Background: Rett syndrome has considerable effects on the quality of life of affected children, impairing everyday activities and potentially impacting the life of both the caregivers and the family. Our aim was to explore the experiences of a group of caregivers of children with Rett syndrome with regards to living and caring for their children. Methods: We conducted a qualitative case study to examine how 31 caregivers of children with Rett syndrome perceived living with their children. Data were collected through in-depth interviews, focus groups, researchers’ field notes and caregivers’ personal documents. A thematic analysis was performed following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline. Results: The experience of being a caregiver of a child with Rett syndrome was expressed as being akin to an “obstacle course”, and was described via three main themes: (a) looking for answers, with two subthemes identified, namely ‘the first symptoms’, and ‘the need for a diagnosis’; (b) managing day to day life, with the subthemes ‘applying treatments’, and ‘learning to care’; and (c) money matters. Conclusions: Rett syndrome has a considerable impact on the lives of the caregivers involved. The health-care process and the management of economic resources are some of the aspects highlighted by caregivers. These findings have important implications for the planning of support services, health systems and health policies.

KT appears to improve the time to failure of the extensor muscle of the trunk obtained using the Biering-Sorensen test. These findings suggest that KT influences processes that lead to muscle fatigue and that KT could be effective in the management of LBP.

ObjectivesThe aim of this study was to explore the experiences of doctors and nurses caring for patients with delirium in the intensive care unit (ICU) and to describe the process of delirium management.SettingThis study was performed in 5 ICUs located within 4 hospitals in Madrid (Spain).ParticipantsPurposeful sampling was performed which included (1) doctors and nurses working in ICUs, (2) with >1 year experience in the ICU and (3) clinical experience with delirium. 38 professionals participated (19 doctors, 19 nurses), including 22 women and 16 men. The total mean age was 39 years.DesignA qualitative study using focus groups.Methods7 focus groups were held to collect data: 3 nurse focus groups, 3 doctor focus groups and 1 mixed focus group. Each group comprised 6–10 participants. A semistructured questions guide was used. Thematic analysis methods were used to analyse the data.Results3 themes were identified: (1) the professional perspective on delirium; (2) implementing pharmacological and non-pharmacological treatment for delirium and (3) work organisation in the ICU. The professionals regarded patients with delirium with uncertainty, and felt they were often underdiagnosed and poorly managed. Doctors displayed discrepancies regarding pharmacological prescriptions and decision-making. The choice of medication was determined by experience. Nurses felt that, for many doctors, delirium was not considered a matter of urgency in the ICU. Nurses encountered difficulties when applying verbal restraint, managing sleep disorders and providing early mobilisation. The lack of a delirium protocol generates conflicts regarding what type of care management to apply, especially during the night shift. A degree of group pressure exists which, in turn, influences the decision-making process and patient care.ConclusionsPatients with delirium represent complex cases, requiring the implementation of specific protocols. These results serve to improve the process of care in patients with delirium.

Background: Parkinson’s disease is a neurodegenerative disorder that causes impaired motor functions. Virtual reality technology may be recommended to optimize motor learning in a safe environment. The objective of this paper was to evaluate the effects of a novel immersive virtual reality technology used for serious games (Oculus Rift 2 plus leap motion controller—OR2-LMC) for upper limb outcomes (muscle strength, coordination, speed of movements, fine and gross dexterity). Another objective was to obtain qualitative data for participants’ experiences related to the intervention. Methods: A mixed methods intervention (embedded) study was used, with a qualitative design after a technology intervention (quantitative design). The intervention and qualitative design followed international guidelines and were integrated into the method and reporting subheadings. Results: Significant improvements were observed in strength (p = 0.028), fine (p = 0.026 to 0.028) and gross coordination dexterity, and speed movements (p = 0.039) in the affected side, with excellent compliance (100%) and a high level of satisfaction (3.66 ± 0.18 points out of the maximum of 4). No adverse side effects were observed. Qualitative findings described patients’ perspectives regarding OR2-LMC treatment, facilitators and barriers for adherence, OR2-LMC applications, and treatment improvements. Conclusions: The intervention showed positive results for the upper limbs, with elements of discordance, expansion, and confirmation between qualitative and quantitative results.

Rare diseases face serious sustainability challenges regarding the distribution of resources geared at health and social needs. Our aim was to describe the barriers experienced by parents of children with Rett Syndrome for accessing care resources. A qualitative case study was conducted among 31 parents of children with Rett syndrome. Data were collected through in-depth interviews, focus groups, researchers’ field notes and parents’ personal documents. A thematic analysis was performed and the Standards for Reporting Qualitative Research (SRQR) guidelines were followed. Three main themes emerged from the data: (a) essential health resources; (b) bureaucracy and social care; and (c) time management constraints. Parents have difficulties accessing appropriate health services for their children. Administrative obstacles exist for accessing public health services, forcing parents to bear the financial cost of specialized care. Time is an essential factor, which conditions the organization of activities for the entire family. Qualitative research offers insight into how parents of children with Rett syndrome experience access to resources and may help improve understanding of how Rett syndrome impacts the lives of both the children and their parents.