1. Introduction

Validation of a self-efficacy questionnaire for professionals involved in the treatment of people with Lymphoedema
Professor Christine Moffatt CBE Chair: International Lymphoedema Framework
We would like to invite you to take part in this study. Before you decide we would like you to understand why it is being done and what it would involve for you.
What is the purpose of the study?

Over the last decade the International Lymphoedema Framework has undertaken research that has shown the challenges that clinicians, patients and families face in providing care for people suffering with Lymphoedema.

We recognise that Lymphoedema requires daily self-management, and this is challenging for parents
and guardians of children and young people. We are therefore aiming to develop resources to help
with this.

This study therefore aims to explore the challenges parents and guardians face in providing
care for children and young poeple with Lymphoedema. The aspect we are exploring is "self-efficacy".
Self-efficacy is all about the beliefs we have about how if we persevere, we will be able to achieve the
task in hand, in this case, providing care for people with Lymphoedema
Why have I been invited?

You are being invited because you are a parent or guardian of a child or young person with
Lymphoedema.
Do I have to take part?

It is up to you if you decide whether you take part. When you have read this information and decided to take part, please complete the two on-line questionnaires which aim to assess self-efficacy.

You will be offered the option of leaving your contact information so that we can be in touch with you in the future or you may complete the questionnaires anonymously.

The study is only being undertaken at present in English, although the questionnaires may be translated into different languages in the future.

We will distribute the questionnaire through social media (ILF) and through our partners throughout the International Lymphoedema Framework.

We plan to distribute it widely over the next six months.

When the study is complete the data from the questionnaires will be analysed by members of the International Lymphoedema Framework Board with the assistance of an independent medical statistician.

We will share the findings from this research at our international conferences and through publications that will also be included in our website.   

The questionnaires will then be used to develop a self-management programme which will include translation and further validation in different languages.

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