Table 1.
Theoretical framework | The researcher’s approach was based on a constructivist paradigm. This was built on the assumption that human beings construct their own social reality, and understanding is built via increasingly nuanced reconstructions of individual or group experiences. |
Beliefs | Rett Syndrome (RS) typically becomes apparent during the first year of life, presenting as a neurodevelopmental delay. This experience can be particularly traumatic, affecting family dynamics. It is necessary to examine the parents’ perspective regarding relevant aspects that impact their daily life. |
Motivation for the research | To understand the parents’ experiences and how they manage health and social resources for their children suffering from RS. The limited availability of international qualitative research on this subject and the lack of research conducted in Spain warrants the need for qualitative research examining the parents’ perspective. |