Promoting Healthy Living and Well-being for Parkinson Patients through Social Network and ICT Training
the project aims at developing an innovative Web-based Training and Social Community System which targets Parkinson patients, Caregivers and Health Professionals and offers learning contents and information packages, and supports tools to monitor, diagnose and improve Parkinson patients’ condition and social learning.
Success factors • Multiplicity of resources offered: materials are online and in offline versions. • Flexibility: users can use the full system for learning and communicating with others and to monitor the disease or just one of the features as they prefer. • Interest shown by stakeholders from other countries outside the consortium. • Many valuable dissemination activities were carried out during the project lifetime good exploitation opportunities. • An excellent integration of the LiveWell platform in Parkinson associations from Spain, Romania, Slovenia, UK and Iceland. • The elaboration of Deliverable 5.3-Lessons learned and Best Practices - a valuable guide for the stakeholders in the field in undertaking similar projects. • Contents of the training and informative materials are available in 7 languages and relates to daily lives issues of both.Weak factors • Constrains of the associations and charities in proving full support to the implementation activities. • Low level of ICT usage by the end users • Problems in involving patients and caregivers in face to face activities and events due to constrains associated to the disease and their average high age
One of the most innovative aspects of the project was the approach to the contents development and testing phase as the consortium decided to involve the end-users since the beginning of the project implementation. We believe that this was a turning point in the project implementation strategy as the targets groups (Parkinson’s Patients Associations/Charities and patients and caregivers) presented some specific constrains or fragilities that can be summarized as follows: 1. Parkinson’s Patients Associations/Charities suffer from some administrative and operational difficulties most of the cases related to lack of financial resources or support, preventing them of performing at a high technical level due to the lack of qualified staff. Most of the qualified staff works on a volunteering basis with severe time restrictions. 2. Parkinson’s patients and caregivers suffer from a strong social stigma due the physical impact of the disease (tremors, movement blocks, sudden loss of balance, speech problems etc…) and, unfortunately, are not open to socialize and to participate in events with other persons not affected by the disease. They often prefer to be at home even if that is not beneficial for their wellbeing and health condition. The associations/charities estimate that a large percentage of persons suffering from the disease are not registered as associated members and thus, do not participate at all in the therapy sessions, group sessions and leisure activities that are offered and promoted. This caused some difficulties and constrains when we needed to be in direct contact with patients and caregivers to perform interviews or focus groups at different stages of the project implementation and in a regularly basis. 3. Both the target groups and end-users are lacking ICT-based skills or resources to use regularly at large computers and the Internet. We have come to the conclusion, through the implementation of the project that associations/charities do not use ICT-based resources or the Internet in their activities, besides using the email, and do not have internal staff sufficient skilled to use those resources. Also patients/caregivers, in most of the countries (Iceland can be considered as an exception), do not use regularly computers or Internet and do not have at their homes computers or internet connections. This might be related to the fact that on most of the cases they are aged persons, didn’t use it before their condition and have difficulties in becoming regular users when affected by the physical symptoms of the disease. 4. Patients and Caregivers where not expecting to see too much contents related to the disease or medication, as they were already well informed about it by their doctors/therapists, which is true in the case of patients (and their caregivers) diagnosed some years ago. This made the consortium to rethink the approach to the contents design and development of the informative and training materials in order to fulfil end-users expectations and include more informative materials presenting contents that they could find useful for their daily lives (diets, coping strategies, etc.) but also on how to deal and be prepared to face the changes that the disease brings in terms of social, marital and working relations, aspects that are often neglected even by the associations/charities. However we have made all the efforts to implement an innovative methodological approach that can be summarized as follows: • During the needs analysis phases and besides the desk research we have done interviews with health professionals and representatives of Parkinson’s associations and charities and after that we have performed focus groups involving both patients and caregivers. • During the development and testing phase a co-design approach was implemented to involve the end-users in the development process assuring that the final outcomes would be in line with their needs and expectations. It was decided to prepare and implement a pre-test session with a limited number of participants to test a draft version of some informative and training contents and also some features of the platform. This pre-test session was implemented in a “co-design” approach, collecting feedback in real time from the testers. This session allow us to have an earlier assessment of both the contents and of the LiveWell platform features, feasibility and accessibility and to understand if they are in line with the future end-users needs and expectations.