Welcome to the 9th EAPS Congress Programme Scheduling

Abstract Body

This practical and interactive talk will focus on why obtaining research funding is beneficial, where you could look (broadly) for funding, how you need to write your grant application to be successful and lastly what are the common pitfalls and reasons that grant applications are unsuccessful.

Abstract Body

Research on children / young people's participation and participation in care is limited. The existing research has shown that children's participation in care varies, as does the way in which they participate. Factors that limit children's participation in care include factors such as not knowing the care staff, difficulty contacting care staff, not wanting to hear negative decisions, fear of being ignored or not being believed. It has also been shown that in many cases nurses do not take the child's expressions and reactions seriously but are guided by myths or intuition. Other problems are that they do not treat the child as a whole person with specific needs.

According to the Health Care Act, children and young people must be involved in decisions concerning treatment and care. They also have the right to information about their illness and treatment in such a way that they understand the meaning of what has been said and can make well-informed decisions.

The purpose was to increase young people's participation in in care in collaboration between young people and care staff. The purpose is also to describe and evaluate this process.

This study is based on the constructivist assumption that the findings are co-created by the researcher and the participants in the study and the sociocultural perspective, meaning knowledge is seen as a creation in interaction with the subjects and the context. This research, which involves both the researchers and the participants in close collaboration, is a central feature of action research. We created a panel of 7 adolescent’s between 13-18 years of age who have regular contact with the children's and young people's hospital and a panel of health care workers.

The two panels discuss the same topics, involvement, but do not meet until the end of the research. Using this research strategy, we aimed to disclose the gap between the real and ideal and uncover the area of improvement.

The present study arose from a “problem-driven” perspective, that is, that the research was motivated by clinical issues. Researchers who start from this perspective attack a "real-world problem". This means that the researcher is looking for something of significance for the practical context in which the researcher is active, but which is hidden.

The data collection is based on a special group of informants with a specific experience. Their relationship to the situation and the problem is crucial in order to obtain data.

The results conveyed involvement in the health care process in diverse ways and to a different depth. This is highlighted in the theme Clarity with the under themes Security and Being accepted. However, the theme Exclusion with the under-theme Rejection revealed a non-caring approach where no caring relation could be established.

Background and Aims

The widespread implementation of newborn screening represents a paradigm shift in the diagnostic pathway for families having a child diagnosed with cystic fibrosis (CF). The aim of this study was to gain knowledge regarding the everyday life experiences of parents after having a child diagnosed with CF.

Methods

The study takes a phenomenological-hermeneutical approach. Narrative semi-structured interviews with the parents of 16 newborn children were conducted and thematic content analysis was used to identify key themes. Participant observations and field notes were used to complement interview data.

Results

The analysis revealed three themes: First, when getting the diagnosis, there was a profound difference in the parents’ experience depending on whether the diagnosis was communicated by a medical doctor from the CF team or by a pediatrician at another hospital. Second, during the initial meeting and the subsequent relationship with the CF team, the knowledge and calmness that the doctors and nurses exhibited meant everything to the parents; most families voiced that they did not wish to be hospitalized, and reflecting on this retrospectively they felt that this was the right decision. Third, regarding everyday life post-diagnosis, most parents described having anxiety and concern for their child's future.

Conclusions

Upon receiving a diagnosis of cystic fibrosis for their child, parent experiences highlight important elements that ought to be implemented into the patient’s continuity of care. In particular, the cystic fibrosis specialist team is of fundamental importance to the parental ability to accept and cope with the diagnosis and the new living conditions.