Predicted and observed outcomes in preschool children following speech and language treatment: Parent and clinician perspectives

Abstract

Parents of 210 preschool children (age 2–5.7) and their clinicians were asked to describe their expectations for therapy and the changes they observed following treatment. Based on content analysis of the parents’ and clinicians’ responses, it was apparent that the comments aligned with the World Health Organization’s (WHO) International Classification of Functioning, Disability and Health—Child and Youth version (ICF-CY) framework. Parents and clinicians observed positive changes across the ICF-CY domains of Body Functions, Activities and Participation and Personal Factors following therapy. Parents noted twice as many changes in the Participation and Personal Factors domains as clinicians. Parents described improvements in play, socialization, confidence and behaviour at home, school and in the community—changes not typically captured by other preschool speech and language outcome measures. New outcome measures need to be based on actual observations of change by both parents and clinicians to ensure that they measure a sufficiently broad-based range of skills.

Learning outcomes: The reader will better understand (1) the parents’ expectations for therapy (2) the types of changes that can be associated with speech and language therapy and (3) the need for broad-based outcome measures that can evaluate speech and language outcomes.

Introduction

In order for speech–language pathologists to evaluate the effect of their interventions on children’s lives, it is essential that relevant and valid outcome measures be developed (Yorkston, Klasner, & Swanson, 2001). Outcomes research is needed to determine the impact of speech and language therapy and to inform evidence-based practice (Hammell & Carpenter, 2000). Clinicians need outcome information to learn which children, with which kinds of problems, will benefit most from various types of speech and language therapy (Beitchman, Nair, Clegg, & Patel, 1986). Policy makers need outcome information to help guide policy decisions regarding health and community-based service needs (Majnemer & Mazer, 2004). The first step in these processes is to identify the changes that are associated with speech and language therapy so that we can focus on the collection and evaluation of the most important and relevant outcome information.

In the past 10 years, health care paradigms have shifted beyond a focus on impairments to a focus on enhancing a person’s ability to participate in their community. In 2001, the World Health Organization (WHO) published a revised model of Functioning, Disability and Health (ICF) to reflect this change. The new model represents a dynamic system, which has expanded ‘points of entry’ (Rosenbaum & Stewart, 2004). This framework recognizes that interventions at any or perhaps all levels may be important, appropriate and interlinked (Rosenbaum & Stewart, 2004). The new ICF model now includes Contextual Factors (i.e., Environmental and Personal Factors). Environmental Factors can be social, cultural or institutional in nature (see Fig. 1). Personal Factors include gender, upbringing, coping styles, social background and character style (Rosenbaum & Stewart, 2004; WHO, 2001). The ICF model acknowledges that the settings in which people live their lives play a central role in their capacity to function.

Recently, the WHO published the International Classification of Functioning, Disability and Health—Children and Youth Version (ICF-CY). This derived classification of the ICF framework provides a common language for documenting and measuring health and disability in children and youth (WHO, 2007, p. vii). The ICF-CY adheres to the structure of the ICF while recognizing that child development is a dynamic process (WHO, 2007, p. xv) The challenge is to translate this framework into practice by shifting beyond a traditional biomedical, impairment-focused treatment model to a focus on adaptation of tasks, provision of environmental facilitators and removal of environmental barriers that interfere with a child’s ability to communicate in their home and community (Rosenbaum & Stewart, 2004). Several researchers have recommended that clinicians use the ICF framework to develop treatment goals that focus on Activities and Participation (McLeod, 2004; McLeod & Bleile, 2004; Threats & Worrall, 2004). To measure the impact of such treatment goals on children’s lives, we must have appropriate measures that allow the profession to document and report outcomes across the entire ICF framework from physical deficits to barriers to participation (Simmons-Mackie & Damico, 2001; Threats, 2003).

A recent literature review found only two comprehensive speech–language pathology outcome measures for preschool children: the American-Speech-Language-Hearing Association National Outcome Measure System (Pre-K NOMS) and the Therapy Outcome Measures (TOMs) (ASHA, 1996, Enderby, 1997). The Pre-K NOMS was developed by a committee of content experts, peer reviewed for face validity, field-tested and then revised (Dobrzykowski, 1997). Although widely used across the United States and in parts of Canada, there have been no published studies of the reliability, validity or responsiveness of this measure. A responsiveness study completed by the authors indicated that the Pre-K NOMS significantly underestimated ‘real life’ changes associated with speech–language therapy (Thomas-Stonell et al., 2007). The Pre-K NOMS measures change primarily at the ICF levels of Body Function and Activities, but not at the levels of Participation, Environmental or Personal Factors. In addition, the Pre-K NOMS evaluates communication changes only in the specific areas that correspond to the treatment goals. Both clinicians and parents consistently observed changes in communication skills and abilities such as attention and socialization that were not treatment goals.

Developed in England, the TOMs was based on a retrospective review of speech–language pathology charts (Enderby, 1997). It combined a medical model with an earlier version of the WHO framework—the International Classification of Impairment, Disability and Handicap (ICIDH) (WHO, 1980). Clients are assigned to specific diagnostic categories (e.g., dysarthria) and then rated in 4 levels: ‘Impairment’, ‘Disability’, ‘Handicap’ and ‘Wellness/Distress’. The TOMs reflect a broader view of outcome measurement than the Pre-K NOMS by including clinical, functional, and social issues (Roulstone, John, Hughes, & Enderby, 2004). A client receives one score in each rating scale, which has multiple descriptors (e.g., roles/social integration/decision making). This means that measured change cannot be attributed to specific descriptors and there is no way to know how many of the descriptors have changed. An extensive research project was completed in Australia to adapt the measures (AusTOMs) to their health care system, however, the AusTOMs continues to use the earlier linear ICIDH framework (Australian Institute of Health and Welfare, 2003; Perry & Skeat, 2004). A new generation of outcome measures is needed that reflects the revised ICF framework and permits more precise tracking of individual outcomes.

Information generated by outcome studies is only useful if the measure is clinically applicable and scientifically sound (van der Putten, Hobart, Freeman, & Thompson, 1999). While the profession is under pressure to collect outcome information, neither available measure is well suited for today’s healthcare paradigm. The Pre-K NOMS has limited responsiveness and no published reliability or validity studies. The TOMs uses the outdated ICIDH framework and provides only general descriptions of change. New outcome measures are needed that incorporate the new ICF health-care paradigm and are based on empirical data collected from clients and families (Rosenbaum, King, & Cadman, 1992; Trigg, Wood, & Hewer, 1999). Qualitative data are needed to provide insights into the changes associated with treatment and to inform the development of future quantitative outcome instruments.

A literature review in Medline, CINAHL and international speech–language pathology journals revealed no studies that described, from a holistic viewpoint such as the ICF framework, the changes associated with speech and language treatment. Some preschool program evaluation studies measured outcomes directly related to the program goals, but these did not investigate whether measured outcomes resulted in changes at home or in the community (Gaines & Gaboury, 2004; Girolametto, Pearce, & Weitzman, 1996). While speech–language pathologists have heard anecdotal comments from parents and clients about changes associated with speech and language therapy, these comments have not been collected and examined in a systematic fashion (Simmons-Mackie & Damico, 2001).

Qualitative research methods are ideally suited for investigating details associated with treatment outcomes (Damico & Simmons-Mackie, 2003). They allow the researcher to view children in the context of their environment and to understand the dynamics of that environment, for it is there that the consequences of Activity Limitations and Participation Restrictions acquire meaning (Jongbloed, 2000). Content analysis is a research method that uses a set of procedures to make valid inferences from text (Weber, 1990). It combines attributes of both qualitative and quantitative techniques to produce counts of key categories and is ideally suited for analyzing open-ended survey questions in health care research (Hsieh & Shannon, 2005). In this study, content analysis was used to examine the observations of change provided by the parents and clinicians of 210 children who received speech and language therapy.