Families and the health care system about patients in a vegetative state

Vegetative stateSabrina Cipolletta, Alessia Bastianelli Margherita Pasi and Erminio Gius

Persons who accompany and assist a family day in a vegetative state, take charge of the psychological and social burden that this condition entails. The literature on the subject, developed mainly in the last twenty years, has shown that their experience is characterized by high levels of pain and discomfort, caused by economic factors, physical and psychosocial, which remain unchanged over the years.
We chose to investigate this issue by conducting research to understand how the family members of patients in a vegetative state live assistance and presence that daily offer their loved ones.
It has emerged as the caregivers feel that they are the only ones able to fully understand the needs of the patient, and then to provide the best service. To do this, put aside their interests, their activities, their own lives; live to enjoy better patient.

Presentations and publications
Cipolletta, S., Gius, E., & Bastianelli, A. (2014). How the burden of caring for a patient in vegetative statechanges in relation to different coping strategies. Brain Injury 28(1), 92-96.
Cipolletta, S., Gius, E., Bastianelli A. (2014). Caring a patient in a vegetative state: Increasing well-being by using different coping strategies. Poster presented at the 28th Annual Conference of the European Health Psychology Society, entitled “Beyond prevention and intervention: increasing well-being,” Innsbruck, Austria, August 26th-30th.
Cipolletta, S., Pasi, M., & Avesani, R. (2014). Vita tua, mors mea: the experience of family caregivers of patients in a vegetative state. Journal of Health Psychology. DOI: 10.1177 / 1359105314550348
Bastianelli A., Gius, E., Cipolletta, S. (2014). Changes Over Time in the Health Status of Caregivers of Patients in Vegetative State. Journal of Health Psychology. DOI: 10.1177 / 1359105314539533
Pasi, M., Avesani, R., Cipolletta, S. (2013). Your life, mors mea. The lives of the family members of people in a vegetative state. Paper presented at the 41 th National Congress SIMFER, Rome, October 13 to 16.

  Illness trajectories and psychological intervention with people with ALS and their families

ASLSabrina Cipolletta and Linda Amicucci

Project funded within the university projects, University of Padua, year 2013 (extended title: “How life narratives, cognitive reserve and psychological support may influence patient’s experience of amyotrophic lateral sclerosis”; responsible: Sabrina Cipolletta), and the Foundation Cassa di Risparmio of Padova and Rovigo within the Social Project 2012 - Support for Disability (extended title: "Psychological support at home for people with ALS and their families"; responsible: ASLA onlus).
Amyotrophic Lateral Sclerosis (ALS) is a chronic illness characterized by progressive degeneration of lower and upper motor neurons, with an incidence ranging between 1,5 and 2,5 cases per 100.000 individuals per year.
The patient undergoes a progressive muscle weakness, up to immobility. The onset is usually between 58 and 63 years and life expectancy is about 3 years.
The etiology is still not clear and at the moment there is no cure. At the individual level, the diagnosis of ALS is experienced as a death sentence. The sufferer experiences a biographical fracture, has the feeling that life is already over and that there is no more future.
On a relationship level, the diagnosis of ALS breaks the homeostasis of the family system, that undergoes upsetting changes from a structural, organizational, developmental and communicative point of view.
The family member, who usually becomes the patient’s main caregiver, spends on average 11 hours a day with the sufferer. This research is divided into two directions.
1 - To explore the relationship between patient's life narratives, cognitive reserve and experience of illness
The experience of illness is explored by conducting semi-structured interviews. Narratives collected in this way, integrated by a measure of the experiences made during the life, obtained by the Cognitive Reserve Index questionnaire, and a measure of the progress of the disease, are used to identify different illness trajectories.
2 - To verify the efficacy of psychological intervention with ALS patients and their families
Psychological support can improve the quality of life of patients and their families and have an impact on disease progression.
In fact, psychological status is an important prognostic factor in ALS: greater psychological well-being of the patient, the better his experience of illness. Interventions of taking charge of the patients and their families, also from a psychological point of view, are rare and there are no studies that evaluate its effects. The present study aims to fill this gap and explore the process founding this type of interventions in order to outline the guidelines for their design.

  Sexuality and new forms of family life

SexualityElena Faccio and Sabrina Cipolletta

In contemporary society, sexuality and family life are assuming new forms, and to understand them it is necessary to pursue a plural perspective, which starts from the reconstruction of personal meanings and embraces the possibility of a multiplicity of points of view. Homoparenthood, transexualism, sexual sadomasochism and sexual assistance to people with different kinds of difficulties are just some examples of the questions opening up in the wide scenery offered by this field of research. We ventured into it with the collaboration of different actors (some were also co-authors of our articles) who like us are interested in the topic, or have lived it or are still living it in first person. Thanks to them, we have conducted interviews, the results of which are summarized in the articles listed below, that report only part of the wealth of the experiences gained.

Faccio, E., Casini, C., & Cipolletta, S. (2014). Forbidden Games: The Construction of Sexuality and Sexual Pleasure by BDSM “Players”. Culture, Health and Sexuality.
Faccio, E., Bordin, E., Cipolletta, S. (2013). Transsexual parenthood and new role assumptions. Culture, Health and Sexuality, 15, 1055-1070.

  The organization of the family of a child with chronic illness

Chronic illnessSabrina Cipolletta, Valentina Marchesin and Franca Benini

Chronic illness of a child is a difficult and complex experience for the entire family. Previous research focused on the impact of this disease on the family. We have explored the family organization as a constitutive aspect of the child's illness progression. For this aim we carried out semi-structured interviews with 33 parents of ill children, in treatment at the pediatric hospice of Padua, we consulted their medical records and interviewed physicians, nurses and psychologists who care for children. We used a grounded theory approach for data analysis and we identified five main categories: the experience of illness and its evolution, family history, roles and resources.
On the basis of these categories, we identified four groups of families characterized by different ways of living the child's illness: possibility, denial, focus on illness and fight. Each of these experiences corresponded to a different evolution of the disease.

Presentations and publications
Cipolletta, S., Marchesin, V., Benini, F. (2013). The family organization of a chronically ill child: A qualitative study. Paper presented at the the 27th Annual Conference of the European Health Psychology Society, Bourdeaux, France, July 16th-20th.
Cipolletta, S., Marchesin, V., Benini, F. (2014). Family functioning as a constituent aspect of a child’s chronic illness. Under submission.

  Psychological Online Counseling

Online CounselingSabrina Cipolletta, Damiano Mocellin and Eleonora Frassoni

If we consider the increasing development of information technologies, the use of new methods of communication and the shifting of interactions even in the cyberspace seem inevitable.
Online counseling is a form of interaction in which user and professional communicate through the Internet, for example via email, chat, forum or webcam.
It is a relatively recent practice, still controversial and debated: this field may actually involve risks, but at the same time is full of great potentials.
For this PsyMed initiated two research projects on online counseling:

1. The first project consists of a qualitative analysis of the formation of the therapeutic relationship between the psychologist and the person who approaches the psychological counseling preferring an online modality to the traditional vis-a-vismodality. The research aims to explore the different features that therapeutic relationship assumes when talks take place via webcam (Skype), analyzing how the means of communication is inserted between the two communicating persons and influences their mutual being and staying in the relationship. For the purposes of the therapeutic process, the relationship established between psychologist and patient is the engine that allows any form of change: therefore it is of fundamental importance to understand how the means of communication used influences its formation.

2. The goal of the second project is to investigate the diffusion and the application modality of online counseling, that, for its characteristic of multidimensionality, requires the analysis of different aspects (theoretical, psychological, deontological, technical, normative, …). We want to identify more appropriate areas of intervention and to assess the accessibility according to the different purposes and kind of users. In particular, we want to get to the delineation of guidelines for videocounseling, that likely will be the most widely used online service tool in the future. Moreover we would like to stimulate professionals’ interest and involvement, thus creating a virtual community which is active in the research about online counseling in the psychological field.

In this regard, we built a tool to gather information about online counseling, and, in particular, that one carried through webcam: it is a self-assessment questionnaire addressed to psychologists, counselors and therapists interested in the topic.

We rely on your cooperation!

Go to the questionnaire

  Open Source Platforms

Open Source PlatformsSabrina Cipolletta and Giulia Bressan

Sit La Precisa, Leader of the group Sit, a world leader in the development and production of systems for security, control and regulation of gas appliances for domestic heating;

Confindustria Veneto for promotion and diffusion of results to the regional system of companies.

Extended title“Open source platforms for e-learning: comparative analysis, evaluation and guidelines for implementation in a company environment"

Project funded under the ESF Operational Programme 2007-2013, Axis Human Capital (COD. PROJECT: 2105/101/7/1686/2012).

Duration of the project:
May 2013-April 2014

The project overall aim is the strengthening of company innovation processes in the context of managerial collaboration and training through the use of web platforms.

Among the ICT tools (Information and Communication Technology) most commonly used we find the open-source e-learning platforms, that through the Internet or the Intranets allow to co-ordinately design and manage continuing training systems interweaving various functions: materials and information storage, personalization of learning, blended training (integration between distance learning and in presence learning), monitoring and assessment of the courses quality, integration of learning programs so far fragmented and episodic, alignment of professional content with company strategic goals, contamination and enrichment of skills through the creation of company community.

The project is divided into the following specific objectives:

Elaboration of the state of the art on web platforms implementation cases in company environments for distance training and distance collaboration, also through the exploration of company cases and best practices that currently exist;
Identification of the new training needs and the means to solve them within companies;
Codification of a process of co-design and company decision with respect to the use of a e-learning platform and distance collaboration;
Elaboration of guidelines for analysis, assessment and implementation of an e-learning platform in a company context;
Codification and transfer of good practice to the Veneto regional system of companies, useful both for large companies, both small and medium-sized companies interested in training innovative programs and tools, that have to be adopted also in a network integrated perspective
Diffusion of an open source tools using culture as a method of development that harnesses the power of peer review and the process transparency, ensuring a higher quality, reliability, flexibility and cost reduction;
Creating a network of cooperation between universities and enterprises in the use of e-learning platforms to contribute to the improvement of the performance of the staff employed in regional business system.