Alternative And Complementary Therapies: For Children And Youth With Brain Injury - Part 1: Controversies

Keeping Current © Peter Rosenbaum, Debra Stewart, 2003

This Keeping Current is one of a series of reports that discuss the effectiveness of rehabilitation interventions for children and youth with brain injury. When reading the Keeping Currents in this series, you will notice that they include research studies that involve children and youth with a variety of conditions. These studies were included because of the limited amount of research on rehabilitation interventions for children and youth with brain injury.

We encourage you to be critical when deciding what information relates to your situation. The most relevant information will come from studies that address the specific condition in question. However, be aware that research findings from studies involving children with different conditions may be relevant when the causes of the conditions are similar ( for example, brain injury and cerebral palsy are both caused by injury to the brain) or when the children's functional difficulties are the same.

Support for the research to conduct this critical review comes from a grant from The Economical Insurance Group

Introduction

This report discusses the controversial issues about alternative and complementary therapies for children and youth with developmental disabilities and neurological problems (including children and youth with brain injury). It reviews the "what, why, how and who" of alternative and complementary therapies and explores the controversies about alternative and complementary therapies in relation to conventional "western" medicine. Part 2 of this Keeping Current - "Evaluating the Evidence" - provides guidelines for evaluating conventional and internet evidence about alternative and complementary therapies. Together, Part 1 and Part 2 demonstrate the challenges facing consumers and service providers in making informed decisions about alternative and complementary therapies.

WHAT do we mean by conventional western medicine?

The current practice of medicine in the Western world has been strongly influenced by concepts that have their roots in the biomedical sciences. Within this model there is a strong belief that there are specific "causes" of many diseases, and this belief remains powerful even in the face of an increasing recognition of the multi-factorial nature of almost all disorders known to mankind. This belief has contributed to a continuing - and often very fruitful - search to understand the biological basis of diseases. Such knowledge is believed to be a foundation for the rational treatment of these disorders.

A second important force in conventional western medicine is the value placed on "rules of evidence" by which the effectiveness of both conventional and innovative therapies is evaluated. These ideas have been promoted most clearly by experts in what is known as the discipline of "Clinical Epidemiology". This branch of clinical and health services research promotes the use of the strongest and most appropriate research methods to evaluate, among many interests, whether treatments do more good than harm when applied to people with conditions for which the treatments are thought to be effective (Sackett et al., 1991). The rules of "critical (analytic) appraisal" are applied to assess the extent to which any specific study or body of evidence meets these accepted aspects of design and analysis of research. This is done in order to make an informed judgement about how strongly one might pay attention to the findings of the research.

WHAT do we mean by alternative and complementary therapy?

In talking about treatments that fall outside of conventional western medicine, two quite similar ideas are often used. Alternative therapies have been defined as "…those treatments whose aim is to prevent, diagnose and improve disease or disability, but which have not been approved by health authorities" (Lynoe, 1992, p. 217). Complementary therapies refer to "…a group of therapies and diagnostic disciplines that exist largely outside the institutions where conventional health care is taught and provided" (Zollman & Vickers, 1999, p. 693). Alternative and complementary therapies are also referred to as alternative and/or complementary medicine, and comprise a collection of approaches that range from variations of currently accepted ideas (for example, the use of large doses of vitamin E to prevent ageing) to what are considered to be innovative but unproven notions (for example, the use of subthreshold electrical stimulation of muscles to improve function in children with cerebral palsy [Armstrong, 1993; Rosenbaum et al., 1993]).

In a recent survey of service providers, consumers and insurance personnel, the following practices were identified as alternative or complementary therapies currently being used with children with acquired brain injury in North America: hyperbaric oxygen therapy, Chinese medicine, naturopathy, homeopathy, herbal therapy, therapeutic touch, constraint induced therapy, patterning as provided by the Association for Neurological Development (AND), craniosacral therapy, massage, chiropractic and acupuncture.

A literature review was conducted for each of these topics. Unfortunately, few, research articles were found that involved children and youth with brain injury. As such, the authors of this report decided to focus on broad issues related to the use of alternative and complementary therapies.

WHY is there controversy about alternative and complementary therapies?

Against the background of conventional western medicine, alternative and complementary therapies both challenge conventional treatments and elicit criticism for a number of reasons. These therapies are often based upon theories about disease causation, or mechanisms of action that differ from, or may be opposite to, the current thinking about those issues within conventional western medicine. As such, they may be regarded with scepticism, suspicion or even hostility.

Further, the evidence upon which claims of effectiveness for alternative and complementary therapies are made is usually based on anecdotes and testimonials, or upon research of questionable quality. Observations that appear to support the claims of the proponents of alternative and complementary therapies may be interpreted more on the basis of beliefs and expectations of the outcomes than on solid unbiased observations. Claims about the effectiveness of alternative and complementary therapies may also be exaggerated beyond the evidence to support these claims. This may occur when proponents make claims of cures for disorders for which no cures are recognized within conventional medicine, or when they assert that a treatment developed for one disorder will work for many. Such exaggerations will easily lead the critical observer to doubt the whole story and discard all of the information even though some of it may have been valuable. While it is recognized that many alternative and complementary therapies may contain within them the seeds of good ideas or breakthroughs, they may simply not have been studied widely or well enough to have been shown "scientifically" to be valuable.

Another important aspect concerning the tension between differing views of clinical practice concerns how people might come to believe that any type of therapy "works". People often interpret a change in health status or function associated with any event (treatment or other phenomenon) as evidence that it works. It is important to recognize that for many conditions, particularly those that are chronic in nature, we often lack a clear understanding of the natural history of these disorders - that is, what variations in outcome might occur even in the absence of treatment. The more variation that occurs "naturally" the more difficult it is to be sure that it was an intervention rather than random changes in the condition that caused the effects observed. It is for this reason that randomized

clinical trials, which take random changes into account, are the highest quality experimental model by which to assess effectiveness (and to determine evidence of harmful effects) of any treatment.

In childhood conditions one must also add the consideration that change occurs naturally - because of development. Thus, when observing change in children's abilities over time, the interpretation of change, and particularly the way in which we attribute the changes to one or another cause, must include the possibility that it is natural development rather than the specifics of a treatment that is causing the changes.

WHY do people find alternative and complementary therapies so appealing when there is little scientifically sound evidence of their effectiveness?

There are a number of possible reasons for people to embrace therapies that conventional western medicine has not endorsed. In chronic conditions and those with a bleak prognosis, there are limits to the capacity of conventional western medicine to provide answers, and particularly to cure these disorders. Both this reality, and perhaps the sense of futility experienced by some practitioners and patients, may prompt some people to seek alternative ways to manage what seems to be a hopeless situation. The claims of effectiveness of alternative and complementary therapies, and the hope that is usually associated with these claims, will encourage people who perceive that conventional western medicine has nothing more to offer. Some people also view alternative treatments to be "healthier" options to medication and surgery. Furthermore many people wish to have as much control over their lives as possible, and the pursuit of alternative and complementary therapies may be one way to achieve this. Finally, some people believe that some alternative treatments are effective, but have not yet been proven by research studies to be so.

HOW do people learn about alternative and complementary therapies?

In addition to word of mouth and the media, an abundance of information is available on the Internet. Information from around the world is instantly available to people and is often very compelling. Whereas the results of scientific studies are generally published only after a period of scrutiny by people with detailed knowledge of the subjects (what is known as "peer review"), the same is not necessarily true of material posted on the Internet. Thus, information about alternative and complementary therapies may appear much more rapidly, and be subject to less critical appraisal, on the internet than in conventional science.

WHAT motivates providers of alternative and complementary therapies?

Generally the providers are people who believe strongly in what they are promoting, based on their understanding of disease and their experiences of life. The power of anecdotes and testimonials influences their thinking, and such experiences often serve as the primary evidence that the therapy is effective (versus the "rules of evidence" of conventional western medicine). Such people may also be sceptical about the approaches of conventional western medicine, and perhaps critical of the expectation for scientific proof and evidence when there are so many compelling reasons to act now.

It must also be recognized that for many practitioners of alternative and complementary therapies there is likely to be a profit motive involved in their promotion of their "product". This is not a criticism as such, but is identified as one of the factors that may create tension between people who are interested in providing or using alternative and complementary therapies and the people who expect scientific evidence to be provided.

Conclusion

This report has explored issues related to the use of alternative and complementary therapies for children and youth with a variety of developmental and neurological conditions. Controversies were discussed to encourage families and service providers to carefully evaluate new ideas before trying them.

For further discussion of alternative and complementary therapies for children and youth with brain injury, we suggest that you read Part 2 of this Keeping Current - "Evaluating the Evidence". It discusses the evidence for alternative and complementary therapies for children and youth with brain injury. Further, it provides strategies for you to consider when gathering your own evidence, to help you make informed decisions about the therapies you that choose.

Update written by:

Peter Rosenbaum, MD, FRCP(C), Professor of Pediatrics, McMaster University; Co-Director of CanChild Centre for Childhood Disability Research; and Canada Research Chair in Childhood Disability.

Debra Stewart, MSc. OT Reg. (Ont.), Assistant Clinical Professor, School of Rehabilitation Science and Associate Member, CanChild, McMaster University

Want to know more? Contact:

Peter Rosenbaum

CanChild Centre for Childhood Disability Research
Institute for Applied Health Sciences, Room 408
1400 Main St. W., Hamilton, ON L8S 1C7
Tel: 905-525-9140 x 27850 Fax: 905-522-6095