Parents therefore need to be able to carry out in the home environment, as well as in the clinic, the treatment they see the therapist demonstrate. Secondly, the training and coaching of parents is a crucial part of the program and considerable time is given to this in each therapy session. Training the parent and individualising therapy are time consuming activities. So the focus of the sessions is usually on the child, the child’s speaking and then problem solving around ways of maximising the effectiveness of the therapy. Thirdly, unlike some of the other approaches it is not a part of the program to focus on the parental experiences unless they are relevant to the achievement of the program aims. This does not necessarily mean that the parents’ experiences of therapy are not considered important but rather that in this approach they are not a high priority for exploration.

The discussion so far has considered some of the background to this study but does not answer the question of why I am personally interested in the parents’ experience of the program. There are several motivating factors for me. Firstly, some years ago I developed a strong interest in the experience of stammering and what it means to older clients and to parents. The theoretical justification for this arose from Fransella’s (1972) work and her use of personal construct psychology (Kelly 1955) to test the notion that changes in thinking or construing could lead to changes in behaviour. This theoretical framework still influences my thinking and therapy with older clients. I remain interested in personal meanings and how these influence behaviour and the behavioural options that might be open to the individual. Secondly, I have children and although they are no longer pre-school I know how different the experience of trying to help each of them has been and continues to be. Over the years, my experiences as a parent have confirmed for me the importance of seeing both child and parent as active contributors to any exchange. Children are rarely passive recipients of their parents’ good intentions. It follows therefore, that parents working directly on their children’s speaking is a potential minefield. Thirdly, there is a lack of literature on parents and their perceptions of therapy and stuttering. Therapists talk about the importance of parents in stuttering therapy but often the voice is that of the therapists and I am interested to hear the parents’ voices within our literature. I think it permissible to generalise and say that parents are expected to be more involved in their children’s development and education than was the case 50 years ago. Yet our literature has very little about what these changes or new ways of involving parents means to them and to their relationships with their children. Glogowska & Campbell’s (2000) study of parents’ account of their child’s speech and language difficulties and therapy shows how much there is to learn from such careful questioning and listening.

  1. Methodological considerations
Within the health care literature in the UK there is a growing interest in consumer views demonstrated in the Clinical Governance procedures within our National Health Service. Healthcare studies are growing and methods of obtaining consumer views are developing and becomingly increasingly recognised as legitimate areas of study (Fitzpatrick, 1993; Stallard, 1996). It is no longer necessary in these fields to labour the importance of listening to what people have to say. Nor is it necessary to debate the relative values of quantitative and qualitative methods but rather discussion can focus on choosing the best methodology to suit the research questions or inquiry (Bryman 1988). When the research question or inquiry is concerned with people’s experiences and when there is no theory or hypothesis to test then qualitative methods are appropriate. This narrows the field but as Henwood (1996) discusses decisions still need to be made with regard to the particular strand of qualitative research that is appropriate for the task. The epistemological position needs to be distinguished from the research methodology which needs to be distinguished from the methods to be used. For example, a previous study by Hayhow & Enderby (unpublished report) used a questionnaire that aimed to discover whether or not certain concerns that had been raised in criticism of the LP were justified with this sample and to obtain a broad view of the best and worst things about the therapy for the parent and for the child. A large sample was recruited (146 questionnaires distributed and106 returned) which demonstrated that parents conducting the LP with their children are willing to share their thoughts about the experience. The questionnaire used ratings and free text and so some of the responses were descriptive but relatively superficial. This data helped establish that there were some similarities between parents’ experiences of the Lidcombe Program 86 Theory, research and therapy in fluency disorders and that their perceptions of their children’s responses also showed some uniformity. In broad terms a study of this type helps to check out if professionals’ views are in accord with consumer views and whether some of the underlying assumptions made about the intervention work in practice. In this study the frequency of particular themes or comments was computed so giving information about areas of consensus and hence providing some measure of validity to the views expressed.

The current exploration aims to find out more about the ‘lived experiences’ of the parents. It aims for a deeper level of understanding about the therapy process from the perspective of the interviewees and is not guided by existing hypotheses or theories. This study is concerned with eliciting experiences rather than the discovery described above and so in-depth interviews are more appropriate than highly structured interviews or questionnaires (Silverman 2000). The analysis of these interviews will also be different. The aim is not to code the content and then count the frequency with which particular issues or themes arise but rather to describe the range of experiences. As more data are accumulated so the emerging themes can be explored through the interview process.

The final part of this presentation is concerned with the six pilot interviews.

The preparation involved clarification of the research questions. An interview guide was developed by translating these into possible interview questions (Kvale, 1996). For example, there is a research question around the extent of the demands made of parents and so the interview guide lists interview questions that can be asked if this area doesn’t come up spontaneously. The possible questions are; ‘How have you dealt with difficulties with the program?’; ‘What keeps you going with the program?’; ‘What helps to keep your child co-operative?’; ‘How do you manage to find the time?’.

With this type of interviewing it is accepted that people will make choices about what they say and that the story they tell may different if they were talking to someone else or if the purpose of the interview was different. All the parents, except one, who I interviewed for the pilot had reached a stage in therapy where their child was rarely stammering. They were reflecting on their experiences and not looking for guidance. However, in all the interviews I was struck by the similarities between these research conversations and the sort of conversations I might have with an adult client. I found myself using similar conversational strategies and the parents seemed to enjoy the opportunity to reflect and through talking re-think some aspects of the therapy process. The next interviews I do will be with parents currently engaged in earlier stages of therapy and I will need to be clear about the purpose of the interviews and my role as researcher. There may be tension between research and therapy in these conversations. I will need to monitor these complimentary and potentially Conflicting roles. It could be argued that I should not disclose my professional background but this seems dishonest. And yet if parents know I am an slt then this will influence what they chose to say. It seems likely they will not want to jeopardise their therapy in any way and although their interview is confidential they may wish to present their experiences as positively as possible. In a questionnaire study Fitzpatrick (1993) found that people were reluctant to criticise healthcare experiences.

  1. Results
I will now share some of the themes that have stood out after the preliminary analysis.

Who does the therapy?

Initial shock at being told they would do the therapy was a recurring theme. Some expressed the inconsistency in their thinking in that they know parents are the most influential people in their children’s lives and that speaking occurs primarily in the home environment but they had hoped that the slt might be able to fix the stammering. It is interesting that parents are often told they ‘should get the stuttering seen to’ or something similar which also flies in the face of logic and holds out the hope that there is something magical the slt can ‘do’. It will be interesting to find out more about the process of adjustment to the parents’ role.

Developing skills

Some expressed difficulty with the transition from giving feedback on the child’s speaking in structured conversations to predominantly giving feedback in unstructured conversations. It seems there is a risk that the parent loses the sense of structure and also loses sight of what they are trying to do and how they should do it. Interestingly, slts at Lidcombe follow-up or support days have also reported a sense of losing their control of therapy at this stage. Some children make good progress initially and then plateau at the point where therapy should be in predominantly unstructured conversations perhaps reflecting parental and therapist difficulties at this stage of therapy. It will be useful to link parents experiences with changes in the child’s speaking to try and understand more about this inter-relationship.

Siblings

It seems that stuttering and stuttering therapy can be difficult for siblings. Mothers sometimes needed to be ingenious in finding ways to work with their child’s stuttering without siblings feeling resentful of the extra attention. Before therapy some had found the stuttering very difficult to manage because of the impact of stuttering on family communication. 1 think I need to probe sibling issues in my next interviews.

Fathers

Fathers were also mentioned, some wanting to be more involved while some saw the child’s stuttering and therapy as the wife’s domain. One father attended the interview with his wife and he was very clear about wanting more information on the therapy and how he would have appreciated meeting the slt with his wife early in therapy so that he could understand what was going on. The wife in this couple felt uncomfortable in the messenger role and would also have liked such a meeting. These last two points have made me more aware of issues around the integration of treatment into family life and this is particularly relevant when children’s progress is slow.

Problem solving

There were differences in the ways parents accounted for variations in their children’s stuttering. For example, some were very much linking stuttering with anxiety, changes within the family, new events etc. Others showed evidence of a different sort of problem solving linking the child’s speaking to the amount and type of feedback the parent was giving. The latter group had maybe intemalised a behavioural way of understanding their child. This raises the issue of compatibility between the LP and their usual way of dealing with or understanding their child’s behaviour and I need to explore ways of asking about this.

Finally, all the mothers were very welcoming and seemed to really enjoy the opportunity to reflect on their experiences. They were positive about their therapy and liked the idea that by sharing their views they might help take our understanding a little further. This has made me reflect on the possible value of occasional parent only sessions during LP to help us all take stock and reflect on what is going well in therapy and what needs to be addressed.

The next steps are to complete a more detailed analysis of these pilot interviews and adjust the interview guide accordingly. Then a new phase of interviewing will start and subjects selected to give as much variation as possible. At least two interviews will be conducted with each parent, the first will be early in treatment and the second at a later stage.

References
British Stammering Association Does your young child stammer? London

Bryman, A.(1988) Quantity and quality in Social science. London: Routledge

Fransella, F. (1972) Personal change and reconstruction. London: Academic Press.

Fitzpatrick, R. (1993) Measnrernent of patients’ satisfaction with their care. London: Royal College of Physicians 88 Theory, research and therapy in fluency disorders

Glogowska, M. & Campbell, R. (2000) Parental views of involvement in pre-school speech and language therapy. International Journal of Language & Communication Disorders, 35. 391-405

Hayhow, R. & Enderby, P. (unpublished report) The Lidcombe Program of early stuttering intervention: parental perspectives. Bristol, UK: Speech and Language Therapy Research Unit, Frenchay Hospital.

Henwood, K. (1996) Qualitative inquiry: perspectives, methods and psychology. In T.E. Richardson

(Ed), Handbook of qualitative research methods for psychology and the social sciences. Leicester, UK: The British Psychological Society Books.

Kelly, G. (1955) The psychology of personal constructs. New York: Norton.

Kvale, S. (1996) InterViews, An introduction to Qualitative Research interviewing. Thousand Oaks, CA: Sage Publications

Manning, W. (2001) Clinical decision-making in fluency disorders. Vancouver. Singular - Thomson Learning.

Martin, R., Kuhl, P. & Haroldson, S. (1972) An experimental treatment with two preschool stuttering children. Journal of Speech and Hearing Research, 15, 743-752.

Onslow, M., Packman, A. & Harrison, E. (Eds.) (2003) The Lidcombe Program of early stuttering intervention, A clinician ’s guide. Austin, TX: Pro-Ed.

Peters, T. & Guitar, B. (1991) Stuttering: An integrated approach to its nature and treatment. Baltimore, Williams & Wilkins.

Ramig, P. & Bennett, E.l995 Working with 7-12 year old children who stutter: Ideas for intervention in the Public Schools. Language, Speech and Hearing Services in Schools, 26, 138-150.

Rustin, L. & Cook, F. (1997) Commentary on The Lidcombe Programme of early stuttering intervention. European Journal of Disorders of Communication., 32. 250-258.

Rustin, L., Botterill, W. & Kelman, E. (1996) Assessment and therapy for young disfluent children: family interaction. London: Whurr.

Silverman, D. (2000) Doing Qualitative Research: A practical handbook. London: Sage Publications

Stallard, P. (1996) The role and use of consumer satisfaction surveys in mental health services.

Journal of Mental Health, 5, 333-348. Stewart, T. & Turnbull, J. (1995) Working with dysfluent children. Bicester, UK. Winslow Press.

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