LLP Grundtvig Partnership 2013-1-RO1-GRU06-29473 1

M-CARE.project description 2013-2015 a Grundtvig learning partnership project

Project summary

The project basic premise is that mutual caring understanding and transfer (routines and ways of coping developed by families through both the caring person and affected person are looking after each other) can provide the basis for an innovative learning approach, in which "mutual care" and "interdependency" should underlie educational topics on disability issues.

The main objective of this project is to understand/define, develop and promote good practices in supporting families to plan for a future where a person with chronically ill/disabilities is providing care to their elderly carers through the concept of mutual caring.

The introduction and practical application of these new concepts (but universally applicable) into care process can lead to innovative strategies that are sustainable and cost neutral.

We'll identify, collect, share and exchange best knowledge and practices in which each partner has experience regarding mutualistic relationships; we'll create a website to offer free resources to carers, patients/people with disabilities and care professionals on how to cope their common problems; we'll provide expertise and support to authorities to build up evidence of how to develop a coordinated response for supporting people who are providing mutual care.

The project is based on participants-led objectives, starts with efficient organization for preparatory work (research by case studies, demands/needs analyze), continues with project activities (meetings/workshops/ seminars conceptualized for each target group), develops project outputs (workshops, know how transfer, M-CARE website/handbooks), reverberates in all partners joined-up strategy for dissemination of project new concepts and findings, every participant becoming a project multiplier.

Rationale

1. PREMISES

The concept behind the MUTUAL CARE APPROACH focuses on the interpersonal care-dependent person or carer-patient dynamics where there is a mutual exchange of care between the carer and care recipient, in contrast to the conventional approach to carer-care recipient relationships where care is provided by the carer to the cared person.

The PROJECT BASIC PREMISE is that MUTUAL CARING KNOWLEDGE AND TRANSFER (routines and ways of coping developed by families through both the caring person and the affected person are looking after each other) can provide the basis for an innovative learning approach in a joined up work between those in need and disability/social/healthcare services, and for development of the capacity of local/national authorities to respond to the needs of these groups of people.

2. DILEMMAS OF CARE PROCESS

There is an abundance of projects and initiatives that target persons with disability and their carers. However challenges and barriers still exist. We have identified some impediments to effective knowledge, care services, education and real inclusion:

A. Most of these initiatives are still constructed, largely subconsciously, within the framework of the dominant world views and paradigms; thereby - to some extent - perpetuating of these ways of being and doing must to be changed. For too long our tendency has been to study and measure problems and to take curative action, instead of examining the underlying causes, imagining how they can be avoided and embarking on the necessary integrated programs of personal and political change.

B. Neither 'CARE' nor 'DEPENDENCY' have simple, uncontested meanings. Both refer to a range of social phenomena that involve diverse characteristics that extend from physical activities, through the social relationships among individuals and groups, to the mental states or dispositions involved in caring about someone or being dependent. Research and theoretical critiques have suggested that 'CARE' does not denote a narrow set of activities or tasks, undertaken without the active engagement of the supposed beneficiary. Instead, 'CARE' is a complex concept that (with the exception of forms of self-care) cannot be undertaken by one person alone; it is a daily reality, a set of practices and ways of going about support. Recent studies of care suggest that qualities of reciprocal dependence underlie much of what is termed 'care'. Rather than being a unidirectional activity in which an active care-giver does something to a passive and dependent recipient, these accounts suggest that 'care' is best understood as the product or outcome of the relationship between two or more people.

C. The concept of 'DEPENDENCY' too often connotes negative 'burdens' and deficiencies on the part of the person needing help, and we argued that the voices of those needing help must be heard as clearly as those who provide it. The 'individualizing and excluding' language of dependency should be replaced by a recognition of the basic social condition of 'INTERDEPENDENCE' and caring solidarity. Recognition of the increased risks of dependence in advanced old age, and of the need for care of those who are dependent, must involve an acknowledgment of HUMAN INTERDEPENDENCIES. Such a concept is not an assertion of interdependency as an alternative nor a negation of dependency, but rather one based on the recognition of 'NESTED-DEPENDENCIES' that link those who need support with those who help them and which, in turn, link the helpers to a set of broader supports.

D. The person with first-hand experience will know that care relationships are often MUTUAL, that most people are involved in both receiving and providing care, although perhaps in very different ways. 'MUTUAL CARING' means caring for someone who also cares for you. Mutual caring is common in elderly couples, but can also occur if an elderly parent has a son or daughter with a disability or an older person with health needs cares for a disabled grandchild.

3. CARER'S NEEDS

More people are living longer than ever before, including people with various disabilities. An increasing number of people with disabilities are still living at home with family carers who are aged 70 or older. The Carers may be parents/siblings/grandparents/close relatives or friends. They have often spent a lifetime care and assistance in a regular and sustained manner without payment, to a person who is frail and/or aged, disabled/chronically ill. Carers are at risk of financial, health and social burden, not only when caring, but when caring comes to an end because significant barriers to reengaging with society. Many do not recognize the skills they have gained through caring.

From our experience of work with caregivers, we found the next priorities for them:

- Carers to be recognized respected and valued

- Hidden carers to be identified and supported

- Services for carers and the people they care for to be improved

- Carers to be supported to combine caring and education or work

4. CARED PERSONS' NEEDS

Over time, because the years go, the family carers start needing more support themselves, and families develop routines and ways of coping, that mean that both the older person and the person with disabilities, whether mental or physical, are looking after each other. Often the cared persons are providing regular care for their ageing relatives (shopping, cleaning, cooking, accompanying each other on days out, providing emotional support). Therefore, without each other's support, neither person would be able to remain living independently within their local community. Thus they reach to meet the above mentioned 'nested-dependencies' that characterize 'exchange-based reciprocity', which is the basis of mutual care.

But even though the mutual caring among families is increasing, often remains hidden. Some of the main dissatisfactions for people with disabilities which are turn into caregivers include:

- not being recognized for their role as a carer

- many do not recognize the skills they have gained through caring

- not being offered many choices about how support is provided or continuing to care

- lack of information that is accessible and easy to understand about rights as a carer, available support health conditions of their elderly relative

- lack of practical support and benefit advice that could make a big difference with shopping, getting to appointments

- isolation and reduced opportunities for breaks from caring and friendship

- fear of being separated if social workers discover the extent of the mutual caring that is happening

These are issues for many carers but are often more of a struggle for persons with disabilities. And when they surmount, they want to feel proud of helping out and returning the care and support that has been provided to them by their parents for so many years.

5. EDUCATIONAL NEEDS

- Redefining the terms 'care' and 'dependency' into 'mutual care' and 'interdependency' is not only an appealing linguistic solution to the difficult dilemmas we have considered, but should underlie educational approaches on disability issues

- Extrapolating, MUTUALITY (simultaneously recognizing similarities in one another's experiences, thinking and feeling/being willing to share them openly, experiencing connectedness, communion and a sense of 'we) could redesign educational systems to enable learning and transformation, rather than by imposing the learning agendas of others

- By recognition that families and unpaid carers constitute the largest care force, they should be considered as key partners and providers not only in the planning/design/delivery of care, but also in professionals' education.

- Professional training for all health and social care staff should include a substantial component which relates to unpaid carers as partners in care, carers' needs and the diversity of the unpaid caring experience; that training should contain carer modules and input from carers and service users.

- Carers and care receivers should be able to access education and training as and when required to support their caring task and help them develop their own skills, knowledge and expertise; these must be maintained and easily accessible to all.

WHY THIS PROJECT

All reasons mentioned above give us the motivation to create this Learning Partnership involving the exchange of knowledge, information, staff and learners across Europe.

This Learning Partnership is focused on motivation and demand, on participants' needs analysis, setting objectives which are participant-led.

This Partnership introduces new concepts, but universally applicable, which can lead to innovative strategies that are sustainable and cost neutral.

Through the development of mutualistic relationships in education and healthcare services our ability to share life/ or learned experiences will increase, for a better collaboration in envisioning and creating a more humane and integrated society.

Project Aims

OBJECTIVES are to:

- understand/define, develop and promote good practices in supporting families to plan for a future where a person with chronically ill/disabilities is providing care to their elderly carers through the concept of 'mutual caring'; by this work we'll advocate to redefine the terms 'care' and 'dependency' into 'mutual care' and 'interdependency'

- introduce new concepts/approaches of 'mutuality and resonance', 'collaborative care', 'mutual approach' as the cornerstone in facilitating education, health/social care programs

- identify, collect, share and exchange best knowledge and practices in which each partner has experience regarding mutualistic relationships

- create M-CARE website to offer free resources to carers, patients/people with disabilities and care professionals on how to cope their common problems

- to be a learning experience that will improve our intercultural competencies, learning/training opportunities in EU member countries and organizations

- contribute to EU priorities: access to e-learning opportunities for people with disability, health, lifelong learning even for our elderly learners

TARGET GROUPS

People with special needs/disabilities and their carers, healthcare/social workers, teachers, sociologists, psychologists, volunteers

PROBLEMS TO BE SOLVED:

The general need of knowledge that 'mutual care' and 'interdependency' should underlie educational approaches on disability issues, and to establish that cared/carer needs/perspectives play a pivotal role in educational/research/health programs or social inclusion.

HOW:

- by efficient organization for preparatory work (research by case studies, demands/needs analyze), project activities (meetings/workshops/seminars conceptualized for each target group), project outputs (educational/health/social needs analyze for policy recommendations, learning materials, M-CARE printed/on-line handbooks on medical/psychological/nursing issues and accessing services for carers/cared people)

- through participation of all target groups in project activities (planning, meetings, workshops, mobilities), continuous cooperation and evaluation (questionnaires, reports, permanently feedback)

- by dissemination/exploitation: all partners will assume a joined-up strategy for the collection of evidence and dissemination of project new concepts and results, using their findings for recommendations in their institutions and other organization, to decision-makers, every participant becoming a project multiplier.