baseline survey : pilot phase...

Deliverable 2.5 Revision: 1.0

Authors:

Dr Verina Waights (OU)

Project co-funded by the European Commission within the ICT Policy Support Programme

Dissemination Level

P Public ��

C Confidential, only for members of the consortium and the Commission Services

Baseline Survey: Pilot Phase 2

Project Acronym: DISCOVER

Grant Agreement Number: 297268

Project Title: Digital Inclusion Skills for Carers bringing

Opportunities Value and Excellence

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REVISION HISTORY AND STATEMENT OF ORIGINALITY

Revision History

Revision Date Organisation Description

1.0 November 2014 OU Draft in progress and pilot site contributions requested

1.1 March 6th 2015 OU first full draft

1.2 March 10th 2015 BIRM review

1.3 March 11th 2015 OU Final review

Statement of originality:

This deliverable contains original unpublished work except where clearly

indicated otherwise. Acknowledgement of previously published material and of

the work of others has been made through appropriate citation, quotation or

both.

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Contents

REVISION HISTORY AND STATEMENT OF ORIGINALITY ...................................................................................... 2

CONTENTS ......................................................................................................................................................... 3

TABLE OF FIGURES ............................................................................................................................................. 5

TABLE OF TABLES ............................................................................................................................................... 5

EXECUTIVE SUMMARY ....................................................................................................................................... 6

1. INTRODUCTION ........................................................................................................................................ 7

2. SECURITY, PRIVACY AND ETHICS ............................................................................................................... 7

2.1. PRIVACY FRAMEWORK AND ETHICAL CHECKLIST ................................................................................................ 7 2.2. ETHICS APPROVAL ....................................................................................................................................... 8

2.2.1. Greece (AUTH) ................................................................................................................................... 8 2.2.2. Spain (INTRAS) .................................................................................................................................. 8 2.2.3. The Netherlands (ASTRA) .................................................................................................................. 9 2.2.4. The UK (OU)....................................................................................................................................... 9

3. PILOT PROFILES ...................................................................................................................................... 10

3.1. GREECE................................................................................................................................................... 10 3.2. SPAIN ..................................................................................................................................................... 10 3.3. THE NETHERLANDS ................................................................................................................................... 12 3.4. THE UK .................................................................................................................................................. 14

4. PARTICIPANTS ........................................................................................................................................ 15

5. RECRUITMENT ........................................................................................................................................ 15

5.1. LEARNING FROM RECRUITMENT DURING PILOT PHASE 1 .................................................................................. 15 5.2. RECOMMENDATIONS ARISING FROM PILOT PHASE 1 ........................................................................................ 17 5.3. RECRUITMENT DURING PILOT PHASE 2 .......................................................................................................... 17

5.3.1. Greece ............................................................................................................................................. 18 5.3.2. Spain................................................................................................................................................ 19 5.3.3. The Netherlands .............................................................................................................................. 20 5.3.4. UK .................................................................................................................................................... 20

6. USER METHODOLOGY ............................................................................................................................ 22

7. BASELINE SURVEY ................................................................................................................................... 24

7.1. EVALUATION OF THE INITIAL QUESTIONNAIRE DURING PILOT PHASE 1 ................................................................. 25 7.1.1. Recommendations for Pilot Phase 2 ............................................................................................... 25

7.2. PILOT PHASE 2 ......................................................................................................................................... 25

8. FINDINGS FROM PILOT PHASE 2 ............................................................................................................. 26

8.1. DEMOGRAPHICS ....................................................................................................................................... 26 8.1.1. Informal carers ................................................................................................................................ 26 8.1.2. Formal carers .................................................................................................................................. 28

8.2. LENGTH OF TIME AS A CARER ....................................................................................................................... 29 8.3. LEARNING DIGITAL SKILLS ........................................................................................................................... 29 8.4. ATTITUDES TOWARDS COMPUTERS ............................................................................................................... 30 8.5. TOPICS OF INTEREST TO CARERS ................................................................................................................... 31 8.6. QUALITY OF LIFE OF CARERS ........................................................................................................................ 32 8.7. HEALTH .................................................................................................................................................. 32 8.8. WELL-BEING ............................................................................................................................................ 32

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8.9. LONELINESS AND ISOLATION ........................................................................................................................ 34 8.10. GENDER .................................................................................................................................................. 35 8.11. COUNTRY ................................................................................................................................................ 37 8.12. AGE ....................................................................................................................................................... 43

9. CONCLUSIONS ........................................................................................................................................ 43

9.1. RECRUITMENT .......................................................................................................................................... 43 9.2. BASE LINE SURVEY .................................................................................................................................... 44

9.2.1. Demographics ................................................................................................................................. 44 9.2.2. Health .............................................................................................................................................. 44 9.2.3. Wellbeing ........................................................................................................................................ 45 9.2.4. Loneliness and isolation .................................................................................................................. 45 9.2.5. Learning digital skills ....................................................................................................................... 45 9.2.6. Topics of interest to carers .............................................................................................................. 46 9.2.7. Attitudes to computers ................................................................................................................... 46 9.2.8. Gender ............................................................................................................................................. 47 9.2.9. Country ............................................................................................................................................ 47

10. APPENDICES ........................................................................................................................................... 49

APPENDIX 1 BIRMINGHAM CITY COUNCIL ETHICS APPROVAL ........................................................................................... 49 APPENDIX 2 OPEN UNIVERSITY ETHICS APPROVAL ......................................................................................................... 50 APPENDIX 3 UNIVERSITY OF THESSALONIKI ETHICS APPROVAL .......................................................................................... 51 APPENDIX 4 INTRAS ETHICS APPROVAL ...................................................................................................................... 52 APPENDIX 5 PARTICIPANT INFORMATION SHEET ............................................................................................................ 53 APPENDIX 6 USER ENGAGEMENT IN ITERATIVE DESIGN: THE NETHERLANDS ........................................................................ 58 APPENDIX 7 INVITATION LETTER FOR CARERS ................................................................................................................ 60 APPENDIX 8 PROGRAMME OVERVIEW FOR INTRODUCTORY WORKSHOP ............................................................................ 61

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Table of Figures

Figure 1: A carer trying out DISCOVER on a tablet and a smart phone ................................ 22

Figure 2: Unique coding for each participant ........................................................................ 23

Figure 3: Excel spreadsheet for monitoring data collection ................................................... 23

Figure 4: Carers and DISCOVER partners exploring the DISCOVER skills Zone ................. 24

Figure 5: Length of time participants have been in a caring role ........................................... 29

Figure 6: Frequency of contact with non-resident family and friends ..................................... 35

Figure 7: Levels of employment of male and female informal carers .................................... 36

Figure 8: Informal carers social networking skills by gender ................................................. 37

Figure 9: Gender of informal carers by country ..................................................................... 38

Figure 10: Age of informal carers by country ......................................................................... 38

Figure 11: Levels of education of informal carers by country ................................................ 39

Figure 12: Informal carers’ levels of employment by country ................................................. 39

Figure 13: Informal carers’ ownership of computers/mobile phones and methods of accessing the internet ..................................................................................................................... 40

Figure 14: Attitudes to computers by country ........................................................................ 40

Figure 15: Informal carers’ use of computers by country ...................................................... 41

Figure 16: Informal carers’ use and desired use of computers by country ............................. 42

Figure 17: Informal carers’ attitudes to society by country ..................................................... 43

Table of Tables

Table 1: Number of Participants (carers and cared for people) recruited to date for Pilot Phase 2 [by country] ...................................................................................................... 18

Table 2: Demographics of informal carers in Pilot Phase 2 ................................................... 26

Table 3: Percentage of informal carers per country: according to their relationship with the care recipients ............................................................................................................... 27

Table 4: Demographics of formal carers in Pilot Phase 2 ...................................................... 28

Table 5: Attitudes towards computers ................................................................................... 31

Table 6: Interest in learning................................................................................................... 32

Table 7: Feelings of Well-being ............................................................................................. 33

Table 8: Feelings about society ............................................................................................ 33

Table 9: Feelings about work-life balance ............................................................................. 34

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Executive Summary

Pilot Phase 2 was carried out in 4 pilot sites: Greece, Spain, the Netherlands and the UK. Prior

to this, a pre-pilot phase and Pilot Phase 1 had been completed. During the pre-pilot phase,

focus groups were held in each pilot site: initially to ascertain the needs of carers, and then to

iteratively test the four developing Skills Zones to ensure accessibility and appropriateness.

During Pilot Phase 1, each pilot site recruited 25 - 30 formal and informal carers and a

number of stakeholders to trial the Skills Zone and the impact evaluation tools. Building on

the findings from the initial focus groups, a base line survey was conducted in Greece, Spain

and the UK to explore the impact of caring on carers’ health and well-being, establish their

levels of digital, caring and employability skills, and to determine their interest in developing

these skills further. Carers in the Netherlands were reluctant to participate in the survey.

The Pilot Phase 1 base line survey revealed that informal carers were often caring for more

than one person and many were not in paid employment. The majority of formal and

informal carers did not feel left out of society but nearly 20 percent felt their role was

undervalued. Carers were interested to gain and improve their digital skills but were

primarily interested in learning about health conditions and improving their caring skills.

This report focuses on the findings from the base line survey carried out during Pilot Phase 2.

347 carers and cared for people were recruited across the four pilot sites. The survey

revealed that carers spanned a range of ages, years in a caring role, and caring situations.

Most of the informal and formal carers were female, caring for people over 70 years old.

Many informal carers were caring for one or both parents and a high proportion were caring

for spouses or partners. Many carers were also looking after children, siblings and

grandparents, and some were also looking after neighbours and friends.

Informal carers tend to experience poorer quality of life than formal carers and ill health is

more likely to impact on their daily living. Generally, formal carers have a greater sense of

wellbeing than informal carers, although some formal as well as informal carers felt

undervalued and left out of society.

Many carers had internet access but generally their use of the internet was quite limited.

Carers were interested in getting started with technologies, improving their knowledge of

health conditions and their caring and employability skills. Both formal and informal carers

were particularly interested in contacting other carers online.

Country related differences regarding informal carers are complex: the age profiles and

carer’s levels of employment differed across the four countries. However, carers across the

four countries were equally likely to own a PC, although they differed in their methods of

accessing the internet and the range of activities they engaged in. Informal carers generally

across the four countries had similar perceptions of well-being but there were significant

differences in their attitudes towards both computers and society.

The findings from this baseline survey have informed WP3 Content Creation and WP4 Pilot

Deployment during Pilot Phase 2 and will inform WP5 Exploitation and Commercialisation.

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1. Introduction

This report presents the findings of the base line survey carried out across the four pilot sites

during Pilot Phase 2. Pilot Phase 2 is the main pilot period for the project, when the partners

aimed to recruit 400 carers (100 per pilot site) to trial the Skills Zone that has been designed,

built and interactively tested during earlier phases of the project. The findings from this

baseline survey have informed WP3 Content Creation and WP4 Pilot Deployment during Pilot

Phase 2 and will inform WP5 Exploitation and Commercialisation.

2. Security, privacy and ethics

Partners in the four test bed sites agreed to follow the guidelines outlined in Deliverable

D2.1: User Engagement Methodology and Deliverable D2.2: Privacy Framework and Ethical

Checklist. The guidelines about ethical issues within the DISCOVER project are written to

inform partners: they may not necessarily point to clear answers but deviation from these

guidelines should, however, only be made after careful consideration of the ethical issue in

question. The partners also agreed to reproduce the relevant documents developed by The

Open University in their native languages so that the documents are accessible to

participants in this project, carers and the people they care for and stakeholders: such as care

agencies, carer organisations, older people organisations, local government and

municipalities.

2.1. Privacy Framework and Ethical Checklist

The Privacy Framework and Ethical Checklist for the DISCOVER project (see Deliverable D2.2:

Privacy Framework and Ethical Checklist) were developed at an early juncture as a necessary

and important part of the project by HDTI. A Privacy Impact Assessment (PIA) process was

developed that drew on different sources, notably that of the UK Information Commissioner.

Its importance was recognised, of course, as enhanced by virtue of (a) the position of carers

in relation to often very vulnerable older people; and (b) the propensity of new technologies

to gather personal information relating to the dynamics of caring relationships. Key facets of

the Privacy Impact Assessment (PIA) therefore focused on confidentiality and privacy;

consent, autonomy and choice; justice/fairness; inclusion; security; and dignity.

A template was developed to assist partners in conducting the PIA (see Appendix A in

Deliverable D2.2: Privacy Framework and Ethical Checklist). Partners completed the PIAs in

relation to each task where privacy issues were seen as arising or likely to arise. An ethical

checklist accompanied the PIA template (see Appendix B in Deliverable D2.2: Privacy

Framework and Ethical Checklist). The ethical checklists and PIAs were reviewed and updated

by each project partner as necessary to ensure they were considering the needs and rights of

all carers and cared-for people recruited to participate in the DISCOVER project.

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2.2. Ethics Approval

Ethics Approval for the project as a whole has been given by Birmingham City Council

(Appendix 1) and for recruiting participants, and collating and analysing data collected from

across the 4 pilot sites by The Open University (Appendix 2). The information sheets and

consent forms and impact evaluation tools were developed by The Open University and

translated by the other partners into their native languages. Partners agreed to abide by the

methodology approved by the Open University and detailed in Deliverable D2.1: User

Engagement Methodology.

All partners agreed to abide by the ethics guidelines of the European Commission and their

own country. Information about the legislation re ethics guidelines of the European

Commission and partner countries is detailed in Deliverable D2.1: User Engagement

Methodology. Approval for each partner country is detailed below.

2.2.1. Greece (AUTH)

The DISCOVER pilot (research) protocol in Thessaloniki, Greece was approved by

the bioethics committee of the Medical School of the Aristotle University of Thessaloniki

(approval number 94/26-6-2014, Appendix 3).

The researchers followed the guidance set out in the following directives and laws: The Data

Protection Directive 95/46/EC of the European Parliament and of the Council of 24 October

1995, serves as the reference text for data protection issues throughout Europe, and also

requires that each Member State set up an independent national body responsible for the

protection of these data.

Law 2472/1997 protects individuals with regard to the processing of personal data. According

to article 15, the Personal Data Protection Authority is responsible for the implementation of

this law and all other regulations pertaining to the protection of individuals from the

processing of personal data.

Law 2472/1997 refers to the protection of personal data and privacy in the electronic

telecommunications sector and amendment of law 2472/1997.

2.2.2. Spain (INTRAS)

Participants in DISCOVER were recruited from outpatient memory clinics and residential care

homes in Zamora. Ethics approval was given by the Board of the Provincial Hospital of

Zamora (Appendix 4). During the project, the two ambassadors, Dr. Manuel Franco, Head of

the Psychiatry Unit at the Provincial Hospital of Zamora and Dr. Ignacio Toranzo were kept

informed about the progress of the project. Every 3 months there was a meeting between

the ambassadors and the technical team from INTRAS, with representatives/coordinators of

the DISCOVER main activities in INTRAS to inform about the progresses made in the project,

potential constraints, and to receive counseling about the best way to proceed.

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Although this project involves human participants, it was not necessary to seek approval

from a Clinical Research Ethics Committee (Spanish law [223/2004]) because DISCOVER does

not include clinical trials.

INTRAS followed the Scientific Good Practices Code of the CSIC (Spanish Highest Board for

Scientific Research) and were abiding by the requirements of their national laws concerning

the process and the transfer of data in this kind of activity and research [Regulations:

ORGANIC LAW 15/1999 of 13 December on the Protection of Personal Data / Royal Decree

1720/2007, of 21 December, which approves the regulation Implementing Organic Law

15/1999, of 13 December, on the Protection of Personal Data].

2.2.3. The Netherlands (ASTRA)

In The Netherlands there was no need for special approvals for the research work necessary

for DISCOVER. In the course of the DISCOVER trials there was no collection or storage of

personal data by ASTRA. The participants decided for themselves what personal

characteristics or data they want to share.

On line security and data protection was handled according to the rules and guidelines

described in the Wet bescherming persoonsgegevens (Wbp: Law to protect personal data).

The ‘College Bescherming Persoonsgegevens (CBP)’ i.e. the Dutch Data Protection Authority

(DPA) http://www.dutchdpa.nl/Pages/home.aspx is responsible for the monitoring of this

law. Localised trials were headed by local authorities and thus any collecting and storage of

data was protected by the rules and regulations that all Dutch municipalities have regarding

personal data (Wet gemeentelijke basisadministratie persoonsgegevens, Wet GBA).

When necessary the ECG Centrum voor Ethiek en Gezondheid (Centre for Ethical and Health

issues) and the NEN, Netherlands Normalisation institute will be consulted. As yet there was

no need for this. The latter are responsible for monitoring the standards and protocols

regarding online security and data protection in The Netherlands; for instance the ‘Code voor

Informatiebeveiliging’ which is the Netherlands version of the British Standards 7799: NEN

ISO 27001 and NEN ISO 27002 are applicable. Laws concerning medical research with

participants and patients are WMM and WGBO, which give guidelines for scientific research

as a whole and the protection of people who cannot speak for themselves.

2.2.4. The UK (OU)

Ethics approval for recruiting participants and collecting data in the UK, including iterative

and beta testing of the DISCOVER materials before they are used by participants in the other

pilot site countries, and analyzing data from across the four pilot sites was given by the

Human Research Ethics Committee at The Open University (Appendix 2).

No UK legislation provides guidance on (or requirements for) effective user engagement in

social research. The researchers abided by good practice set out in the guidelines of the UK

Social Research Association (http://www.the-sra.org.uk/documents/pdfs/ethics03.pdf) and

the requirements of the Data Protection Act (1998).

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3. Pilot Profiles

Each pilot site was selected to demonstrate that DISCOVER can provide an effective solution

for carers across a number of European countries, with differing digital infrastructures.

Carers from these countries have differing social and economic backgrounds and are carrying

out their caring roles in a variety of settings: their own homes (for resident relatives), the

homes belonging to relatives or friends, homes belonging to people who are not family or

friends, day care centres and residential care homes. A brief overview of each pilot site is

given below and further details can be found in the DoW.

3.1. Greece

Thessalonica has a population of around 1 million citizens. Thessalonica is Greece's second

major economic, industrial, commercial and political centre, and a major transportation hub

for the rest of south eastern Europe. In recent years, the city has suffered industrial

restructuring and lost many jobs; while it is moving toward a more service-based economy.

Care services in Thessalonica, as in the rest of Greece, are provided either by municipal and

societal organisations or from families and private carers, often immigrants who may be

uninsured. The carers often lack any formal education or appropriate certification to perform

these kinds of services.

The Greek pilot is in Thessalonica, coordinated by the Medical School of Aristotle University

of Thessalonica (AUTH) and focuses on training of formal and informal carers in the digital

skills that they should acquire. Municipal and other societal facilities have been selected for

their access to the target population, average socio-economic status, and proven interest and

effort in enhanced social services and new technologies. These chosen sites reflect the

diversity of the carers. All facilities and carers, work directly with large populations of elderly

and have earned the respect and acceptance of the local populations. Staff and older people

at the selected residences are receptive to be trained in and learn new ICT technologies.

Moreover, at these places there is also equipment and basic infrastructure such as internet

connection in situ. Finally, such residences belong to a wide community of the Central

Macedonia region, so the impact of the activities that are carried out there will be

disseminated to the rest of the nearby residences.

Participants were recruited from the following institutions that have a large number of

domiciliary care workers.

• Day Care Centres in Thessalonica for older people with Alzheimer’s

• Private homes via video/teleconference or email.

3.2. Spain

The Spanish pilot is in the Zamora and Valladolid provinces, at INTRAS’ facilities based in the

cities of Zamora, Valladolid, Coreses and Toro, as well in different collaborating centres in the

community.

.

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Zamora is situated in the north-west of Spain and it is one of the Spanish provinces with a

higher percentage of elderly people and depopulated and rural areas - 65% of its population

live in small rural towns. In this context, ICT solutions designed to improve the quality of life

of elderly people and their carers are of utmost importance, to enable delivery of accessible

training, social and health services. INTRAS’ facilities in Zamora are situated in Zamora (city),

Toro and Coreses. Valladolid is a province situated in the west of Spain, whose capital city is

also called Valladolid and is the seat of the Regional Government of Castilla & León Region. It

is the 13th most populated city in Spain with 315.522 inhabitants. Castilla y León represents

both one of the largest regions in Europe, and the most over-aged and depopulated region in

Spain, what entails several health & social changes and challenges for which adequate

solutions need to be found.

Relevant stakeholders in the DISCOVER project are the Zamora Provincial Hospital and the

Social Action Centres building upon the permanent cooperation that exists among INTRAS

and these organizations.

INTRAS is a non-profit organisation founded in August 1994 whose main aim is to improve

the quality of life of people suffering from mental disorders, disabled people, elderly people

and their caregivers. Currently, INTRAS is composed of 8 centres in 4 different provinces in

Spain with over a hundred of professionals, mainly from psychiatric, psychological, social and

economic fields who combine research, training and healthcare. The different facilities

managed by the Foundation offering different social-health services for the target group are:

the Psycho-sciences Institute (IBIP Lab); a Psychosocial Rehabilitation Centre, a Residential

Centre, two Labour Rehabilitation Centres, two Educational Centres, two Day Care Centres,

13 supervised flats, and two clinical units for cognitive rehabilitation of older people.

Additionally there is a Communitarian Support Team composed of one psychologist and two

social educators that offers treatment and support of the patient and their carers.

INTRAS offers its treatment and intervention services annually to over a thousand patients

and carers. From INTRAS’ standpoint, the ageing process, along with prolonged and severe

mental illness may increase the dependency, and in these situations the families often

assume a greater responsibility for providing care. This care translates into a high burden for

the caregiver as well as a great loss of free time, and requires a range of knowledge to carry it

out. To face these difficulties, INTRAS offers informal caregivers different Psycho-education

programs and other interventions to support them and to improve their quality of life. But

these interventions are not straightforward. Many families have multiple problems to

address therefore do not necessarily have time to attend conventional treatment.

Additionally, many families are afraid or reluctant to go to a health centre, as there may be

some perceived stigmatization. This can be even more complex in the rural population where

resources are limited and the possibility of stigma is greater. Therefore ICT based

technologies are an ideal means to overcome distance and provide cost-effective

interventions. Moreover, the empirical evidence shows that remote access would bring

equivalent benefit to some traditional face-to-face therapies.

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Informal carers have been recruited from the following institutions

INTRAS’ Centres:

• Psychosocial Rehabilitation Centre (Zamora)

• Community support teams (itinerant) (Zamora)

• Day care centres and Residence facilities (Zamora)

• Clinical Units

Other stakeholders:

• Psychogeriatric unit of the Provincial Hospital of Zamora (Zamora)

• Social Action Centre of Zamora

• Virgen del Canto Residence Facility (Toro-Zamora)

• HH. de los Pobres Residence Facility (Valladolid)

Formal carers were recruited from the staff of INTRAS’ day care centre and the Toro

residence facility for Pilot Phase 1. These samples will be increased by other candidates

interested in participating, identified though INTRAS CV database and through public

advertisements at INTRAS’ web page, existing social support networks, newspapers, and

newsletters.

3.3. The Netherlands

There are 2.4 million (unpaid) carers in the Netherlands. These are people who spend more

than eight hours a week or more than three months caring for an elderly, disabled or

chronically ill relative who needs their help. Another 15,000 people act as volunteers, caring

not only for people with a physical or mental disability, a chronic or life-threatening illness or

emotional problems but also for their carers. This is not instead of professional care, but in

addition to it.

The Netherlands has a particularly diverse population and covers the whole social spectrum

in its population from the poorest to the wealthiest including some of the most deprived

areas in the country. Of the population of 16.6 million of the Netherlands there are 1.83

million whose country of origin is not Western-European and 1.5 million of Western-

European origin. There are 7.35 million households and the average life-expectancy for men

is 78 years and for Women 82 years. The average age is 38.7 years (Gradually increasing: in

1990, it was 36.6). 80.6% of the population are classified as ‘Healthy to Very Healthy’.

The numbers of immigrants stand at 143,000 comprising those from EU countries and

returning Dutch citizens. There are 89,109 emigrants (down from 116,000) and in common

with many EU countries the Netherlands is addressing the support needs of asylum seekers

mainly from Somalia, Iraq and Afghanistan.

Pilot participants are engaged from Kerkrade region and the region of Alphen aan den Rijn

(bollenstreek). Also nationwide recruitment is undertaken through the media and national

umbrella organisations. Astra-Com focuses on digital skills training of both formal & informal

carers engaged in the pilot. The local and regional organisations for informal carers will

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address the digital skills needs of informal carers. The regional organisations for professional

care will address the digital skills needs of formal carers.

Informal carers are recruited through the following local and regional organisations,

organised by the local authorities:

• Homecare organisation(s)

• Wmo Platforms (elderly)

• Informal care platforms

• Support and information centres for informal Carers

• Advisory Board of Senior Citizens

• Unions of the Elderly

• Computer training organisations for the elderly

• Public Library and special focus groups of/for informal carers.

Formal carers are recruited through the following organisations:

• Meander (Kerkrade)

• Participe (Alphen aan de Rijn/ bollenstreek)

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3.4. The UK

Birmingham has a population of just over 1 million and the highest number of the people in

the country who are both income and employment deprived. Deprivation is associated with

high prevalence of unpaid care, as well as with high levels of illness, poverty and

unemployment and social exclusion. 10% of Birmingham’s population provide unpaid care of

these, significantly, 25% (25,327) are providing over 50 hours of unpaid care per week.

Amongst people of working age, the economically inactive were most likely to be carers.

Carers are the most socially excluded group of people; more likely to live in social housing

with 12% themselves in poor health.

In addition Birmingham is the most ethnically diverse city in the UK with more than a third of

its population from BME communities and by 2026 is expected to become a plural city

without any majority ethnic group. This diverse population brings challenges in meeting their

needs and those of carers and a rise of 18% in numbers of people with limiting long term

illness is forecast (2008 – 2030).

It is recognised that carers represent a very diverse group of the population who will have

varying needs and skill requirements. With Birmingham there is the challenge of an ethnically

diverse city that will need to be addressed to ensure a representative, meaningful sample is

selected for the pilot.

Informal carers were recruited through:

• the Birmingham Carers centre

• Birmingham Carers Partnership Board

• Health and Well Being Partnership

• Birmingham City Council Adult & Communities

• Birmingham City Council HR Learning & Development

• Age Concern Birmingham

• Carers UK – Birmingham Branch

• Birmingham Carers Association

• Carers Emergency Service for Carers

• BME carer champions

Formal carers were recruited through care agencies.

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4. Participants

Participants in this project were providing domiciliary care for the people they were caring

for, such as

o Activities of daily living (ADLs) such as personal hygiene, meal preparation etc

o Extended activities of daily living (EADLs) such as shopping, finances, attending

healthcare appointments

o Some nursing activities such as blood glucose monitoring, stoma care, PEG

feeding

Carers were not expected to be providing specialised medical care as developing learning

materials for such carers is outwith the scope of this project.

For the purposes of the project, carers were regarded as either informal or formal carers.

Informal or family carers are carers who are caring for at least one relative, friend or

neighbour. They may be paid to undertake this care but are most likely to be unpaid. They

currently have, or had previously, a work role outside of this caring role.

Formal carers or careworkers are carers who are caring for at least one person who is not a

relative, friend or neighbour. They are paid to undertake this role, by either a care agency, a

residential care home or the people they care for and they regard this as their main work

role.

These differences between formal and informal carers in remuneration for providing care,

the requirements of any care agency employing or supporting carers, and carers’

relationships with the people they care for may influence their motivation to learn.

Carers participating in the project were aged between 18 and 75, with a focus on working –

age carers aged 18 – 64. Any carer wishing to join the project who was over 75 was welcome

but partners did not actively seek to recruit the ‘older old’. For Pilot Phase 1, carers could be

current or past carers and there was no restriction on the age of the person they were caring

for. For Pilot Phase 2, carers are currently caring for at least one older person (aged 65 and

over).

5. Recruitment

Recruitment for Pilot Phase 2 has built on the experiences of recruitment for Pilot Phase 1

across the 4 pilot sites.

5.1. Learning from Recruitment during Pilot Phase 1

Recruitment was challenging for some countries, notably the UK and the Netherlands. In the

UK, cuts in public funding had made it difficult for some of the carer organisations to engage

with DISCOVER as fully as they had intended at the start of the project. This meant we had to

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seek alternative routes to reach carers which slowed recruitment down considerably. In the

Netherlands recruitment required an amended approach after initial attempts inviting carers

to attend a session where they could find out more about how learning digital skills could

support them in their caring role were unsuccessful. Carers in all four pilot sites are very time

short. In Greece and the Netherlands approaching carers was found to be particularly

challenging due to their commitments and limited time and energy to engage in new

activities.

The posters and invitation letters used to advertise workshops and focus group events were

visual and engaging through speech bubbles and repeated the message that the project is

carer driven. Carer feedback indicated that this was well received. However, it became

apparent in all pilot sites that although some carers responded to individual letters of

invitation or posters and flyers displayed in carers’ centres or other public places, personal

contact was needed to reach the proposed number of carers for Pilot Phase 1. In some cases

this was through the project partners talking directly with care organisations to encourage

them to contact carers, and in other cases project partners directly contacted potential

participants previously identified by the care organisations. However, once carers join the

project, many of them are suggesting other individual carers and organisations to approach,

so participants for Pilot Phase 2 are being recruited through this ‘snowballing’ effect.

Project partners that are not directly involved in care services found that direct contact with

carers doesn't work. Contact needs to come through trusted organisations, such as carer

support organisations. Therefore a 2-step approach is required, to first engage with these

organisations who then, in a second step, invite the carers. However, engagement of external

stakeholders to reach out directly to carers relies on trusted relationships being built with

pilot partners, which requires time. In the UK, due to the organisations who had offered

support initially no longer being able to engage fully, and in the Netherlands, building new

relationships was more difficult than anticipated and took longer before the third party

organisations felt comfortable to reach out to their carer populations. It is clear that project

staff need to introduce themselves to the organisations, preferably through face to face

meetings. Each organisation works differently with carers resulting in a limited transferability

of approach.

The UK pilot found that during recruitment sessions informal carers were reluctant to engage

with the city council because many carers had had numerous interventions from the local

authority and other agencies and felt that 'this is just another request from the organisation

for my time that doesn't gain me anything' or that 'this is just another project that doesn't

deliver after the funding runs out'. It was observed by the pilot sites that this could be true

for other countries too as public sector budget cuts are common across Europe and carers

have lost support. Contact from the OU on the other side was welcomed and people felt

valued because a university researcher contacted them. The OU was seen as a neutral

outsider that showed interest in carers’ needs and issues.

In Spain, participants' first contact with the project was face-to-face during memory

workshops in a residential setting. Carers were motivated to participate after observing staff

using the Skills Zone. In the UK a first round of face to face recruitment sessions and focus

groups to identify user needs allowed the project to collect contact details of 20 carers.

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These carers were contacted again by telephone, by the same person, to invite them to look

at the improved Skills Zone in response to their initial needs statement. Carers were pleased

about the update and now felt comfortable to recommend other carers as potential

participants.

Some pilot groups were run as a combination of focus group with workshop to introduce the

Skills Zone. Facilitators found it was vital to go at the learners’ pace to ensure they felt

supported and give them confidence to use the Skills Zone. In the UK many carers that were

recruited through third sector partners were not familiar with email. During the first session,

they were shown how to set up an email account and registered with an email provider.

Initial information had to be provided as hard copy. This clearly demonstrates that pure

online engagement won't work for this target group. However, it needs to be considered that

these carers are seen as a hard to reach group that does not constitute the majority of

carers.

5.2. Recommendations arising from Pilot Phase 1

1. Project partners will continue to develop relationships with trusted organisations to

aid recruitment of carers

2. Face to face focus groups and training workshops are vital to get carers initially to

engage with DISCOVER

3. Encourage carers and stakeholders who participated in Pilot Phase 1 to recommend

other carers to join Pilot Phase 2.

4. In Kerkrade, in the Netherlands, the majority of the informal (and even formal) carers

don’t know anything about ‘computers’ and are averse to using it, according to the

focus group. So for Pilot Phase 2, carers will be invited to join groups that are mainly

offering things they dearly want: meet each other, get answers to difficult questions

they have, find experts when needed. This exercise has been named ‘Leuk voor

Elkaar’ (Being nice, kind & compassionate) to one another. The DISCOVER Skills Zone

will be presented to all ‘Leuk voor Elkaar’ groups, together with other digital

resources and applications.

5.3. Recruitment during Pilot Phase 2

A protocol for user engagement in Pilot Phase 2, building on the learning and experiences

gained by partners during Pilot Phase 1, was developed by the OU to ensure consistency

across the 4 pilot sites. The key stages of the protocol relevant to completing the baseline

survey are

• Carers to be recruited via ‘trusted friends’ and via snowballing, where carers already

recruited recommended other carers to join the project

• Face-to-face training workshops to get participants started with DISCOVER

• A ‘Getting Started’ manual to be sent to participants unable to attend training

workshops

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• On joining DISCOVER participants will be asked to complete the initial impact

questionnaires

• Data to be sent to the OU for analysis

Informal carers

Partners worked with carer support and community organisations that support informal

carers to approach pilot participants. This ensured that communication with informal carers

happened through a trusted intermediary and that venues for meetings were well-known.

Formal carers

Formal carers were recruited through their Employers. Where consortium partners were

themselves employers of formal carers, these were engaged in the pilot. All partners have

established links to care employers that are supportive of the project and willing to engage

their employees.

Across 3 of the 4 pilot sites: Greece, Spain and the UK, recruitment was slow but steady: to

date 297 participants have been recruited (99% of target: 300 participants). In contrast,

recruitment in the Netherlands has been extremely challenging and has had a very significant

adverse effect on the overall progress of Pilot Phase 2. The Dutch partners only started to

recruit participants in Month 31. To date they have recruited 50 participants (50% of their

target: 100 participants).

Data per country is given in Table 1, and further details of recruitment per pilot site are given

in the following sections.

Table 1: Number of Participants (carers and cared for people) recruited to date for Pilot Phase 2 [by

country]

Greece Spain The Netherlands* UK

Informal carers 61 67 40 96

Formal carers 25 38 8 4

Cared-for people 0 2 2 4

Total 86 107 50 104

Total number of participants (carers and cared-for people) across all 4 pilot sites: 347

*from Month 31

5.3.1. Greece

Most of the carers for Pilot Phase 2 were recruited by: Greek Association of Alzheimer’s

Disease and Relative Disorders, Day Centres (Saint Helen and Saint John), Medical School of

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Aristotle University of Thessaloniki, AHEPA University Hospital, Hellenic Open University, and

Group of Relatives of people suffering from Alzheimer of Thessaloniki.

Recruitment for Pilot Phase 2 has been challenging due to

• Lack of commitment to the support offered by some organisations

• Lack of interest of formal carers due to their “heavy work schedule”

• Summer period (holidays) which affected the availability for participants/stakeholders

The training sessions/workshops were held at the premises of the Greek Association of

Alzheimer’s Disease and Relative Disorders, in a comfortable room equipped with 8 personal

computers in groups of 8 participants maximum.

Training sessions/workshops were running once a week for an hour. Participants had the

opportunity to become familiar with different services and tools of the DISCOVER Learning

Zone. They were introduced to the DISCOVER platform and the basic knowledge of the

internet technologies and services. The goal was to help carers feel confident to use the

DISCOVER platform on their own in the next steps. We found that the 8 weeks duration was

suitable and face to face meetings were necessary.

5.3.2. Spain

106 participants were recruited in this period for Pilot Phase 2 (67 Informal carers, 38 formal

carers, 2 cared-for people). Near to 300 caregivers were approached directly by INTRAS pilot

team or indirectly by the stakeholders supporting the project. The difficulty to engage 100

caregivers in this period had to do with many factors, among which were some we could not

overcome: i. on one hand very young carers are self-sufficient in managing ICT and although

they observe the benefit of the DISCOVER platform by the innovative methodology on which

it is designed, this does not appeal to everyone by the importance of regular use raised in the

pilots, on the other hand if we talk about older carers with non-existent or reduced

experience with ICT, those are the carers, who as expected, have more difficulty to get

involved; ii. some of the stakeholders that had already given us their support, turned out to

suffer alterations in the management team, thus, further meetings had to be arranged to

present the project to the new directors, and depending on the entities, the final answers

were given 1-6 months after the formal meetings; iii. was also noted by some entities a lack

of commitment to the support offered initially. iv. this period included the summer period

(holidays) which affected the availability for contacts and for first meetings with

carers/potential participants or even by the external entities that established with INTRAS a

support relationship for recruitment.

Carers in the Pilot Phase 2 were recruited through or signalled to the pilot team for further

contact mainly by:

- Memory workshops

- Communitarian Team

- INTRAS Residence

- INTRAS Day Centre

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- Zamora Hospital

- Workshop Innovation and Technologies for Integrated Mental Healthcare

- “Get ahead of Alzheimer’s” Conference promoted by INTRAS and supported by the Zamora

City Council

In addition, recruiting caregivers has been challenging as here in Spain we are working with a

very difficult scenario, an intervention area characterized by its rurality, and especially in

cases that demonstrate the absence or reduced contact with family support and limited

familiarity with ICT.

The 107 recruited participants received information about the project and the Skills Zone,

and immediately after having given their informed consent they received the login data with

supporting material that fulfils two objectives: i. facilitate access to the platform with an easy

description of all the steps for the first entry and to ensure an independent use; ii. used as a

motivating and reminder method.

5.3.3. The Netherlands

The setting up of ‘Leuk voor Elkaar’ groups took more time than expected, despite the

enthusiastic responses. Also, the requirements of the focus group regarding the DISCOVER

product took more time to be implemented than planned. For those reasons there was a

delay in starting the recruitment of testers, which could compromise the Dutch input in the

DISCOVER project regarding the promised 100 testers. Therefore, following discussions with

the OU, we decided to approach individual carers directly, starting 20th

of October, to ask

them to join the test phase of DISCOVER by filling in the initial impact questionnaire.

Participants are then given step by step instruction of how to log in to the DISCOVER portal

and Skill Zone. In the step by step instructions those parts of the DISCOVER Skills Zone that

were not yet fully adapted to meet the needs identified by the Dutch focus group were

explained.

50 carers and cared for people were recruited for Pilot Phase 2. Permission was given by

professional care organisations to address the formal carers working for them but this took

more time as these organisations are in the middle of a large scale national transition of

Health and Social services from the national level to the municipalities. The municipalities are

at the moment negotiating with the professional care providers about next year’s contracts.

5.3.4. UK

104 participants were recruited for Pilot Phase 2. Partners in the UK have recruited these

participants in a variety of ways – through the Birmingham City Council Citizen Panel, through

carer organisations, through attending public events related to care and caring, through

introductory workshops and through snowballing.

All participants received information sheets and signed consent forms to participate in the

project, and those attending workshop/focus groups agreed that the session could be audio

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recorded and photographs taken. Participants were invited to attend workshop/focus

groups, run by the OU and BIRM in various locations across the City to facilitate travel for the

carers, where they were guided through the DISCOVER Skills Zone and given their log-in user

names and passwords. Carers without email accounts were helped to set up google mail

accounts using the guidance provided. Some participants found it difficult to attend these

face to face sessions due to their work commitments and/or their caring responsibilities so

they were helped to access DISCOVER online directly.

There has been a lot of interest in DISCOVER from carers, carer organisations and care

agencies and the number of recruited participants does not really reflect the amount of work

and effort UK partners have given to recruitment. Over 500 prospective participants have

requested details of the project including the information sheets, log-ins and passwords but

when these enquiries were followed up many carers and stakeholders were unable to find

the time to participate or in some cases were no longer carers. However, it was pleasing to

note that even if these potential participants did not have time to join the project, many

were supportive of our aims and felt DISCOVER was filling a gap in carer support, and those

who explored the Skills Zone felt it was appropriate and interesting for carers.

Reaching cared-for people has been challenging. Although recruited carers are encouraged to

share DISCOVER with the people they care for, only a few carers report that they have tried

this. Of these some report they have encouraged the people they care for to look at

DISCOVER but they are not well enough or not interested at the moment. However, the

majority of carers see DISCOVER as their own space, giving them an interest that does not

involve the person they care for. They feel that caring generally takes over their lives and

they welcome an opportunity to do something different. It has been interesting to note that

carers feel being engaged in DISCOVER is a ‘legitimate’ use of their time which stops them

feeling guilty that they are spending time away from the person that they care for.

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6. User Methodology

Building on D2.1 User Methodology Handbook the OU prepared information sheets and

consent forms for the following 3 groups of participants: Formal and Informal Carers, and

Cared for people who are ‘buddy learning’ with their carer. These follow a similar format and

an example of this for ‘Carers’ is provided in Appendix 5.

The OU trialled these information sheets and consent forms with over 20 informal carers and

older people initially and the response was very good. The participants reported that they

found the information sheet helpful and informative and they were clear about their

involvement in the project. Carers also were pleased that the consent form asked for their

consent to various levels of engagement. In particular, some carers were happy to join the

project, and to be audio recorded, but were only willing to be photographed if they could not

be identified, for example they preferred to be viewed from behind, or with just their hands

on the PC keyboard, to demonstrate them working with the DISCOVER platform on the PC or

tablet.

Figure 1: A carer trying out DISCOVER on a tablet and a smart phone

The information sheets and consent forms were verified by pilot site partners and translated

into the pilot languages – Dutch, Greek and Spanish. They were used in all 4 pilot sites with

participants in Pilot Phase 1 and updated for use in Pilot Phase 2.

The signed and dated consent forms are hard copy so these are stored in locked cupboards in

the various pilot sites to which only project partners have access.

A code was developed to identify individual participants across the 4 pilot sites, while

maintaining their confidentiality and anonymity.

Each participant and the person they care for was given a unique code so that their progress

could be monitored across the duration of the project and matched with their learning

through the assessment tasks and computer generated feedback. This code is used by the

project partners but the participants themselves have an ‘easy to remember’ user name and

password. The coding sequence is described below.

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Each participant’s unique code reflects the phase of the project, their country and their role in the

project.

Carers

Code: PI[Pilot Phase 1]XX[Country]C[carer]XX[recruitment number]

e.g. P1NLC12

represents PI[Pilot Phase 1] NL[ the Netherlands]C[carer] 12 [recruitment number]

Cared for person

The cared-for person must be given the same recruitment number as their carer

e.g. If the cared for person is ‘buddy learning’, they would be given the code

P1NLOPL12

PI[Pilot Phase 1] NL[ the Netherlands]OP[older person] L [learning] 12 [recruitment number]

if the cared for person is ‘not buddy learning’, they would be given the code

P1NLOPN12

PI[Pilot Phase 1] NL[ the Netherlands]OP[older person] N [ not learning] 12 [recruitment number]

Figure 2: Unique coding for each participant

This was used by all pilot sites and proved very useful for data entry and analysis during Pilot

Phase 1.

The OU produced an excel spread sheet for partners to monitor participants involvement in

the project. This was divided into 2 sections

• Contact details about each participant, which is retained by the pilot partner

• Project details, which is sent to the OU at regular intervals

Figure 3: Excel spreadsheet for monitoring data collection

Three versions of the initial impact questionnaires to inform the baseline survey were also

developed, for formal carers, for informal carers, and for cared-for people participating in

DISCOVER.

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The questionnaires were trialled initially by 5 participants in the UK, two aged 18-29, two

aged 50-59 and an older person aged 80-89. They found the questionnaires easy to

understand and not too time consuming to complete, even by one participant who

completed the questionnaire via a phone link. In addition, they did not find them intrusive

and all participants provided answers to every question. Indeed several participants reported

that the project sounded ‘really interesting’ and they were ‘looking forward to working with

the project’.

Some suggestions were made to improve certain questions and these suggestions were

incorporated into the next versions. The questionnaires were verified by pilot site partners

and translated into the pilot languages – Dutch, Greek and Spanish. The questionnaires were

used during Pilot Phase 1, and then amended in response to feedback from participants

before being used for Pilot Phase 2.

In addition, guidance for running the Pilot Phase 2 training workshop/focus groups was

prepared by the OU to ensure consistency across the pilot sites (Appendix 8).

Figure 4: Carers and DISCOVER partners exploring the DISCOVER skills Zone

7. Baseline Survey

The base line survey was conducted through an initial questionnaire, given to all participants

when they joined the project. The tools were refined for Pilot Phase 2 in response to the

evaluation of the tools during Pilot Phase 1.

Data analysis was carried out using SPSS. In Pilot Phase 2, the significance of any differences

between responses from formal and informal carers, and by gender and country were

determined using chi-square tests for independence. The age profiles of the four countries

were compared using the Kruskal-wallis test for k independent samples. [In these tests, a

result of p=<0.05 means that the differences being seen are less than 5% likely to have

occurred by chance (or less than 1% likely in the case of P=<0.001) and therefore are likely to

be real differences, see also www.iwh.on.ca/wrmb/statistical-significance]

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7.1. Evaluation of the initial questionnaire during Pilot Phase 1

Most formal and informal carers across Greece, Spain and the UK pilot sites were happy to

complete the questionnaires. Carers were given the option to miss out any questions that

they did not wish to answer, and generally all questions were completed.

We had included some questions from the Eurlife and European Quality of life surveys, such

as income, profession, number of rooms in their home, as we were being encouraged at the

Negotiation meeting to position our carers within data already collected by the EU. However,

this section of the questionnaires proved problematic as some carers felt these questions

were redundant as they were not directly related to either their caring role or their digital

literacy. Some carers in the UK felt these questions were too personal and only answered

them reluctantly.

A minority of carers felt there were too many questions [Greece and Spain], resulting in a few

Greek carers declining to complete it.

We were interested to know if formal carers were also caring for a relative or friend in

addition to their paid caring role but this was not clear in the Spanish version of the formal

carer questionnaire. Similarly, in the Spanish version it was not always clear if they were

answering about themselves or the person they are caring for.

Carers in the Netherlands were reluctant to participate in the survey, primarily because they

did not feel it was of direct benefit to them. So in Pilot Phase 1 a shortened and very different

version was used but the response rate was very low (13%).

7.1.1. Recommendations for Pilot Phase 2

1. The section containing the EU questions to be re moved, this will considerably

shorten the questionnaires

2. Questions that have become ambiguous during translation to be clarified

3. Carers in the Netherlands to be encouraged to complete the questionnaires being

used in the other three pilot sites

7.2. Pilot Phase 2

Participants were asked to complete the initial evaluation questionnaires, either at the

training sessions/workshops and focus groups or at home. Participants were advised that

they could miss out any questions that they didn’t wish to answer. Most participants were

happy to answer all the questions posed; however, a small number only felt comfortable

completing the questionnaires if they did not disclose certain personal information.

232 questionnaires were completed by participants from Greece, Spain and the UK (informal

carers: n=166, formal carers: n=65, cared for people: n=1), a response rate of 77% percent.

Across the 4 pilot sites it has been noticeably easier to get participants to complete the

questionnaires during face to face introductory workshops than by asking them to complete

them at home. For example, in the UK 46 participants were sent questionnaires and a

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prepaid envelope in which to return the completed questionnaires but only 25% of them did

this, despite follow up emails and telephone calls.

Participants in the Netherlands are very protective of their privacy and many were reluctant

to answer questionnaires that they did not feel would directly benefit them. Those who were

willing to complete a questionnaire were unwilling to answer any questions they considered

personal. 31 questionnaires were completed by participants in the Netherlands (informal

carers: n=28, formal carers: n=2, cared for people: n=1), a response rate of 62%, but many

questions were omitted making some comparisons across pilot sites difficult.

The next section of this report includes the analysis of participants’ responses. Responses

were compared between formal and informal carers, and for informal carers by gender and

country. Responses for formal carers were compared by gender, but there were insufficient

data to make meaningful comparisons according to age and country.

8. Findings from Pilot phase 2

8.1. Demographics

The demographics of informal and formal carers were established to inform their responses

to their caring situation, their quality of life, their current and future use of technologies and

their attitudes towards computers.

8.1.1. Informal carers

This analysis revealed that most of the informal carers in the pilot are female (71%) and the

majority (69%) are over 50 (see Table 2).

The ages of the cared-for people range from under 18 to over 80, with the majority (81%) in

the over 70 age group. 43 percent of informal carers were caring for a partner or spouse,

which is higher than the percentages reported across the 4 countries (range 15-32%, see

Table 3). 55 percent of informal carers were caring for one or both parents, which is higher

than the percentages reported across the 4 countries (range: 33- 40%, see Table 3). Further

analysis revealed that 57% of participants caring for at least one parent are over 50 (43% are

between 50 and 64, and 14% are over 65).

36 percent of informal carers were caring for other relatives including children, siblings and

grandparents, which is comparable with the percentages reported nationally across the 4

countries (range: 39-49%, see Table 3).

9% of participants were caring for a friend or neighbour which is also comparable with the

percentages reported nationally across the 4 countries (mean 13%; range 9-19%, see Table

3).

Table 2: Demographics of informal carers in Pilot Phase 2

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Gender

[percentage of

participants]

Age [percentage

of participants]

Employment

[percentage of

participants]

Time spent

caring per week

[percentage of

participants]

Age of person

being cared for

[percentage of

participants]*

Female 71

18-29

5 Part-Time carer

and employed

28 Up to 12

hrs

32 Under 18

2

Male 28 30-49 26 Part-Time carer

no paid

employment

37 Up to 24

hours

11 18-29 6

Unknown 1 50-64 37 Full time carer 25 2 – 5 days 11 30-59 22

Over 65 32 unknown 10 Every day 40 60-69 18

Unknown 1 unknown 7 70-79 32

Over 80 49

*These figures total greater than 100% due to some participants caring for people in more than one age

range

Table 3: Percentage of informal carers per country: according to their relationship with the care recipients

Country Spouse/partner Parent Child and/or

Other relative

Friend/neighbour

Greece* 33.2 35.2 14.9 14.7

Spain* 28.0 39.9 20.6 10.9

The

Netherlands**

15 39 26 19

The UK*** 26 33 13 9

Source: * OECD 2011 The impact of caring on family carers p90; ** Social Cultural Planning Office

(SCP), presentation (10 November 2008); *** Health and Social Care Information Centre (NHS)

2010 Survey of Carers in Households 2009/10.

In addition, over 60% of the informal carers were not in paid employment. Although

unsurprisingly, fewer people over the age of retirement were employed, 43% of carers aged

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18-64 were full time carers or part time carers with no paid employment, showing that the

carers most interested in joining DISCOVER were people who had high caring responsibilities.

8.1.2. Formal carers

The majority of formal carers were female (75%) and aged between 30 and 49 (59%).

Most people being cared for by formal carers were over 60 years old, with the majority (74%)

in the oldest old category (over 80 years old). This was not unexpected as carers in the

Spanish and Greek pilot sites are caring primarily for people with dementia or memory loss,

and in the UK most social care is provided for older people [see Table 4].

An unexpected finding was that only 28% of formal carers are in paid employment full time.

The majority (57%) were employed as carers on a part-time basis and this was true across the

age range. A number of formal carers (6%) were also caring for family and friends in addition

to their paid caring role, but the actual figure may be higher as 50% of participants did not

answer this question.

Table 4: Demographics of formal carers in Pilot Phase 2

Gender

[percentage of

participants]

Age

[percentage of

participants]

Employment

[percentage of

participants]

Time spent

caring per

week

[percentage of

participants]

Age of people being cared-

for by paid carer

[percentage of

participants]*

Female 75 18-29

16

Part-Time paid

care worker

22

Up to 24

hrs

16 60-69 27

Male 18 30-49 59 Part-Time paid

care worker /part-

time paid

employment

16 2 – 5

days

57 70-79 37

unknown 7 Over 50 18 Part-Time paid

care worker /part-

time unpaid carer

19 Every

day

13 Over 80 74

unknown 7 Full-time paid

care worker

28 unknown 11 unknown 13

unknown 12

*These figures total greater than 100% due to some participants caring for people in more than one age

range

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8.2. Length of time as a carer

The length of time participants had been caring varied considerably from less than a year to

over 20 years.

Figure 5: Length of time participants have been in a caring role

16% of informal carers and 22% of formal carers had been caring for less than one year,

whereas most had been caring for between 1-10 years (64% of informal carers and 45% of

formal carers).

8.3. Learning Digital skills

Informal carers

Although 74 percent of the informal carers had access to a PC or laptop and 63 percent had

internet access, many of them reported they were not using it regularly as they had either

never really learned how to use it or had lost the skills they once had (only 47% of carers

were using their PC daily, and 28% were not spending anytime at all using a PC in an average

week). 31 percent of informal carers would like to get started with using technologies.

About 50 percent of informal carers were already using their PC for a variety of activities;

such as finding information (50%) writing letters (51%), emailing (51%), shopping/banking

(45%) and between 20 -30 percent would like to learn how to do these activities. Fewer

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carers were using social media such as SKYPE (35%), booking appointments (35%) or getting

repeat prescriptions (27%) online and fewer (18-22%) were interested in doing this.

There is considerable interest among informal carers to talk with other carers online: 20

percent already belong to an online carer community and a further 38 percent would like to

learn how to join an online carer network. Similarly, 33 percent already belong to societies

for the specific health conditions of the people they care for, such as Alzheimer’s Society or

Mind and a further 44 percent would like to learn how to do this.

Formal carers

77 percent of formal carers had access to a PC or a laptop and 88 percent had internet access

either through their home, work or the home of family or friends. However only 31 percent

used the internet for their care work, compared with 70 percent using it at home. 79 percent

of formal carers are using their PC daily.

Carers were already using their PC for a variety of activities; such as finding information and

emailing (75%), writing letters (41%), shopping (35%) and banking (28%). Given these figures

it was surprising to find 47% of formal carers would like to get started with using computers,

and between 38 - 40% would like to learn how to find information, email, write letters, shop

or carry out banking transactions online. Fewer formal carers were using social media such as

SKYPE (28%), booking appointments (10%) or getting repeat prescriptions (20%) online but

high numbers of carers (49-59%) are interested in doing this.

67 percent of carers would like to learn how to join an online network and only 18 percent

already belonged to an online carer community.

8.4. Attitudes towards computers

Formal carers were more likely than informal carers to feel that using computers can help

them to access information about goods, services and health conditions and were more likely

to be able to afford a broadband connection (see Table 5).

A higher percentage of formal carers (89%) compared with informal carers (51%) felt that

computers have the possibility to make their lives easier. However, despite informal carers

(36%) being more worried about using computers than formal carers (7%), they were more

likely (54%) than formal carers (34%) to feel that using computers will enable people to

spend more time with each other.

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Table 5: Attitudes towards computers

Statement

Percentage of carers

who strongly agree

or agree with the

statement

Percentage of carers

who disagree or

strongly disagree

with the statement

Informal

carers

Formal

carers

Informal

carers

Formal

carers

Computers are too difficult to use

I feel worried about computers**

Computers are useful

Computers are too expensive

Computers have the possibility to make my life

easier**

Using the internet will result in theft of my identity

and fraud

Computers can help people to have more time for

each other*

Using the internet will enable me to access

information**

I cannot afford a broadband connection**

*Significant differences between perspectives of

formal and informal carers **p=<0.001; * p=<0.05

17

36

70

44

51

17

56

56

35

13

7

90

37

89

16

34

95

13

50

34

7

22

17

30

17

20

38

63

58

2

23

3

42

26

0

60

8.5. Topics of interest to carers

Most formal and informal carers were interested in learning about the health condition of

the person they were caring for and enhancing their caring skills, which was surprising as we

had expected more formal carers to have learned about these conditions and skills from their

employers. In addition, more formal carers (73%) than informal carers (41%) wished to

improve their employability skills [see Table 6].

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Table 6: Interest in learning

Statement

Would you like to learn…

Carers who would

definitely or probably

like to learn- across a

range of specific

knowledge or skills

Carers who can do this

already or do not wish

to learn

Informal

carers

Formal

carers

Informal

carers

Formal

carers

About computer skills (e.g. email, skype, internet

banking

11-30% 39-60% 22-50% 21-35%

About health conditions (e.g. diabetes, heart disease,

stroke)

36 - 69% 79 - 92% 20 - 33% 2 - 7%

About caring skills ( e.g. caring for self, moving and

handling, nutrition)

55 - 69% 76 - 90% 12 – 26% 2 - 10%

About improving your employability skills 41% 73% 43% 23%

8.6. Quality of life of carers

Quality of life of carers was explored through their perceptions of their health, wellbeing and

work life balance, their attitudes towards society and their contact with non-resident family

and friends.

8.7. Health

88% of formal carers reported they were in very good or good health. However, 12% of

formal carers were living with a chronic health condition and 50% of them felt it affected

their daily activities to some extent or severely. In contrast, fewer informal carers (62%) felt

they were in good or very good health and a higher percentage of informal carers (41%) than

formal carers were living with a chronic health condition: all of whom felt it hampered their

daily living activities to some extent or severely.

8.8. Well-being

67 percent of formal carers and 64 percent of formal carers described wellbeing as ‘usually

feeling well’ with 13 percent and 20 percent respectively describing wellbeing as ‘being able

to continue with daily activities’.

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Table 7: Feelings of Well-being

Statement

Over the last two weeks…

Carers who felt this all

or most of the time

Carers who felt this

only some of the

time or never

Informal

carers

Formal

carers

Informal

carers

Formal

carers

I have felt cheerful and in good spirits**

I have felt calm and relaxed

I have felt active and vigorous

I woke up feeling fresh and rested**

My daily life has been filled with things that interest

me**

*Significant differences between perspectives of formal

and informal carers **p=<0.001; * p=<0.05

29%

26%

31%

18%

33%

55%

34%

55%

34%

60%

21%

19%

12%

22%

20%

10%

11%

8%

11%

5%

Generally formal carers have a greater sense of wellbeing than informal carers, who may find

it difficult to take time out from their caring responsibilities [Table 7]. For example, 71% of

informal carers felt worried when the person they care for was left at home by themselves.

Table 8: Feelings about society

To what extent to you agree or disagree with

the following statements?

Percentage of

participants who

strongly agree or

agree

Percentage of

participants who

disagree or strongly

disagree

Informal

carers

Formal

carers

Informal

carers

Formal

carers

I am optimistic about the future**

On the whole my life is close to how I would

like it to be**

I feel left out of society

I don’t feel the value of what I do is recognised

by others

Some people look down on me because of my

job situation or income**

*Significant differences between perspectives of

formal and informal carers **p=<0.001; * p=<0.05

39

17

8

13

27

79

48

10

16

13

18

42

48

45

31

7

16

96

60

69

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Formal carers are more likely than informal carers to feel that their life is close to how they

would like it to be and to be optimistic about the future. Almost 10 percent of informal and

formal carers reported feeling left out of society, and 13% and 16% of them respectively felt

their role was undervalued. It is of concern that over 10 percent of formal carers and nearly

30 percent of informal carers felt some people looked down on them because of their job or

income [Table 8].

Table 9: Feelings about work-life balance

How often has the following happened to

you during the last year?

Percentage of

participants reporting

this has happened

several times a

week/month

Percentage of

participants reporting

this has happened

several times a

year/less often

Informal

carers

Formal

carers

Informal

carers

Formal

carers

I have come home from work too tired to do

some of the household jobs which need to be

done

It has been difficult for me to fulfil my family

responsibilities because of the amount of

time I spend on the job

I have found it difficult to concentrate at work

because of my family responsibilities**

*Significant differences between perspectives of formal

and informal carers **p=<0.001; * p=<0.05

48

23

25

58

31

5

29

36

38

31

40

55

Informal carers find it more difficult to concentrate on their work than formal carers due to

their preoccupation with family responsibilities. On return from work, a high proportion of

informal carers with paid employment (48%) and formal carers (58%) feel too tired to do

some of their household jobs but the majority (over 69%) feel able to fulfil their family

responsibilities [Table 9].

8.9. Loneliness and isolation

As mentioned previously, almost 10 percent of formal and informal carers felt left out of

society. Although over 60 percent of informal carers had face to face contact with non-

resident family, friends and neighbours every day or most days, nearly 30 percent of informal

carers only saw their friends and family weekly and 10 percent of informal carers saw their

family and friends even less frequently [see Figure 6]. The situation was improved for

contact with family and friends via telephone, email, letter, Skype etc with only 15 percent of

informal carers having contact just once a week and only 5 percent of informal carers having

even less frequent phone, email or letter contact with family and friends. However, the trend

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was that generally carers who had less frequent face to face contact with family and friends

also had less contact by other means.

A higher percentage of formal carers (78%) than informal carers (60%) saw friends and family

daily or most days, which may reflect the fact that they are in employment and have work

colleagues as friends. However, 19 percent of formal carers only saw family and friends

weekly.

Figure 6: Frequency of contact with non-resident family and friends

8.10. Gender

As there were large discrepancies between the percentages of informal and formal male and

female carers, the effect of gender was explored and in the main no gender differences were

observed. The length of time both men and women had been carers ranged from less than 1

year to over 20 years and there were no significant differences between time spent caring

each week or the tasks they carried out for the people they cared for. However, male

informal carers were more likely than female informal carers to be in full time paid

employment [p<0.05, across range of levels of employment].

0

10

20

30

40

50

60

% of

participants

Frequency of visits/messages

informal carer visits

Informal carer

phone/email/letter

formal carer visits

formal carer

phone/email/letter

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Figure 7: Levels of employment of male and female informal carers

No gender differences were observed between either formal or informal male and female

carers regarding their views of their health, incidence of living with a chronic condition or

reporting that such a condition was hampering their daily activities. Also their attitudes to

society, their wellbeing and work-life balance were comparable.

Male and female formal and informal carers had similar attitudes towards using computers,

were equally likely to own a desktop / laptop PC, or a smart phone, and spent comparable

periods of time each week using computers for a similar range of activities.

Generally, they had similar levels of interest in developing their caring and computing skills,

however, female informal carers were more interested than male informal carers in learning

how to use internet communication tools such as Skype (women: 37%; men 25%), to join

carers associations (women: 53%; men 22%), and join associations related to specific health

conditions (women: 49%; men 28%). These differences may reflect that higher percentages

of male informal carers were already engaged in such activities compared with female

informal carers [see figure 8].

0

5

10

15

20

25

30

35

40

45

50

% of

participants

Levels of employment

male

female

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Figure 8: Informal carers social networking skills by gender

8.11. Country

Country related differences were only explored for informal carers as there were insufficient

data for formal carers to enable meaningful comparisons.

There were no significant differences between the numbers of men and women participating

from each country [ see figure 9]. However, the differences in the age ranges across the four

countries [p<0.05] and the levels of education were significant [p<0.001].

Higher percentages of carers in the UK and Spain were younger adults under 30 than in the

Netherlands and Greece. Higher percentages of informal carers in Greece, the Netherlands

and the UK were over 50 compared with Spain, indeed very few carers in the Netherlands

were under 50 [see figure 10].

0

10

20

30

40

50

60

% of

participants

male

female

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Figure 9: Gender of informal carers by country

Figure 10: Age of informal carers by country

Lower percentages of carers in Greece and Spain were educated beyond school education

compared with the Netherlands and the UK, and higher percentages of carers in the

Netherlands had university degrees than in the other three countries.

0

10

20

30

40

50

60

70

80

90

G NL S UK

% of

participantsmale

female

0.00

20.00

40.00

60.00

80.00

100.00

120.00

G NL S UK

Percentages of

participants

90-99

80-89

76-79

65-75

60-64

50-59

40-49

30-39

18-29

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Figure 11: Levels of education of informal carers by country

There were significant differences in informal carers’ levels of employment across the four

countries. Carers in Spain were more evenly distributed across the levels of employment

whereas most carers in the Netherlands and the UK were part-time carers with no

employment, and in Greece the majority were either part-time carers with no employment

or full time carers.

Figure 12: Informal carers’ levels of employment by country

In the main, informal carers in the four countries carried out similar caring tasks, such as

shopping, housework, personal care and assisting with finances, but there were significant

differences between countries in the percentages of carers helping with letter writing or

0

20

40

60

80

100

120

g nl s uk

% of

participants

Country

higher

further

primary/secondary

0

10

20

30

40

50

60

G NL S UK

% of

participants

Country

Part time carer in full-

time paid employement

Part time carer in part-

time paid employment

Part-time carer with no

paid employment

Full time carer

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medications. More informal carers in the Netherlands (29%) and the UK (34%) were assisting

the people they care for to write letters than carers in Greece (19%) and Spain (13%). In

contrast, 65 percent of carers in Greece and Spain and 55 percent of carers in the UK were

assisting with medications compared with only 26 percent of carers in the Netherlands.

Carers in the four countries were equally likely to own a PC, but Greek carers were less likely

to own a mobile phone. There were significant differences between countries in how carers

accessed the internet. Carers in Spain were less likely to access the internet at home and

more likely to use their mobile phones and in particular the public libraries, compared with

carers in Spain, the Netherlands and the UK (See Figure 13).

Figure 13: Informal carers’ ownership of computers/mobile phones and methods of accessing the internet

Figure 14: Attitudes to computers by country

0

50

100

150

200

250

300

350

own

computer

own

mobile

phone

internet

home

internet

phone

internet

library

Percentages of

participants

UK

S

NL

G

0

50

100

150

200

250

300

350

Percentages of

participantsUK

S

NL

G

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Attitudes to computers

Attitudes to computers were significantly different by country [p<0.05], however these

differences were due primarily to Spanish carers having different perspectives than carers in

Greece, the Netherlands and the UK. Spanish informal carers were more likely to think

computers were too expensive, to be worried about using computers and to feel using them

would result in identity theft and fraud. They were also less likely to think computers are

useful, can help make lives easier or enable you to find information. Despite these more

negative views, carers in Spain were more likely than Greek, Dutch or UK carers to feel

computers could help people have more time for each other.

Use of computers

There were significant differences between the countries in how carers were using their

Pcs/mobile phones and the internet [p<0.05]. Although carers in the four countries were

equally likely to be using telecommunication tools such as Skype, Spanish carers were less

likely to be emailing or finding information on the internet than carers in Greece, the

Netherlands or the UK. Surprisingly though, Spanish carers were as likely as Dutch and UK

carers to be booking appointments, ordering prescriptions, banking and shopping via the

internet, whereas Greek carers were less likely to be engaged in such activities.

Figure 15: Informal carers’ use of computers by country

There were no significant differences between countries in the percentages of carers wishing

to learn how to access information, write letters, book appointments or order prescriptions.

Generally, the differences between the percentages of carers in each country wishing to

learn specific skills was related to the percentages of carers already able to do the skill.

However, interest varied between skills in that more carers wanted to be able to email,

0

10

20

30

40

50

60

70

80

90

100

% of

participantsG

NL

S

UK

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online bank/shop or belong to associations related to specific health conditions than were

interested in belonging to carers’ associations.

Figure 16: Informal carers’ use and desired use of computers by country

Health and Wellbeing

Although fewer informal carers in the Netherlands (7%) and the UK (14%) reported being in

very good or good health compared with carers in Greece (23%) and Spain (25%), there were

no significant differences across the countries in carers’ perceptions of work-life balance.

Similarly, in the main carers’ feelings of wellbeing were comparable across the four countries,

except that fewer carers in Greece and the UK agreed or strongly agreed that they woke

feeling fresh and rested compared with carers in Spain and the Netherlands [p<0.05].

The most significant differences between carers in the four countries were their feelings

about society. There was a lot of dissatisfaction. Although over 60 percent of carers in the

Netherlands strongly agreed or agreed that their life was close to how they would like it, far

fewer carers strongly agreed or agreed with this statement in the UK (22%) and Greece (13%)

and none at all agreed in Spain. No carers in Greece or the Netherlands strongly agreed or

agreed that some people looked down on them compared with nearly 90 percent of carers in

Spain and nearly 20 percent of carers in the UK. Informal carers in the UK were less likely to

feel valued by society (40%) than carers in the other three countries. Compared with the

attitudes to society mentioned previously, fewer carers felt left out of society: ranging from 4

percent of Greek carers to 16 percent of UK carers. However, it should be noted that

although the overall percentages are low, there is a four-fold difference towards feeling left

out of society across the four countries.

0

50

100

150

200

250

300

percentages of

participants UK

S

NL

G

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Figure 17: Informal carers’ attitudes to society by country

8.12. Age

Although it is not meaningful to explore any effects of age between carers’ responses across

the four countries due to the large range in age, from 18-29 to over 90, resulting in few

participants in each age band, it is likely that age-related differences may account for some of

the findings.

We are mindful that chronological age is not necessarily a good indicator of cognitive ability,

manual dexterity, or interest in using technologies, indeed a valuable finding from this survey

is that older age is not deterring carers from being interested in joining DISCOVER.

Consequently do not want to use broad age bands that can mask the subtleties of age. More

research needs to be carried out to investigate these differences further.

9. Conclusions

9.1. Recruitment

Recruitment for Greece, Spain and the UK has been more challenging than we expected,

however, most of the difficulties experienced were common across all three sites:

• changing situations of some stakeholders resulting in them having to reduce their

support, or partners having to renegotiate a commitment to DISCOVER

• lack of support from stakeholders who had previously agreed to engage with Pilot

Phase 2,

• difficulties in maintaining active recruitment during holiday periods

There are also some local differences. For example, the Greek partners found it more

challenging to engage formal carers because they feel burdened by their work schedule.

0

10

20

30

40

50

60

70

80

90

100

life close to

how wish it

left out of

society

don't feel

valued

some people

look down on

me

% of

participants

G

NL

S

UK

of 61

Partners in Spain were recruiting carers across a large rural area, which can make it difficult

for participants to attend face-to face training sessions. In addition, some of these carers

have little or no family support and limited familiarity with computers, and in these cases

recruitment is even more difficult. In the UK, many carers felt overwhelmed by their caring

role and thus felt unable to commit to a sustained period of participation in the project.

Recruitment in the Netherlands was even more challenging than in the other 3 countries.

Setting up their ‘Leuk voor Elkaar’ groups took more time than expected, and the

requirements of their stakeholder focus group regarding the DISCOVER product took more

time to be implemented than planned, a combination of factors that resulted in a delay in

starting the recruitment of testers.

9.2. Base line Survey

9.2.1. Demographics

The baseline survey revealed that we are reaching carers across a range of ages, number of

years in a caring role, and differing caring situations. Indeed a valuable finding is that older

age is not deterring carers from wishing to join DISCOVER and engage with technologies.

Most of the informal and formal carers participating in the pilot were female, which reflects

the national statistics for the four countries. The project required carers participating in Pilot

Phase 2 to be caring for at least one person over the age of 65, and the survey revealed that

the majority of people being cared for by informal carers were over 70 years old, spanning

the age range from 70 to over 100. A high proportion of informal carers, many of whom

were over 50, were caring for one or both parents or caring for their spouses or partners.

Many carers were also looking after other relatives including children, siblings and

grandparents, and some were also looking after neighbours and friends.

Formal carers were primarily looking after people over 60 years old with the majority in the

oldest old age group (over 80). This was not unexpected as carers in the Spanish and Greek

pilot sites are caring primarily for people with dementia or memory loss, and in the UK most

social care is provided for older people.

Many informal carers were not in paid employment. Although unsurprisingly, fewer people

over the age of retirement were employed, many carers aged 18-64 were full time carers or

part time carers with no paid employment, showing that the carers most interested in joining

DISCOVER were people who had high caring responsibilities.

An unexpected finding was that only 28% of formal carers were in paid employment full time.

The majority were employed as carers on a part-time basis and this was true across the age

range. A number of formal carers were also caring for family and friends in addition to their

paid caring role.

9.2.2. Health

Informal carers tend to experience poorer quality of life than formal carers: ill health is more

likely to impact on their daily living activities. However, ill health is also challenging for some

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formal carers: just over 10 percent reported living with a chronic health condition and 50% of

them felt it affected their daily activities.

9.2.3. Wellbeing

Generally formal carers have a greater sense of wellbeing than informal carers, who may find

it difficult to take time out from their caring responsibilities.

Formal carers are more likely than informal carers to feel that their life is close to how they

would like it to be and to be optimistic about the future, which may reflect that caring is their

work role rather than a family commitment. However, almost 10 percent of informal and

formal carers reported feeling left out of society, and about 15 percent felt their role was

undervalued. It is of concern that over 10 percent of formal carers and nearly 30 percent of

informal carers felt some people looked down on them because of their job or income

Informal carers in paid employment find it more difficult to concentrate on their work than

formal carers due to their preoccupation with family responsibilities and on return from

work, about 50 percent of informal carers and nearly 60 percent of formal carers feel too

tired to do some of their household jobs. Despite this, nearly 70 percent of carers feel able

to fulfil their family responsibilities.

9.2.4. Loneliness and isolation

As mentioned previously, about 10 percent of formal and informal carers felt left out of

society. However, although the majority of informal carers are not socially isolated as nearly

60 percent have daily visits with non-resident friends and family, it is of concern that nearly

30 percent of informal carers only saw their friends and family weekly and 10 percent of

informal carers saw their family and friends even less frequently.

It is encouraging that more informal carers were in touch with family and friends via

telephone, email, letter, Skype etc as fewer carers (15%) reported only having contact once a

week and just 5 percent reported having less frequent contact with family and friends.

However, it is of concern that the trend was generally for carers who had less frequent visits

with family and friends to also have less contact by other means.

Nearly 80 percent of formal carers saw friends and family daily or most days, which may

reflect the fact that they are in employment and have work colleagues as friends. However,

almost 20 percent of formal carers only saw family and friends weekly. Further research

needs to be carried out to determine whether carers are content to see friends and family on

a weekly basis or whether this contributes to their feelings of being left out of society and

undervalued.

9.2.5. Learning digital skills

Informal carers

Although over 60 percent of informal carers had access to a PC or laptop and internet access,

many of them were not using it regularly as they had either never really learned how to use it

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or had lost the skills they once had. Just over 30 percent of informal carers would like to get

started with using technologies.

Only 50 percent of informal carers were already using their PC for a variety of activities; such

as finding information, writing letters, emailing, shopping/banking, and even fewer were

using social media, booking appointments or getting repeat prescriptions online. However,

there was considerable interest among informal carers in learning to carry out these activities

or to improve their ability to do so, hence their wish to join DISCOVER.

In addition, informal carers wanted to join DISCOVER to talk with other carers online, either

through online carer networks or associations, such as Alzheimer’s Society or Mind, for the

specific health conditions of the people they care for.

Formal carers

Although over 70 percent of formal carers had access to a PC or a laptop and internet access,

less than a third used the internet for their care work, which is a missed opportunity for both

the carers and the people they care for.

Many formal carers were using a PC for finding information and emailing, although fewer

were writing letters, shopping or banking. Given this, it was surprising to find almost 50

percent of formal carers would like to get started with using computers and almost 40

percent would like to learn how to find information, email, write letters, shop or carry out

banking transactions online. Far fewer formal carers were using social media, booking

appointments or ordering repeat prescriptions online but at least 50 percent of carers are

interested in doing this.

Again, there was considerable interest among formal carers in joining DISCOVER to talk with

other carers: 67 percent of carers would like to learn how to join an online network.

9.2.6. Topics of interest to carers

Most formal and informal carers were interested in learning about the health condition of

the person they were caring for and enhancing their caring skills, which was surprising as we

had expected more formal carers to have learned about these conditions and skills from their

employers. More formal carers than informal carers were interested in developing their

employability skills, which may reflect that a high proportion of informal carers were over 60.

9.2.7. Attitudes to computers

Generally formal carers had more positive attitudes towards computers than informal carers.

They were more likely than informal carers to feel that using computers can help to make

their lives easier and improve access to information. They also felt more able to afford a

broadband connection.

However, despite over 30 percent of informal carers being worried about using computers

compared with less than 10 percent of formal carers, informal carers were more likely (54%)

than formal carers (34%) to feel that using computers will enable people to spend more time

with each other.

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9.2.8. Gender

Generally, there were no differences between male and female formal or informal carers

with regards to their caring role, the number of years they had been caring, their quality of

life, their current and future use of computers or their attitudes towards computers.

There were two exceptions. Male informal carers were significantly more likely than female

informal carers to be in full time paid employment. Female informal carers were significantly

more interested than male informal carers in learning how to use internet communication

tools, join carers associations and join associations related to specific health conditions.

These differences may reflect that higher percentages of male informal carers were already

engaged in such activities compared with female informal carers.

9.2.9. Country

Country related differences regarding informal carers are complex. Similar percentages of

men and women participated from each country, but the age profiles and levels of education

were significantly different between each country. More informal carers in Spain were

younger adults under 30 than in the Netherlands and Greece, whereas the latter two

countries included more carers over 50 than Spain. The UK profile included both a

comparable percentage of younger adults with Spain but a higher proportion than in the

Netherlands and Greece, and a higher proportion of older adults than Spain but comparable

percentages with Greece and the Netherlands.

Lower percentages of carers in Greece and Spain were educated beyond school education

compared with the Netherlands and the UK and higher percentages of carers in the

Netherlands had university degrees than in the other three countries.

There were significant differences in participating informal carers’ levels of employment

across the four countries. Carers in Spain were more evenly distributed across the levels of

employment whereas most carers in the Netherlands and the UK were part-time carers with

no employment, and in Greece the majority were either part-time carers with no

employment or full time carers.

In the main, informal carers in the four countries carried out similar caring tasks. More

informal carers in the Netherlands and the UK were assisting the people they care for to

write letters than carers in Greece and Spain, whereas more carers in Greece, Spain and the

UK were assisting with medications compared with carers in the Netherlands. These

differences may partly reflect the health conditions of the people they care for as carers in

Spain and Greece are caring primarily for people with dementia, memory loss or long term

mental health issues, whereas carers in the Netherlands and the UK are caring for people

with a broad range of health conditions.

Fewer informal carers in the Netherlands and the UK felt in good health compared with

carers in Greece and Spain but this did not appear to unduly influence their perceptions of

work-life balance or wellbeing, as fewer carers in Greece and the UK felt they woke feeling

fresh and rested compared with carers in Spain and the Netherlands.

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There was a lot of dissatisfaction in informal carers’ attitudes to society across the four

countries. Carers in the Netherlands reported the highest levels of satisfaction, mainly feeling

valued by society and that their life was close to how they would like it and few felt that

some people looked down on them due to their income or caring role. Although carers in

Greece mainly felt valued by society and none felt that anyone looked down on them due to

their income or caring role, barely 10 percent felt that their life was close to how they would

like it. Carers in the UK felt less valued by society, were more likely to feel some people

looked down on them and barely 20 percent felt their life was how they would like it. But the

most dissatisfied carers lived in Spain. Although Spanish carers mainly felt valued by society,

nearly 90 percent felt people looked down on them and none felt their life was close to how

they would like it. Compared with the attitudes to society mentioned previously, fewer carers

felt left out of society, but although the overall percentages are low, there is a four-fold

difference towards feeling left out of society across the four countries.

Spanish informal carers also had different attitudes towards computers than carers in

Greece, the Netherlands and the UK. Although there were no differences in the percentages

of carers owning computers across the four countries, Spanish carers were more likely to feel

that computers were too expensive, to be worried about using computers and to feel using

them would result in identity theft and fraud. They were also less likely to think computers

are useful, can help make lives easier or enable you to find information. Despite these more

negative views, carers in Spain were more likely than Greek, Dutch or UK carers to feel

computers could help people have more time for each other.

There are differences in infrastructure across the four countries in that it is difficult for rural

carers in Spain to access the internet through their PC as few have broadband. Instead they

primarily access the internet through their mobile phones or through public libraries. In

contrast, few carers in Greece own mobile phones so those who have a PC are more likely to

access the internet from home. Few carers in Greece, the Netherlands or the UK access the

internet via their public libraries, even though not all of them own a PC.

There were significant differences between the countries in how carers were using their

Pcs/mobile phones and the internet. Although carers in the four countries were equally likely

to be using telecommunication tools such as Skype, Spanish carers were less likely to be

emailing or finding information on the internet than carers in Greece, the Netherlands or the

UK. Surprisingly though, Spanish carers were as likely as Dutch and UK carers to be booking

appointments, ordering prescriptions, banking and shopping via the internet, whereas Greek

carers were less likely to be engaged in such activities. At a recent EU summit, it was

reported that electronic prescriptions were available across all of Spain, which may

contribute to their higher level of use.

The findings from this base line survey will enable us to explore the impact of the caring

situation on participants’ motivation, choice of learning content and ability to learn through

DISCOVER. The great advantage of eLearning over face to face learning is that it is not

limited by time, space or distance and we aim to explore how intensity of care affects

learning.

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10. Appendices

Appendix 1 Birmingham City Council Ethics approval

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Appendix 2 Open University Ethics approval

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Appendix 3 University of Thessaloniki Ethics approval

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Appendix 4 INTRAS Ethics approval

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Appendix 5 Participant Information Sheet

Purpose of the study

Due to an increasingly ageing population, there is an increasing demand for quality care

across Europe. However, public services are unlikely to meet all of this demand, resulting in

family members being expected to take on more and more care tasks and make more

demands on stretched professional health care workers. Currently, over a 100 million people

in Europe care for a family member, partner, relative or friend and this figure is expected to

rise sharply.

This pan-European project, based in Greece, Spain, the Netherlands and the UK, is focused

upon improving the quality of life of carers and the older people they care for through digital

technologies, such as computers and mobile phones, ultimately helping to reduce their social

isolation.

DISCOVER will enable carers to access the information they need, when they need it and

foster a shared learning environment for communities of carers to share experiences,

knowledge, challenges and questions.

DISCOVER aims to

• to improve carers’ skills in using computers and other technologies to help them to

find information, write letters, acquire new knowledge and skills, and meet other

carers

• enable carers to pass on these skills to the older people they care for

• provide opportunities for both carers and older people to learn these skills together.

Procedures

We feel that is important that carers are involved in the development of the learning

materials that we are producing for this project. The content of the materials is being guided

by carers, who have already told us what they need to develop or enhance their computing,

caring, care management and employability skills. We would like you to try out and

comment on our prototype materials either as part of a focus group or in your own home or

another venue of your choice. Your comments will be used to help us improve the materials

before they are translated and shared with other carers in our project who live in Greece,

Spain and The Netherlands.

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We are looking for carers aged 18plus (there is no upper age limit) to trial our prototype

materials and website. We welcome feedback from carers who have not used a computer

before through to those of you who are very proficient as we want our project to reach all

carers.

When we meet to try out the materials we will fully explain the process to you. We want you

to work through one part of the bite-sized materials at your own pace as though you were at

home, in a library or a carers’ centre. We anticipate the session will last between an hour to

one and a half hours. We will be video-recording the session to help us to improve the

materials. After the session we will discuss the session with you to gain your feedback about

the materials and participating in this way. Notes will be taken during this discussion and

discussion will be tape-recorded. [If you prefer not to be video-recorded we can talk to you

instead so your participation is still really valuable].

Then we would like you to pilot these learning materials and the website until the end of

December 2013. This will give you access to a range of materials that have been developed

in consultation with other carers. It will also give you access to a carers’ network, where you

can met carers in similar situations to yourself, and other information that may help you in

your caring role. We would like you to access the website regularly, preferably at least once a

week at home or a venue of your choice where you have access to a computer, and try out

the materials and other activities available. To help us to evaluate the project we would like

you to complete two questionnaires, one at the beginning of the project and one when the

project concludes. The initial questionnaire will ask for some details about you and your

caring role and your current use of digital technologies. The concluding questionnaire will

focus on the skills and knowledge you have acquired and how participating in the project has

impacted on your caring role. You will be able to complete these questionnaires either online

or by paper copy, whichever you prefer. We will also seek consent from the person you care-

for for you to include a few details about them in the questionnaires, such as their age group

and illness, but neither you nor the person you care for will be identifiable.

In addition, we are looking for a number of carers and the people they care-for who are

willing to be interviewed about the project. There will be two interviews, one at the

beginning of the project and one when the project concludes. During the initial interview

you will be asked about your experiences as a carer, your use of digital technologies and your

views about the value of digital technologies in assisting you in your caring role or for future

employment. During the concluding interview you will be asked about your experiences in

participating in the project. The discussions will be tape-recorded and securely stored on a

password-protected computer. You will be able to leave the interviews at any point. You will

be able to choose whether you and the person you care-for would like to be interviewed

together or separately, and you can select to be interviewed either in a carers’ centre, a

library, your own home or another venue of your choosing.

With your permission, we may take photographs and video recordings and use them in

presentations, journal articles and media including the project website.

Potential Benefits

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Taking part in the project may not benefit you directly. However, what you say will inform

the development of appropriate learning materials, which will be trialled by other carers who

agree to participate in the main phase of the project.

Potential Risks

There are no particular risks associated with this project. However if you do not wish to

answer any questions on the questionnaires or posed during the interviews, or be

photographed or videoed you can say so. You can withdraw from the project at any point

(please see Right to Withdraw below).

Storage of Data

Questionnaire and interview information, including photographs and video recordings, will

be stored securely on a computer that is password protected. Only partners will be able to

access the computer and the information will not be discussed with anybody outside the

project partnership. Your name will not be on any of the information, therefore you will

remain anonymous. Consent forms will be stored separately from the questionnaire and

interview information. Paper copies will be kept in a locked cabinet.

Your name will not appear in any written report and any direct quotations that may be used

in reporting the results of the project will be presented in a way that you won’t be identified.

Right to Withdraw

Your participation is voluntary and you may withdraw from the project at any point for any

reason. If you withdraw following the initial questionnaire (and interview if you choose to be

interviewed) we will ask you to complete the concluding questionnaire

(and participate in a concluding interview) but you are free to decline. In addition you may

request that any data you have contributed is destroyed.

Questions

If you have any questions concerning the project please feel free to contact [insert contact

name] at any point. If at any point you wish to discuss any aspects of the project with

somebody other than [insert contact name] you can contact the following person: [insert

second contact name]

The above person can also be contacted in writing via the address at the bottom of this

information sheet.

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The study has been approved on ethical grounds by the [insert your countries ethics

committees as appropriate].

If you would like a copy of the results of the study please contact [insert contact name].

[insert contact name]

Email: [insert contact email address]

Tel: [insert contact telephone number]

[insert contact address]

Email: [insert second contact email address]

Tel: [insert second contact telephone number]

[insert second contact address]

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Participant Consent Form

I confirm that I have read and understand the information sheet for the above

project. I have had the opportunity to consider the information and ask

questions, and I have had these answered satisfactorily.

I understand that my participation is voluntary and that I am free to withdraw at

any time without giving any reason, without my care or legal rights being

affected.

I understand the conditions under which personal information collected in this

project will be confidential, anonymous and protected.

I give permission for information, including the use of quotations, collected via

questionnaires, audio or video recordings, to be used in any presentation of

the findings with the understanding that my anonymity will be assured, unless I

waive my anonymity in writing.

I give permission for any photographs and video recordings taken during the

project to be used in any presentation of the project, including the project

website.

I agree to take part in the above project.

I am willing/not willing (please delete one) to be interviewed.

I agree/ do not agree (please delete one) for any video recordings to be placed

on social media sites such as YouTube.

-------------------------------------- ----------------- ---------

Name of participant Date Signature

------------------------------------ ----------------- ---------

------------------

Name of person taking consent

Please initial box

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Appendix 6 User engagement in iterative design: the Netherlands

Remarks and recommendations from users

Assessments

All assessments must be separated from exercises. They only will be accesses on the first page

of the Learning Zone for all subjects, if needed.

No need for a ‘teacher’, put someone here as ‘contact person. No need for ‘results’. No need for

everything that refers to ‘courses’. Code of conduct is in English.

Login screen

First screen of the LZ is the inlog screen. Is it

possible to make the login button bigger en

obvious? ‘Guest inlog’ must be hidden.

Now you have to choose your language. It is

more user-friendly when the default is Dutch.

Second screen

Text in header ‘Vaardigheden Niveau’ must be translated by “ Kennisbank”.

‘No text, only 2 buttons: “Gebruik van Web” and “Verbeter zorgvaardigheden” and Flash and

Silverlight to be clicked, without explanation.

All text needed to explain things under ‘Uitleg’

button on every page. The “Help function`

needs to be context sensitive, so that users

find direct what they are looking for.

Translation: ‘Verbeter Zorgvaardigheden’ =

‘Kennis over zorg’

Remove “enquête”, “nieuw”, “locale diensten”,

“kaart” and ‘nieuw’ should be on the Portal page. Remove also “contact met anderen” (already on

Portal page) and “vaardigheden tellen” (no need).

‘Gebruik Web’ page (and all other subjects):

First page not needed, explanation under ‘Uitleg’ on

next page.

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It must be able to click straight to the topics: ‘Onderwerp keuze’

‘Digitale vaardigheden’:

No text (under ‘Uitleg’), only the 8 buttons.

‘Toetsenbord vaardigheden’ ‘Beginner’ and all other subjects here:

Startpagina of this subject is not needed, explanation

under ‘Uitleg’ on next page.

Straight to the websites (are all in English yet!)

Return to LZ from Scoop.it pages.

People did not understand how to go back to the Learning zone (by using tab arrows in browser).

A better solution is to show Scoop.it pages in a window in our own LZ portal. So navigation can be

consistent.

Verbeter Zorg vaardigheden button on second page:

Second page can remain as it is

‘Risk of Falls’:

Remove first page! In English, with passwords and such. Please go directly to next page VCC

Service:

Did not work during demonstration!! And since on and off…

If working: the menu around the picture is all in English, disclaimer is in English, narrative not

needed (is absent in Dutch), Text Diana in such a way that scrolling is not needed.

Most options in menu are not needed, possibly the whole menu is not needed, it seems.

How to leave VCC and go back to Learning Zone?? (again through tabs arrows in browser).

HdG 29 March 2014

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Appendix 7 Invitation letter for carers

Dear Carer

Have you ever wished you could use a computer or make better use of the one you have?

Do you want to learn more about caring for your relative or friend but haven’t much time?

Do you wish someone could help you to use the internet better or tell you more about it?

Would you like to be part of a European Project that can benefit carers like yourself?

We are looking for carers to participate in a European project which aims to help you to

make the most of your computers, the internet and other technologies or to learn how to use

computers if you are unfamiliar with them. We also aim to give you opportunities to develop

your caring and employability skills, to help you to find services in your locality and to enable

you to talk to other carers if you wish to do so.

Please find enclosed an Information sheet, which explains what the project will involve.

If you require any further information please do not hesitate to contact me on either of the

telephone numbers or email address above.

Thank you for your interest and help with this study.

Yours sincerely, Verina Waights

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Appendix 8 Programme Overview for Introductory Workshop

Item Owner

Recruitment Session, face to face, held by pilot staff or carer support

organisation

Pilot staff

Explain purpose of the session

Explain that DISCOVER is a European project, which requires research consent

from the participants. Get all attendees to sign consent form to permit audio

recording and anonymous quotes; establish if persons present are willing to be

identified in any publication.

Hand out consent form for signing, info sheets, invitation

Collect contact details email/phone/postal address for sending info

Ask participants to introduce themselves, find out who they care for. Find out

what access they have (at home / elsewhere, what technology)

Present discover4carers.eu – showing sections carers, services (get links to

organisations up),

Present learning zone, showing selected learning content that makes sense in

10-15min for example:

Accessing web based quality info – guided / open learning

Guided learning – topic basic digital skills

Follow instructions, got to website BBC webwise, try a few of the activities

Launch quiz, ask participants to answer the questions related to the activities

Demonstrate VCC – show a couple of items and the connected hints and tips,

explain how it works ( progress bar)

Any other questions?

Agree next steps e.g.

We will send you the login by email by date XX

We would like you to access the LZ on your own and do the following tasks (how

much work / time does this involve)

We’d like to organise a follow up session in e.g. 2 month time to ask for your

feedback

If you’d like to talk to us in the meantime, contact details are on the info sheet

baseline survey : pilot phase...

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