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UNIVERSITY OF CENTRAL LANCASHIREEthics Committee Application Form
PLEASE NOTE THAT ONLY ELECTRONIC SUBMISSION IS ACCEPTED
This application form is to be used to seek approval from one of the three University Ethics Committees (BAHSS; PSYSOC & STEMH). Where this document refers to ‘Ethics Committee’ this denotes BAHSS; PSYSOC & STEMH (see Appendix 1 for list of Schools associated with each ethics committee). These Ethics Committees deal with all staff and postgraduate research student project. Taught (undergraduate and MSc dissertation projects) will normally be dealt with via School process / committee.
If you are unsure whether your activity requires ethical approval please complete an UCLan Ethics Checklist. If the proposed activity involves animals, you should not use this form. Please contact the Research Development and Support Team within Research & Innovation Office – [email protected] – for further details.
Please read the Guidance Notes before completing the form. Please provide all information requested and justify where appropriate. Use as much space as you need – the sections expand as you type. Click on box or circle to select relevant option (e.g. type or Yes/No) and click on ‘grey oblong shape’ to start typing for the free text entry questions. Each question on this form has instructions on how to answer that particular question. In addition links to relevant documents (e.g. templates, examples, etc.) and further guidelines are available in the Guidance Notes which can also be access from the question by clicking on appropriate question number.
Your application needs to be filled in electronically and emailed to [email protected]. Please insert in the subject line of your email the acronym of the committee that needs to deal with your application. Committee acronyms are BAHSS, PSYSOC or STEMH – see Appendix 1, at the back of this form, for list of Schools associated with each ethics committee.
PLEASE NOTE – ethical approval can be granted in phases. If you have a project that is likely to evolve, or has subsequent phases determined by initial results – you can apply for Phase One approval, and then come back for Phases Two, Three or even more as your research progresses.
If this application relates to an activity which has previously been approved by one of the UCLan Ethics Committees, please supply the corresponding reference number(s) from your decision letter(s).
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Section 1
DETAILS OF PROJECT
All applicants must complete Section 1
1.1 Project Type:
1.2 Principal Investigator:
Name School EmailRachel Tarling Psychology [email protected]
1.3 Other Researchers / Student:
Name School EmailLucy Hives Psychology [email protected] Choose an item. Choose an item.
1.4 Project Title:
A preliminary investigation into the differences between health-related quality of life in people with dementia who live at home and who live in care homes.
1.5 Anticipated Start Date:
07/02/2014
1.6 Anticipated End Date:
01/02/2017
1.7 Is this project in receipt of any external funding (including donations of samples, equipment etc.)?
If Yes, please provide details of sources of the funding and what part it plays in the current proposal.
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Staff Research
Commercial Project
Master by Research
MPhil Research
PhD Research
Professional Doctorate
Taught MSc/MA ResearchUndergrad Research
Yes No
1.8 Project Description (in lay’s terms) including the aim(s) and justification of the project (max 300 words)Give a brief summary of the background, purpose and the possible benefits of the investigation. This should include a statement on the academic rationale and justification for conducting the project.
Over the past two decades there has been a major focus on developing tools to measure the quality of life of people with dementia. These tools have been developed to gain greater insight into the validity and reliability of interventions aimed at increasing quality of life in such people with different severity levels of dementia. However, according to the World Alzheimer’s Report (2013) there is still much room for improvement in terms of providing people with dementia (and their carers) with information and support, ensuring that care is person-centred and individualised to each case, and making sure that the person with dementia is in control of choices and future wishes. The aim of the proposed study is to compare the health-related quality of life in two groups of individuals: people with dementia living in their home environment and people with dementia living in care home environments. In doing this, it will become clear which aspects are important to people with dementia when considering health-related quality of life, which aspects they wish to be improved and to what extent they are happy with their overall quality of life. The proposed study adds to existing literature because it will be the first step to providing detailed information about expectations for good health-related quality of life from the perspective of the person with dementia. It will, in effect lead on to developing a new intervention aimed at creating extensive diaries or portfolios of interests, hobbies, activities, likes and dislikes, life history, future wishes, care preferences and other health-related quality of life aspects for each individual. The most important aspects of the portfolio intervention are that it is implemented right at the very beginning of dementia diagnosis, it is accessible to the person with dementia, it can be added to as regularly as necessary, that it includes extensive information about the person with dementia and that this can be carried right through the care pathway, ensuring that if progression leads to care home residency, that all important information regarding what the person with dementia values as important to health-related quality of life, are understood and can be respected.
References:Alzheimer’s Disease International. (2013). Chapter 5: Quality of care and how it can be improved. World Alzheimer’s Report, 42-70.
1.9 Methodology Please be specific
Provide an outline of the proposed method, include details of sample numbers, source of samples, type of data collected, equipment required and any modifications thereof, etc.The proposed study will recruit 200 people with dementia living in their own homes and within private care homes and also the people who care for these people. To recruit people living in care homes and their carers, the investigator will contact private dementia care homes in Lancashire, including her own place of work. To recruit people with dementia living in their own homes and their carers, the investigator will contact Lancashire County Council, The Alzheimer’s Society UK, and dementia support groups, in seek of support and guidance. Participants with dementia will be asked to complete the DEMQOL (Smith et al., 2007) health-related quality of life questionnaire, which will be provided in paper form. The carers of each participant with dementia will be asked to complete the DEMQOL-proxy (Smith et al., 2007) questionnaire which measures the carers’ perception of the health-related quality of life of each person with dementia. For those people with severe dementia who do not have the capacity to fill out their questionnaire, only the carer will be asked to fill out the DEMQOL-proxy questionnaire.
References:Smith, S.C., Lamping, D.L., Banerjee, S., Harwood, R.H., Foley, B., Smith, P., Cook, J.C., Murray, J.,
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Prince, M., Levin, E., Mann, A., & Knapp, M. (2007). Development of a new measure of health-related quality of life for people with dementia: DEMQOL. Psychological Medicine, 37, 737-746.
1.10 Has the quality of the activity been assessed? (select all that apply)
If other please give details
1.11 Please provide details as to the storage and protection for your data for the next 5 years – as per UCLan requirementsCompleted questionnaires and consent forms will be kept in a locked filing cabinet and also a password protected computer, which only the investigators will have access to. All data files will be kept on a password-protected computer which only the investigators will have access to.
1.12 How is it intended the results of the study will be reported and disseminated?(select all that apply)
If other, please give details
1.13 Will the activity involve any external organisation for which separate and specific ethics clearance is required (e.g. NHS; school; any criminal justice agencies including the Police, Crown Prosecution Service, Prison Service, Probation Service or successor organisation)?
If Yes, please provided details of the external organisation / ethics committee and attached letter of approvalNB – external ethical approval must be obtained before submitting to UCLan ethics.
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Independent external review
Internal review (e.g. involving colleagues, academic supervisor, School Board
Through Research Degrees Sub-Committee (BAHSS, STEM or SWESH)
None
Other
Peer reviewed journal
Internal report
Conference presentation
Other publication
Written feedback to research participants
Presentation to participants or releveant community groups
Dissertation/Thesis
Other
Yes No
1.14 The nature of this project is most appropriately described as research involving:-(more than one may apply)
If ‘Other’ please provide details
-
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Behavioural observation
Self-report questionnaire(s)
Interview(s)
Qualitative methodologies (e.g. focus groups)
Psychological experiments
Epidemiological studies
Data linkage studies
Psychiatric or clinical psychology studies
Human physiological investigation(s)
Biomechanical devices(s)
Human tissue
Human genetic analysis
A clinical trial of drug(s) or device(s)
Lab-based experiment
Archaeological excavation/fieldwork
Re-analysis of archaeological finds/ancient artefacts
Human remains analysis
Other (please specific in the box below)
Please read all the following questions carefully and if you respond ‘Yes’ then you should provide all relevant details and documentation (including risk assessments), and justify where appropriate.
Section 2HUMAN PARTICIPANTS, DATA OR MATERIAL
2.1 Are you using human participants (including use of their data), tissues or remains?(please select the appropriate box)
Click here for Q2.20
Click here for Q2.24
Click here for Section 3
2.2 Will the participants be from any of the following groups:(tick as many as applicable)
2.2a Justify their inclusionEthical approval covers all participants but particular attention must be given to vulnerable participants. Therefore you need to fully justify their inclusion and give details of extra steps taken to assure their protection. Where the ‘Other vulnerable groups’ box has been selected, please also describe/list.The proposed study asks people with dementia to complete a DEMQOL questionnaire to assess their health-related quality of life. Extra steps taken to ensure their protection are: Gaining consent from care home managers before asking people with dementia to take part
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Participants [proceed to question 2.2]
Data [proceed to question 2.20]
Tissues / Fluids / DNA Samples [proceed to question 2.20]
Remains [proceed to question 2.24]
No [proceed to Section 3]
Students or staff of this University
Children/legal minors (anyone under the age of 18 years)
Patients or clients of professionals
Those with learning disability
Those who are unconscious, severely ill, or have a terminal illness
Those in emergency situations
Those with mental illness (particularly if detained under Mental Health Legislation)
People with dementia
Prisoners
Young Offenders
Adults who are unable to consent for themselves
Any other person whose capacity to consent may be compromised
A member of an organisation where another individual may also need to give consent
Those who could be considered to have a particularly dependent relationship with the investigator, e.g. those in care homes, medical students
Other vulnerable groups (please list)
in the study, gaining the support of the council, Alzheimer’s Society and dementia support groups, providing clear and concise information regarding the study and its aims to the people with dementia and their carers, ensuring that they are able to fully understand what will be asked of them if they agree to take part in the study, only asking those with the capacity to be able to consent and fill out the questionnaire to take part (i.e. those with severe dementia will not take part in terms of providing data and therefore will not be asked to provide consent, only their carers will be asked to consent and provide their perceptions of their patient’s health-related quality of life).
2.2b Is a DBS – Disclosure and Barring Service (formerly CRB – Criminal Records Bureau) check required?Certain activities and/or groups of individuals require DBS (formerly CRB) clearance.
If Yes, please advise status of DBS clearance (e.g. gained; in process; etc)
2.3 Please indicate exactly how participants in the study will be (i) identified, (ii) approached and (iii) recruited?N.B if a recruitment advertisement is to be used, please attachState how you will identify, approach and recruit participants including how you will ensure no coercion will be used in your recruitment.Participants will be recruited in a number of different ways for the proposed study. Firstly, a recruitment advertisement in the form of a poster will be put up around the university and this will include the email address of the investigator, should people wish to gain more information or take part in the study as carers of a person with dementia. Secondly, a number of care homes within Lancashire will be approached via email initially, to introduce the investigator, the study and enquire about whether they would be interested in taking part in the research. The Alzheimer’s Society, Lancashire County Council and dementia support groups within Lancashire will also be contacted via email. It is hoped that there will be 100 people with dementia living at home and also their 100 carers. Also, 100 people with dementia living in care homes will be recruited as well as their carers. It must be noted that carers in care homes may be able to provide DEMQOL-proxy information for more than one dementia patient, and so the number of carers need not be as high as the number of participants with dementia. All in all there will be between 300 and 400 people recruited for the proposed study (depending on how many carers are asked to provide proxy report).Once a care home has given permission the investigator will arrange a date to visit the care home and potential participants will be handed information sheets and consent forms which they will be asked to sign if they wish to take part in the research. The questionnaire will be completed by the participants in a quiet room with just the investigator, the carer and person with dementia will complete their questionnaires separately at different times so that the investigator is able to be present when they fill in the questionnaires to help them if they have any problems whilst completing them.Once the Alzheimer’s society, Lancashire county council and dementia support groups which have been contacted, reply, they will be asked to advertise the research and will put up recruitment posters which will include the researcher’s email address and the researcher will attend support groups to tell people about the study. Also, companies which provide home care and support to people living with dementia will be contacted to see if they can help in the recruitment process.
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Yes No
2.4 How exactly will consent be given?
N.B. if a written consent form is being used, please attachPlease specify what information you will provide in order that consent be informed, and whether consent will be given verbally or in writing. If consent is not to be obtained, please explain why not.There are two different consent forms which have been attached to the ethics form. One is a consent form for people with dementia which makes sure that they have understood the information they have been given regarding the study and asks them to sign if they agree to take part in the study. The other consent form is for people who are carers for people with dementia, this includes the same questions and requirement for consenting to take part. All participants will be handed an information sheet, before the consent form, which gives details about the study. The investigator will make sure that people understand both sheets by talking them through it and answering any questions that people have.2.5 What information will be provided at recruitment and briefing to ensure that consent is informed?N.B. if an information sheet is being used, please attachGive details of any particular steps to provide information and justify where an information sheet is not being used.The information sheet explains why the study is being conducted, the aim of the study, that participants will be asked to fill in either a DEMQOL questionnaire (for people with dementia) or a DEMQOL-proxy questionnaire (for carers), information about the questionnaires including how many items there are and what the items measure, and also information regarding anonymity and confidentiality.2.6 How long will the participants have to decide whether to take part in the research?Indicate whether this is days or weeks and if less than 24 hours please justify.Due to their condition, people with dementia will be asked to take part in the research and will be required to decide then and there. People who are carers for people with dementia will have a month to decide whether they would like to take part in the research with the person with dementia that they care for.
2.7 What arrangements have been made for participants who might not adequately understand verbal explanations or written information given in English, or who have special communication needs?Gives details of what arrangements have been made (e.g. translation, use of interpreters, etc).For people who are struggling to read the questionnaire or understand it, the researcher will help them by reading it out to them and ensuring they understand each question and how to answer them. For those who need the questionnaire and information, consent and debrief sheets translating into an alternative language, this will be provided as and when required.
2.8 Payment or incentives: Do you propose to pay or reward participants?
If Yes, please provided details
2.9 Does the activity involve conducting a survey, interviews, questionnaire, observational study, experiment, focus group or other research protocol?
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Yes No
Yes No
If Yes, please provide details and attach copy of what you will be usingGive details of the specific procedures/activities being used and indicate where documentation (i.e. questionnaire or agendas) will be developed as part of the project. Also include what is the experience of those administering the proceduresFor participants who are people with dementia the DEMQOL questionnaire will be administered and for participants who are carers for the person with dementia the DEMQOL-proxy will be administered. Each questionnaire can be sent in the post to the participants’ address, via email, through dementia support groups, through care/ nursing homes, whichever is preferred by each participant.
2.10 Will deception of the participant be necessary during the activity?
If Yes, please provide justificationGives details of the deception and explain why the deception is necessary.
2.11 Does the activity (e.g. Art) aim to shock or offend?
If yes, please explainGive details, justify and what measures are in place to mitigate.
2.12 Does your activity involve the potential imbalance of power/authority/status, particularly those which might compromise a participant giving informed consent?
If Yes, please detail including how this will mitigatedDescribe the relationship and the steps to be taken by the investigator to ensure that the participant’s participation is purely voluntary and not influenced by the relationship in any way.
2.13 Does the procedure involve any possible distress, discomfort or harm (or offense) to participants or researchers (including physical, social, emotional, psychological)?
If Yes, please explainDescribe the potential for distress, discomfort, harm or offense for research participants as a result of their participation in your study and what measures are in place to protect the participants or researcher(s). Please consider all possible causes of distress carefully, including likely reaction to the subject matter, debriefing or participants.There is potential for participants to get distressed and upset during the questionnaire stage of their participation because they will be asked to reflect on their quality of life and aspects of their quality of life which could be improved. Participants will be fully supported by the researcher when they are answering the questionnaire and then the debrief form will offer further contacts for if they heave been affected by the questionnaire.
2.14 Does the activity involve any information pertaining to illegal activities or materials or the disclosure thereof?
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Yes No
Yes No
Yes No
Yes No
If Yes, please detailDescribe involvement and explain what risk management procedures will be put in place.
2.15 What mechanism is there for participants to withdraw from the investigation and how is this communicated to the participants?Describe exactly how, and when, participants may withdraw if they change their minds about taking part including how participants know they have the right to withdraw.The information sheet which is given to potential participants before deciding whether to take part explains that participants can withdraw their information from the study at any time whilst they are completing the questionnaire. The questionnaire and consent form will be shredded if participants decide they wish to withdraw from the study. However, once their questionnaire is handed back to the researcher, due to the anonymous nature of the questionnaires, it will be impossible to identify their own questionnaire to be able to remove it from the study.
2.16 What is the potential for benefit for participants?
Briefly describe the main benefits and contribution of the study. Include any immediate benefits to participants as well as the overall contribution to knowledge or practice.The study benefits the participants themselves by drawing their attention to different aspects of quality of life and also requires them to think about ways in which they think their quality of life can be improved. The study also includes carers thinking about how they can help improve quality of life in the person with dementia.The overall benefit to knowledge or practice that there will become more awareness of the individual differences in what people perceive as good quality of life in people with dementia and also how people think that it can be improved at home as well in care homes. The study will be the first step to designing an intervention to continuously ensuring good quality of life for the person with dementia at home and also in care homes, including the transition from their home to a care home.
2.17 What arrangements are in place to ensure participants receive any information that becomes available during the course of the activity that may be relevant to their continued participation?Describe how participants will be made aware of relevant information that was not available when they started.There is no information which is not known by the participants at the beginning of the study.
2.18 Debriefing, Support and/or Feedback to participantsDescribe any debriefing, support or feedback that participants will received following the study and when.Once each participant has completed their questionnaire, they will be given a debrief sheet which will reiterate the aims of the study how the information will be used. It will remind them that their information will remain confidential and anonymous and the email addresses and contact telephone numbers of support groups will be given, in the case that any participants have been affected by the study and wish to seek further help or advice. The email address of the researcher will also be given, in case the participants have any further questions about the study at a later date.
2.19 Adverse / Unexpected OutcomesPlease describe what measures you have in place in the event of any unexpected outcomes or
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Yes No
adverse effects to participants arising from their involvement in the projectParticipants who are affected by the study will be put in contact with a dementia support group in their area.
2.20 Will the activity involve access to confidential information about people without their permission?
If yes, please explain and justifyState what information will be sought, from which organisations and the requirement for this information.
2.21 Does the activity involve medical research, human tissue, DNA samples or body fluids?
If yes, please detailClearly state the source of the material and anonymisation protocols
2.22 Confidentiality/Anonymity - Will the activity involve:Yes No
a. complete anonymity of participants is not possible (i.e. researchers may or will know the identity of participants and be able to return responses)?
b. anonymised samples or data (i.e. an irreversible process whereby identifiers are removed from samples/data and replaced by a code, with no record retained of how the code relates to the identifiers. It is then impossible to identify the individual to whom the sample or information relates)?
c. de-identified samples or data (i.e. a reversible process in which the identifiers are removed and replaced by a code. Those handling the data subsequently do so using the code. If necessary, it is possible to link the code to the original identifiers and identify the individual to whom the sample or information relates)?
d. participants having the option of being identified in any publication arising from the research?
e. participants being referred to by pseudonym in any publication arising from the research?
f. the use of personal data?If yes to any proceed to question belowIf no to all, please skip to question 2.24
2.23 Which of the following methods of assuring confidentiality of data will be implemented? (Please select all relevant options)N.B. Attach DP Checklist (click here to see further DP advice)
If other, please describe method.
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Yes No
Yes No
data and codes and all identifying information to be kept in separate locked filling cabinetsaccess to computer files to be available by password only
other
2.24 Does the activity involve excavation and study of human remains?
If yes, please give detailsDiscuss the provisions for examination of the remains and the management of any community/public concerns, legal requirement etc.
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Yes No
Section 3BIOLOGICAL ORGANISMS/ENVIRONMENT
3.1 Does the activity involve micro-organisms, genetic modification or collection of rare plants?
If yes please provide further details below State the type and source of the samples to be used in the project and include compliance with relevant legislation.If no please continue section 4
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Yes No
Section 4HAZARDOUS SUBSTANCES
4.1 Does the activity involve any hazardous substances?
If yes please continueIf no please continue to section 5
4.2 Does the activity involve igniting, exploding, heating or freezing substances?
4.3 Does the activity involve substances injurious to human or animal health or to the environment?
4.4 Are you using hazardous chemicals?
If Yes to any please attach all relevant COSHH (single substance OR multi/complex substance) and/or risk assessment formsN.B. Please address issues of quantity involved, disposal and potential interactions as well as a thorough evaluation of minimisation of risk
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Yes No
Yes No
Yes No
Yes No
Section 5OTHER HAZARDS
5.1 Does the activity relate to military equipment, weapons or the defence industry?
If yes please provide details and attach relevant permissions and risk assessments. Describe the hazard, clearly explaining the risks associated and specify how you will minimise theseIf no please continue
5.2 Does the activity relate to the excavation of modern battlefields, military installations etc?
If yes please provide details and attach relevant permissions and risk assessments. Discuss the provisions for examination and the management of any community/public concerns, legal requirement, associated risks, etc.If no please continue
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Yes No
Yes No
Section 6FIELDWORK/TRAVEL
6.1 Does the activity involve field work, lone working or travel to unfamiliar places?
If yes, answer the following questionsIf no, go to Section 7
6.2 Where will the activity be undertaken?
N.B. If your work involves field work or travel to unfamiliar places (e.g. outside the UK) please attach a risk assessment specific to that placeGive location(s) details (e.g. UCLan campus only)The study will involve visiting peoples’ homes, dementia support groups and private care homes to deliver questionnaires and tell people about the research.
6.3 Does the activity involve lone working?
If yes please provide further details below and attach a completed risk assessment formDescribe the lone working element, clearly explaining the risks associated and specify how you will minimise theseThe researcher will inform the principle investigator when they are visiting a care home or support group etc.
6.4 Does the activity involve children visiting from schools?
If yes please provide further details below and attach a completed risk assessment formDescribe the nature of the visit, clearly explaining the risks associated and specify how you will minimise these
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Yes No
Yes No
Yes No
Section 7ETHICAL AND POLITICAL CONCERNS
7.1 Are you aware of any potential ethical and/or Political concerns that may arise from either the conduct or dissemination of this activity (e.g. results of research being used for political gain by others; potential for liability to the University from your research)?
If yes please provide details belowIf no please continue
7.2 Are you aware of any ethical concerns about collaborator company / organisation (e.g. its product has a harmful effect on humans, animals or the environment; it has a record of supporting repressive regimes; does it have ethical practices for its workers and for the safe disposal of products)?
If yes please provide details belowIf no please continue
7.3 Are there any other ethical issues which may arise with the proposed study and what steps will be taken to address these?
If yes please provide details belowIf no please continue
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Yes No
Yes No
Yes No
Section 8DECLARATION
This section needs to be signed by the Principal Investigator (PI), and the student where the study relates to a student project (for research student projects PI is Director of Studies and for Taught or Undergrad project the PI is the Supervisor). Electronic submission of the form is required to [email protected]. Where available insert electronic signature, if not a signed version of the submitted application form should be retained by the Principal Investigator.
Declaration of the:
OR
(please check as appropriate)
The information in this form is accurate to the best of my knowledge and belief, and I take full responsibility for it.
I have read and understand the University Ethical Principles for Teaching, Research, Knowledge Transfer, Consultancy and Related Activities.
I undertake to abide by the ethical principles underlying the Declaration of Helsinki and the University Code of Conduct for Research, together with the codes of practice laid down by any relevant professional or learned society.
If the activity is approved, I undertake to adhere to the study plan, the terms of the full application of which the Ethics Committee* has given a favourable opinion and any conditions of the Ethics Committee in giving its favourable opinion.
I undertake to seek an ethical opinion from the Ethics Committee before implementing substantial amendments to the study plan or to the terms of the full application of which the Ethics Committee has given a favourable opinion.
I understand that I am responsible for monitoring the research at all times.
If there are any serious adverse events, I understand that I am responsible for immediately stopping the research and alerting the Ethics Committee within 24 hours of the occurrence, via [email protected].
I am aware of my responsibility to be up to date and comply with the requirements of the law and relevant guidelines relating to security and confidentiality of personal data.
I understand that research records/data may be subject to inspection for audit purposes if required in future.
I understand that personal data about me as a researcher in this application will be held by the University and that this will be managed according to the principles established in the Data Protection Act.
I understand that the information contained in this application, any supporting documentation and all correspondence with the Research Ethics Committee relating to the application, will be subject to the
* Ethics Committee refers to either BBAHSSS, PSYSOC or STEMH
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Principal Investigator
Director of Studies/Supervisor and Student Investigators
provisions of the Freedom of Information Acts. The information may be disclosed in response to requests made under the Acts except where statutory exemptions apply.
I understand that all conditions apply to any co-applicants and researchers involved in the study, and that it is my responsibility to ensure that they abide by them.
For Supervisors/Director of Studies: I understand my responsibilities as Supervisor/Director of Studies, and will ensure, to the best of my abilities, that the student investigator abides by the University’s Policy on Research Ethics at all times.
For the Student Investigator: I understand my responsibilities to work within a set of safety, ethical and other guidelines as agreed in advance with my Supervisor/Director of Studies and understand that I must comply with the University’s regulations and any other applicable code of ethics at all times.
or
Print Name:
Date:
Signature of Student Investigator: Lucy Hives
Print Name: Lucy Hives
Date:
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Signature of Principal Investigator:
Supervisor or Director of Studies:
Section 9ACCOMPANYING DOCUMENTATION
Please indicate here what documentation you have included with your application:
If ‘Other’ please list/describe
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Proposal / protocol
RDSC2 form – Application to Register for a Research Degree / Application for Research Programme Approval
External ethics approval letter
Letter of permission
Participant consent form(s)
Participant information sheet(s)
Interview or observation schedule
Questionnaire(s)
Advert(s)
Debrief sheet(s)
DP checklist
Risk Assessment
COSHH
Other
Carer’s Information Sheet
As you are aware, dementia is one of the most common and most serious conditions affecting a lot of people in later life. As of this year, the Alzheimers Society reports that there are 800,000 people living with dementia in the UK alone. My research interests:As a Heath Psychology Masters student at the University of Central Lancashire, my main areas of interest focus on improving the health-related quality of life of people with different conditions and diseases, and helping them to live a fuller life, even when their condition is terminal and limiting. I have chosen to base my dissertation on the quality of life of people living with dementia. To do this I aim to explore existing measures of quality of life and build on these to design new, more thorough and reliable tools which can be used to improve quality of life in people with dementia.
DEMQOL and DEMQOL-proxy:The most statistically reliable measure of quality of life for people with mild to moderate dementia, to date, is the DEMQOL. The questionnaire is completed by the service user and consists of 29 items which measure 5 different categories:1. Daily activities and looking after yourself2. Health and wellbeing3. Cognitive functioning4. Social relationships5. Self-concept.This is combined with a measure for carers to use to assess service users, called the DEMQOL-proxy. This consists of 32 items, measuring the same 5 categories as above. The DEMQOL-proxy is used along with DEMQOL for patients with mild to moderate stages of dementia, however in severe cases where there is severe memory loss and communication impairments, only the DEMQOL-proxy is completed.
The study:If you agree to take part in this study you will be asked to complete a DEMQOL-proxy questionnaire for each service user and also comment, based on your answers to the questionnaire, how you think each individuals’ quality of life might be improved.
IMPORTANT:Any information you provide will remain confidential and anonymous and will only be used within this piece of research. Raw data will only be seen by the two researchers and all sheets will be shredded once the study has concluded. You can withdraw your data during and up to one month after filling in the questionnaires.
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Carer’s Consent Form
This form is to check that you have understood all of the information provided to you on the information sheet and that you have been given chance to ask any further questions you have regarding the study or your participation.
Have the following points been highlighted?Please circle:
1. You can withdraw your data from the study at any time prior to and up to one month after YES NOhanding in your data.
2. All the data from the study will remain confidential and anonymous and raw data YES NOwill only be read by the research team.
3. You will be asked to fill in DEMQOL-proxyquestionnaire forms which require you to YES NOcomment on the quality of life of service users with dementia.
4. You will be asked to comment on how each individuals’ quality of life may be YES NOimproved.
I HAVE UNDERSTOOD ALL OF THE ABOVE INFORMATION REGARDING THE RESEARCH STUDY AND THEREFORE FULLY CONSENT TO TAKING PART.
Signature:
Date:
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DEMQOL-proxy questionnaire Participant code: ……………………………..Mild/moderate/severe (delete as appropriate)
I would like to ask you about participant’s ……………………… life as you are the person who knows him/her best. There are no right or wrong answers. Just give the answer that best describes how participant ……………………… has felt in the last week. If possible, try to give the answer that you think participant ……………………… would give. Don’t worry if some questions appear not to apply to participant ……………………… . We have to ask the same questions of everybody.
Before we start we’ll do a practice question; that’s one that doesn’t count. In the last week, how much has participant ……………………… enjoyed watching television?
A lot quite a bit a little not at all
For all of the questions I’m going to ask you, I want you to think about the last week.
First I am going to ask you about participant ………………………’s feelings. In the last week, would you say that participant ……………………… has felt…
1. Cheerful?** a lot quite a bit a littlenot at allWhat, if anything, made them feel cheerful this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make them feel more cheerful?……………………………………………………………………………………………………………………………………………….
2. Worried or anxious?A lot quite a bit a littlenot at allWhat, if anything, made them feel worried or anxious this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make them feel less worried or less anxious?……………………………………………………………………………………………………………………………………………….
3. Frustrated? A lot quite a bit a littlenot at allWhat, if anything made them feel frustrated this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make them feel less frustrated?……………………………………………………………………………………………………………………………………………….
4. Full of energy?** A lot quite a bit a littlenot at all
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What, if anything, made them feel like they were full of energy this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make them feel more like they were full of energy?……………………………………………………………………………………………………………………………………………….
5. Sad? A lot quite a bit a littlenot at allWhat, if anything, made them feel sad this week?……………………………………………………………………………………………………………………………………………….What, if anything, would help to make them feel less sad?……………………………………………………………………………………………………………………………………………….
6. Content?** A lot quite a bit a littlenot at allWhat, if anything, made them feel content this week?……………………………………………………………………………………………………………………………………………….What, if anything, would help to make them feel more content?……………………………………………………………………………………………………………………………………………….
7. Distressed? A lot quite a bit a littlenot at allWhat, if anything, made them feel distressed this week?……………………………………………………………………………………………………………………………………………….What, if anything, do you think would help to make them feel less distressed?……………………………………………………………………………………………………………………………………………….
8. Lively?** A lot quite a bit a littlenot at allWhat, if anything, made them feel lively this week?……………………………………………………………………………………………………………………………………………….What, if anything would make them feel livelier?……………………………………………………………………………………………………………………………………………….
9. Irritable? A lot quite a bit a littlenot at allWhat, if anything, made them feel irritable this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make them feel less irritable?……………………………………………………………………………………………………………………………………………….
10. Fed-up? A lot quite a bit a littlenot at allWhat, if anything, made them feel fed-up this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make them feel less fed-up?……………………………………………………………………………………………………………………………………………….
11. That he/she has things to look forward to?**A lot quite a bit a littlenot at all
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What, if anything, did they look forward to doing this week?……………………………………………………………………………………………………………………………………………….What, if anything, did they want to do this week, but couldn’t?……………………………………………………………………………………………………………………………………………….What, if anything, do you think stopped them from doing what they wanted to this week?……………………………………………………………………………………………………………………………………………….
Next I’m going to ask you about participant ………………………’s memory. In the last week, how worried have they been about…
12. their memory in general?A lot quite a bit a littlenot at all
If they have been worried about their memory, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
13. Forgetting things that happened a long time ago?A lot quite a bit a littlenot at all
If they have been worried about forgetting things from a long time ago, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
14. Forgetting things that happened recently?A lot quite a bit a littlenot at all
If they have been worried about forgetting things, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
15. Forgetting people’s names?A lot quite a bit a littlenot at all
If they have been worried about forgetting people’s names, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
16. Forgetting where he/she is?A lot quite a bit a littlenot at all
If they have been worried about forgetting where they are, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
17. Forgetting what day it is?A lot quite a bit a littlenot at all
If they have been worried about forgetting what day it is, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
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18. Their thoughts being muddled?A lot quite a bit a littlenot at all
If they have been worried about their thoughts being muddled, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
19. Difficulty making decisions?A lot quite a bit a littlenot at all
If they have been worried about their difficulty in making decisions, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
20. Making him/herself understood?A lot quite a bit a littlenot at all
If they have been worried about making themselves understood, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
Now I’m going to ask you about participant ………………………’s everyday life. In the last week, how worried have they been about…
21. keeping him/herself clean (e.g. washing and bathing)?A lot quite a bit a littlenot at all
What, if anything, makes them feel like they are keeping clean?……………………………………………………………………………………………………………………………………………….What, if anything, can be done to improve his/ her feelings of keeping clean?……………………………………………………………………………………………………………………………………………….How important is it to them that they can keep clean?
very quite a littlenot at all
22. keeping him/herself looking nice?A lot quite a bit a littlenot at all
What, if anything, makes them feel like they look nice?……………………………………………………………………………………………………………………………………………….What, if anything, can be done to improve his/ her feelings of looking nice?……………………………………………………………………………………………………………………………………………….How important is it to them that they look nice?
very quite a littlenot at all
23. getting what he/she wants from the shops?A lot quite a bit a littlenot at all
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What, if anything, makes them feel like they are able to get what they want from the shops?……………………………………………………………………………………………………………………………………………….What, if anything, can be done to improve his/her feelings of being able to get what they can from the shops?……………………………………………………………………………………………………………………………………………….How important is it to them that they can get what they want from the shops?
very quite a littlenot at all
24. using money to pay for things?A lot quite a bit a littlenot at all
What, if anything, makes them feel like they can use money to pay for things?……………………………………………………………………………………………………………………………………………….What, if anything, can improve his/her feelings of being able to pay for things with their own money?……………………………………………………………………………………………………………………………………………….How important is it to them that they can use money to pay for things?
very quite a littlenot at all
25. looking after his/her finances?A lot quite a bit a littlenot at all
What, if anything, makes them feel like they can look after their own finances?……………………………………………………………………………………………………………………………………………….What, if anything, can improve his/her feelings of being able to look after their own finances?……………………………………………………………………………………………………………………………………………….How important is it to them that they can look after their own finances?
very quite a littlenot at all
26. things taking longer than they used to?A lot quite a bit a littlenot at all
What, if anything, makes them feel like things are taking longer than they used to?……………………………………………………………………………………………………………………………………………….What, if anything, can improve his/her feelings of things taking longer than they use to?……………………………………………………………………………………………………………………………………………….How important is it to them that things don’t take longer than they used to?
very quite a littlenot at all
27. getting in touch with people?A lot quite a bit a littlenot at all
What, if anything, makes them feel like they are in touch with people?……………………………………………………………………………………………………………………………………………….What, if anything, can improve their ability to keep in contact with people?……………………………………………………………………………………………………………………………………………….
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How important is it to them that they can keep in touch with people?very quite a littlenot at all
28. Not having enough company?A lot quite a bit a littlenot at all
What, if anything, makes them feel like they have enough company?……………………………………………………………………………………………………………………………………………….What, if anything, can improve the amount of company that he/she receives?……………………………………………………………………………………………………………………………………………….How important is it to them that they have enough company?
very quite a littlenot at all
29. Not being able to help other people?A lot quite a bit a littlenot at all
What, if anything, makes them feel like they are not able to help other people? ……………………………………………………………………………………………………………………………………………….What, if anything, can make them feel like they are able to help other people?……………………………………………………………………………………………………………………………………………….How important is it to them that they are able to help other people?
very quite a littlenot at all
30. not playing a useful part in things?A lot quite a bit a littlenot at all
What, if anything, makes them feel like they are not playing a useful part in things?……………………………………………………………………………………………………………………………………………….What, if anything, would make them feel like they are playing a useful part in things?……………………………………………………………………………………………………………………………………………….How important is it that they feel they can play a useful part in things?
very quite a littlenot at all
31. his/her physical health?A lot quite a bit a littlenot at all
What, if anything, makes them worry about their physical health?……………………………………………………………………………………………………………………………………………….What, if anything, would make them worry less about their physical health?……………………………………………………………………………………………………………………………………………….How important is it that they feel physically healthy?
very quite a littlenot at all
We’ve already talked about lots of things: participant ……………………’s feelings, memory and everyday life. Thinking about all of these things in the last week, how do you think participant …………………….. would think about…
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32. His/her quality of life overall?**Very good good fair poor
What do you think participant ……………………. currently values with regard to their current quality of life?……………………………………………………………………………………………………………………………………………….What, if anything, do you think would improve their quality of life overall?……………………………………………………………………………………………………………………………………………….
Carer’s debrief sheet
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A recap of the research:Thank you for taking part in the research which aims to investigate the differences between health-related quality of life in people with dementia who live at home and who live in care homes. You were asked to fill in a DEMQOL-proxy questionnaire survey which measured the quality of life of the person who you care for. You were also asked to comment on how you think different aspects of their quality of life could be improved and how important you think certain aspects of quality of life are to the person you care for.
How will the data be used?Your data, as well as the data from many other people, will be collected together to answer a series of questions:1. Which aspects of quality of life are the most important from the view of people with dementia?2. Does quality of life differ between those with dementia living at home and those living in care homes?
What can be done about this difference if there is one?3. Do carers have the same view of quality of life as the person with dementia?
Who will have access to the data?The only people whom will have access to the data are the two investigators of the research. All data will be kept in locked filing cabinets and on a password-protected computer which only the two researchers will have access to. Randomised codes have been used to match your questionnaire to your carer’s questionnaire. Individual data will not be identifiable in the research paper and will remain anonymous.
Further questions?If you have any further questions about the research you can contact the research team via email:Lucy HivesMSc Health Psychology studentUniversity of Central LancashireEmail: [email protected]
Rachel TarlingRegistered/Practitioner Health PsychologistCourse Leader MSc Health PsychologyUniversity of Central [email protected]
Have you been affected by this research?If you have been affected at all by this research or any of the questions asked in the questionnaire, then please contact the following support groups and helplines:
Alzheimer's Society National Dementia Helpline 0300 222 1122 Can provide information, support, guidance and signposting to other appropriate organisations.
Alzheimer’s Society Services in Blackpool, Fylde and 01253 312893Wyre [email protected]’s Society Central Lancashire 01772 788700 Support groups for carers and people with dementia, [email protected] information, advise and resources for people with dementia and their carers, home visits etc.
Thank you again for taking part in this research,
Regards,
The research team.
Service user’s Information Sheet
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What is the researcher planning to do?
To use the DEMQOL questionnaire to measure quality of life in people with dementia and compare those who live at home and in care homes.
What is the DEMQOL questionnaire?
The questionnaire measures 5 different categories of quality of life in people with dementia:1. Daily activities and looking after yourself2. Health and wellbeing3. Cognitive functioning4. Social relationships5. Self-concept.
There are 29 questions which require a tick box response.
What will I be asked to do?
You will be asked to consent to taking part in the research by signing the consent form. On completion of the consent form, you will be asked to fill in a DEMQOL questionnaire.
What will my carer be asked to do?
Your carer will be asked to fill out their own questionnaire to assess what they think about your current quality of life and how they think it can be improved. They will be asked similar questions measuring the same categories.
How will my data be used?
Any information you provide will remain confidential and anonymous and will only be used within this piece of research. Raw data will only be seen by the two researchers and all sheets will be shredded once the study has concluded.
Can I withdraw my data?
You can withdraw your data at any time whilst you are filling in the questionnaire, but once you have handed in your questionnaire to the researcher it will be impossible to identify which questionnaire is yours and so it will not be possible to withdraw your questionnaire.
Service user’s Consent Form
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This form is to check that you have understood all of the information provided to you on the information sheet and that you have been given chance to ask any further questions you have regarding the study or your participation.
Have the following points been highlighted?Please circle:
1. You can withdraw your data from the study at any time prior to and up to one month after YES NOhanding in your data.
2. All the data from the study will remain confidential and anonymous and raw data YES NOwill only be read by the research team.
3. You will be asked to fill in a DEMQOLquestionnaire form which require you to YES NOcomment on your own quality of life
4. You will be asked to comment on how you think your quality of life might be YES NOimproved.
I HAVE UNDERSTOOD ALL OF THE ABOVE INFORMATION REGARDING THE RESEARCH STUDY AND THEREFORE FULLY CONSENT TO TAKING PART.
Signature:
Date:
DEMQOL questionnaire Participant code: ……………………………………….
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Mild/ moderate/ severe (delete as appropriate)
I would like to ask you about your life. There are no right or wrong answers. Just give the answer that best describes how you have felt in the last week. Don’t worry if some questions appear not to apply to you. We have to ask the same questions of everybody.
Before we start we’ll do a practice question; that’s one that doesn’t count. In the last week, how much have you enjoyed watching television?
A lot quite a bit a little not at all
For all of the questions I’m going to ask you, I want you to think about the last week.
First I am going to ask you about your feelings. In the last week, have you felt…
1. Cheerful?** a lot quite a bit a littlenot at allWhat, if anything, made you feel cheerful this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel more cheerful?……………………………………………………………………………………………………………………………………………….
2. Worried or anxious?A lot quite a bit a littlenot at all
What, if anything, made you feel worried or anxious this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel less worried or less anxious?……………………………………………………………………………………………………………………………………………….
3. That you are enjoying life?**A lot quite a bit a littlenot at all
What, if anything, made you feel like you were enjoying life this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel like you enjoy life more?……………………………………………………………………………………………………………………………………………….
4. Frustrated? A lot quite a bit a littlenot at allWhat, if anything made you feel frustrated this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel less frustrated?……………………………………………………………………………………………………………………………………………….
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5. Confident?** A lot quite a bit a littlenot at allWhat, if anything, made you feel confident this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel more confident?……………………………………………………………………………………………………………………………………………….
6. Full of energy?** A lot quite a bit a littlenot at allWhat, if anything, made you feel like you were full of energy this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel like you were full of energy?……………………………………………………………………………………………………………………………………………….
7. Sad? A lot quite a bit a littlenot at allWhat, if anything, made you feel sad this week?……………………………………………………………………………………………………………………………………………….What, if anything, would help to make you feel less sad?……………………………………………………………………………………………………………………………………………….
8. Lonely? A lot quite a bit a littlenot at allWhat, if anything, made you feel lonely this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel less lonely?……………………………………………………………………………………………………………………………………………….
9. Distressed? A lot quite a bit a littlenot at allWhat, if anything, made you feel distressed this week?……………………………………………………………………………………………………………………………………………….What, if anything, do you think would help to make you feel less distressed?……………………………………………………………………………………………………………………………………………….
10. Lively?** A lot quite a bit a littlenot at allWhat, if anything, made you feel lively this week?……………………………………………………………………………………………………………………………………………….What, if anything would make you feel livelier?……………………………………………………………………………………………………………………………………………….
11. Irritable? A lot quite a bit a littlenot at allWhat, if anything, made you feel irritable this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel less irritable?……………………………………………………………………………………………………………………………………………….
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12. Fed-up? A lot quite a bit a littlenot at allWhat, if anything, made you feel fed-up this week?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel less fed-up?……………………………………………………………………………………………………………………………………………….
13. That there are things that you wanted to do but couldn’t?A lot quite a bit a littlenot at all
What, if anything, did you want to do this week?……………………………………………………………………………………………………………………………………………….What, if anything, did you want to do this week, but couldn’t?……………………………………………………………………………………………………………………………………………….What, if anything, do you think stopped you from doing what you wanted to this week?……………………………………………………………………………………………………………………………………………….
Next I’m going to ask you about your memory. In the last week, how worried have you been about…
14. Forgetting things that happened recently?A lot quite a bit a littlenot at all
If you have been worried about forgetting things, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
15. Forgetting who people are?A lot quite a bit a littlenot at all
If you have been worried about forgetting who people are, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
16. Forgetting what day it is?A lot quite a bit a littlenot at all
If you have been worried about forgetting what day it is, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
17. Your thoughts being muddled?A lot quite a bit a littlenot at all
If you have been worried about your thoughts being muddled, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
18. Difficulty making decisions?A lot quite a bit a littlenot at all
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If you have been worried about the difficulty making decisions, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
19. Poor concentration? A lot quite a bit a littlenot at allIf you have been worried about having poor concentration, how do you think this can be overcome?……………………………………………………………………………………………………………………………………………….
Now I’m going to ask you about your everyday life. In the last week, how worried have you been about…
20. Not having enough company?A lot quite a bit a littlenot at all
What, if anything, makes you feel like you have enough company?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel like you have enough company?……………………………………………………………………………………………………………………………………………….How important is it to you that you have enough company?
very quite a littlenot at all
21. How you get on with people close to you?A lot quite a bit a littlenot at all
What, if anything, makes you feel like you get on with people who are close to you? ……………………………………………………………………………………………………………………………………………….What, if anything, would improve how you get on with people close to you?……………………………………………………………………………………………………………………………………………….How important is it to you that you get on with people close to you?
very quite a littlenot at all
22. Getting the affection that you want?A lot quite a bit a littlenot at all
What, if anything, makes you feel like you are getting the affection you want?……………………………………………………………………………………………………………………………………………….What, if anything, would improve the affection that you get from others?……………………………………………………………………………………………………………………………………………….How important is it that you get the affection you want?
very quite a littlenot at all
23. People not listening to you?A lot quite a bit a littlenot at all
What, if anything, makes you feel like you are being listened to?
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……………………………………………………………………………………………………………………………………………….What, if anything, would make sure you feel listened to?……………………………………………………………………………………………………………………………………………….How important is it that you feel like you are being listened to?
very quite a littlenot at all
24. Making yourself understood?A lot quite a bit a littlenot at all
What, if anything, makes you feel like you are understood?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel like you can make yourself understood?……………………………………………………………………………………………………………………………………………….How important is it that you make yourself understood?
very quite a littlenot at all
25. Getting help when you need it?A lot quite a bit a littlenot at all
What, if anything, do you receive help with when you need it?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel like you can get help when you need it?……………………………………………………………………………………………………………………………………………….How important is it that you get help when you need it?
very quite a littlenot at all
26. Getting to the toilet on time?A lot quite a bit a littlenot at all
What, if anything, would make you worry less about getting to the toilet on time?……………………………………………………………………………………………………………………………………………….
27. How you feel about yourself?A lot quite a bit a littlenot at all
What, if anything, makes you feel good about yourself?……………………………………………………………………………………………………………………………………………….What, if anything, would make you feel better about yourself?……………………………………………………………………………………………………………………………………………….How important is it to you that you feel good about yourself?
very quite a littlenot at all
28. Your health overall? A lot quite a bit a littlenot at allWhat, if anything, do you think is good about your current health overall?……………………………………………………………………………………………………………………………………………….What, if anything, do you think would make you feel better about your health overall?……………………………………………………………………………………………………………………………………………….
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We’ve already talked about lots of things: your feelings, memory and everyday life. Thinking about all of these things in the last week, how would you rate…
29. Your quality of life overall?**Very good good fair poor
What do you currently value with regard to your current quality of life?……………………………………………………………………………………………………………………………………………….What, if anything, do you think would improve your quality of life overall?……………………………………………………………………………………………………………………………………………….
Service user’s debrief sheet
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A recap of the research:Thank you for taking part in the research which aims to investigate the differences between health-related quality of life in people with dementia who live at home and who live in care homes. You were asked to fill in a DEMQOL questionnaire survey which measured your quality of life and also asked you to comment on how you think different aspects of your quality of life can be improved and how important certain aspects of quality of life are to you.
How will the data be used?Your data, as well as the data from many other people, will be collected together to answer a series of questions:
1. Which aspects of quality of life are the most important from the view of people with dementia?2. Does quality of life differ between those with dementia living at home and those living in care homes?
What can be done about this difference if there is one?3. Do carers have the same view of your of life as you do?
Who will have access to the data?The only people whom will have access to the data are the two investigators of the research. All data will be kept in locked filing cabinets and on a password-protected computer which only the two researchers will have access to. Randomised codes have been used to match your questionnaire to your carer’s questionnaire. Individual data will not be identifiable in the research paper and will remain anonymous.
Further questions?If you have any further questions about the research you can contact the research team via email:Lucy HivesMSc Health Psychology studentUniversity of Central LancashireEmail: [email protected]
Rachel TarlingRegistered/Practitioner Health PsychologistCourse Leader MSc Health PsychologyUniversity of Central [email protected]
Have you been affected by this research?If you have been affected at all by this research or any of the questions asked in the questionnaire, then please contact the following support groups and helplines:
Alzheimer's Society National Dementia Helpline 0300 222 1122 Can provide information, support, guidance and signposting to other appropriate organisations.
Alzheimer’s Society Services in Blackpool, Fylde and 01253 312893Wyre [email protected]’s Society Central Lancashire 01772 788700 Support groups for carers and people with dementia, [email protected] information, advise and resources for people with dementia and their carers, home visits etc.
Thank you again for taking part in this research,
Regards,
The Research Team.
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