In this final post on the potential conflict between Evidence Based Practice (EBP) and Patient Centred Care (PCC) I consider those situations in which your client or the client’s family persists in a course of action that you may feel is not evidence based. This is a very common occurrence although you may not be aware of it. Increasing numbers of surveys reveal that the families of children with disabilities use Complementary and Alternative Medicines/Therapies (CAMs), usually without telling their doctor and other health care providers within the “standard” health care environment.
Despite a growing number of studies it is difficult to get an exact estimate of the prevalence of CAM use among such families (see reading list below). Some estimates are low because families are reluctant to admit to using CAMs. Other estimates are ridiculously high because CAM users are responding to insurance company surveys in order to promote funding for these services and products. However, the best estimates are perhaps as follows: about 12% of children in the general population are exposed to CAMs; the proportion probably doubles for children with developmental disabilities in general and doubles again for children with autism. The most commonly used CAMs are dietary supplements or special diets, followed by “mind and body practices” (sensory integration therapy, yoga, etc.); the use of dangerous practices such as chelation therapy is mercifully much less frequent. Predictors of CAM use are high levels of parental education and stress. The child’s symptoms are not reliably associated with CAM use. The hypothesized reasons for these correlations are that educated parents have the means to find out about the CAMs and the financial means to access them. Having had some personal experience with this, I think that educated parents are very used to feeling in control of their lives and nothing shatters that sense of control as much as finding that your child has a developmental disability. I find it very interesting that the studies shown below counted CAM use after specifically excluding prayer! I may be wrong but I expect that many well educated parents, even those that pray, would look for a more active solution than putting their family exclusively in the hands of God. Educating yourself through internet searches and buying a miracle cure feels like taking back control of your life (although months later when you realize you have thousands of dollars of worthless orange gunk in your basement, you are feeling out of control again AND stupid, but that is another story). Anyway, this is why I think (an untested hypothesis I admit) that patient centred care is actually the key to preventing parents from buying into harmful or useless therapies.
When the parent asks (or demands, as used to happen when I had my private practice) that you use a therapy that is not evidence based, how do you respond in a way that balances evidence based practice with patient centred care?
The most important strategy is to maintain an open and respectful dialogue with the family at all times so that conversation about the use of CAMs can occur. Parents often do not reveal the use of these alternative therapies and sometimes there are dangerous interactions among the many therapies that the child is receiving. It is critical that the parent feels comfortable sharing with you and this will not occur if you are critical or dismissive of the parents’ goals and choices. A PCC approach to your own goal setting and intervention choices will facilitate that dialogue. It is actually a good thing if the parent asks you to participate in a change in treatment approach.
Find out what the parent’s motivations are. Possibly the parent’s concerns are not in your domain. For example dad might ask you to begin sessions with relaxation and breathing activities. You launch into a long lecture about how these exercises will not improve speech accuracy. It turns out that the exercises are meant to calm anxiety, a new issue that has arisen after a change in medication and some stresses at school. As an SLP, you are not actually in a position to be sure about the efficacy of the activity without some further checking and going along with the parent is not going to hurt in any case.
Consider whether your own intervention plan is still working and whether your own goals are still the most pertinent for the child. Sometimes we get so wrapped up in the implementation of a particular plan we miss the fact that new challenges in the child’s life obligate a course correction. Mum feels like her child needs something else and looks around for an alternative. After some discussion you may find that switching your goal from morphosyntax to narrative skills might work just as well as introducing acupuncture!
Talk with the parent about where the idea to use the CAM came from and how the rest of the family is adapting to the change. It is possible that mum knows the diet is unlikely to work but dad and dad’s entire family has taken it on as a family project to help the child. In some ways the diet is secondary to the family’s sense of solidarity. On the other hand mum may be isolating herself and the child from the rest of the family by committing to an intervention that everyone else thinks is bonkers! This will be difficult but efforts to engage the family with counseling might be in order.
Explore ways to help the parent establish the efficacy of the CAM. With the family’s consent you might be able to find information about the alternative approach from sources that are more credible than google. You might be able to help the parent set up a monitoring program to document changes in behavior or sleep habits or whatever it is that the parent is trying to modify. You may even be able to implement a single subject randomized experiment to document the efficacy of the therapy for the child. Dad may enjoy helping to plot the data in a spreadsheet.
Finally and also crucially, model evidence based thinking in all your interactions with the family. When you are suggesting new goals or approaches to intervention explain your decisions. Involve the family in those choices, describing the potential benefits and costs of the various options by referencing the scientific literature. Let the parent know that you are making evidence based hypotheses all the time and watching their child carefully to confirm whether your hypotheses were correct. Involve families in this process so that they become used to thinking in terms of educated guesses rather than phony certainties.
Levy, S. E., & Hyman, S. L. (2015). Complementary and Alternative Medicine Treatments for Children with Autism Spectrum Disorders. Child and Adolescent Psychiatric Clinics of North America, 24(1), 117-143.
Owen-Smith, A. A., Bent, S., Lynch, F. L., Coleman, K. J., Yau, V. M., Pearson, K. A., . . . Croen, L. A. (2015). Prevalence and predictors of complementary and alternative medicine use in a large insured sample of children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 17, 40-51.
Salomone, E., Charman, T., McConachie, H., Warreyn, P., Working Group 4, & COST Action “Enhancing the Scientific Study of Early Autism”. (2015). Prevalence and correlates of use of complementary and alternative medicine in children with autism spectrum disorder in Europe. European Journal of Pediatrics, 174, 1277-1285.
Valicenti-McDermott, M., Burrows, B., Bernstein, L., Hottinger, K., Lawson, K., Seijo, R., . . . Shinnar, S. (2014). Use of Complementary and Alternative Medicine in Children With Autism and Other Developmental Disabilities: Associations With Ethnicity, Child Comorbid Symptoms, and Parental Stress. Journal of Child Neurology, 29(3), 360-367.