Rainbows is a research active hospice and is involved in research that seeks to improve care for babies, children and young people and their families.

We believe that research is important as it provides the necessary evidence required to improve or change practice with the aim of improving the care that we give to babies, children, young people and their families. We also believe that everyone has the right to be involved in research if they would wish to be.

If you’re interested in learning any more about research at Rainbows and how you might get involved, please contact our Research Manager, Wendy Gamble.

 

  • How can I become involved in research?

    There are a number of ways in which you could be involved:

    • You may be given some information about a research study in the form of a letter of invitation or a flyer, this may be in paper format or electronically, offering information about a current research study and telling you about how you may become involved
    • You may receive information about research from a member of staff whilst you are visiting or staying at the hospice
    • You may have seen details of research projects on display at Rainbows or on the website about current research projects which may be looking for people interested in taking part
      You could ask a member of staff to contact the research team at Rainbows to ask whether there is any current research happening that you could get involved with
    • You can ask to be put in contact with the research team and you can express an interest in being kept informed of any future studies that you may be eligible for and give your permission for us to contact you to keep you informed of these.

    We would also be interested to hear your views about research, even if there isn’t a current study that you can be directly involved in.

  • What will happen if I’m interested in participating in a research study?

    You will be given a participant information sheet telling you about the study and what is involved, which you can read in your own time and the researcher will be happy to answer any questions you may have. If, after discussing the study, you decide to participate you will then be asked to sign a consent form. Even after you have signed the consent form you can withdraw from the study at any time.

  • Is it compulsory for I or a member of my family become involved in research?

    No. Participating in research is entirely optional for anyone and, if you are approached, you absolutely have the right to refuse and say no. Being involved in a research study or preferring not to participate will not in any way affect the care you receive at Rainbows or as a relative or carer or compromise any other right.

  • What does research involve?

    Precisely what is involved differs from project to project and depends on the topic of the research. Some common research methods that are used are:

    • Questionnaires
    • Group Discussions, either face to face or remotely
    • One to one interviews with a researcher, either face to face or remotely
  • Will my personal details be shared with other people?

    No. All information given to the researcher will be held securely and will remain confidential. If anyone wishes to share any of your personal information as part of research they will require your explicit consent to do this.

  • Where can I find out more about research?

Current Research at Rainbows:

Understanding Child and Parent Experience of receiving Music Therapy in a Children’s Hospice setting: a qualitative study of child and parent experiences and perspectives.

Lead Researcher – Vicky Kammin, University of Leeds.

Many children’s hospices in the UK employ a music therapist as it is believed to support the reduction of anxiety and pain, increase emotional expression and improve family interactions, as well as many other benefits. However, there is little evidence about the experiences of music therapy in children’s hospices from child and family perspectives

This study aims to explore family’s views and opinions by speaking to children and parents about their experiences of music therapy received in children’s hospices to help understand what is important for future service design and development.

At Rainbows our music therapist, research nurse, clinical team or other staff who are known to families will discuss the study with all potentially eligible participants who they see or speak to either at the hospice or at a home visit or via a telephone call.

If the parent/guardian/child/young person/young adult is interested in taking part in the study they will be given a consent-to contact form to complete and return directly by hand back to the hospice team. The research team will return this securely to the research team in York who will then contact you and send out further information about the research.

We are looking to find children and young people ages 8 to 17 who have received music therapy from our music therapist and would be prepared to share their experiences of music therapy with a researcher. We are also looking for parents or legal guardians whose child /children (of any age) have received music therapy at Rainbows and would be prepared to take part in an interview either face to face or online and share their experiences.

If you’d like to find out more please contact Naomi Seaton, Research Nurse at Rainbows Hospice.

Personal music use in emotional wellbeing after a bereavement

Lead researcher – Elizabeth Fair, University of Leeds.

This research study aims to unpick the relationship between individual’s music use and emotional wellbeing after a bereavement, particularly exploring: – Motivations and implications of musical activities on emotional wellbeing.

This study is looking to interview individuals who have been bereaved between 6 months and 2 years ago.

As well as interviews participants will also be invited to write reflections on how music might have impacted them emotionally.

Rainbows is looking to identify potential study participants and give them written information about the study in the form of a study poster which will invite them to contact the researcher directly should they be interested in learning more about the study or wish to participate.

If you’d like to find out more please contact Naomi Seaton, Research Nurse at Rainbows Hospice.

Priority Care for Minority Ethnic Groups

Lead Researcher – Professor Catherine Walshe, Lancaster University.

This study is designed to better understand what affects how, why, and when people from minoritised ethnic groups access all forms of palliative and end-of-life care. This will be in partnership with care providers, patients, their families, and friends. This information will be used to suggest changes that could be made to help improve the ‘quality of access and care’ provided.

The purpose of this project is to provide helpful practical suggestions for those who plan and provide care to help them improve the care given to those from minoritised ethnic groups. The study researchers particularly want to be able to make recommendations to local and national policymakers who decide what services are provided, and how they are best delivered to meet the needs of all patients.

If you’d like to find out more please contact Naomi Seaton, Research Nurse at Rainbows Hospice.