Successfully secured Health Services & Delivery Research (HS &DR) funding in May2015

Research Design Service South East

PATIENT AND PUBLIC INVOLVEMENT GRANT: APPLICATION FORM

Please submit your completed form to:

Anya Bettison, Patient and Public Involvement Coordinator, NIHR Research Design Service South East

University of Brighton, East Sussex, BN1 9PH.

E: T: 01273 644064

Applicant details

1. Study Title
Optimum ‘hospice at home’ services for end of life care
2. NHS / HEI Applicant
Full name
Organisation(s)
Job Title
Address
Telephone & email address / Mrs Charlotte Brigden
Pilgrims Hospices in East Kent
Research Facilitator
56 London Road, Canterbury, Kent CT2 8JA
01227 812625

3. Principal Investigator
Full name
Job Title
Telephone & email address / Prof Patricia Wilson
Professor of Primary and Community Care
01227 816093
4. RDS Advisor supporting this study
Full name / Laura Holdsworth & Ferhana Hashem

Funding programmes

5 a. Name of Funding stream to which this study will be submitted (tick more than one if undecided)
Research for Patient Benefit (RfPB) / Policy Research Programme (PRP)
Programme Grants for Applied Research / NHS Physical Environment Research and Development
Programme Development Grants / Efficacy and Mechanism Evaluation (EME)
Research for Innovation, Speculation and Creativity / NIHR Doctoral Fellowship Programme
Invention for Innovation (i4i) / NIHR Postdoctoral Research Fellowship
Public Health Research (PHR) / National Charity
Health Services & Delivery Research (HS&DR) / Other Funder (please specify):
Health Technology Assessment (HTA) / Don't Know
5 b. Is your study application for submission to a NIHR commissioned call?
(If yes, please name theme of commissioned call)
YES NO
5 c. When are you planning to submit your study application?
The next HS&DR deadline is 5th February (outline proposal)
6. Have you previously applied for a PPI grant from the RDS SE for this study?
(Please note that only one successful grant application is permitted per study design).
YES NO
7. Outline of main study application
Aim (max 100 words)
To investigate different models of Hospice at Home services and evaluate which model works best in which circumstances and why.
This work follows on from RfPB funded research previously undertaken evaluating Pilgrims Hospices’ own hospice at home model. The new study would continue to involve the Universities of Kent and Surrey, but as a national study would engage others in the field. Links have been made with University of Cambridge and the National Association for Hospice at Home. Help the Hospices,who identified the need for further research into the best models for hospice at home care, also support the study.
Main study design (max 200 words)
The study will start with a national survey of hospice at home services to identify the range of services available. The services will then be categorized into ‘model’ types in order to produce a stratified sample from which to select cases for in depth study. Depending on how many categories there are, we will select a number of cases from each category. Cases will be selected to cover the range of categories and a variety of demographics e.g. inner city, suburban, rural localities, other services available, etc. The case study approach will allow us to describe an optimum model of care for eachcategory of service taking into account barriers and enablers within the context of service provision. This will allow us to answer the question ‘what works for whom in which circumstances?’
The evaluation of the different models of service will includea ‘whole systems’ approach to understanding how the service impacts on end of Lifeoutcomes in the geographical area.
Who are the ‘end users’ of the study?
The ‘end users’ who would benefit would be future hospice at home service patients and their families/carers. Hospices, other providers and commissioners would be provided with information on the optimum hospice at home service model that is relevant to the care for the patient group in their locality and organisational systems, as well as highlighting barriers and enablers to achieving this service provision.
8. Please outline below your PPI plans FOR THE DESIGN of this study.
(Before completing this section, please refer to the email from the RDS accompanying this form)
Who do you hope to involve (e.g. individuals/organisations)?
We would like those involved to include patients and their carers from Pilgrims Hospices in East Kent but also members of the public, perhaps a bereaved carer who has had experience of caring for someone at end of life, ideally with experience of using the hospice at home service. We will also explore engaging with other carer and patient user groups if required, e.g through charitable organisations or databases research interested individuals held at the University of Kent.
Why would you like to receive a PPI grant? Please select from the options below (tick all that apply)
To receive feedback about the:
Research idea
Acceptability of the research design
Acceptability of the proposed methods of recruitment
Acceptability of the proposed research tools, e.g. questionnaire, interview etc
Acceptability of the intervention (if applicable)
Appropriateness of the outcome measures
Other (please describe)
9. Please give details about your PPI activity (you may wish to include information on how you intend to engage patients/the public in your study, if you are planning on holding meeting(s) how many are intended to take place and how long the meeting(s) will take):
We wish to engage four people to support the team with the development of the grant application.Due to the nature of terminal illness is accepted that members that are patients and carers may not be able to be continually involved or involved at every stage. We ideally would like at least one interested member of the public (perhaps a bereaved carer) to be co-applicant on the application. One bereaved carer has already been identified and is very keen to become involved in a co-applicant role for this new project. This person has had experience of hospice services as a carer and was involved in PPI work for the original hospice at home RfPB study. As an integral member of the research team, it would ensure that the project is iteratively informed by the end-beneficiary perspective (patient and carer), and would underline a collaborative approach to the study. Our goal will therefore be to identify 1-2 people from the group who would be suited to this co-applicant role.We are in the process of identifying people who would like to become involved through a number of ways. Pilgrims Hospices is developing a poster/flier to seek public involvement with research generally which will be advertised in a range of hospice settings, in newsletters and on the website.Service users can also be approached through hospice groups, day care services and outreach services and introduced to the study to see if they would be interested in becoming involved.
We anticipate that public involvement will take place at different points of the application development through two meetings and other forms of communication such as email and telephone. We anticipate that the meetings would last 1-2 hours in length and refreshments and lunch will be provided.The meeting venue will be held at Pilgrims hospice free of charge, at the site most convenient for those involved, either at Canterbury, Ashford or Thanet.Due to the nature of our patient group and difficulties of attending meetings that might be faced by patients and their carers we will also involve users by other means such as feedback through email and telephone calls. The hospice also has skype video conferencing facilities which could be utilised if appropriate.
We would like their support for the development of the application, such as the acceptability of data collection methods which can be particularly challenging in this group of patients and carers. This may require group members to read through documents, such as our research plan, data collection tools, lay summary. Any written materials that the group will be asked to comment on will be printed and sent to the individuals concerned prior to the organised meeting, or feedback by email or telephone. We also plan to approach service users as needed through existing hospice groups, day care services and outreach services which has proved successful on previous occasions.
Given that our study will involve service providers as participants in the survey and potentially in the case studies we will also seek involvement from relevant health professionals within the hospice to comment on our ideas. This will be carried out separately alongside the patient/carer/public user group. We are not asking for any funds from the RDS PPI grant for this element of the proposal development.
We will document our PPI activity and experiences during the development of the study to evaluate how successful/useful our approach has been. We would provide the RDS grant team with this information if we are successful in receiving the RDS PPI grant.
Please indicate how many people you hope will attend: We plan to try and engage fourpeople + two facilitators. However we accept that we many have less than that who are able to attend. We would hold a meeting with a minimum of two people.
(INVOLVE recommend involving two people at a minimum -
10. Do you plan on-going PPI in the proposed study? How?
Yes. We would like to continue to engage the same group of users if the project is funded where possible, but will be open to engaging new people as required and where there is interest. This continuous engagement will be strengthened by including at least one PPI person as a co-applicant in the application(one has been identified) who could be involved in study team meetings and steering group meetings as well as PPI specific meetings. This could be a bereaved carer or interested member of the public who could commit their involvement for the life of the project.As they would be an integral member of the research team this would ensure that the project is iteratively informed by the end-beneficiary perspective. We would also envisage involving our wider group in the development of study documents (e.g. any information sheets, data collection materials), study procedures, recruitment strategies, our reporting and dissemination plans.
In the previous hospice at home study, we engaged a group of patients, carers and bereaved carers in bi-annual meetings to feedback progress of the research. During one of the early meetings, we discussed the difficulty we were having recruiting carers to participate in a postal questionnaire. The group suggested that we include a shorter cover letter in addition to the information sheet and one of the carers helped to draft the letter. This type of specific feedback was very helpful. However, one of the challenges we faced was that we had a high turnover of members which is expected among this service user group. This has meant that as we approached the dissemination stage we had only one bereaved carer that we could consult for advice who has been involved at previous stages. Also, as the members were users of the hospice service they may have felt pressure to give positive feedback regarding hospice activities as the group was largely complimentary of the hospice. We have learned two key lessons from this experience which we propose in our PPI strategy for this new study. First, if we want people to provide critical commentary on research generally we need to allocate more time to supporting and possibly training those involved. Second, continuity of patient or public involvement would be beneficial, particularly in dissemination when people can comment on what is interesting or important to report to the public and how this is best done.
11. For what estimated costs are you seeking a PPI grant?
Please offer estimates of distances users may have to travel or average a rate per mile (most PPI travel usually follows the rate of the organisation hosting the meetings for fairness and parity). Your budget should be realistic and economical.
For guidance on estimating costs, please follow the hyperlinks given on the table below. The information on costs is for guidance purposes only. You may also wish to consult guidance from INVOLVE and use their online cost calculator:

Any unspent monies from the Patient and Public Involvement Grant will be repayable to the Research Design Service South East.
Explanation of costs
Travel expenses
FOR GUIDANCE PLEASE SEE HERE
PLEASE SEE HERE / 8 x 30 mile round trips (for two meetings with 4 attendees) @ 0.45p per mile= £108 (host organisation rate)
1 x 30mile travel for facilitator e.g. to first meet those involved . e.g. at daycare/outreach centre @ 0.45p per mile = £13.50 (host organisation rate).
Support / personal assistant / childcare costs
FOR GUIDANCE PLEASE SEE HERE / Printing paperwork for those involved 50pages X 4 people @5p a page, associated postage and stationary = £18.
Venue costs
FOR GUIDANCE PLEASE SEE HERE / N/A
Other subsistence costs
FOR GUIDANCE PLEASE SEE HERE / Lunch and refreshments for two meetings = £40
4 x £30 ‘Thank you’ payments= £120
Total Grant Requested
(maximum £300) / £299.50
12. If applicable, please indicate other sources of contributory funding already obtained for the active involvement of members of the public in the development of the grant application. If more than one source of contributory funding has already been obtained, please complete the table below as appropriate:
Funding source
Amount

13. The PPI team at the RDS may be able to help facilitate a PPI group on your behalf (depending upon time available). Please speak to your RA for further information. If this is something you are interested in, please tick the box below.

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