An evaluation guide for the use of complementary and alternative therapies in children with cerebral palsy.
This guide is designed for parents who are considering a complementary or alternative therapy for their child with cerebral palsy.
This guide recognises that when deciding on using a complementary or alternative therapy parents are faced with a number of issues specially related to complementary or alternative medicine.
By using this guide you will be able to make a more informed and confident decision about whether a complementary or alternative therapy is suitable and safe for your child.
The evaluation framework is made up of 4 parts:
Part A The needs of your child
Part B The therapy: details, theory and costs
Part C Qualifications and experience of practitioners
Part D Outcomes.
How to use the evaluation guide
The evaluation guide is designed for you to use whilst reading information about a complementary or alternative therapy, raising points to consider when making choices. This can be either information that you have received in paper form or have accessed through the internet.
Each part of the guide follows the same structure to help you evaluate the therapy.
Each section of the guide is made up of individual questions. The first part gives you background information and guidance about the kind of information you should expect a website or information leaflet to give you. The second part asks you to evaluate the quality of the information you have just read, on a points scale. One is the lowest score that you can give a therapy. When deciding on the rating to give a therapy, you should read downwards until you find the statement that best fits the therapy. If you cannot decide between two statements then decide on the lower rating number.
While the evaluation guide is intended to be used from section A to D, if after starting on the evaluation framework, you feel strongly that the therapy does not meet the criteria for your child, then discontinue.
Part A: The needs of your child
Thinking about difficulties and outcomes
Before starting to decide if a therapy is suitable for your child, it is helpful to think about what the 5 biggest difficulties, your child experiences in their day-to-day life due to cerebral palsy, and the 5 things that you would most like to see a change in following therapy (outcomes).
Part B: The therapy: details, theory and costs
What is the therapy?
When making a decision about a therapy it is important to know:
- Who provides the therapy, name of practitioner or organisation, the practitioner or organisation background. Details of any professional registrations or qualifications the practitioner has.
- Where the therapy is based and where children will go to receive therapy.
- What is involved in the therapy, what treatments do children receive. If a therapy says that all treatments are tailored to the individual child, or that it treats the child holistically then the provider should still say what method of complementary or alternative medicine they use or give examples of treatments provided.
Rating the therapy:
5 - Therapy is clearly explained in detail
Details given about therapy include: type of therapy and how it is administered e.g. details of procedure, length of treatment, benefits and side-effects, location of treatment and the children therapy is aimed at. Information given is easy to understand.
4 - Majority of details about therapy are explained, some information missing
One or two details about therapy are missing. Most of the details about therapy are explained, but some areas not included or explained.
3 - General explanation of therapy, most information is not given in detail
Information on therapy is given, e.g. type of therapy, population aimed at, and procedure. Details do not go into any length. Important parts of the treatment are not explained.
2 - Little explanation of therapy and/or information hard to understand
Little information is given beyond the name of the therapy and form therapy takes. Some attempts at explanation may be made but these are hard to understand or unstructured.
1 - No explanation of therapy is given
Name of therapy is given (and possibly whom it is for), but no other details are given.
Theory
The theory behind a therapy is the reason given for why a therapy works. Most research looks at whether the treatment works, rather than seeking to prove the theory behind what is working.
From reading information about a theory, you are unlikely to be in a position to decide if what a theory says is true. What can be considered though is whether you think the theory is believable, makes sense,and whether you feel comfortable with the theory.
Rating the theory:
3 - Theory is clear and believable
The theory behind the therapy is well presented and is easily understood. You feel comfortable with the theory that is presented.
2 - Most of the theory that is presented is clear and believable
Most parts of the theory presented make sense to you, some aspects could be clearer.
1 - Outcomes are defined in general terms, impossible to generate measurable outcomes.
Costs
Concerns have been raised by both parents and researchers about the high cost of some therapies and the extra costs such as travel that are sometimes involved. Survey research with parents of children with disabilities has found that the amount of money parents spend on complementary therapies varies, but for the majority of parents accessing complementary medicine for their children, between ten to forty pounds a month is spent on therapies.
Parents clearly want the best for their children and this may make them vulnerable to practitioners charging them unnecessary high costs. With parents feeling that they are not ‘good’ parents if they cannot afford the costs of some therapies, or that it is worth spending large amounts of money in the hope that one particular treatment will bring about improvements for their child.
Some complementary and alternative therapists may not carry out regular assessments. Regular assessments are important as a way to assess the progress your child is making, and to ensure that you do not continue to pay for something when no progress is being made.
Rating costs:
5 - Costs are clearly stated and explained.
The cost of the therapy over the treatment period, or per session is given (with guidance or detail on the amount of sessions children require). Regular structured assessments to monitor progress.
4 - Costs of the treatment are given, but are not fully explained.
Assessments take place, but not at regular intervals, or do not appear to be structured.
3 - Some aspects on the cost of treatment are given
Information about some aspects of the cost of treatment given. There are some costs that you are unsure about, or are not given. No evidence of assessments taking place.
2 - Costs are unclear
A cost figure is given but it is not explained, and you are unclear what it covers. No assessments mentioned.
1 - No information is given on cost or assessments.
Part C: Qualifications and experience of practitioners
What information does the therapy give about the practitioners?
What qualifications and experience of working with children do they have?
If details about qualifications and experience are not included, and you are seriously considering the therapy, you should contact the practitioner and ask them directly.
Seek case studies or testimonials for the chosen therapy.
Rating qualifications:
3 - Recognised qualification in the therapy
2 - Recognised healthcare qualification
1 - No recognised qualification.
Rating experience:
3 - Practitioner has worked with children and special populations
2 - Practitioner has worked with adults previously
1 - No past experience or information given.
Part D: Outcomes
What outcomes does the therapy aim to achieve for your child?
Outcomes are what a therapy says it can achieve for your child once they have received the therapy. For example, improved sleep, or physical mobility. Outcomes given by a therapy should be:
Specific: Related to one area of behaviour or physical function.
Measurable: There should be a way that you can either assess progress or think of a way that progress could be measured. For example, if a therapy said that it improved sleep patterns, you would be able to measure this by recording the number of hours sleep your child had each night, or the number of times they wake in the night.
Achievable: Outcomes should be realistic, and you should be able to see how it is possible for children to achieve the outcomes that are given.
Relevant: Outcomes should be related to the needs of your child.
Time Limited: What a therapy says it can achieve for your child should be given within a time frame. For example, ‘progress is usually observed after 3 months on the therapy, with the therapy lasting a year’.
Rating for outcomes:
4 - Outcomes are specific, measurable achievable and realistic
Outcomes are related to one area of a child’s development. Ways of measuring progresoutcome.s are given. Outcomes are relevant to the needs of your child and it is possible to see how your child could achieve the outcome.
3 - Some outcomes are too general
It may be possible to generate measurable outcomes. Examples of too general outcomes would be ‘functioning improved in all areas of daily life.’ It is possible to see how this could be made measurable, by looking at outcomes of home behaviour, school attainment and reports of quality of life. Outcomes given are relevant to the needs of your child.
2 - Most outcomes are not relevant or cannot be measured
Some outcomes are very hard to measure e.g. improved electrical activity in the brain.
1 - No outcomes are given to indicate achievement for the child
This information is not meant to replace the advice of any physician or qualified health professional. The information provided by Cerebra is for information purposes only and is not a substitute for medical advice or treatment for any medical condition. You should promptly seek professional medical assistance if you have concerns regarding any health issue.
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