Do your own research
After a diagnosis just when you need clear answers the most, many parents, carers or patients are thrown into a world of evidence-based vs non evidence-based therapies, and told to “do your own research”. This is hard to when you’ve been hit by a wave of information, and even harder when you don’t know where to start.
An evidence-based treatment means there has been research done to show cause and effect – the treatment has been shown to do what it claims to do. At the highest level, this means the treatment has undergone trials which are randomised, double-blind and placebo controlled (so nobody can fudge the results). The results of research like this are both very accurate and painfully slow.
Most traditional medical professionals will only recommend evidence-based treatments, as it would be unethical for them to do otherwise. This can be frustrating to parents or carers who are looking for more than what modern medicine can currently provide. It is worth noting that most medical professionals will not recommend many alternative therapies not only because they have seen patients waste a lot of time and money following these leads, but also because some of them can cause real harm.
So what does it mean to “do your own research” when your doctor is telling you that a cure doesn’t exist, and an alternative practitioner is claiming to have that very cure? First, try to tune out the noise – good news stories from alternative practitioners and other parents can be very compelling, but it’s important to remember that they are a lot less likely to also give you the bad news stories, where something went wrong. Anecdotal evidence is not good evidence.
Instead, look for a neutral source of information – this can either take the form of talking to both supporters and detractors of the therapy, and listening carefully to what they both have to say, or doing a lot of internet searching, or both. Just remember, you are looking for scientific evidence, not stories of one case where it worked.
Next, look into the research behind the therapy. Was the person conducting or funding the research a neutral party, or did they stand to gain a lot of money if the evidence worked in their favour? In other words, is the research biased? Was the sample size (number of people participating in the research) statistically significant, or was it conducted on six healthy adults who don’t even have the condition you are trying to treat? Does any research exist at all?
If the answer is that there is no research, or that the research is poor or inconclusive, consider that this means you or your loved one will be acting as a guinea pig for the therapy if you choose to follow it. Is that a risk you are willing to take?
Once you know a little bit more about the therapy or treatment, consider the consequences. This means looking at all the possible harm the treatment can do. Think through the worst-case scenario for the therapy. If it doesn’t work, what is the worst that could happen? If you try art therapy with your child and it turns out they don’t enjoy painting, the worst that can happen is you have wasted a few afternoons and class fees. In other cases, you may have wasted a lot of money. For those who can afford it, this may be less harmful than for others who truly cannot afford the loss.
With some alternative therapies worst-case scenario may be more serious. For example, following a dairy-free diet may seem harmless, but without properly supplementing the calcium dairy would normally provide, growing children can end up with brittle bones that break far too easily. In the first instance, when thinking about whether to proceed, you should ensure that the therapy will do no harm.
This leads to the final point – finding a combination of medical practitioners who you trust, and who are prepared to work with you and with each other. For example, in the case where you are recommended a dairy-free diet, talking to your GP or a dietician will immediately bring to light the possibility of a calcium deficiency, and ensure that you are able to supplement this vital mineral. A doctor may be able to provide information about which essential oils in which doses are poisonous if consumed, or to warn you of the risks of lifelong kidney damage if chelation therapy is undertaken in the wrong way or for the wrong reasons.
If you choose to follow alternative therapies that your doctor does not recommend, it can still be helpful to talk to your doctor about ways to conduct that therapy as safely as possible. They may be able to give you new information, or highlight risks and ways to mitigate those risks that you would not have considered on your own. Because of this it is important to find a doctor who will work with you, even if they don’t agree with all your choices.
Finally, keep a level head, and remember that if a treatment sounds too good to be true, it probably is. Take your time in making decisions, and weigh up the pros and cons. Remember that the time and money you spend on any treatment is time and money that can’t be spent on holidays, favourite activities or just enjoying a moment of quiet. Think about whether the benefits outweigh all these costs, and always, always do your research.