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.
Autism Spectrum Disorder (ASD) is a constellation of social deficits and repetitive sensory-motor behaviours. Aquatic therapy (AT) may be effective in improving the social interactions and behaviours in children with ASD. The objective of this study was to evaluate the effects of an AT program on social competence and quality of life and to understand participant’s experiences related to the intervention by obtaining qualitative data. A mixed methods intervention study was conducted among 6 children with ASD and their parents, with two research phases in a concurrent embedded design (an aquatic intervention as the quantitative design and a qualitative design in second step). The intervention and qualitative design followed international guidelines and were integrated into the method and reporting subheadings. Significant improvement was observed in the physical competence (p = 0.026) and important improvements in school functioning and aquatic skills, with no adverse events. Qualitative findings described: the meaning of AT intervention, patterns of behaviour and activities changes, social communication and social interaction. The aquatic intervention showed positive results for the social and physical competence, with elements of discordance, expansion, and confirmation between quantitative and qualitative results.
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.
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.
Cerebral palsy results in the progressive loss of motor functions, with a negative impact on daily activities and participation. Despite the well described benefits of aquatic therapy in children, little is known about the effects of the same in school settings. This study aimed to describe the experience of children and youth with cerebral palsy participating in an aquatic therapy program within a special education school considering their educational and therapeutic perspectives. A qualitative descriptive case study with embedded units was developed, comprising 27 participants. This study employed purposeful sampling to include children and youth with cerebral palsy from the Asociación Ayuda a la Paralisis Cerebral (APACE) special education school, together with their parents, the special education teachers, and health care professionals. Data were collected via non-participant observation, semi-structured and informal interviews, focus groups, and researcher field notes. A thematic analysis was conducted, revealing the following themes: (a) the connection with the environment; (b) postural improvements and mobility; (c) the opportunity to perform tasks; (d) learning and transfer. A motivating environment leads to physical, cognitive and social benefits, both at school and in the home. Aquatic therapy was viewed as a means for learning and participation. These findings may enhance understanding regarding the potential benefits of implementing multidisciplinary aquatic therapy programs in specialist school settings.
The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers’ field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress.