Grundtvig Learning Partnerships
2011-1-RO1-GRU06-14989 1

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Description

NMD-PRO project description
2011-2013
a Grundtvig learning partnership project
Project summary

The Partnership aims to be a support and information group which operates for parents, patients, and staff who work with children/adults disabled by neuromuscular diseases (NMDs). The project basic premise is that participant learners can be productively involved in formulating agendas for health/social/educational policies based on their own needs and experiences. The primary objective of this project is to raise and train educative/social/health knowledge and competencies for affected parents or NMD adult patients and transfer these competencies from them to caregivers, for all become a kind of education providers: ‘NMD professional parents and patients’. Therefore this project will introduce an innovative approach in which teachers/learners are both people with personal experience of NMD and care/education specialists. Other aims are: to share/exchange best practices and activities in which each partner has experience on social inclusion of NMD disabled; to introduce the concepts of ‘family-centered care’, ‘multidisciplinary team care’, ‘parent-to-parent approach’ and their fundamental role in facilitating education, health, social programs; to create a website to offer free educational resources.

The project will start with participants’s needs analysis, setting objectives which are participant-led and expression of demand; will analyze/compare related materials and activities on their regional/national level, exchange their know-how and produce the Guidebook for NMD professional parent/patient. All partners will use and adapt the findings, good practices, recommendations in their institutions, providing opportunities for distributing/transfer to community, decision-makers, other organizations, acting to develop for its learners a sense of European citizenship.

Rationale
PROBLEM STATEMENT
  • 1. Neuromuscular diseases are a group of disorders that affect any part of the nerve and muscle. Neuromuscular diseases – NMDs – are chronic and so far incurable conditions that gradually affect patients’ muscles, leading to potentially severe disabilities. Genetic and acquired neuromuscular diseases represent a major cause of mortality and morbidity in children and adults with a prevalence of more than 5% in the general population. Examples of neuromuscular disorders include: amyotrophic lateral sclerosis (ALS), multiple sclerosis, muscular dystrophies (Duchenne muscular dystrophy DMD), myopathies, myasthenia gravis, and spinal muscular atrophy. Gradually, NMD sufferers lose mobility. This decline can be more or less severe and more or less slow, depending on the patient and on the disorder. Some NMDs are very rare, while others are more widespread. The WHO Global Burden of Disease report pointed out that the burden of mental and neurological disorders has been seriously underestimated by traditional epidemiological methods that took into account mortality, but not disability, rates (http://www.who.int/mental_health/neurology/en/). While mental and neurological disorders are responsible for only about 1% of deaths, they account for almost 11% of disease burden worldwide, suggesting that the burden of neuromuscular disorders is seriously underestimated.
  • 2. Patients and parents of NMD diagnosed children often describe their long experience in what the sanitary system should provide (and it not provide), with what parents meet to cope with this reality, and the critical importance of inclusion as their children grow up. Moreover, in some European countries are not implemented yet, the Care Standards for NMDs, and still are problems regarding social inclusion and accessibility for disabled people (public transport, general public services, restaurants & hotels, universities & schools, working places, sport events and cultural events).
PROJECT PREMISE

We have premised that participant learners (parents, patients, teachers, health care and social workers) can be productively involved in formulating agendas for health/social/educational policy and quality based on their own needs and experiences. To produce such statements this Partnership is not only a learning experience in itself, but a basis for negotiation with providers. Through this Project we’ll develop and disseminate this principle.

MOTIVATION AND NEED FOR THIS PROJECT

This Learning Partnership focus on demand and motivation by starting with participants’s needs analysis and setting objectives which are participant-led and promote the expression of demand. We have also incorporated the needs analysis into project design, relating to the interests not only of all partners, but of a wider range of players (including other providers) and ultimate beneficiaries in terms of target groups and communities.

  • 1. FAMILY’S NEEDS
    When an infant or young child is diagnosed with a disability, the family’s lives are changed forever. Neuromuscular diseases (NMD) and the consequent disability affect the whole family and can create severe physical, emotional, social and financial strains. Parents and families have to adjust to a life different than they imagined. The ability of the family to meet these challenges is determined, in large part, by the support that is available from other immediate family members, grandparents, relatives or friends. We believe that sharing knowledge, problems and solutions with health care professionals, teachers, social workers and other parents in similar situations, by promoting the “parent-to-parent approach”, can help make life easier. By coming together as a group throughout Europe we’ll be able to talk to each other, share our experiences and advice, and the experiences and knowledge of others.
  • 2. EDUCATIONAL NEEDS
    Advocacy organizations report variable and inconsistent social and health care for individuals with NMD or DMD. Practitioners will need more information about basic genetics, genetic counseling, supports and therapies for particular disorders, as families will be searching for this kind of information. This knowledge no longer belongs solely to the professionals. The parents and patients may know more than most professionals about their child’s specific genetic disorder. We must see their role to be that of educating service providers about what they have learned. In effect, they are ”citizen scientist” who share authoritative knowledge with service providers and expect to be partners in decisions affecting their children. The new role of parents, patients and practitioners as ”learning advisers” (and the skills needed to fulfil this) will be promoted through this Project. This role may be a crucial means of support to enable those who are excluded to reengage in learning. Learning advisers can also play an important part as advocates and comprehensive education suppliers.
  • 3. CARE NEEDS
    Although specific treatments for neuromuscular diseases (NMD) or DMD have not yet reached, the natural history of the disease and life quality can be changed by the targeting of interventions to known manifestations, complications, therapies, social and physical rehabilitation. To reach these objectives it is necessary a multidisciplinary approach to caring for patients with NMD in which patient and family should actively engage with the medical professionals who coordinate clinical care. It is a crucial need to create the ”multidisciplinary team care” consisting of educational, social and healthcare specialists that includes the parents and patients which have to develop the individualized education, rehabilitation and health care programs. It is compulsory to operationalize the “family-centered care” philosophical constructs (e.g. families and professionals share decision making, professionals use a strengths-based approach when working with families) and use these constructs to critique and strengthen practices, programs, or policies that affect NMD population groups.

These reasons mentioned above give us the rationale to create this Learning Partnership Project involving the exchange of knowledge, information, staff and learners across Europe, to educate and train the parents, relatives of people affected by neuromuscular disorders (NMD), adult patients, teachers, healthcare professionals, social workers and exchange of best practice between different organizations across Europe. All partners want to join the project to give and to receive important experiences among the various partners.

To participate in this project means to put together different capability to reach a good harmony, friendships, transnational and profitable collaborations on the thematic proposals. Through this Project we try to find a way to make compulsory for hospitals/social services to give parents the necessary support and informations to assimilate that their child is special, give guidance in the treatments available for the child’s pathology, to offer them a guide of centres for treatment, of centers for support from NGOs, support and how to access them if there are any available, information on networks of families in similar situation, and particularly the emotional support to accept the gift of taking care of the development of a special human being.

We have considered that everybody has something to learn from each other: parents from health care and social professionals, specialists from parents and patients, and everyone has to learn from others. This learning partnership is promoting European cooperation in the field of adult education between trainers and learners from different European countries. This cooperation offers the participants an opportunity to exchange experiences, practices and methods in their daily life and at work.

Aims
PRIMARY OBJECTIVE

To support, train and raise educative/social/health knowledge and competencies for affected parents or NMD adult patients and transfer these competencies from them to caregivers, for all become a kind of educating service providers: ”NMD professional parents and patients”.

SECONDARY OBJECTIVES – TO:
  • - identify, share and exchange best practices and activities in which each partner has experience regarding social inclusion of neuromuscular disabled people
  • - introduce the concepts of “family-centered care”, ”multidisciplinary team care”, and “parent-to-parent approach” and their fundamental role in facilitating education, rehabilitation, health care, social programs
  • - create a website (a future network) to offer free resources to parents, patients and professionals
  • - improve intercultural competencies, learning and training opportunities used in the member countries and organizations
  • - contribute to European priorities such as social regeneration, health, family learning.
TARGET GROUPS

Parents and NMD adult patients, teachers, health and social care professionals, volunteers.

PROBLEMS TO BE SOLVED

General need of knowledge about NMD multidisciplinary management and establish that family/patient needs/perspectives play a pivotal role in NMD educational/research/health programs, or social inclusion.

HOW TO ACHIEVE THE OBJECTIVES:
  • - by tapping the know how of all partners
  • - by the innovative approach in which the teachers/learners are both people with personal experience of NMD and care/education specialists
  • - through efficient organization for the preparatory work (demands/needs analyze), project activities (meetings and workshops conceptualized for each target group), project outputs: community needs analyze for educational/health/social inclusion policy recommendations, educational materials, Guidebook for NMD professional parent/patient
  • - by efficient cooperation/evaluation throughout the project: questionnaires and reports (meetings, workshops)
  • - by direct involvement and participation of all target groups to all activities of the project and inclusion of parents and patients to participate in mobilities, as role models for other learners
  • - through dissemination and mainstreaming activities: each partner will use/adapt their findings, recommendations and good practices in their institutions and will provide opportunities for distributing to community, other organizations and decision-makers, every participant becoming a project multiplier.

 

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