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

 

Dystonia Impact Qualitative Interview Study

Lead Researcher – Dr Hortensia Gimeno, Queen Mary University of London

Childhood-onset hyperkinetic movement disorders are common, heterogeneous, and critically under-researched. Hyperkinetic movement disorders, including dystonia, are a group of conditions characterised by excessive and involuntary muscle contractions, leading to abnormal postures and repetitive movements. Everyday activities such as cooking, writing, or playing can worsen involuntary movements, significantly impacting individuals’ lives.

The purpose of this study is to identify what matters most to children and young people, and their families, with childhood-onset movement disorders.

CYP and parents will be invited to take part in an interview (either face to face or on-line) lasting approximately 1 hour (for younger children, interviews are expected to be no more than 30 minutes but up to 1 hour, including breaks). A payment of £30 will be offered on completion of the interview as a thank you for their time.

 

Developing Effective Service Models for Adult Palliative and End of Life Care for People with a Learning Disability – DAPPLE Study

Lead Researcher – Professor Irene Tuffrey-Wijne, Kingston University London

The DAPPLE study aims to improve quality and accessibility of Palliative and End Of Life Care (PEOLC) for people with a learning disability by producing robust guidance for health and social care services, with recommendations and accessible resources.

This is work package 3B of a programme of research to develop effective service models for adult palliative and end of life care for people with a learning disability.

This will involve the researcher “hanging out” with the person with a learning disability and spending time with them in a variety of contexts such as home, outpatient appointments, in hospital. There will then be some unstructured ethnographic conversations with them their family / friends / direct care givers / managers / professionals etc to explore perception of need, experience of service provision, challenges, what works well and what doesn’t.

 

Research Evaluating Staff Training Online for Resilience: A cluster randomised controlled trial of online Acceptance and Commitment Training (ACT) to improve mental wellbeing in staff caring for terminally ill people and their caregivers – RESTORE

Lead Researcher – Dr David Gillanders and Dr Anne Finucane, University of Edinburgh

This is a study exploring online staff wellbeing intervention versus standard wellbeing support offered for palliative care staff.

RESTORE is the name of the intervention arm which is psychological skills training course using Acceptance and Commitment Therapy (ACT) as an online training tool versus a control arm which is standard wellbeing support offered to staff by individual palliative care organisations.

The study is parallel-arm cluster randomised controlled trial comparing RESTORE to usual wellbeing support resources for palliative care staff. Hospice sites (clusters) will be randomly allocated to the intervention (RESTORE training) or the control condition (i.e., usual hospice wellbeing support).

The RESTORE intervention consists of online staff wellbeing training (this includes 8 weeks of online material and a booster session in week 12). Therapist-led online sessions will occur in week 1, week 4 (mid-way), week 8 (last weekly sessions) and week 12 (follow-up or booster session). On completion of data collection, participants in sites allocated to the control condition, will be offered the RESTORE intervention at their site.

Ethnic Minority Backgrounds: Reflections on Access, Care and Experiences (EMBRACE)- a qualitative study of parent – carer perspectives

Lead Researcher – Professor Lorna Fraser, Kings College London

A study to explore the health, caregiving experiences, and preferences for support of ethnic minority parent-carers of children with a life-limiting condition.

This study’s objectives are to qualitatively explore ethnic minority parent-carers:
• Experiences of providing care, and accessing support and services for their child
• Perspectives of their own health and wellbeing
• Preferences for care and support for their own health

A qualitative research design will be used to explore experiences, access to services, care and support needs and preferences for support, including who should provide this support and where. Semi-structured interviews will be conducted in accordance with the topic guide which has been developed using existing literature and in collaboration with a PPI group. This study will recruit parents (including step-parents, adoptive-parents, long-term foster parents/guardians) of children with a life-limiting condition who meet the eligibility criteria.

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